One Precious Prem and Another on the way...

Doing it my way....achieving an intervention free breast feeding relationship

2010-10-16T22:57:00.000+10:30

We had a very difficult time developing a strong breast feeding relationship with Nakita and this time I was so determined to avoid any unnecessary interventions, I was educated, I had her Paediatrician on our side and I had put everything in place to make this work.

With Anastasia in the SCN, I was half expecting her to see her with a NGT (Nasal Gastric Tube) in her nose or an IV in her arm, but a few hours after delivery she was brought into my room, on oxygen, but her only other attachment was the monitor taped to her foot. She was tube, wire and line free. I was thrilled... step one ~ ok we have made it through the first few hours... We then brought her out of the isolette to see how she would go with some skin to skin, my gown was opened up and she was placed on my chest and within minutes her saturations began to stabilise, she was where she was supposed to be and she was improving without the O2, I had heard of it happening many times, but to experience myself just brought tears to my eyes.... it just shows how amazing a mothers touch can be.....

We then attempted out first breastfeed...... it was just like my first breastfeed with Nakita , she just licked and played, I soaked it all up as we had to wait days before we were able to try with Nakita and here I was only a few hours later. A MW then bought in a bottle of formula, it had 20ml of a high calorie formula in it, she said that if she didn't had a good suck then she would be giving he the formula :o It was at this moment I quietly begged Anastasia to suck, I tickled her under the chin, I started doing all the things I used to do to get Nakita to feed. I pleaded her to suck, we had come so far I wasn't going to give up. The MW left the room and minutes later she started... she latched on, and started to suck, and she was strong, I was beside myself, tears pouring down my face, the MW came back in to check on us and was shocked to see her sucking, I was beaming, she sucked for long enough and she passed the "test" the formula was put away for the time being.

This was then repeated for the next few feeds, but with each feed Anastasia grew stronger, she sucked longer and my Colustrum was flowing, I couldn't believe it with Nakita to get any Colustrum was like trying to get blood out of a stone, but this time and after a CS and not a VB the Colustrum was there and I was sustaining my baby girl with it.

Over the next few days we began to battle the scales, she had lost almost 10% of her body weight "the limit" and the MW's were good at reminding me... but on the morning of day 3 her Paediatrician came in to check on her and he said they should just throw away the scales, they cause too many mothers too much stress, and he even said that the 10% 'limit' really shouldn't matter either, you should just look at the baby and look at the mother, if the baby looks good and the mother is happy and comfortable then why intervene, sometimes we just need to give babies and mothers more time, without all of the pressure that comes with a set of scales.

My confidence was given a huge boost, our Paed wasn't like all the rest, he wasn't setting limits or guidelines, I had my ammunition against any MW that said otherwise. On the evening of day 3 my milk started to come in, I had started Motilium that morning as we trying to avoid going through the supply issues I had with Nakita rather than leaving it for a week or so. The following two mornings she had gains of 30 and 40grams, woooo hoooo!!! I was doing it and Anastasia was doing it, we were forming a great team, she had a powerful suck, her feeds were lasting 20-30minutes per side, and she was settling well in between feeds about every 3 hours!!!! This was such a big difference to her sister, by the time we were getting breast feed established her feeds were lasting 1 1/2 hours, followed by settling and then I would have to express and byt the time I was finished we would be starting the next feed, this cycle went 24/7. Yet here I was almost twiddling my thumbs!

I had become very engorged and this caused issues, Anastasia was struggling to attach, we had gone from a great attachment to fissures of both nipples, they were bleeding a lot and very painful, but I knew it would take time to heal and Anastasia to grow and improve her attachment again. So I used a combination of EBM and air drying to help them repair, I asked for a nipple shield in attempt to reduce further damage and I would express for 5 minutes prior to each feed to make the attachment easier. All of my experience from last time was flooding back to me, I was setting the rules and doing it my way, I was confident that I knew what I was doing and I wasn't going to be swayed by each different MW with their own opinions.

She then started to lose weight again, the MW's then started to threaten Formula again, but I stood my ground, the losses were not huge and she was still above the "10%" mark, she was having plenty of wet and dirty nappies, so I knew she was getting enough, it was just going to take some time. Her Paed came in again and reassured me that he thought the same, Anastasia had developed a wicked tan (aka jaundice), but we agreed that it wasn't that bad, and discussed that her older sister was jaundiced for three months, and it was breastfed jaundice, Anastasia was still bright and alert, and doing all the right things, so once again we avoided intervention and decided to just give her more time.

It was then decided that we were both up for discharge, my recovery had been slow and challenging, but once we got the meds sorted out and some great support and ideas from my online community I was improving each day. There was nothing that the hospital was going to be able to do for Anastasia that I was able to do myself, her Paed was confident that I had done it all before so was happy for her to be discharged with me!!!!

OMG!!!!!! It has happened!!!!! We didn't make it to full term but we did get our take home baby!!!!! WOOOOOOOOO HOOOOOOOOO!!!!! I was going to be walking out of this hospital with my baby in my arms, I was not going to be leaving her behind in the care of others, oh the joy and the elation. We did it!!!!

After everything that we went through so much just to keep her safely tucked up inside, we all made sacrifices to make it just one further day and then the extra week, we battled through so many complications, went through the lowest of lows and celebrated the highest of highs. Yet after all of it we have come out the other side and every single moment has been worth it because we got our TAKE HOME BABY!!!!!!!

Welcoming Flicker Earthside.....

2010-10-16T22:33:00.001+10:30

I was up early on Thursday 30th of September, I came downstairs and left Roy and Nakita peacefully sleeping, hoping to have just a little more time to myself, I jumped on my computer and made my final post to my blog and did a final check of my emails as my work laptop was going to be off for the next week or so... a short time later I heard noises from upstairs and it was time to get organised. It was so bizarre to be getting ready to go, nothing at all like the arrival of Nakita, my waters had broken and we made our way into the hospital in the early evening... this time I prepared breakfast for Roy and Nakita, made sure that Nakita's day care bag was packed for the day, we had decided that rather than getting anyone to look after her, that we would make her day as normal as possible, at 7:20 am we headed off, dropped Nakita at day care, I struggled to hold it together, I couldn't help by cry when I dropped Nakita off, I had to walk out of the room because she was starting to get upset as well, Roy stayed and made sure she was happy and settled and we made our way to the hospital.

We arrived at the hospital at 8am, made our way up to maternity and we were taken to our room, on the way the MW yelled out Mon! Victoria is here! I was absolutely thrilled!! Mon was one of the MW's I saw nearly every week at my OB's office, she was supposed to be on night shift that day but was trying to switch to day shift and I was so excited to hear that she was on, she would be coming into surgery with us.

Our room was lovely, it had a large bay window and balcony, I set about unpacking my bags, remembering things I had read on various CS threads on the forums, about making sure that you have everything you need at waist height or higher, it was a bit like unpacking when arriving at a holiday destination except I was getting more than a holiday I was having a baby!!!!! Mon came in a short time later and took my BP was up, still contracting away, we listened to Flickers heart thumping away.... so precious to hear it for the last time... We then chatted about what we were hoping to do with Flicker once delivered, it was all dependant on how well Flicker was doing, if all was well I would be able to keep Flicker with me in Theatre and in recovery if I wished. I wanted the opportunity to hold Flicker in all that newborn gooey goodness if possible, to try and breast feed as soon as possible, and to make sure we got lots of photos which we didn't get with Nakita, we only have photos of her in the humidicrib and our first family photo was when she was a few days old and we were doing a gavage feed.... I then took my final tablet Nifedipine, 13 weeks these small round tablets had kept me going, it was going to be weird not taking them every few hours..... I then handed over to Mon my left over Nifedipine and Progesterone, I had spoken with my OB on Tuesday asking if she would be able to use my left over meds... she was blown away by my offer, but I couldn't bear to see them be wasted sitting in our medicine box, and they weren't exactly cheap either..... She had given me some of my early doses of Nifedipine from her "stash" so that we could start the meds straight away rather than any delays of waiting for prescriptions, and for that I was so grateful. They were no use to me now and I know that they will go to another mother or a few mothers who found themselves in similar circumstances.... it was like a final cleansing....

We were then visited by the Anaesthetist, who went through the procedure for the Spinal and the local to be done after the CS, it all seemed pretty straight forward and I didn't have any questions.

Then our Paediatrician came in, he was Nakita's Paediatrician when she was transferred out to the same hospital, he is a bit old school, but he is brilliant, he really listens to the mother. I explained what I was hoping to achieve, that we wanted to really have a positive breast feeding relationship from the start, he was very supportive of this and we were confident that he was "on our side".

Finally our OB came in, it was so lovely to see her, she had been there for us every step of this rollercoaster and I was just so happy that she was the one who would be bringing our little miracle earthside. She said they were running about 1/2 hour behind so it looked as though we would be heading in at about 11:30am, which was fine, she went over the procedure again, and we were happy with it all, the screen would be dropped so that we would be able to see our baby arriving and I would get the first touch after she was delivered... so that was it....

Roy took my final belly shots, we chose out a couple of outfits for Flicker to wear at 00000 and a 0000, depending on how big our little one was going to be, and they were taken and placed in the warming box... we sat down and I tried to read a book I had started a few weeks earlier, but as I hadn't let a bookmark in I couldn't remember for the life of me where I was up to so I just sat and looked out the window, thinking wow we are about to have a baby!

Before we knew it a MW came in and said well we are off in 5 minutes... crap we still had the laptop out, neither of us had gotten changed, we thought we had more time! So Roy bolted the laptop out to the boot of the car, I quickly got changed, Roy ran back in a got changed and I hopped on the bed and we were off. The excitement was building as we made our way down the brightly lit corridors to the theatre suite, after fighting for so long it would soon be all over.... when we arrived at the theatre I hopped off the bed and walked into theatre, it was good to take those final steps, walking in to deliver my baby....

At 11:10am I hoped onto the table and the anaesthetist began the preparations for the spinal, my OB and Paediatrician and Mon all said hello and everyone else was introduced to us. It was a stark comparison to the environment in which Nakita was born, a dimly lit relatively quiet birth suite, even with a room full of people it was much more gentle.. the theatre was bright, clinical and sterile, there was music playing and everyone was talking jovially about a conference that most of them were heading to interstate later that day....

Just as the anaesthetist was putting in the spinal, I experienced what was to be my last contraction, it was my body putting in its last ditch effort, in so many ways I am glad that is when it happened as I will never forget that moment. I focussed on holding the second anaesthetists and Roy's hands, trying not to move as the contraction rose, I should have said something but the words would not escape me. It wasn't long and it was over, the Spinal was in and working, I was then assisted to lie down, the table was then tilted, the catheter put in (so glad I couldn't feel that happening!). The BP monitor strapped around my arm, gel put in my hand, monitors attached to my finger and an oxygen mask, the screen was then put up and the drapes put in place.

Roy and I chatted about the upcoming grand final rematch, and some other completely unexciting topics, and before I knew it I felt as though a live was being drawn below my tummy, I knew that she had just made the first incision, this was it.....

There was pressure and pulling and tugging, not at all uncomfortable, just a little bizarre, my OB said I hope that your little one is going to be a lot easier to get out than they little boy she had just delivered a short time earlier who was a bit stubborn and got stuck. Soon after my OB announced ok are we ready, I told Roy make sure the camera is ready I want lots of photos! The screen was then dropped, Roy started snapping and our precious little baby GIRL arrive earthside, she made a small cry, my OB then brought her over where the screen had been dropped and I was able to touch her :cry: we were asked if she has a name and we said no we hadn't decided, we wanted to get to know her first. She was then taken over to resus to get checked out by our Paed. Roy went over and took more photos and then cut the cord, "Flicker" was give some oxygen to help her get going, she was wrapped up and then brought over to me and I was able to hold her, we then got the family photos that we didn't get with Nakita and we just soaked in all her newborn goodness for a minute or two.

It took us a week to name "Flicker" approximately the same amount of time it took us to name her big sister give or take a few hours!

Anastasia Natalia Juliette

Weight: 2720grams / 6lb

HC: 34cm

Length 48cm

Apgars: 7 (1min) and 9 (5min)

She was blowing bubbles and there were significant pauses in her breathing, her Paed became concerned as did we, so she was taken back over to resus and the decision was made that she needed to go to the nursery now. I sent Roy to go with her, I was fine just needed to be stitched up and go through recovery. Mon said that if she is ok with will bring her down to recovery. I said it doesn't matter, just make sure that she is ok, I can have all the cuddles I like later on.

So once again I was left behind to be stitched up and my baby taken away... but this time it was easier, I had expected that it could happen and after all we had been through I just wanted her to be safe.

My OB was able to have a good look at my uterus and at that stage my septum was 4cm long, but it was not able to be removed, it is was she would have done it then so that if we tried again in the future hopefully we would be able to avoid some of the complications we experienced this time. The placenta was small, which was to be expected so no surprises there either, but it had done a a pretty good job considering! There was also a large blood clot behind the placenta, which is most likely the culprit for the many bleeds that I experienced throughout the pregnancy, we were lucky it didn't result in anything more sinister.

The stitching was then completed and the anaesthetist brought in the ultrasound and placed a local in either side of my stomach and then I was off to recovery. Anastasia's Paediatrician came down to let me know that he was concerned about her developing Hyaline Membrane Disease (Respiratory Distress of the Premature Infant), if she did she would need to be transferred to the NICU at the WCH, so he was keeping a close eye on her for the next few hours and if she stabilised with the O2 in the humidicrib within a couple of hours she should be able to stay, but if they left her that things could change rapidly so they put into place extra precautions to ensure that we had the best chance of keeping her with us.

A short while later I was taken up to the SCN to see her, the wheeled my bed up as close as we could get to the isolette, Mon turned her head over so I could see her face and she got really grumpy and upset so I said to switch it back so she was happy again. After a short stay I then was taken back to my room to settle into bed to start my recovery....

Reflections of our pregnancy journey.....

2010-10-16T22:08:00.000+10:30

This is the first in a series of three posts which are going up tonight, reflecting on our journey in brief before we make those final steps to meeting our precious little miracle.....

The Prelude

In late 2009 we decided that in the new year we were going to try and provide our daughter with a sibling, this is a decision that wasn't taken lightly, our first daughter was born at 33 weeks, while in the prem world isn't particularly early, she arrived in a big rush, her birth story is here, and while her time in SCBU was reasonably smooth, with minimal breathing issues, sepsis, low bls, jaundice and took a few weeks to learn how to feed, she has long term respiratory issues and had required numerous hospitalisations and is on a raft of medications to keep her out of hospital. Something we were desperate to avoid this time round. We knew that going into this pregnancy that before we even started I was classed as high risk of having another prem as the reasons she arrived early were a combination of maternal on and other pregnancy related complications.

The Pregnancy

We were extremely blessed to discover that we had become pregnant during the first month of trying, and estimated our EDD to be about the 27th of October 2010. I made our announcement on the forum and it was with gusto that I stated we were going to avoid the premmie rollercoaster and grow a full term take home bubba. We wanted to experience giving birth and taking your baby home with you, not leaving them behind in the hospital after discharge in the care of others, a baby should be with its parents..... not isolated in a plastic box surrounded by machines that go "ping" and constantly being poked and prodded by with needles and tubes, wires and lines.....

For the first couple of weeks everything went smoothly, very few tweaks and twinges it was certainly different to my first pregnancy, but as everything had "stretched" before it wasn't surprising. On the March long weekend we had a photo shoot which had been postponed from January due to DD having been in hospital, it was a beautiful crisp Sunday morning, wandering aimlessly through the east of the city, looking for those unusual creative locations to capture our family of three (plus bub tucked up safely inside my belly), we were so happy so carefree, I look back at the photos now and am touched by the pure joy that resonates from the images, knowing that that are the only photos which include all of us....

The following evening I was cooking dinner, Roy was in the office and Nakita in her highchair eating dinner, and out of the blue was a gush, I stopped in my tracks, bolted for the bathroom, wondering what had just happened, it was at this moment that our lives started what was to be one hell of a rollercoaster ride... I was bleeding, bright red fresh blood; it had soaked my underwear and jeans. I was shaking, horrified and scared, I yelled out to Roy, he came running, tears were pouring down my face... I had bleed while pregnant with Nakita but it was never to the extent I was experiencing this time. Roy ran and grabbed the phone book and my mobile and I called the WCH, as I hadn't been to my OB yet and wasn't sure who to call, and thought the WCH would be the best option. They said to come in immediately and would see what they could do; I was 7 weeks 6 days. I went upstairs got cleaned up and changed, grabbed my handbag, phone and car keys, gave Roy a kiss and a warm hug and blew a kiss to Nakita trying to hold myself together so she didn't see me upset.

I drove into the hospital and was seen quickly, they checked my loss, undertook a blood test to check my HCG levels to see if they were high enough to warrant a scan, and I went back to the waiting area to wait for the results. Within 1/2 an hour they asked me to start drinking water and a while later they came and got me for a scan. The Dr on call was lovely, and went through what she was going to do, she was then interrupted to take a call from a country hospital where they had a mother labouring and the staff needed assistance, 10 minutes later she returned and we went through it all again. She started the scan, I was desperate to see the screen, but I could only just see it, she was quiet for a majority of the time, will a lovely MW held my hand. The Dr confirmed that there were two sacks, one slightly behind the other, and that she thought that there might have been a HB in one of the sacks, I was pretty certain that I could see she had picked up a HB but couldn't confirm if she had seen as HB in either and that I would have to get a scan on the Rolls Royce Machine in the next few days to confirm either way... My HCG levels were 32,000 @ 7 weeks 6 days

So I left the hospital in a daze not really taking in what she had just said and doing what I needed to do to get home and back into the arms of my Roy. We both cried, we didn't have a clear answer, nothing could be confirmed.... So I went onto my forums and asked for support and prayers for the next few days, this was not something that I was going to be able to go through alone or just with Roy, I needed to know that there were people out there who had been through something similar or who just understood what I was going through and to give us hope... and the community was there for us for the next few days and weeks and months... supporting us and praying for good news.

The following day I booked in for my scan at the WCH which the earliest appointment I could get was Thursday morning, 2 days time. I then rang my OB's office to see if she would like to see me and she made a space for me just over an hour to see her. I remember sitting in the waiting room and seeing some beautifully pregnant mothers, close to the end of their pregnancies and how I would love to be in there position to skip what was to come in the following days, weeks and months....

I didn't wait long and went in to see my OB, went through what had happened and she was shocked that they hadn't done an internal scan as at this gestation an external US wouldn't show a lot. She then commenced the scan and turned the screen so I could see it clearly, confirming that I had a septate uterus, there was a septum down the centre of the uterus, dividing it into two halves, this alone puts me at risk of Pre Term Delivery. Immediately we could see the two sac's, she was able to confirm that in one sac (Twin A) we had a precious little baby with a strong beating heart 125BPM, Flickering brightly, stronger than it was the night before, she then went over to the second sac (Twin B) there was no heart beat :cry:.... To complicate things further the two sacs were joined just above my cervix, so we were at risk of Twin B actually dragging Twin A with it during the miscarriage..... She then did a check of my cervix length and it was 2.1cm, very short for this early in a pregnancy, and may indicate that I had a Incompetent Cervix, so would be on fortnightly scans to check the length, but we couldn’t put a stitch in until the 12-14 week mark, and I need to pass the twin, clots and blood before she would be able to do the stitch. So from here it was going to be a waiting game, there was little we could do except hope and pray...... I was to still go to the WCH for the scan and also get another HCG result to see if that is giving us any indication as to what the future holds for us and our babies...

The following day was emotional, I just didn't know what to think, I was scared... I named Twin A... Flicker...

That night I was woken suddenly at 1am, excruciating pain, and another large gush of bright red blood, I was terrified, I didn't know what was happening... was I losing Flicker as well.... I lay in bed talking to Flicker...I am sending you all my strength and courage Flicker, my little fighter, I have no idea how many times I repeated this to myself and Flicker, but eventually I fell asleep.....

Later that day I went into the WCH for my next HCG Blood Test and then over for the scan, the first thing the sonographer did was zoom in and pick up Flickers HB, it was up to 135BPM, our precious little buba was getting stronger.... but now there were no longer two complete sac's, Twin B's (Firefly's) had ruptured, I believe that this is what I experienced at 1 am that day... the scan continued with numerous measurements taken, the Sonographer then called in the OB, who sauntered into the room, saying hello and soon followed with "You are not going to get to Full Term"... wow.... I was blown away, such a negative comment so early....

The following afternoon we received the HCG results from the day before, they were not great 38,700, they were supposed to double in approximately 90 hours at this stage, and they were no where near doubling... it had been more than that since the first BT.... We could only hope that the slowing of the levels was due to losing Firefly and not indicative of the strength of Flicker.....

Over the next 5 weeks I experienced a number of large bright red bleeds, went for numerous scans and checks, it was tough emotional and scary. I never felt safe, or was able to relax, I had to rest, I worked from home and kept activity to a minimum only doing what I needed to do...

By the 12 week mark my list of complications was growing....

History...
PPROM (Preterm Premature Rupture of the Membranes)
Spontaneous fast progressing labour
Dilation with very little pain or length of contractions
Amniotic Band (although unlikely that it should occur in this pregnancy)

Maternal...
Septate Uterus, heart shaped uterus, known for PTL (Pre Term Labour)
Possible IC (Incompetent Cervix)
A twin pregnancy, which is now a singleton pregnancy
Prolapse, of the Uterus or Vaginal Wall, started to occur at 14 weeks.
Low Platelets
Location of the Placenta, being over the top of the septum, where there is no blood vessels to feed the placenta, so relying on the outer reaches of the placenta to draw oxygen and nutrients in to help the baby grow.

From here I saw my OB every 2 weeks, we were planning longer gaps between appointments but it wasn't meant to be... At 16 weeks the Braxton Hicks (BH's) started, 6 weeks earlier than they had with Nakita... At 17 weeks my fluid levels were low, it appeared that we are looking at the opposite I had with Nakita, where she had a swimming pool of fluid, this time we only had smaller pockets of fluid, Flicker was breech and we need to look at getting Flicker to turn and stay turned, with the low fluid levels and shape of my uterus we needed Flicker to be head down as early as possible.... My cervix had lengthened nicely around the 12 week mark, but as we moved to the late teens and early 20's, my cervix started to shorten, I was losing length and it was looking as thought a stitch was going to be needed.

At 22 weeks the BH's had grown so intense, were lasting for so long and not relenting that I was put on Nifedipine to reduce or try and stop them, as with a shortening cervix the last thing we needed was anything to aggravate it further. My cervix continued to shorten, by 20 weeks we were down to 3.2cm, the previous three scans it had reduced by 1cm, 1cm and 0.8cm, if we lost that length again, we would need a stitch, but we were absolutely thrilled to discover that at 23 weeks my cervix had grown in length and was out to 3.6cm!

For the next few weeks things remained relatively stable, we were having to increase the Nifedipine to combat the BH's, but we would get them back under control within a few days and I was able to "relax" a bit.

At my 28 week appointment my fluid levels had risen and were into the normal range, and Flicker's position was optimal, so my OB attempted an ECV, they generally aren't contemplated until 36 weeks or around that mark, but we had to take the opportunity while it was there. She attempted it twice and Flicker did move into a better position but then decided nope not interested and immediately went back to the lovely breech position, during the ECV she had to stop a couple of times as I was contracting. A few days later the BH's were getting out of control; I had increased the Nifedipine after the ECV as my OB said it would stir things up for a day or so. But now they seemed different and I didn't feel comfortable with them anymore, so I ended up in my OB's office on a Friday afternoon on the CTG and we discovered that I wasn't just having Braxton Hicks, I was actually having contractions, regularly 15 minutes apart, not just sporadically like she had felt a few days earlier, and in between a very irritable uterus that just wasn’t resting this is not want you want to hear at 28 weeks! I was put on a constant dose of Nifedipine throughout the day, with the hope that we can slow things down.

It was at this point I was put on Bed/Couch Rest, no more working in the office, no more shopping or getting out and about, I was now limited to lying on the couch and only getting up to eat meals and go to the bathroom. From here Roy had to stop going to the gym, he picked up and dropped off Nakita to day-care each day, took her to her swimming lessons on the weekends. He did the cleaning, food shopping, helped with meals, washing and just getting things done. Family and friends made meals, helped clean, ran errands and helped look after Nakita on Fridays when she was home with me for the day.

Then to throw a spanner in the works at 29 weeks we received a call that no parent expects... the results from our 12 week scan were incorrect, we had to return to the place where we had the 12 and 20 weeks scans and have an urgent growth scan and meet with a genetic counsellor.... I won't go into all of the details but you can read them News that a parent never expects to hear..., but we went from being low risk to high risk for having a baby with Down syndrome. It was a very stressful and emotional few days as we took in all of the information and made some big decisions, I truly hope that it doesn't happen to anyone else again.

Over the next few weeks, we would get the contractions under control, then they would ramp up we would play with the dosage of Nifedipine and timing and get a few days grace where they were more spread out and less intense, before we would go through the cycle again.

At 32 weeks they got completely out of control, I was contracting less than 10 minutes apart, it was going on for hours, the Nifedipine wasn't working, I was on the maximum dosage a combination of slow and fast release, taking the fast release when the contractions got out of hand, but it was no longer working, I was exhausted and struggling to cope mentally and emotionally. I was worried that we wouldn't get them under control again. At my OB appointment I was shattered, my OB decided that we needed to try a new course of action, she ordered steroid injections two 24 hours apart, in case we weren't able to stop the contraction, she then put me on Progesterone cream every night, and we had to limit the Nifedipine to 140mg a day, as my BP was dropping too low. The new combination worked, it took about 4 days for the full effect of the Progesterone to work, but it did calm things down again and I finally was able to relax for a bit. My next appointment I was bright and bubbly, contractions on a good day were 30-40min apart, and on the bad days they would get under 10 minutes apart, but were bearable. My OB said that she was about to admit me the week before, I am glad that we were able to get through it without the admission and looking back I am not sure how I did it to be honest....

At my 34 week appointment a few things didn't go to plan, the growth scan highlighted that we now had asymmetrical growth, bubs head was growing at a greater rate that the abdominal, with the femur being right on dates, this was not good, while we are able to accept low growth, when things become asymmetrical it indicates that the baby isn't receiving enough nutrients. My BP had risen and while 120/80 is not particularly high, the fact that I was on a lot of Nifedipine which lowers BP and previously I had been sitting around the 110/60, it was a big jump in a very short amount of time. We were reaching the end of what my baby and my body were able to cope with. I was sent off for a series of blood tests and monitoring, another dose of steroids was ordered for a few days time, and in four days we were going to make the call as to when our precious little Flicker was going to arrive earthside....

35 weeks.... the end is nigh..... it was the title of my last post on my blog, and my final message on my forums and FB. The decision was made within seconds of entering my OB's office, she asked how I was feeling and I said buggered. I was mentally, physically and emotionally I was at my limits I was questioning my ability to go any further, where could I find the strength to go on for another few more weeks, I wanted to dig deeper, but I felt like I had nothing left. She said that she was amazed that I was still going and that we had reached the end, she wasn't comfortable with pushing it any further I was maxed out on medications in attempt to stop things, but my body was now fighting the medications, we knew the day would come where there is a point that the drugs would no longer work....my baby needed to come out. So we booked in the C-section, we had hopes that a Breech Delivery would have been an option and my OB was fully supportive of it, but we were now in a situation where both bubs and I were going to be put under too much stress going through a natural delivery, we were going to have to stop the drugs and with my BP already high, we knew that if we stopped the Nifedipine it was highly likely to skyrocket and would likely end up with an Emergency C Section, and I was at peace with the decision, I felt calm as I didn't chose my baby's birth date, my baby had been trying to chose its own for months and we had done everything we could to stop it. I just wanted my baby to arrive safely....

From here we went into preparation mode, I was administered a further dose of steroids to boost Flickers lungs, we planned for the last dose of Progesterone that night, but not the following night in preparation for the section the following morning. I was to continue taking the Nifedipine right up to the C-section. Paediatricians, anaesthetists, theatre, hospital were called and booked, another set of blood tests were to be done the following day. We filed out paperwork and I signed where needed, I was glad I didn't have to write why I was having a CS, because it wasn't by choice it was by necessity. She then did a scan, and within seconds we knew the right decision had been made, there was no more black left on the screen, I had no amniotic fluid left, bubs growth had stopped, and was fully engaged. I was then taken out to go back on the CTG again, I had the little button waiting to press it each time I felt a kick. I was concentrating hard on waiting to feel a movement, but there were none, I drank so ice cold water and still no movements, I was ignoring the contractions, just focussing on that little kick, finally after 35 minutes we got movement, a short while later, the CTG was stopped and I asked the MW how far apart the contractions were. I had stopped timing them in recent weeks as I felt it was taking over my ability to keep a positive frame of mind.... so you can imagine how shocked I was to discover that they were 3-5 minutes apart with a break of 2-3 minutes apart... no wonder I was exhausted.... That was it, it was over, I had a finish time and date... I had fought long and hard and I know that there was nothing more I could do.... I sense of relief came over me as I knew that I only had to hold out for less than 48 hours... this was the start of my time...

I became invisible, I hid away from the online communities, forums, FB and Messenger, I prepared my final post... we were not going to reveal when Flicker was arriving, that was our secret, after bearing my soul throughout this pregnancy we were keeping the grand finale to ourselves and a very select few who "had" to know, but all were sworn to secrecy.......

This was my time to reflect, to make final preparations, to take time out; I had shared so much of our journey this time was now mine, one day before I would meet the most precious little baby. I didn't want to speak with anyone unless I chose to, I didn't want to be quizzed or questioned and most certainly didn't want to be asked numerous times when Flicker was coming...

35 weeks and the end is nigh.......

2010-09-30T06:57:00.002+09:30

At 4am this morning I could write this post and I should have, I went over it in my head, the words poured out and it just seemd to make sense. Yet as I sit here and type as the sun comes up, it just doesn't seem to flow, it is missing parts.... it has been a long and difficult pregnancy and now I struggle to find the right words... so next time I will reflect and what has been a hell of a journey....

On Tuesday I had my 35 week OB appointment, I caught up with the midwife first and my blood pressure had remained stable, blood tests came back looking good and we had a bit of a chat as to how I was feeling, which was pretty darn exhausted but hanging on....

I then went straight through to my OB, we walked into her office and she asked how I was feeling and I said "Buggered", because literally I was, I was exhausted physically, mentally and emotionally. This pregnancy has really taken its toll on me and I had felt for the previous few days that my body was starting to give up, I didn't know how much more I had left in me...

She agreed, we had pushed the boundaries, the medications and myself, we had done everything we could to possibly extend this pregnancy for as long as possible to give Flicker the absolute best opportunity we could. She made the big decision, she had been doing a lot of thinking over the few days it had been since I had last seen her, numerous phonecalls and negotitiations with the Hospital and Paediatricians. She has two of us in a similar position, the other mother whom I have met in the waiting room is a week further along than I am, she had also had a prem previously at 31 weeks, we have both come a lot further and really battled hard. But we have both come to the end, we can no longer be pushed any further and we are both going to be delivering on the same day.... a little bittersweet as we aren't making it to term, but very special as we will be sharing a momentous occasion together...

So the day and time was fixed, we went through all the paper work, she filled out forms and I signed away.... She then did a scan to check on how little Flicker is going, and within seconds it confirmed that the decision was most certainly the right one, there is basically no amniotic fluid left, the pockets that we had last Thursday are no longer there, it is just all baby, growth has slowed even further and the EFW is 2.5kg, which is is the bare minimum the Paed's are willing to accept, so it will be interesting to see how close we are to that figure.....

We went through the medications and the plan of attack, I am to stop the Crinome the night prior to delivery, but maintain the Nifedipine all the way through getting up through the night to take extra dosages so we don't have a big gap. I then asked if she would like all my left over meds, there would be a few days of Crinome at $15 a pop and a few packets of slow and fast release Nifedipine, she was absolutley blown away by my offer.... I don't need them anymore and if they go into her supplies, I know they will go to good use and will hopefully help another mother or two get to achieve what we have, without any delay in waiting for scripts etc... and she gave me meds from her supplies so it is nice to given them back again and they would only go to waste sitting in our medicine cabinet at home....

I then went back to the MW for another steroid injection to give Flickers lungs that extra boost and to go on the CTG for a while to make sure that everything was looking good enough to go just a little bit longer... I knew I was having quite strong consistent contractions, but had been "ignoring" them and not timing them for the previous couple of weeks, because I felt that by doing that it would make me more concerned about them, so if I just let them happen and get back to what I was doing it made them easier to deal with.... but it was a bit of a shock to discover how close I was having them, 3-5 mintues appart with only a 2-3minute gap inbetween, no wonder I was exhausted, the drugs had really stopped becoming effective, I was losing the fight.

I had done all I could, the meds had sone all I could, Flicker had done everything he/she could and this was the end....

With the date and time is fixed, the team of Paeds and carers is in place and the theatre will be prepped for what will be a momentous occasion and we will be ready....

So the next time I post it will be a celebration, the arrival of a most precious, miracle of a baby, who has fought from the very start, who has shown determination and courage....

So until then I will rest and get through each contraction knowing that the end is near and enjoy every single moment I have with this gorgeous bump and little mircale tucked up inside.....

34 weeks appointment ... not all the positives we were hoping for...

2010-09-23T21:04:00.000+09:30

We made it to my 34 weeks appointment this time - yipeeee, this was the one that I didn't get to with Nakita... I'd been feeling great the last two days, positive, upbeat, energised and focused on getting a few more weeks. The rest didn't seem as hard this week, I guess because we are so much closer to the end than we were all those weeks ago when we started....

Summary of OB appointment from this afternoon

AFI ~ levels had risen to 13 again, which was fabulous news
Dopplers ~ were stable
BP ~ has risen to 120/80, while generally this is not an issue, but as my BP has been sitting around the 110/60 it has become an issue as it has made a big jump in a very short amount of time, and with the high dosage of Nifedipine (which lowers BP)it shouldn't have made the jump.
Swelling ~ my legs and feet have been swelling, but grown significantly worse over the last week, I had just put it down to a normal pregnancy which it could be, or it could also be a side effect of the Nifedipine or a sign of PE if it is tied in with the concurrent rise in BP.
Growth ~ this is on of the areas of concern, bubs growth has slowed (which is not a surprise and was expected), and the growth is now asymetrical, the HC (head curcumference) has gone up and is now measuring 3-4 weeks ahead, the femur length is on track, but the abdominal measurements have dropped and the best measurement we were able to get is behind by 2 weeks. EFW (estimated fetal weight) is 2400grams, 50grams bigger than Nakita when she was born. Which is still a good size, but it is the variations between all the measurements that is of concern.
Placenta ~ was looking good, further calcification but still within the normal range
Meds ~ to stay the same, depending on the results of tomorrows tests which will be back at the start of next week, will determine what the next step, before the scan we did discuss about extending them past 36 weeks, but after the scan this will be discussed on Tuesday. I am having another dose of steroids early next week to give Flickers lungs a further boost.
Tests ~ we will be doing a number of blood and urine tests tomorrow, putting the names up here won't make much sense so I won't worry about it ;)

So what does it all mean..... as my AFI has gone up again and the dopplers are stable I am able to stay at home, until my appointment on Tuesday morning. But if anything changes, contraction wise, pain wise, movement wise etc I am to call my OB straight away. We may be in a position where we have actually pushed this pregnancy as far as we can. But from the positive perspective we have come a long way, we have surpassed Nakita's gestation, and we have managed to nuture that tiny little embryo who held on for dear life in those early weeks, when it's twin couldn't hold on anymore, it has grown into a strong precious little baby. We have faced hurdle after hurdle and a few brick walls along the way, we have taken on each one and found our way over it and managed to keep on going.

We won't be sharing when Flicker will be arriving, that part will remain a surprise for everyone and even possibly us, but we would like to thank everyone who has followed our journey shared the highs and the lows and shared with us amazing messages of support through messages, phonecalls, emails, wall posts, forums and my messenger buddies, you ahve made the ride that much easier to deal with.

Thankyou xxoo

34 weeks and still going strong!

2010-09-22T22:31:00.001+09:30

So some very exciting news over the past week and a bit, we passed Nakita's gestation and are now 34 weeks and four days! I have had good days and bad, it seems to be a bit of a cycle, but not one that I have managed to work out yet! I have my 34 week appointment tomorrow, so we will be having another growth scan, and the usual checks, and as long as things are tracking as they are or no significant changes then we get to keep on going! I promise to try and get up and post an update on tomorrow appointment a lot quicker this time!

This is a summary of my 33 week appointment which was last week ~

Fluid levels ~ have dropped again but are just above 10 so ok to keep going
Dopplers ~ looking consistent with last couple of weeks
Placenta ~ is starting to calcify, but is within the normal range for the amount, it merely highlights that it wouldn't last to 39-40 weeks, when the size is also taken into account.
Growth ~ OB decided to wait another week for a growth scan
Position ~ is firmly bum down and wiggling into an engaged position, but in the best presentation for a breech delivery.
Meds ~ Nifedipine to stay at 100mg and Progesterone at 90mg, the dropping of the dosage isn't working and it isn't worth the risk of dropping it, and will be maintaing both until 36 weeks ~ then we drop the meds and see what happens.
Rest ~ Bed/couch rest to continue - looking at it that we have come 5 weeks and now how 4 at the most to go, so past half way!!
Hospital ~ Our local private hospital will now accept (well two Paeds will) at 35 weeks, so to know that it is less than 2 weeks away is really really cool but would still love to see 37 weeks!

I am so so happy to be here, frustrated with the rest, the couch, missing out on things, but it has been worth it, 6 weeks almost 7 weeks I have been on bed/couch rest, and prior to that modified rest for a majority of the pregnancy, and it has felt like a long time, but so much better than the alternative. To be here at home each night when Roy comes home with Nakita is just wonderful, to sit and read her stories, play with puzzles and sing songs in the evenings on the couch is time we wouldn't have had as much of if we didn't all make sacrifices.

I am so proud of Roy, he has put his gym membership on hold, he take's Nakita to and from daycare everyday, he gets her showered and ready in her PJ's in the evenings and up and ready in the mornings, while I get breakfast ready and bags packed. He takes her to her swimming lessons, walks to the ducks and to the playground, it is so hard to say good bye to them each morning or each time they go out, I want to go out and enjoy all of these things with them, but it has to wait. He does the food shopping and other errands and reminds my to sit or rest, he has been my rock, and our relationship has grown so very stong during this pregnancy, we struggled when I was pregnant with Nakita and for many months afterwards, we lost our way, and feared that they same could happen this time, but it has been different, so very different, and I am so so happy and so proud as to how we have come through this together, stronger and closer.

So while our little Flicker who isn't so little anymore ~ going by the strength of the kicks, has show much fight and determination to be here, make everything we are doing so worthwhile....... And I wouldn't give it up for the world.

After passing Nakita's gestation I don't really have any goals in mind, FT is there but I am just so happy that with all the intervention, medications, scans and rest, we have surpassed nearly every expectation that we were given from the start of this pregnancy, and for that I cannot ask anymore of my body or of Flicker. We will just continue with the meds and rest and see where it lands us, whether it be days or weeks from now it doesn't matter, I am at peace with when ever this pregnancy will end and we will welcome Flicker earthside, and it doesn't matter what ever way Flicker will arrive, VB or CS is of no consiquence.

I have posted this message on my FB a few times over the pregnancy whenever I have been pushing to get over one of the many hurdles but for us it has rung so very true...

What doesn't break you, make's you stronger

~ I will not be broken, so I can only get stronger......

31-32 weeks.... a long update of highs and lows....

2010-09-09T17:48:00.001+09:30

Phew.... well it has been a long couple of weeks, I didn't have the energy to post last week, so it is time I brought you all up to speed on whats been happening.

I was feeling good, passing 31 weeks, I felt like we had things under control and we were going to be able to cruise along for a while. We had visitors on the weekend and I was feeling bright and happy and positive, it was a good feeling, then on the Monday things went a bit haywire....

I started get a lot of contractions, and they were comng in runs lasting a couple of hours at a time, I was having to take boosters of Nifedipine on top of the slow release and I was not getting any relief. I was exhausted, I had my OB appointment the next day so I held out until then at is was an early appointment.

Monday night was a horrible night, couldn't sleep I swear every time I looked at the clock the time was the same, my back was hurting, my belly was tight and sore and I am exhausted and just want to cry. I should have just given up lying down because it is much more painful.

I was trying to beat the contraction, but they were starting to get on top of me,

I felt as though I was fighting a losing battle, we are almost on the max Nifedipine and I don't know how much longer we can stall this. Mentally I wasn't sure how much longer I could cope, I was just focussing on those who have done it before me and trying to draw from their strength.

I didn't want to give up, I need to keep fighting this....

31 week OB appointment....

In the waiting room, I met a mum who is almost the same gestation and she had previously had a 31 weeker and tomorrow will pass the gestation of her bubs, so it was lovely to chat to her, comparing pregnancy notes and wished each other luck :)

Cervix ~ is stable with 2.4cm still closed and the bubble hasn't increased, so all these contractions aren't effecting it, hopefully because we have a bum rather than a head down there!
AFI ~ Dropped down to 13 from 15 last week, just means we peaked at 28 weeks, hopefully it stabilises soon.
Dopplers ~ still at the botttom of the charts but OB still happy
Growth ~ It looks as though despite the odds bubs growth is doing well measuring approximately 1900grams
Ctx ~ Not so good, uterus is just crazily irritable, I am starting progesterone cream tonight, to use it for three nights and to speak with my OB on Friday to see if it calms the uterus down again. She thinks that Flicker is trying so hard to turn that is making it worse.
Steroids ~ booked in to have them Monday and Tuesday next week if not before hand.

So things are still looking relatively positive despite all the contraction, I want to get through the next few days, and hopefully get everything to calm down again, almost 32 weeks then N's gestation is the next milestone. So taking it one day at a time, but we will get there and hopefully will be able to avoid NICU :)

The next 3 days we trialed the Crinome (Progesterone Cream), by the Friday I was actually getting relie, while I was still contracting they were more defined and not as much of a tumbling mess on top of each other, they had also settled down to 10-15 throughout the day, which was significantly better.

I sopke to My OB on the Friday afternoon and we were both happy with the improvements, so the plan was to continue the combination of the Crinome and the Progesterone and attempt to reduce the amount of Nifedipine slowing 1 tablet over a four day period to see if we could reduce the need for it.

Over the weekend we hit 32 weeks, another milestone passed and we had a lot of help from my parents, getting the everyday things done around the house and some shopping. It was lovely for Nakita to spend time with all her grandparents spread over the two days. For Fathers Day Roy and his Mum took Nakita to the Royal Adelaide Show and she had a lovely time, developed a new found love for hot cinnamon doughnuts, and chicken burgers, she rode the spinning tea cups with Daddy and came home with lots of treats and all tuckered out.

OB Appointment 32 weeks~

I had my second steroid shot with the midwife before heading in to see my OB, they had to be 24 hours appart and would be effective 48 hours after the first injection.

A week ago I seriously didn't think I would be here this week and my OB told me the same at my appointment she was about to admit me last week!

But we seem to be getting back on track again and the combo of the Nifedipine and Crinome are doing what they need to do, they have calmed my uterus, Flicker is much happier and I am a LOT happier.

We are attempting to reduce the Nifedipine to 80mg and today is day two, last night wasn't so sucessful, but we have made some timing changes and will see how that goes today and tomorrow, if not we got back to the 100mg a day.

Flicker was doing well, good strong HB, still breech but had flipped sides, pity about not flipping the other way, but we are both of the thought that Flicker isn't going to get out of breech, the attemps have stopped and I have an inkling that it won't happen.

So what does it mean, if I go into labour we can't stop before 35 weeks I will attempt a breech delivery with my OB, after she goes on leave it will be CS. Her back up OB isn't well experienced in breech delivery and I need the person to be doing to be confident, as DH is nervous about it and having two people nervous is not a good thing. But if it happens in a rush then we will go with the flow.

I am staying on the Nifedipine and the Crinome until 36 weeks, the Crinome is usually stopped at 34 weeks, but she wants to get me the extra couple of weeks if we can, and without it we know how bad things got last week tht it wouldn't take much to get to a point where we can't stop it.

Delivery if CS would be by 38 weeks and no later, due to the size of my placenta, she doesn't want me going any longer, I am struggling with the thought of actually setting a date, because I am of the thought that I would like my babies to chose their own date, but I will get my head around it, so either way by about the middle of October either way we will have our little bubba.....

I am feeling 1000% times better this week, it feels good to know that we have the steroids on board which will hopefully make the difference if needed.

So as long as the dopplers remain steady, fluid levels remain steady, membranes stay in tact, and next weeks growth scan is good we get to keep on going along :)

The wind up.....

We have decided to not drop the Nifedipine, the spacing between the dosages was too far, I was getting too many more contractions and was not sleeping, so we are staying with the 100mg a day, it give us less room to move, but hopefully it does what it needs to during the interim and the contractions start to settle by themselves....

We are now less than a week away from Nakita's gestation of 33 weeks and 4 days, for so long it seemed like the unattainable goal, but now we are so close I can feel that we will surpass it and venture into unchartered territory, it will be very exciting times!!! So bring on the next week, hopefully a week full of highs and lots of good news!

And to celebrate a 32 week belly shot and some photos of Nakita at the show :)

30 week appointment... a bit of this and a bit of that...

2010-08-26T15:33:00.000+09:30

Another week down and another week closer to meeting Flicker...

Results from Tuesday's appointment:
BP: 110/60 (Thanks to the Nifedipine ~ one of the side effects is lowering blood pressure)
Fundal height: 31 ~ lovely, not "shrinking yet"
AFI (Amniotic Fluid Index): 15 ~ nicely in the normal range, but looks as though we have had our peak already, it has dropped 6cm since my 28 weeks appointment, so she will keep an eye on it to make sure it doesn't keep dropping
Dopplers : we are well below the 5th%ile, but we still have a good uprise in the flow which is keeping Flicker tucked up safely, but the drop in the pressure and any notching (which is what Dopplers Pick up) the current plan will change.

She didn't do a growth scan as I had one done last week at the High Risk Clinic, and she'd already done one the week before @ 28 weeks, but another one will be on the cards for next weeks appointment. Growth was slowing based on the difference between last two, but Flicker has started out at a good weight so that will be a big advantage!

She didn't do a cervix length either as we want to keep things as settled as possible.

The dosage of Nifedipine has gone up again, we are going to try this for another week and if things don't settle will go the Progesterone, I am squeezing an extra dosage in during the day so now 100mg daily, plus boosters as needed - generally only 2-3 a day, the limit is 120mg plus 40mg of boosters (160mg in total).

Flicker is still breech ~ oh well, and we went through breech delivery in more detail today, need to still get a few more weeks of good growth for Flicker to be big enough. I've also a form to go in for a CT Pelvimetry to check the size of my pelvis because we need to make sure that it will open up enough so the baby literally falls out. Breech delivery is a hands off form of delivery, you have to literally let the baby descend, then once the legs, body and shoulders are out the baby bascially peddles backwards, tilts their head and the head is then delivered. It is this point that is critical to a safe breech delivery. There are some fabulous videos of breech deliveries on Homebirth : A Midwife Mutiny... turning a ripple into a wave just look on the right hand side for the links. I also had a look on Google, but was horrified to find one where from the start the care provider was constantly tugging on the baby trying to pull it out, I had to stop the video and couldn't watch it to the end. I spoke with my OB about it and she was just as horrified, reiterating that it wasn't the right thing to do at all, which gave me extra comfort.

But another spanner in the works is the length of Flickers umbilical cord, looking at the scans it is short, which may also explain why Flicker has made some attemps at turning the last few days and been unsucessful. If this is the case we couldn't see much extra cord today and based on the small placenta it is possible the cord is short as well, breech may not be an option

But we would know quite early in delivery if the cord isn't going to be long enough as we will see signs of fetal distress.

For my OB to deliver I need to have bubs before the 30th of September, 35 weeks or hold on to 39 weeks even she laughed at the thought of that ~ as she is on leave for the month of October and flying out of the country During that time a breech delivery won't be performed, her back up OB isn't as well versed in them as she is, and to be honest I would only want to do it if my OB or someone jsut as experienced was there as I know that she has done quite a few of them, she did a lot when she started in obstetrics, where as the other OB started when CS were the way to go.

So a bit of a mixed bag as such, but in the end the way in which Flicker arrives needs to be the safest and I won't risk his/her life for my own desires for another traditional birth.

Either way I feel comfortable with where we are and how things are tracking, it's not perfect but we never expected that and every day/week Flickers gets to stay inside is a bonus.

The rest at home is driving me a bit batty though, day in and day out of pretty much the same thing, sitting on the same spot on the couch or taking rest times on the bed, on on my "low days" it makes all that much more difficult, but at least I know that not every day is a "low day" and there are better days so to focus and enjoy those, and keep focussed on the bigger picture. A few visitors this week has made a huge difference and breaks up the day. At least I can still work and earn some money, I am at home everynight to give my hasband and kiss and cuddle and spend precious time with my daughter, I get really excited when it gets to 5pm knowing that they aren't too much further away!

We are three weeks away exactly from passing Nakita's gestation, what an amazing milestone to achieve, lets hope we can pass it with flying colours! Till later on... I will be back... xxoo

News that a parent never expects... especially 29 weeks in!

2010-08-19T14:21:00.001+09:30

It is time that I updated our blog with the news of the week, it has been an extremely stressful and worrying time, we have been pushed to our limits once again, on receipt of news that a parent never expects to hear, let alone 29 weeks into their pregnancy.... So grab a cuppa and chocolate biscuit and catch up on the full story of what happened this week.......

It all started Monday Night ~

I had a phone call this evening from the specialist high risk ultrasound clinic we went to for the 12 and 20 week scans. They have spoken to my OB and she gave persmission to call us and follow through directly.

Issues have been detected on our 12 week scan (yes we are getting told about this at 29 weeks!!) and our risks are apparently quite a bit different to what we were told there are about 20 of us who all have to go back. We have to go in urgently - tomorrow night @ 7:30pm for a growth scan and meeting with the OB and a genetic counsellor, and they said that it is best the Roy is with me...

I assume that there was either problems with the US machine, calibration or something like that, operator error or something similar. The OB I spoke to said that our OB had said we had been having regular growth scans, and he said that was a good thing. But should she have been monitoring something else, who knows!!

And just to top it off one of two OB's will be doing the scan, one is the OB/US Specialist I saw the WCH when we found out we were losing Firefly and who told me I was not going to make it to term in a blunt uncaring manner.

So this is certainly a curve ball we did NOT expect at this stage!

Tuesday Nights Appointment ~

We arrived early and they were running late, the couple before us came out and the father started explaining everything that had happened during their appointment to his parents or IL's. We recognised the couple, and their little boy M, we had seen them at either the 12 or 20 week scan. I looked at the father and in his eyes I could see the pain that we too were feeling, we all knew we weren't there for good news. And he knew what we were just about to face, I will never forget that moment.

We were called in and I was disappointed that the OB I had was the one from the WCH, had to be my luck didn't it, so next came the introduction as to what happened. There was a change over of software right at the time we had our 12 week scan, and although the knew the software was going to change they didn't know exactly when and they assumed that it would be a relatively smooth change and that any alterations to results would be minimal. So the results went into one program, but should have gone into another, figures were supposed to be changed and weren't, and along with it there were glitches in the software. Then it took sometime for it to be picked up that the switch had been made, only to discover that when some results went in there wasn't a minor adjustments to results, but in fact quite a large adjustment. So for us what it has done is changed our risk for DS from 1:655 to 1:244 and placed us in the high risk category and I have In addition I have a Low PAPPA result of 0.30MoM, hence the reason for us getting called in. Ok so we are sitting there trying to absorb everything that she had just told us but within seconds she flew into "you are still able to terminate the pregnancy, just not here in SA you will have to travel interstate". What the??????, we were both completely take aback and it was at this moment I lost it. Seconds ago we were just being told that our risk had gone up, but then in an instant to be informed that you can still terminate the pregnancy if you wish before even having a scan or looking at our options, where was the middle ground in all of this?

She then went on to discuss our options, which are to have an amnio which comes with a risk of MC of 1:205, but due to the shape of my uterus and the fact that I am already having contractions, the risks are significantly higher, but she couldn't give us what that figure would be. We have been placed in a position that no parent wants to be in let alone at 29 weeks into the pregnancy.

Through all of this she apologised profusely for what has happened....

We then went into another room where she did a full scan, including a growth scan, and looking at all the markers for Downs Syndrome, she took great care looking and measuring the nasal bone, the heart, kidneys, brain, she also did a set of dopplers. She was happy with the growth scan, everything is tracking online, bubs weight has gone up to approximately 1550grams which is up 110grams from the previous Tuesdays growth scan, and all other measurements were within the normal range.

I can't believe we have been placed in this position, let alone at this stage, and why on earth did they take so long to contact us all.
We have a lot to absorb and emotions are running high, but this little baby has shown so much fight and I couldn't go through with a termination, so I don't think we will bother with the amnio as we aren't going to "use" the information.

My reflections on it all yesterday morning

That was one of the hardest nights I have had this pregnancy, I feel shattered this morning, neither Roy and I slept much at all, both of us waking through the night in tears, I felt so angry, hurt and upset, why did we get put in this position, why did we have to go through this and why now.... I know that life is meant to challenge us, but I never expected to be pushed to such extreme limits. Why did it take 17 weeks for us to be notified of the issue!

When I announced my pregnancy it was with vigour that I was going to skip the NICU Rollercoaster and get to Full Term, but I didn't comprehend the rollercoaster of emotions that we have been for the pregnancy part on for the past 21 weeks since we had the first bleed....

I am calling my OB's office this morning, they open at 9:30am and organising an appointment to speak with my OB. There are questions we have, but I feel that within my heart that Flicker is ok... and as I can't even comtemplate termination, so realistically the amnio is not the way to go, because of the shape of my uterus and the fact I have been having contractions makes the risk of the amnio so much higher, but it would also give the definitive answer that Roy is searching for.

I have been on the net - I am a careful "Googler", finding out more about Low PAPPA, which is Low Pregnancy-Associated Plasma Protein A (PAPP-A), this has placed us in the high risk of chromosomal abnormality, but from my reading it can be indicative of a few things which I see are more fitting to my case, I have found a direct link to having a uterine septum and the positioning of the placenta in relation to that. And as we know my placenta is over the top of the septum and that placenta has always been on the smaller size. For these reasons my OB has been closely monitoring growth and doing regular Dopplers, with the expectation that the restriction is growth is more likely to occur after 30 weeks. This is one of the things I plan to discuss with my OB today.

On top of that if there was any retained placenta from the twin, this could also affect the PAPPA result, but by how much isn't really known.

Flickers growth scan results from last night were pretty good, and putting growth ahead by a few days based on my "Official Dates" (or right on track with my dates of 30 weeks yesterday) Weight was 1556grams, up from 1440grams last Tuesday - give or take based on the accuracy of these things.

I have also looked closely at the range of soft markers that can be present in cases of DS, and I can't see any of them present in the scans we have of Flicker, but I will go through them with my OB today.

I know that in time this will get easier, but I know that Roy would feel better about a definitive answer, where as I can just live with what ever we are given, because for me I see no other option. And to be honest when I look at the figures and all of the information, not just the fact that we have crossed the line into the high risk category, where as I don't think he can get past that.

I am sorry if I have repeated myself everything is a bit of a haze right now, but hopefully soon I see clearer again.

Last night we went and saw our OB and this is what happened ~

I am so so so glad we went in and spoke with our OB this afternoon, it was a great debrief for Roy and I. We went through all of the events of the past couple of days, and we asked a bucketload of questions.

We went through all of the results, the original and the new figures, we went through each component of the 12 weeks results and what each meant, we strongly believe that the Low PAPP-A is due to the poor placement and attachment of the placenta. And just one hiccup with a component of the testing can make a dramatic difference to the end figure.

We went through the results of last nights scans and each Soft Marker that was looked at and are confident that visually there are no signs of DS. We showed our OB the 3D photo and she had a good look at the facial structure and agreed that the positioning of the eyes on the face, they don't look slanted in and the nose looks just like Nakita's, I have a feeling that the Masterman genes are a lot stronger than mine!

We went through all of the risks associated with the amnio, had we had it done early in pregnancy and doing it at this late stage and what we would or no do with that information. The reality is it is not worth the risk to do if before 34 weeks, my pregnancy is far from "stable" and although if a clean amnio was done the history of PPROM, a uterus that is contracting, ther would need to be quite a bit done to actually calm it down, it is just too complicated and too risky. And we have made the decision that if we have the amnio we aren't going to do anything with the results, so there is no point going through with it.

We feel at peace with our decisions, we have looked at all aspects and although we can still make a decision about the amnio down the track, I don't want to risk this pregnancy in anyway and it isn't going to prove anything.

Had we found out this information much earlier... like when we should have... we would have had the option of an additional blood test (CVS) which would have given us further information without needing an amnio, but would have had to be done between 14-20 weeks or there abouts. But we can't dwell on that as that option isn't there for us.

So while we are still upset about what has happened and how it was handled, it was not the fault of the OB's at the clinic, we need to take our focus and minds away from that and just refocus on growing Flicker into a big fat chubby baby who will be perfect in every way.....

On a side note ~

My OB also wasn't particularly happy with the fact that my contractions are still around even with the change in the Nifedipine and the rest, and she said she wants to try me on Progesterone to see if that calms everything down. I am feeling a lot better today and have only had a couple of ctx early in the day but since 11:30am hey have been back with more force and frequency, so time to lie down and get some rest...

But from here on in we will remain positive, we are not going to focus on the events of this week any further, we are going to move on and focus on bringing our little Flicker safely earthside in a few weeks time :) And just because we have one, here is a 3D shot of Flicker from Tuesday night :)

OB Appointment 28 weeks - It was HUGE!!!

2010-08-11T09:04:00.000+09:30

Ok this is going to be a HUGE !!!

Not sure where to start, but it was a really positive appointment, we did all the tests except the cervix length as she didn't want to risk it cause any further irritation.

With the Nifedipine she is really happy with how I am controlling it and said she is leaving it up to me, and that I can go up to 150mg a day if we need to I'm currently on 60mg daily.

Test results
GD : Sugar levels were 5.4 so no GD
Platelets : Stable at 153 (friggen awesome, at this stage with N they started a rapid decline at this point)
Other BT's : all came back negative

AFI's : 21 insanely awesome, my fluid levels have flown up so not low amniotic fluid anymore, wooo hoooo!!!!
PI: 0.99, (dopplers ~ so looking good)
EFF: 1440grams!!!!!!!This baby has had a massive growth spurt which is brilliant, and she said there wa a good layer of fat as well ;) It looks as though my placenta is defying the odds and doing great things, lets hope it continues all the way to delivery

So all the things that were going wrong and were really setting us back as not doing so at the moment, this little Flicker is really one strong little bubba!!!!

Now for the really BIG NEWS!!!!!

I am totally blown away by this!!!!

Flicker is still bum down, has shifted around a bit more as the feet had been stuck in my cervix the last few weeks. She tried an ECV as the opportunity was there and this bub needs to get into celphic while we have a little room left. She tried twice, popped Flickers bum out of my cervix and got it up to the side and got the head down further but both times bubs went straight back , she had to stop a couple of times due to me having contractions it was good that she got to feel them and how strong they were and certainly confirmed the need for the Nifedipine and said to boost my Nifedipine tonight as the ECV will stir everything up more.

But I bought up some questions about C/S as I thought it was inevitable if bub chose to stay breech, but she told me not to get hung up about it as we could achieve a breech delivery !!!!!!! OMG are you serious, I think my eyes popped out of my head!!!

Due to N arriving so quickly and me dialating quickly and effectively, if we can get bubs a few more weeks along then we can go for a breech delivery.

I think it has just lifted a HUGE weight off my mind and hopefully this will help Flicker turn anyway, but to know that my OB is supportive of a breech delivery has just totally blown me away - man she ROCKS!!!!!!

OB Appointment this afternoon 28 week 3 days

2010-08-10T09:45:00.000+09:30

Off to see my OB this afternoon and it is going to be a big appointment!

Just a "few" tests and scans...
Cervix length
Uterine Dopplers
Growth Scan
AFI's

And I get the results of...
GD test
Platelets
Some other BT's my OB has run

It will be interesting to see how things are tracking, with the BH's ramping up again in the last week we may need to adjust the dosage again over the next week, but hopefully we can sustain it at just double the dose for a while and only boost it when needed.

Hopefully it will be good news that will take us through to the 30 week appointment in two weeks time :)

OB Appointment 26 weeks 3 days...

2010-07-27T18:16:00.000+09:30

I am back :) 26 weeks 3 days.

It was a pretty good appointment a few changes, but that was to be expected.

She checked my cervix on the external US and it was just under 2.5cm, BUT before anyone gets worried, the actual measurement would be at least 0.5-1cm greater, as she had done the external before and then internal and we gained nearly 1cm, so I was happy and not concerned with the measurement. We are also on medical management for it now, so I will be going onto Progesterone if need be and was good to give the internal scan a break and avoid any agrivation ;)

We didn't do a growth scan or dopplers, bub has a nice strong HB and looks good so I was happy to leave them until the next appointment.

BP was nice and low and is dropping each week, which is good, I think it shows that I am coping well and there aren't any issues there was 105/60 :D

Fundal Height on par.

Disucssed the changes to the BH's (last night going all night and that the Nifedipine wasn't working all the time) and a bout of cramping I had the other night, which was never regular enough to be timed and settled after a couple of hours.

So my Nifedipine has been increased I now had to take a double dose, 2pm and 6pm, My OB is expecting that we are likely going to be heading up to 4 or more doses a day, but said it is much better to try and get hold of them rather then letting them go.

Flicker must turn very soon, rapidly running out of room and with the head in the left horn, back over my cerevix and the placenta in the right horn, the option of a ECV is not at all possible, as bub has to actually do a somersault either facing towards my spine or belly button and an ECV can only be done with a clockwise rotation (looking at the front so turning to the left or right). And the septum prevents that happening :( So I have to spend as much time as I can on my hands and knees, doing inversions, pillow under my bum while I sleep, sitting backwards on dining room chairs and no lounging backwards or reclining.

OB was really proud of me (again LOL), and I told her about a thread on a FB page I am on asking who your OB was, and told her that there were a few really lovely messages about her on there and she was pretty chuffed. It was good to pass on some positive feedback that she may not have seen otherwise, the girls at the front office looked it up as I gave them the page so they were going to show her :D

So I feel good still desparate to get out of the 20's and into the 30's.

The last couple of weeks...

2010-07-26T21:26:00.000+09:30

I never did get back and post last week about the events of that day 2 weeks ago, and since life has been particularly hectic...... celebrating Roy's Birthday although the dinner that night had to be cancelled as Nakita was very unwell when I picked her up from daycare, but it was short lived and by the next morning she was completely well again.

It looks as though my house has sold, I was rushing around doing the negotiations that afternoon, and reached an agreement with the buyer and signed the paperwork, the colling off period has passed, deposit paid and the finance approval papers from the buyer have all arrived and we are now just waiting for the 12th of August for the offical settlement, so we won't be celebrating until it is all clear.

Work has been busy and a really good place to focus on things other my growing bump, with quite a few project on the go and developments all at different stages from starting up through to preparing exit strategies which from our perspective is finalising the last of the design work and compiling a lot of documentation and plans.

Nakita has moved up rooms at daycare and shifted into her new bedroom, and we have removed the side of her cot, and with so many changes in a very short amount of time, she has done extremely well. A couple of days of tears at Daycare, but by the 3rd day she had settled and it was a tear free drop off.

As for the growing bump things have been going along relatively smoothly, the Nifedipine makes a big difference and most days is effective, the few days where it hasn't I have generally felt that it was going to happen, I was either just a bit too late taking the Nifedipine, or had to be on my feet for a longer priod of time. I feel that this cheeky little bubba is still in breech, so I have started doing some inversions again to see if we can get some movement happening.

It has been good to make it the full two weeks between appointments, it's nice to have been able to just enjoy the pregnancy for a while. Even though at the moment I jsut want these few weeks to fly by, I really want to get into the 30's and it feels as though the last few weeks have gone by slowly, and although I know at this stage bub has a good chance, it doesn't make me feel comfortable about an impending arrival anytime soon.

Some days I feel very confident, relaxed and that it is going to be easy to get through the next weeks and months, but other days the confidence is lower and you wonder how you are going to get through next few days let alone longer.

But we are trying to remain positive and hopefully tomorrow appointment is another good one so positive feelings that we have been building over the last couple of weeks will continue and strengthen.

So here's to another milestone passing 26 weeks and bring on 28 weeks :)

Out for a treat

2010-07-23T11:30:00.000+09:30

Nakita was such a good girl this mornng mummy treated her to a bubbacino

26 weeks bump :)

2010-07-22T21:21:00.003+09:30

OB appointment 25 weeks... finally a pretty good appointment!!!

2010-07-13T21:33:00.000+09:30

Ok I am back and online again, things went crazy this afternoon, but I will update that in another post.

OB appointment went great!!!
Cervix was stable at 3.6 cm - we got past the suture stage and I am now on medical managment for the remainder of my pregnancy. For now we are not planning fortnightly cervical lengths unless the Braxton Hick's change or something doesn't feel right.
Dopplers were good
Fluid Levels looking stable

She also did a growth scan and bub is measuring on track, head measured 25 weeks, leg 25 weeks 4 days, abdominal 23 week 3 days and weighing in at a beautiful 764grams

The only downer was Flicker being back in a breech position, kneeling and feet going in and out of my cervix and I know about that as I am often getting kicked there, I was hoping it was some punches.....

I have to keep making adjustments to the Nifedipene to try and get the timing right, if I get BH's in the mornings to take another dose.

Back in 2 weeks for my next checkup, so the plan is that everything will be nice and settled for a few more weeks ;)

The bump is certainly popping out!

2010-07-08T22:06:00.000+09:30

24 weeks added :)

Pop and we have a new course of action...

2010-07-02T22:42:00.000+09:30

After a couple of lovely days, taking the time to enjoy my pregnancy, at 3am yesterday morning there was a pop and some leaking and TBH is completely scared the crap out of me and I was afraid to move, I was scare that I may have broken my waters.... I evenutally did. Nothing else eventuated and I tried to get some mroe sleep, but wa up bright and early with Nakita, I tried not to think about it during the day and really put it out of my mind and nothing had happened I just had a dripping feeling sporadically throughout the day

Then last night I had a massive bout of Braxton Hicks's, my stomach was rock hard for over 5 hours, when ever I stood up it was very uncomfortable and it wasn't relenting, they BH's went for more than double what they normally go for, generally they have gone for only 1-2 hours at a time.

So I called my OB's office this morning just to let them know, as I have been told to let them know of any changes, I spoke to one of my OB's lovely MW's I wasn't feeling too concerned, as this morning my tummy was softer and otherwise I would have called my OB direct, she then spoke to my OB and they wanted to see me straight away. So I had to ring around to get a friend to watch Nakita and a lovely friend who lived near my OB's office was able to help me out at almost no notice, I was so grateful she was able to help me out.

I got to my OB's office went straight through and had to lie down for 1/2 an hour then they did an exam and there was quite a bit of fluid, but it didn't have the appearance of amniotic fluid and my OB took a sample and put it on a slide and under the microscope to look for a ferning appearance. I was fascintated by the process and it reminded me of my school and first year uni days, especially when the MW said the last slide she was dry snapped! We then had a laugh about when I was an school, breaking a slide because I focussed in too far and didn't realise how close the lens was to the slide went straight through it.

My OB thinks that I have an infection, even though I don't have any other symptoms. So the samples had been sent off to pathology for testing and I get the results either late Monday or early Tuesday, and then she will advise treatment, depending ont he results.

She was also concerned about the change in my BH's so has put me onto Nifederpine, to calm them down, and if I need to use it more than once a day she is going to change the dosage. But as I have only been getting them every few days and it had been almost a week break until last night I am hopeful that we won't need to make any changes soon.

So we will wait and see what happens over the next week, but hopefully we can get everything to settle down again and get back on track :)

In the meantime I will will enjoy this lovely Blackberry and Apple tea :)

It grew..... :)

2010-06-29T14:08:00.000+09:30

Image by D Sharon Pruitt

Wooo hooooo!!!! I have the biggest grin on my face right now, my cervix grew by 0.5cm - yipeeee so we are back out to 3.6cm, which is just awesome news, my OB thinks we can avoid putting in a stitch now, so no need to worry about my concerns I raised in my post last night, unless something goes haywire over the next fortnight.

Flicker has shifted, cheeky little on and is now transverse/breech position, but as I know Flicker can go head down I am less concerned than I was a few weeks ago when it was thought it was going to be a bigger issue.

The placenta is still small, but Flicker is growing, so we will be monitoring Flickers growth later on in the pregnancy, my OB said we aren't out of the woods yet, but we should take this time and hopeuflly we will have a few weeks to enjoy the pregnancy.

The great thing is that throughout the whole pregnancy my BP has remained relatively stable, my OB said she was very proud with how I am going, and I said that writing it down and sharing my emotional rollercoaster through my Blog and chatting on forums has really helped me, get to this point.

So here's to a few relaxing weeks and I am going to take this time to enjoy my pregnancy .... xxoo

In two minds....... - OB appointment in the morning

2010-06-28T20:38:00.000+09:30

Back to see my OB tomorrow for another check up and cervix length, I am in two minds about it all really, if my cervix has shortened more but is not funnelling I feel that I would want to see if it is viable to wait another week or even fortnight. Now don't get me wrong, I don't want to risk things and if I need a stitch..... I need a stitch, but it is the complications that come with a stitch at this stage of pregnancy.

It is so much more risky now then it was doing it 8-10 weeks ago, but as it had lengthened at the time to a "safe" length, and substantially grown from just a wee 2.2cm, it was worth just monitoring it. The risks of doing it so late is that there is much more pressure on the cervix now then what there was then, the weight of the baby, the amniotic fluid, doing anything with a cervix that is already "primed" can cause labour (drugs are adminstered to prevent this happening), the membranes could be broken.

So why would I wait.... at 23 weeks, I know that the Neonate team at the WCH would do everything they could for Flicker, but it is a massive journey from 23 weeks, but it we could get past, 24 or 25 weeks there is a big difference, it most certainly wouldn't be an easy journey by any stretch of the imagination, but every day Flicker has safely in a beautiful warm amniotic bath that is on average 2 days less that Flicker would spend in NICU.

The plan is that we don't need to worry about it, that my cervix is stable at around 3cm or lengthened and that we won't need to make these massive decisions, but should things not go to plan, at least I have questions I can speak through with my OB.

It is pretty amazing that this time two years ago I was completely oblivious as to what was going to eventuate in the next couple of days..... Nakita was safelty tucked up in my tummy making her preparations to come out and meet us, pity she didn't give us any warning!

Just to share this is the last photo that we have of Nakita before she was born, she was 29 weeks and it was a 3D scan, which we aren't doing this time as we have already succumed Flicker to way too many scans... so as I won't have one of Flicker to share, here is Nakita being as cheeky as ever...

Until tomorrow.....

A small update and a special little girl is approaching 2!!!

2010-06-27T22:58:00.001+09:30

We have made it past 22 weeks, and almost 23 weeks, getting closer to some of those big milestones that we want to get past and fly into the 30's. It can be consuming at times, looking for signs, changes and wondering... I want to just live normally and do the things I am so used to doing, I would love to go for a massive walk along the river, to take Nakita to the playground on a Friday run around on the grass and play, but these things are on hold, instead we play inside, we draw preferably on paper rather than the wall and we build towers out of Lego. Lucky Roy can take her out and play on the weekends and she gets lots of outside time at Daycare 3/4 days a week.

The serious face that comes with drawing.....

Saturday morning she was outside heping Roy with the weeds around the pool and had a lovely time, playing in the mud, and as you can see is a picture of innocence....

And I couldn't not show these gorgeous shots wearing her new hat....

So as we approach Nakita's second birthday in a few days time, hopefully all the news of the week will be about her! Even with an OB appointment and scan on Tuesday :)

Growing a belly again.... 21 1/2 weeks

2010-06-18T11:00:00.001+09:30

Some new photos, we are past 20 weeks and doing well and the bump is certainly growing!!

Photos from our 20 week Scan :)

2010-06-16T16:11:00.003+09:30

A few photos from our scan last week :)

Profile of a gorgeous little face...

One little foot....

Fingers....

Sucking on the Placenta....

The Plan of Attack from 20 weeks - OB Appointment

2010-06-15T16:46:00.000+09:30

Today we had the follow up appointment with my OB about the Morphology scan, latest round of blood tests and general checks. I am feeling positive, especially when looking back at how far we have come, how many times we came in those early days to losing both babies, and how blessed we are to be past 20 weeks.

She started with telling me about a call from the OB of the High Risk US place on Friday right after our scan and he said to her that my cervix was 2.5cm but was looking great (nice and closed), now 2.5cm at this stage is not good but as he was completely happy with it, she said she was seeing me Tuesday to check. Then when she got the report it said 3.2cm, not the 2.5cm that he said ont he phone, and she was happy with the measurement! I said to her today that if it was 2.5cm I would have called her mobile straight away as I knew we were going to be in big trouble and needed the stitch straight away, and I think she knew that I would have done that anyway!

She was happy with the Uterine Dopplers the figures were less the 0.58, 0.48 and 0.44, so was very hapy with the connections that the placenta has made and that it is firmly in place. The shape isn't the best, it is quite lumpy and bumpy, even moreso over the septum, so she expects that bub will be a smaller baby, but the growth restriction is more likely to occur after 30 weeks.

The other measurements were good and everything is where it should be, which is lovely, and the head mesurements are about 2 weeks smaller than Nakita's were, but as she had a large head, I will appreciate the smaller one :)

My platelets are stable which is great, back for another round in 3 weeks time to see how they are tracking along.

We then went into the plan of attack from here on in....

As I have been getting Braxton Hicks Contractions since 16 weeks, along with some cramping, she is concerned that my uterus is getting prepared to early, so if there is an increase in the intensity and or frequency of the Braxton Hicks she is going to start me on Progesterone to calm the cervix and Nifedipine to relax the uterus/to stave off contractions, and the steroids would follow incase we got to a point where we were unable to stop everything from progressing.

I have another cervix length in two weeks then again 2 weeks after that, if it has shortened anymore these are our last two chances to put in a stitch, after that we will be relying on the Progesterone, but it is risky putting the stitch in now, so we are putting it off unless the risk for not putting it in is greater then the risk of putting it in. And seeing as from 16 weeks it was already looking primed, it was best to stay away from it unless we really needed to.

I asked if after 30 weeks I could consider expressing some colustrum to freeze away for bub, but she doesn't want me taking any risks, with things being already irritated we don't want to do anything which could aggrivate this further, which is completely understandable.

I have days when I feel confident that I can make it well into the 30's and close to term, and other days when even 28 weeks doesn't feel attainable and I have this deep feeling that my body isn't going to be able to carry this precious little baby as long as we hope. But I am focussing on the positives and knowing that we will get as far as we can, and I know that we are giving this little baby the best care we can.

So I am really happy that we have a strong plan in place, we are going on fortnightly appointments unless things change and that needs to be increased, I feel that we are in control as much as possible and there are some big miletones ahead in the next few weeks that I look forward to reaching, celebrating and passing.........with a big round belly!

Nakita's Stats @ 23 1/2 months

2010-06-14T17:17:00.009+09:30

It has been quite a while since we have done a measure and weigh of Nakita, I think the last was during one of her admissions to hospital last yeat.

Weight ~ 12.00kg exactly just short of the 50th%ile
Height ~ 80cm just on the 5th%ile
Head Circ ~ 50cm right on the 97th%ile

But she looks just perfect to us and we aren't concerned about the variation, and she has only just recently had the growth spurt to 80cm after being about 77cm for ages, maybe another one isn't too far away.... :) All the measurements are on her actual age as well, so she is going great guns!

And just a few photos of Nakita today, I made the bib for as a gifts for a couple of friends and had to make another one as Nakita wanted one :)

Video of Flicker from today!!!

2010-06-11T21:48:00.002+09:30

So so cute, slightly biased here ;) But there are some great shots of the heart beating, the legs and feet, and little Flicker sucking on the placenta!!!

Morphology Scan in more Detail

2010-06-11T21:19:00.000+09:30

What a long afternoon....they were running late, so at least it wasn't me for a change ;) After waiting around for about 20 minutes we got called in for the scan.

The Sonographer I had was really good, quite lovely and adored Nakita, she talked throughout most of the scan explaining what she was seeing. Flicker was asleep and lying across the bottom of the uterus, so we got a lot of goot shots of the heart head, arms and legs, but getting the spine was proving to be difficult. Most of the measurements were close to dates, with only the head being behind by about a week and a half, but still just within guidelines so no concern there, and seeing as Nakita had a big head I don't mind if this one ends up being a bit smaller :D

The Sonographer was pretty certain of the sex but she but did a confirmation at the end and was 100% certain, no guessing or estimating needed!

Dopplers appeared good, but she didn't tell me what the figures mean, it made me realise how much my OB actually explains to me. Nakita thought it was hilarious when she was doing the Uterine Dopplers, as she needs to listen and watch the flow, Nakita was trying to emulate the sound of the blood flow, it was very cute. We see the OB on Tuesday and get the full results from her, but I don't expect there will be anything out of the ordinary - keeping everything all positive here!

Fluid levels aren't the best, well if you compare them to Nakita's swimming pool but they don't measure them in this scan and my OB will keep an eye on them anyway. It just made it tricky as bub doesn't roll over, so I had to be tilted back from about 15 minutes to get some of the scan done

The OB came in after the main Morphology Scan and Dopplers once the report was written and came and had another good look at the heart and a couple of other things, but didn't say anything so we can only assume that all is good. We don't get a lot of feedback from the clinic as they are not undertking any of my antenatal care, just doing the scans. Next came the cervical length, Nakita got quite upset when I left to get changed and tried to chase me down the hallway with Roy and the Sonographer chasing her, she was very relieved when I returned but looked at me quite confused as I was wearing a hospital gown!

We are so so happy with the cervix length it had shorted but only slightly 0.1cm, and is negligable as it changes anyway, so thrilled that we didn't really lose any more length, especially after the previous two fortnights.

Nakita did extrememly well, glad we had plenty of snacks, but she keep pointing at the tv screen and saying "Baby!!" and at the end, when there was just text she said all gone'", and thought the baby was gone, we had to remind her that the baby was still in my tummy LOL!!

Hopefully we have been through the majority of the dramas, think we have had our fair share that's for sure!!

After the scan we went over to grab a snack at KFC and couldn't believe it when there were two chickens wandering around in the drive through, I said to the serice girl wow those chickens have a death wish LOL!!! She said they hang out there everyday, little did they know that their friends were being handed out the windows to be eaten!!!

We then went over to see Aunty Bernice, who has just recently gone through a knee replacement, it was lovely to catch up and Nakita had a wonderful time. She helped Aunty B eat her dinner, hid in the curtains, carried apples around the room and climbed in and out of her walking frame. Nakita was also very lucky to receive a beautiful knitted teddy bear from Aunty Bernice's neighbour, was such a lovely gesture :)

We finally got home and ate dinner and put Nakita to bed, and I have finally had time to sit down a write a nice long post :)

I will be putting up a video of the scan shortly, and the photos will have to wait until I can scan them in next week.

Next appointment is on Tuesday with our OB again, so hopefully it will be a nice relaxing appointment, with no new surprises!

Morphology Scan Results!!!

2010-06-11T15:49:00.000+09:30

So we have had the scan and here are the results....

Sex ~ Surprise!!!! Not telling ;)
Cervix has ~ stabilised!! Only 0.10cm drop :)
Growth ~ all looking good, and very cute
Uterine Dopplers ~ OB was happy!!!

I will post more information tonight when we get home. And hopefully some pictures of our gorgeous little Flicker!
Thankyou so much for being here for us xxoo

Morphology Scan today!!

2010-06-11T10:55:00.001+09:30

This afternoon we are off to have our Morphology Scan, hopefully we get to see Flicker growing big and strong, for me to have a nicely closed cervix, and it to be the same length or longer than last fortnights. We are taking Nakita along, not sure if she will understand but it will be lovely to share the experience with her as well as Roy.

Hopefully I will report back later this afternoon with great news!!!

Halfway to 40 weeks.....

2010-06-08T22:15:00.003+09:30

It has been a very emotionally, physically and mentally challenging "first half" of my pregnancy, when we first saw those two line we never contemplated that we would have experienced what we have. I knew I would be classed as being high risk, but I don't think anyone could prepare for the onslaught of so many complications being thrown at them over such a short period of time.

40 weeks is the "average" length for a pregnancy, with "term" being from 37 to 42 weeks, so today marks that halfway point, it may not be halfway through my pregnancy but about halfway until we bring our precious little Flicker home. We were very lucky with Nakita, she came home after 11 days at just 35 weeks 1 day gestation, when we were at thw WCH they said we woud be there for 5-6 weeks, until she was term, but with the transfer to our private hospital it made the journey home a lot shorter.

But every baby is different and so many things come into what sort of NICU or SCBU ride is ahead. I thought that gestation was the most important factor, but the reality is that not just one thing guarentees a smooth ride.

I know babies born only a week earlier than Nakita but were less than half her size, and they most certainly weren't home within a few weeks, it was months of care in NICU and SCBU before making that very special long awaited journey home. There are also some very early birds before 30 weeks that had a reasonably smooth journey and were mostly there to fatten up.

So while there are significant gestations that one wishes to pass there are so many other factors that determine what chance your little bubba has, the chances have increased hugely and the grey area has shifted, there was a time not so long ag where 27 weeks was the mark as such. But with increased knowledge, trials and experience the earlier prems now have a much better chance then what they did even just a few years ago.

On one of my visits to the NICU at the WCH, I learnt of a precious wee little girl, born at a mere 22 weeks, generally at this gestation there is little chance for intervention, but as steroids had been administered, she was to be given a chance and when she arrived earthside fighting, they fought for her. A massive journey for her and her family and their strength and courage is just inspirational.

I have the gestations flowing around in my head, knowing what each means, what the chances increase by with each, but I chose not to focus on the early dates as my big aims, yes I am hoping to pass each of the earlier ones, but my big aim is 30 weeks, then Nakita's gestation and 36 weeks, which is delivery at our local private hospital and a high chance of a take home baby, not bub you have to walk away from as they are being cared for by NICU or SCBU, and last but not least 40 weeks or term.... whether it is attainable or not we can still have hope.

Friday we go in for the Morphology scan, we will get to see how Flickers growth is tracking, my cervix length will be checked once again, I have actually lost count how many times it has been checked, and uterine dopplers, checking the flow between bub and the placenta. So while the odds are stacked against Flicker, I know that this little bubba is a true little fighter, and is destined to come earthside and continue to touch your hearts as much as he/she has touched ours.

We don't know what is instore for us and wee little Flicker, but we have armed ourselves with knowledge and have the most amazing support network around us, cheering us on each day....

19 weeks 3 days...

2010-06-04T20:52:00.001+09:30

I had another OB appointment earlier in the week and didn't get time to post what had happened as I have had a mountain of work on and Nakia has been unwell - see post below for all the info.

It was just a quick check up on my cervix length and on the fluid levels. After my cervix shortened by 1cm the previous fortnight I was hopeful that it would have settled, I am still not 100% on the previous fortnights measurement as my bladder wasn't completely empty which can skew the results a bit. But anyway, we started had a chat about what had happened over the previous fortnight, still Braxton Hicks's and cramps, but not at the same time which is a good thing, BH's would be about 1 hour or so of my belly just being constantly tight and uncomfortable and the following morning I had period type cramps that this time went for 1/2 an hour. As neither was as bad as the previous fortnight I didn't ring my OB as it was only if things were worse.

I then showed her a gorgeous little photo brag album we got from our photoshoot with Head in the Clouds Photography filled with photos of Nakita as she hadn't seen her since we had our last appointment when Nakita was 3 months old (we were being seen by her private midwife, to monitor her more closely, and kept her Paed informed), so she had done a lot of growing since then. She was absolutely delighted to see how far she has come.

It was then time for the cerivx length, I was feeling really positive, I really thought that things wouldn't have changed, I felt good, physically, mentally and emotionally, so I was really surprised that I had shortened by another 0.8cm I was down to less than 1cm spare before needing a stitch... we can't afford another shortening like the two over the previous 4 weeks. The cervix can fluctuate so I am hopeful that is just was a "short day" and that it settles or lengthens again. The fabulous news was that although it has shortened it is nice and firmly shut, there are no pockets within the cervix that indicate it is opening and when she applied pressure to my abdomen and subsequently to the cervix there was no funnelling. So all this brings great hope and positivity.

She then checked Flicker quickly and a check on the fluid levels, while there is very little fluid around Flicker, poor little bubba is squished between the uterus and the placenta, stuck in the breech position, there were pockets of fluid at each end, so although not ideal, she was happy enough with the amount of fluid.

I feel now that I can only be positive, there is no point wallowing in the corner, worrying and stressing. I need to take time to enjoy this pregnancy, bless the connection that I have between Flicker and myself and know that what ever will be will be.

And plan that next Friday, the day of our Morphology Scan will be "Long Cervix Day", but I will sit here this evening and enjoy the gorgeous little kicks I am getting.......

Update on Nakita

2010-06-04T16:53:00.005+09:30

Well our gorgeous little girl is almost 2 and I can't believe it, it has really gone so quickly. She is just a delightful little girl, talking up a storm, this morning she announced that she was going to see Grandma, she gathered three pencils and walked down the corridor saying "Bye bye Mamma, bye bye Mama" :) It was just so very cute...

She is booked in for swimmings on Saturdays, but has missed the last three weeks due to illness, hopefulyl she is well enough to go in again tomorrow, as she is doing really well and absolutely loves the water.

She is very much into drawing and lego and loves spending time using her new table (which was our when we were children), and often requesting that we sit with her and build wonderful huge towers.

She has been reasonably well this year, almost half way through the year and just the one hospitalisation for a reaction to the 18 month injection which was the Chicken pox Vaccine, she had become very dehydrated, temps over 40 for 3 days and we couldn't get any fluids or pain rleif into her to help. Hopefully we can avoid it for the rest of the year. This week her asthma and lung issues came to the forefront again, we called hte Locum out on Tuesday night as she was struggling the breath and had a traecheal tug (neck tug, where at the base of the neck at the front where there is no bone, was being drawn in when she was breathing. The locum was great and checked her lungs for cracking and popping and was reasonably happy with her intake and was more than happy to leave her home with us as we knew what to look for and if she deterioated to take her into the ER. But if possible stay home as she would just get exposed to many more nasties going in.

The following day I took her to the GP, to get some changes made to her asthma plan as it was just a "maintenace" plan as such for the summer months, he checked her out and could hear a wheeze on the exhalation and based on her ventolin requirements over the last few months has put her on some new drugs to hopefully avoid the need for admission this year. She is now on a preventer Flixotide, morning and night, and when she goes down, like she did this week to start a three day course of Prednisolone, keep up the Ventolin as needed and bring her in if we are concerned.

It sounds like a lot, but if it avoids the need to go into hospital and we can undertake treatment at home it will make a big difference, and the stress and lack of sleep that comes for everyone with hospital stays, hopefully we can avoid it.

She is also learning about becoming a big sister and for a few weeks she would pull up my top and kiss my belly saying hello baby, she has stopped the kissing, but will still pull up my top and say hello, too cute!

A few photos of Miss N over the past month or so.....

A day at the playground...

Cheeky...

Swimming and many funny faces....

Adventures with food... mess and lemons

Someone found the sunscreen.....

Sleeping....

OB appointment... and another twist and complication...

2010-05-17T18:23:00.001+09:30

So we are approaching 17 weeks, and I went for my OB appointment today to see how things are tracking along. I had a few questions to ask, and was hoping that everything had stabilised as such, but it wasn't to be, I guess we have to take each challenge, deal with it and refocus out positive energy on getting as far as we can.

So the good news first :)

Platelets went up!!! My OB said for now, but I said let me celebrate this one good thing and she laughed and said yes indeed :) HR was 154, dropped quite a bit but completely normal so nothing to be concerned with there, they fluctuate a lot during pregnancy.

Then came the not so good news...

There appears to be not a lot of fluid around Flicker, which really surprised me, as it seems that we are heading for the opposite we had with Nakita which was too much amniotic fluid (polyhydromious). There is a lot of stuff floating around in the fluid that is there as well, dead cells etc, which I guess is normal we just never saw it with Nakita, we saw it today on the internal scan.

Flicker is now feet down, legs squished up heals resting on my cervix, we need Flicker to turn, my OB really wants that to happen sooner. Now this is usually only a concern when a mother gets much further into pregnancy, but as we don't know who long this pregnancy will last we want the turn to happen sooner rather than later. It is the combination of the reduction in fluid and the placenta taking up so much room, it is filling the right hand horn of my uterus and and goes over the septum into the left hand side of my uterus, so basically Flicker has less than half of my uterus to move in and not a lot of fluid to play in either. We know the importance of a Natural Delivery when having a prem especially , if possible, the delivery plays a big role is squeezing all of the fluid out of the lungs and helping in getting bubs to breathe. So I am off to Spinning Babies to see what I can do to make this bubba turn and stay turned.

My cervix has shortened by 1cm in two weeks, which is a lot in a short amount of time :( She is worried that the Braxton Hicks's Contractions that started a week ago and the more recent cramps are making things start too soon. So what do we do from here... increase the appointments and scans to fortnightly, not that we actually got to any further appart anyway, and if it has shortened anymore she is putting me on Crinome cream (sp), to hopefully stabilise the cervix length. I know I mentioned a cervical suture earlier on, but I think that she is concerned about aggrivating that area too much may be too much, but will wait and see what happens with the next scans and if the cream is needed and if that works.

From here I have to go back in two weeks for another cervix length check, but in the meantime if I get any more cramping or the Braxton Hick's increase or in intensity, I am to call straight away, no delaying.

We are also now booking into the Women's and Childrens Hospital as well, so it is a smooth transition when delivery comes, as 36 weeks is a bit of a pipe dream to get to to deliver at North Eastern, and the reality is that things aren't improving, so we are covering all bases to make it as least stressful as possible when the time comes... espeically when we remember that Roy was given admin forms when we arrived in Women's Assessment, then minutes later we were on our way to delivery, we really don't want to be thinking about Medicare Numbers when we arrive, just focus on this little bubba.

So things once again take another twist, I didn't really think it was possible, but what can we do... keep positive, take each day as it comes and just know that we are in the best care possible.

So another day closer to meeting our precious little fighter, but hopefully that day is still many many more weeks away. xxoo

Losing your independance.....

2010-05-14T22:02:00.000+09:30

I am a very independant person, determined and committed, I strive to achieve, setting myself goals daily, weekly monthly and yearly. I try to squeeze every bit out of a day that I can, and if I don't achieve what I have set myself it only makes me more determined to surpass it the following day.

I work better under pressure, I love a deadline and the intensity that builds as the deadline approaches, through my studies and now my work I would always work up to the last minute, trying to add in just that bit more information and extra detail that would make the difference, staying up to the wee hours of the morning or all through the night if need be.

This desire to achieve runs into my everyday life, if you know me through Facebook, you would have seen status updates listing a bucketload of things I had achieved for that day, cooking, cleaning, working, washing, ironing, visiting markets and so on, by the ends of my monster days I am usually completely buggered, but go to bed witha feeling of achievement.

But things have had to change, having a high risk pregnancy is more than just a few extra scans or appointments with my OB, my dreams of a relaxing, enjoyable "normal" pregnancy flew out the window when I got to 8 weeks, week by week there have been more complications more issues that have come to light, and I have had to make some dramamtic changes to my lifestyle to make this pregnancy last as long as possible.

So the independance that I strive on is being striped away from me, and it is hard... Hard for me to accept help, difficult for me to ask for help, and frustrating to sit down while someone lugs loads of our wet washing around, or make numerous trips to the big bins outside, or to wait for help to get Nakita in and out of the car. Everyday tasks that I just would do day in a day out I have to modify how I do them, limit myself to 20 minutes at a time on my feet before resting, sitting down and doing jobs that I always did standing up, not run up and down the stairs time and time again each day. I cook sitting down, which is very unusual, I am not a big fan of being so close to the frying pan or saucepan, it brings a whole new perspective to cooking, I have to be more prepared, get out everything I need, sit down and do the prep then cook, it seems so unnatural but it has to be done.

I am used to just jumping in the car when I need to, run errands and take Nakita out and about, especially on the days I don't go into the office and Nakita is home with me and Roy is at work. But now we are more housebound as such, I can't take her up to the park to go on the swings the walk is too far, I can't stand around for half an hour pushing her on the swing, or chase her around. We spend lots of time playing on the floor, drawing, building and reading books and save the visits to the playground for when Roy is home and can take her out.

I had a raft of plans as to what I was going to do when I finished my secondment, after working two positions for 4 1/2 months, I was going to catch up on all the things that I got behind on and organise the house, and shift a few things around, sort out all the baby paraphenaelia and get everything organised and in place before this precious little bubba arrive.

We weren't at all organised when Nakita arrived, we had just had the baby shower two days earlier, I was still working, the day I went into labour and gave birth to our precious little girl I had worked a full day and went straight to yoga and hadn't even had dinner when it all started. The room was not at all organised the pram hadn't arrived, her car seat wasn't installed, we had washed a few things but they were all 000 and she was in 00000. The plan was to have everything organised, to bring our daughter home into an organised house, meals cooked and frozen and everything "ready" instead I rushed away form the hospital the day before we took her home getting the carseat installed and picking up the pram, which I got the shop to put together for me as I didn't have the time. We got her home and I couldn't workout how to put the pram up. It was stressful, dissappointing and very hard to deal with, I didn't feel orgnaised or ready. This was not how I wanted to bring my daughter home. So this time it will all be done and be done early, even if everything sits there for a few weeks waiting for that special day, I will have it all organised.

So while I won't be able to do it all my way, in my time and when I like, I will have to rely on the help of others, I am sure the end result will be much more than what we had ready for Nakita.

And it will be all worth it, every day that Flicker is tucked up inside of me safe and sound the better, the more I take it easy it lessens the chance of being put on bed rest or being admitted down the track, which would break my heart to be separated from my gorgeous family. The less time we look potentially at the inside of NICU and SCBU, the sooner we get to bring our precious little bubba home.

We have all had to make sacrifices, but we need to look at it in scale and that it is all a temporary measure, and the weeks ahead will only be a very small portion of our lives ahead with Flicker, but the difference it will make last a lifetime.

It's complicated....

2010-05-01T13:41:00.001+09:30

It seems as though my dreams of a normal boring pregnancy went out the window weeks ago, I wanted nothing more then to enjoy a full term pregnancy, a few minor complications would have been ok, but I never contemplated going through what we have over the last couple of months.

Then when it seems that everytime we feel that we know where we are going and how we will deal with each complication, another arises, it raises the bar once again, we go through the emotional rollerocoaster that comes with the news and after a few days we regain our composure and we are prepare ourselves mentally and emotionally again to face what has been thrown our way.

I wonder why we are being delt this deck of cards, why we are being challenged and pushed to our emotional boundaries? Why don't we get to experience that dreamy pregnancy bliss, waking each day full of exictement as we watch my bump grow, planning decorating the nursery and Nakita's new room, chatting excitedly to family and friends about a late October or if we were to go overdue an early November arrival.

The many times I have been in the waiting room at my Obstetricians office waiting for yet another appointment, I look around and see beautiful glowing pregnant mothers, many of which are approaching the end of their pregnancy, they are chatting excitedly to their partners, or reading magazines with a beutiful warm glow eminating from their faces.

Before long I can't look anymore and I usually grab the closest magazine and emmerse myself in the gossip of the week or month, not really caring about who is fat or skinny this week, or who is wearing what, but it is less painful then watching something so beautiful that I know I won't get to experience. At the mment it is too raw, but in time it will become easier to accept.

I am not angry or upset that we don't get that experience, just dissappointed, as it is outside of my hands, there is nothing I can do to change it, and I am accepting that our journey is a different one.

When we were first told that we wouldn't be making it to full term by the OB at the WCH, I was upset and angry, there was no compassion in what she said no thought, just flat out and blunt. At the time we were losing one of the twins and desparately trying to hold onto the other, but a small stray of hope wouldn't have hurt. A few weeks later when I spoke with my OB, she also said that we wouldn't make it to term and that yes the OB was right, but she also added that the OB known for not being particularly compassionate.

So what complicates this pregnancy and what does it mean....
History...
PPROM (Preterm Premature Rupture of the Membranes)
Spontaneous fast progressing labour
Dialation with very little pain or length of contractions
Amniotic Band (although unlikely that it should occur in this pregnancy)

Maternal...
Septate Uterus, heart shaped uterus, known for PTL (Pre Term Labour)
Possible IC (Incompentant Cervix)
A twin pregnancy, which is now a singleton pregnancy
Prolapse, of the Uterus or Vaginal Wall, which we discovered was happening this week.
Low Platelets
Location of the Placenta, being over the top of the septum, where there is no blood vessels to feed the placenta, so relying on the outer reaches of the placenta to draw oxygen and nutrients in to help the baby grow.

What are we doing to get as far as possible?

Very regular appointments and scans with our OB, we were hoping on the appointments being 4 weekly at present but we are still on fortnightly appointments and scans.
Regular BT's (Blood Tests) to check platelet levels, signs of infection and the like, to keep track of what is happening.
Scans on my cervix length and growth scans on bub to hopefully give us any clues that something may be going wrong.
Resting resting resting.... due to the recent prolapse I have to rest, spend short amounts of time on my feet and minimise any lifting or exerting myself.

So we are keeping my OB on her toes, she is being challenged as much as we are, but we have the right person looking after us, and yes it will cost us, but we can't put a value on the arrival of our child safely, and hopefully the medicare safety net kicks in soon :)

So while we are faced with an uphill challenge we wouldn't have been given this if someone didn't think we would be able to cope with it. So each day we wake we know we have made it one more day, and we will take it one step at a time, and there are many others going through difficult journeys, even the art of conception is not as simple as it sounds, and so many are struggling through the pain and heartache of not being able to conceive naturally and having to follow long and difficult journeys of IVF or similar. Pregnancy isn't always the easy thing for many and at least we have been blessed with the chance so we need to nuture and work together to bring this precious little Flicker earthside safely.

One day at a time....

Scan Images 12 weeks 2 Days ~ Flicker

2010-04-28T21:27:00.001+09:30

Growing so much!!!

Profile awwww :)

Arms up doing the mexican wave :)

Scan Images 10 weeks ~ Flicker

2010-04-28T21:23:00.004+09:30

Our Little Flicker growing stronger :)

Now 3.10cm long!!

Flickers Heartbeat is getting stronger now 170 BPM!!

Scan Images 7 weeks 4 days ~ Flicker and Firefly

2010-04-28T21:02:00.013+09:30

Scan 15th March, the first photos I have of Flicker and Firefly

Flicker on the left and Firefly on the right

Flickers Heart Beat 150.4BPM

Flicker our little fighter

The good and the not so good news... the last few months

2010-04-27T22:31:00.001+09:30

So I return to the blog again, I have been away from it for a while as life took over... But over the last few weeks I have started to return to more of a "normal" working life, and getting back to things that I have been missing since the start of the year.

So what is the news..... you will need a teapot full of tea, and few biscuits and be prepared for a long read!

I am not sure where to start but I guess from the beginning would be a good place. We decided that we were ready to start to try to take the next step in our family by extending it, we made the decision at the end of last year, with the expectation that it could take some time, and that by hopefully the end of the year we might be pregnant.

We were blown away that we were truly blessed to discover that we were pregnant the first month of trying, we were excited and looking forward to hopefully a much smoother pregnancy and planning for bringing a full term bubba into the world sometime late October early November.

For the first couple of weeks things seemed to be going smoothly, I had booked into my OB again, and was a little disappointed to discover that she would be away for the month of October, but she would be there for the pregnancy and the OB she partners with has a wonderful reputation and I have only heard lovely things about her so I knew that I would be in safe hands. And I was content that they let me know right from the start.

*WARNING ~ If you don't deal well with blood etc, maybe skip a few paragraphs ;)*

Then things started to go wrong, on the 8th of March I was cooking dinner, Nakita was happily eating in her highchair and Roy in the office relaxing, all of a sudden something didn't feel right, I ran to the bathroom and, was horrified to find I was bleeding, heavily, I yelled out to Roy, telling him to get down to me quickly, the shear horror on his face and tears running down mine said it all. I had bled with Nakita for two weeks, but it was nothing like this... He came running back in with my phone and the number for the WCH.

I rang them and asked for Women's Assessment; spoke to a lovely Midwife who said to come in straight away. So I cleaned myself up, got changed and grabbed my handbag phone and keys and kissed Nakita good night and gave her a huge hug and a bug hug and kiss for Roy and went out the door.

On arrival at the WCH, I walked in and was seen quite quickly for a blood test to check my HCG levels (to estimate how far along I was) and whether a US was going to be worthwhile. After a cry and chat with the MW I returned to the waiting room, full of lovely round pregnant bellies, the wait was to be about 1 hour for the BT result, about half an hour later and MW told me to drink some water so they could do an ultrasound.

About 45 minutes later I was taken through, the room was subtly lit, I was so scared, but listened to the odds the Ob gave me, and waited, then her pager went off and she and her assistant left as there was an urgent issue in a Regional Hospital. So I was left alone in the room. In the corner to my right was an infant resus table, it seemed so far away...

About 10 minutes later they returned and we went to try again, she warned me that she wasn't so great with the ultrasound, and I just nodded and waited... there was silence, it felt like an eternity as I tried to look at the screen to see what was happening.

Finally she spoke, there are two sacs... but one sac looks further behind than the other sac, I think I can't find a heart beat in one of the sac, but I can't tell in the second sac, but I am not sure, you are going to need an ultrasound on the "Rolls Royce" machine but it can't be done tonight, so I am sorry I can't give you any more news..... So that was it, I gathered my things and before I left I asked my HCG levels, they were 32,000, which were very good.

So I left the hospital in a daze, I was in limbo, it appeared that I was pregnant with twins but was losing one... but would have to wait to find out what was happening. Went home and told Roy and we cried and really didn’t know what to think...

The 9th of March... my 32nd Birthday....

I was up early as usual, got everything organised and dropped Nakita at Daycare and returned home, emailed everyone at work to let them know that I was not coming in and I would advise when I would be next available. I kept it broad; I didn’t want to come up with reasons or responses.
I rang up the WCH and booked in for my scan, the earliest appointment I could get was Thursday @ 10am... two days away  I then decided to call my OB’s office to speak with them to find out whether I should do anything else, they immediately put me through to one of her Midwives and I went through what had happened overnight, she was lovely and sympathetic. She then Spoke with my OB and I had an appointment booked in at 10:45am, only a bit over an hour to wait.

I arrived for my appointment and there were two beautiful mum’s quite late in their pregnancies, glowing faces, beautiful large round bumps and as it appeared to me in blissful happiness as they dreamt about the impending arrival of their sweet little babies. At that moment I would have done anything to be in their position, to take the worry and the fear away, to have a long pregnancy, without complications.... so I grabbed a magazine and immersed myself in the gossip of the week, trying to ignore the general chatter and excitement surrounding me.

After a short wait the MW came and got me and she took my BP, had a chat about Nakita's birth, and what had happened over the previous 24 hours. I then returned to the waiting room waiting to see my OB. I grabbed that magazine again, but didn't need it for long as I was taken in.

We sat down and had a quick chat, and then it was time for a scan. This time she did an internal exam, it was going to show a long more than the external one the night before, and she was miffed that they hadn't done an internal the night before...
I was nervous, but I didn't have long to wait, she found the first sack, it had a flickering HB, she measure it as 125BPM, I breathed out slowly.... she then continued the scan and found the second sac, she confirmed that there was no HB, a mass of blood and clots. The viable bubba was in the right horn at the top, the other sack was in the left and stretched down to the cervix, covering the cervix, and attached to the first sac.

She then did a few cervical measurements and we were looking at 2.19cm, a very short cervix

Following the scan we had a lengthy chat about what was going to happen now, it appeared that I had lost a twin, and that the bleeding was coming from the second sac, it could takes weeks for the bleeding to stop. The viable sac wasn't safe as it was attached to the second sac, which meant that it could drag it with it.

She confirmed that IF we made it to 12 weeks, she would like to do a cervical suture at that point, she will continue to monitor it and get it rechecked at the US I had booked at the WCH on Thursday, but it may be the best option to prolong the pregnancy, even if it does come out longer, due to the shear speed on my labour with Nakita and the fact that I will highly likely go quicker we need to put in place whatever we can to make this pregnancy last.

She wrote referral for the US on Thursday with a raft of other requestions and sent me for BT before the scan to recheck the HCG levels and Progesterone.

Then it was time to go home and wait..... Happy Birthday to me.....

Wednesday 10th March... waiting

Wednesday was waiting day, resting and trying to get through until Thursdays scan, the bleeding had slowed and that had helped my confidence, I chatted on the forums and had a wealth of support around me, the messages I received helped get me through that day.

Thursday 11th March

Started at 1am, I woke to cramping, I was frightened, I lie in bed looking out the window, wondering what was happening, and then a gush, I ran to the bathroom and another Bright Red bleed, once again just dripping... I felt numb... After I cleaned up and got back into bed, how on earth was I going to go to sleep? So over and over and over in my head I recited, I and sending you all my strength and courage Flicker, my little fighter, I have no idea how many times I repeated this to myself and Flicker, but eventually I fell asleep.

We were up at 7am, we all go ready and I dropped Nakita at Daycare and returned home to eat some breakfast and get organised. Got all the referrals and left for the WCH. I knew where the Pathology was as I had been there a few times with Nakita, from the wards for BT's then for the sweat test. It was 15min before scan time and I asked if they had time to do the BT before hand or if I best return afterwards, not a problem and within seconds I was taken through.
The lady said she would fast track the results but they would go to my OB.

I then headed over to Women's Ultrasound, showed the additional referral and waited in the corridor, about 10-15min later a gentleman came out and said he was ready for me. My confidence was low due to the cramps and bleeding the night before. It wasn't long before we were all ready, he looked a little confused until I explained I had a septate uterus... ahhh.. ok, I had also said there had been two sac's on Tuesday, she said there were no long two sacs, one left and a mass of blood and clots floating around, I realised what had happened @ 1am, the second sac had ruptured, causing the fresh bleed and the cramps. He went in for what was the viable sac, it was in the top right hand corner, he zoomed in and picked up a HB 134BPM, I started to smile, the HB had grown stronger, going up by 9BPM over the two days, Flicker was getting stronger. He then did a quick measurement and confirmed that Flicker was on dates. This all actually took about 15min, he then started measuring other things, he measured my ovaries, and they were both normal and fine, and looked at the tubes. He then realised that I needed an internal scan for the cervix, he leaves the room to speak with his boss as to what the protocol was. Nearly 10min later he walks back in with his Boss lets just call her Dr K. She was happy on arrival, she then became a person whom I don't wish to meet again anytime soon.

She proceeded to tell me that I would not make it to full term, we she is not a person whom I need on my side, I need positive reinforcement now, or at least some hope that I will make it to term, I truly hope that I don't encounter her again during this pregnancy, and I am very glad I have my OB who is brilliant at her job and has excellent bedside manner

My cervix was remeasured and came in at 2.70cm, brilliant that extra 0.5cm brings it over the 2.5cm, it may not change the way in which we proceed with a cervical suture or not, but that will be discussed with my OB.

Then it was all over, I gathered my stuff and headed home to wait once again, although this time was more positive that Flicker had grown stronger, and that now that the second sac had ruptured, hopefully the blood will just trickle slowly out and not drag Flicker as well.....

Friday 12th March... HCG results not so good...

I was feeling confident in the morning, the bleeding had slowed, it was now a matter of waiting to hear from my OB, I knew what the levels should be, it had been about 80 hours, so by this stage we wouldn't have expected them to double as it goes out to about 90hrs for that to happen at 7-8 weeks. But I was hoping for a good number. By midafternoon I hadn't heard, I rang that Pathology to see if the test was complete, it was and they confirmed that my OB had called at lunch time to confirm the results.

So I knew she had them I just had to wait. About an hour later they came through, Progesterone was good at 77, I had no idea how good this was as I had never looked into it, but discovered afterwards that it had to be between 11.2-90 in the 1st trimester. Then the HCG results came, I was told they my OB wasn't happy with them, 38,700, i was shattered, they were so low, they had gone up but not by very much, I began to lose confidence again. I was told that due to the bleeding it was inconclusive so would need to wait until I saw my OB on Monday...

I returned to the forums and chatted again about what had happened, a couple of people told me that it almost certainly confirmed the loss of the twin, and that my HCG levels would have been reflecting the rate for twins, but now there was a singleton they had dropped in there doubling and with the bleeding would need to find a new rate. To not get too worried about them and just focus on the heart beat I had seen twice and the fact that it had grown stronger.
A long wait weekend was ahead of me..

Sunday 22nd March... the PCB Expo and it happens again...

I knew it was coming, I could feel it last night. It started in the afternoon at the Expo (great timing - NOT) I started bleeding again, but I am keeping positive as why..... it was heavy, it wasn't bright red, it was old blood, but plenty of it so taking that it is a good sign...

In some ways I am glad that it is finally happening again, as I have known that it has too, I haven't had any cramps, or niggles so I am not stressing about it, will probably just call OB's office tomorrow to let them know.

I have been able to deal with it pretty well, I knew it was inevitable (was pretty hopeful thinking that, so much would get absorbed)....

I think I will be able to relax a bit when this bleeding finally ends and I know that Flicker is safe....
I had dinner booked with some girlfriends and I decided to still go, what was the point of staying at home and just waiting and wondering, I needed to get out and take my mind of everything, and the dinner did just that, got home late and I was tired so it made it easier to get to sleep as well.

Monday 23rd March

I am still bleeding today, but no red bleeding. I called my OB's office today, and spoke to the MW just to let them know what was happening, and my OB is at a conference for today and the next two days. I had to update the MW as she didn't do the actual check in paperwork, she had seen me the first time I went in, so I had to update her on the loss of the twin, rupturing of the second sac, additional scan, cervix info etc.
I also explained the losing of what I think are bits of the plug, which was the precursor this the current bleed, and that I did lose pieces with Nakita, but we didn't get to test as she arrived before I had the chance.

So they spoke to my OB at lunch time and I just had a call back, I have to go and see her @ 11:45am Thursday at the other practice based in a hospital. She doesn't want to wait until Monday/Tuesday (can't remember which) when I was booked in for another scan. So I can assume that she is probably thinking the same as me or similar in relation to the cervix.
The positives that I am taking from this are that we have some clues to go with, we aren't flying as blind, and I think my OB want's to really understand what is happening with my body and how we can hopefully prolong this pregnancy.

I'm doing ok, just really feeling like it is all a bit beyond my control and I just have to go with the "flow" (excuse the pun) as such. So I will keep plodding along for the next few days and we will see what Thursday holds....

Thursday 25th March... another appointment and scan...

After going to the wrong hospital ~ I blame baby brain for this one!! But lucky enough I got there only a few minutes late.

A mixture of news, and got a long way to go....

Bub was measuring about 1 week behind, but development is in line with 10 weeks, so it may just be a small bub, but we went through all my scans and dates and have revised my due date, which "helps" and are hoping that it was a late O.... with the reduction in growth, not sure if it is a good thing or not, but going with it for now.

Best measurement we got was 9 weeks. Breathe......

The placenta is good, attached to the outside of the uterus (not the septum) and is nice a high, good size, the cord flow looked good and HR nice and strong, also nice little arms and legs wiggling away. So.... some good positives!!

There is still quite a lot of bleeding to come, so disheartening to know that I have so much more to come, while I have lost a good amount there is still a lot to go. My OB was quite concerned during the scan, but it is just a waiting game, still a long way from getting out of the woods yet.

I am still booked in to see her Tuesday, but if we get through the next 4 days without a bleed then I can cancel the appointment until the next bleed....

We are hoping that the bleeding resolves sooner rather than too late in the pregnancy as if we go down the path of a Cervical Suture the risk of doing it while there is still retained blood and clots is too dangerous, or would risk removal and replacement of the suture.

So there are positives there, but still a long road to travel before I can relax...

I have to say that this is really challenging me emotionally mentally and physically, but why will are still going forward albeit slowly, each day gets us one day closer.... just one more day...

Tuesday 30th March... Yet another OB appointment...

We had pre booked this appointment 2 weeks ago and I umm'd and ahh'd about whether to go or not as I had seen my OB on Thursday after my last bleed, but after the queries on bubs growth I decided to go and have a check especially with the long weekend coming up.

♥ The second sac is still attached at the bottom of Flickers Sac
♥ The clotting has liquidized quite a bit more, which is really good, the reduction in clotting is a good.
♥ Shape of Flickers sac is improving and is still firmly attached to the side of the uterus, the lifting off the septum wasn't visible today, so hoping it has re-anchored itself.
♥ Flicker is growing
♥ Has grown in line with the last scan, so I am going with being 10 weeks today
♥ HR is 170, really good and strengthened even more

My OB seemed happier with today’s scan, still got a lot to go before we can be safe, and what is left of the clotting and the blood needs to be either absorbed or escape before anything like a cervical suture is done, but will know if that is going to be necessary after the next few scans.

Any issues between now and my next appointment - to call my OB on her mobile, she told me this at least 3 times, it is really comforting to know that she is just on the end of the line should I need her.

So I feel stronger and just a little more confident as we go along, after each appointment we say, we've made it just a little bit further....

Thursday 15th April... NT Scan and Cervical Scan....

The Good News!!
♥ Flicker is almost 7cm long and is perfectly inline with my dates
♥ The bleeding has reabsorbed back into my body!!!!! An absolute miracle!!!
♥ Cervix is 3.8cm!!!!
I spoke with the OB today and we discussed that the shortening may have been due to the MC.

The not so good
♥ Have been cramping badly for the past three hours, I assume it is most likely due to the cervical scan, I am on the couch and DH is looking after N as I can't stand up, as it hurts too much. So I am going to have an early night and hopefully it will have settled down overnight. Why can’t this be easier????

Monday 19th April... OB appointment... results, more complications and the plan...

OB was so excited she couldn't believe that:
♥ The bleeding had stopped
♥ The rest of the bleeding and clots had broken down and been reabsorbed
♥ That my cervix was longer

She couldn't wait to get the US happening so she could have a look for herself Flicker was playing around and being particularly cute as well

BT results were back and everything looks normal or as per my pregnancy with N, still waiting on the final results for the DS etc, delays with the Lab but should get a call tomorrow about them.

Adding to the list of complications now.....

Platelets were down to 149 from 176, scary thing is they are exactly the same level at the same time during my pregnancy with Nakita I wanted to make a bet as to what is going to happen, we both laughed and I said at least I am consistent. Two weeks before delivering N they were 112. So I am going to be on four weekly BT's for my platelets. But if they stay above 100 we won't be too concerned.

She is a concerned with the positioning of the placenta, as it is now right over the septum , it is not the best placement for it, as the blood flow etc to that area is lower. For some information about the septum, generally if bub implants on septum it leads to M/C as there is little or no blood flow to the septum, Flicker and Firefly’s sacs were implanted on septum and uterine wall. She said that we may expect some growth restriction, so I will be having growth scans, which will be done with the cervical scans and increase if there are concerns.

We are leaving the next scan of my cervix until the 20 weeks scan at present, unless I have bleeding, cramping or lose pieces of plug - immediate call to my OB. I am happy with that especially after the cramping after the last one. Then again at 23/24 weeks, 28 weeks and so on. I don't think I will have trouble passing the Medicare safety net this year I am glad that my OB can do the cervical lengths and the growth scans in her office so it will be done as a part of my appointments, just all other scans will be done at the high risk clinic, which is more expensive that the normal places I have been too.

I am on four weekly appointments for the next 3, then two weekly for 2 and then weekly from 30 weeks. But should anything change with all of the above the appointments will increase.

So I am looking at it as all good news or things that we will deal with, monitor and test, and I know I have the best person looking after me and she will highly likely be at the delivery as it is highly unlikely we will make it to October, which I am ok with, as much as I wanted to get to term, I can deal with the reality of another prem, my family and support network will also understand a lot better and we will be more prepared for it.

As I look at where we have come from over the past 5 weeks it is a miracle that we are in the position that we are now, and I know the Flicker is a stayer, we will be keeping him/her safe in my tummy for as long as possible and deal with the complications as they arise.

Keeping positive, as I know that I can now face what lies ahead....
So it is from here that I leave this massive post, we have started to spread the news so my updates will be more regular and back to being done on the day... If you have read this far then I congratulate you as I really didn’t think anyone will get this far.

Sneak Peak to our photos!!!!!

2010-03-08T22:38:00.000+10:30

All I can say is WOW!!!

Head in the Coulds Photography Photoshoot

It was an 8am start in the east end, but we had a ball and I can't wait to see the full set of photos!! Kate was absolutely lovely and Nakita greated her with a big warm hug :)

Sliding into the pool :)

2010-01-08T22:21:00.001+10:30

Nakita love's swimming and here she is sliding into the pool, she will do it over and over again :)

Walking!!!

2010-01-08T22:20:00.001+10:30

Nakita Walking to Aunty Benita from Mum :)

"Kita"

2010-01-08T22:18:00.000+10:30

The gorgeous Nakita aka "Kita" on Christmas Day :)

Ok ok ok... so where have we been.....

2010-01-08T22:16:00.000+10:30

Life has just been hectic for the last couple of months, so many changes and goings on!! Just a brief summary an what we have been up to!

I was seconded to work for Delfin in the role of Landscape Manager, and am now based out at one of their Developments in the north of Adelaide, I am still however still undertaking my other work, which involves me on going from meeting to meeting sometimes with the same people but changin hats ;) It is a great challenge and I am enjoying the change, it is unusual being back in a larger office again, but it is similar to being back in Canberra, especially the ATCO Huts LOL!

I have also been getting into sewing and have a lot of projects ont he go, With Roy's sister Benita, we managed to sew 47 gowns for the WCH NICU and SCBU for Christmas, it was wonderful to take them in and deliver the box on Christmas Eve (all freshly washe din lux flakes) ready for the staff to dress all the precious wee little bubbas (and some bigger one's too) for Christmas day. We have also received two wonderful letters from them thanking us for the gowns. I have some material ready to start with the next batch and the left over christmas gowns we were unable to finish we will complete for next year :)

Roy is still working for the same Company and things are going along as per usual, he is still going to the gym, although has had a few breaks to spend some extra time with Nakita and I or go for a swim in the new pool!

Nakita well has had a HUGE 2009, we have gone through such a crazy year and I think we were glad to reach the end of it and hopefully start a fresh this year. At least we have managed to get some answers and we are now able to deal with a few health issues that arose over winter and her Gorss Motor Skills.

It was a tough year and little Miss had four trips to the WCH with two hospital stays requiring oxygen and further treatment, she had 9 significant respiratory infections and I have lost count how many what we thought were "colds". She went through x-rays, blood tests, testing for Cyctic fibrosis and a lot of trial and error with Oxygen and Ventolin, and she is one of those quirky cases where she can still giggle and crack a smile, but having a lot of trouble breathing at the same time. Which is why we didn't realise things were as bad as they were when she was first admitted. But the good thing is we have answers and we are now able to treat the issues and we know how long we can keep her at home before taking her in or calling the Ambos'. There have been a couple of times since her last admission that we were borderline taking her in, but we held out at home and it worked out well.

Her condition is Atelectasis of the right lung, which simply means that part of the lung doesn't work properly, it won't inflate, it was either caused by her prematurity or from one of the repisratory infections she had over the Winter. We have her private Paediatrician and the Paediatricians at the WCH who have her case notes and know how to manage her, and her files has grown significantly over the year. We also know now that if she is having problems breathing to just get her to the WCH as her Dr's won't be able to do the testing to help her anyway. She has a Chronic Cough and when we are catching up with friends and more specifically Prem friends I feel horrible when she coughs, and I can't say quick enough that it isn't something new, but I fear that it could be, as her first hospitalisation we had no idea she was ill and have spent the morning with prem friends at a birthday in the hills, we were lucky it was outside, but I was horrified to discover that she had Pneumonitis :(

She was also diagnosed int he middle of the year with Hypermobility which is being too flexible, and in her situation it is the hips and knees. You would have seen all the videos in the blog of all of her developments so far and tonight I will put up some more which will be very exciting! We have been going to weekly sessions for over 6 months and we are now on a break and her next appointment is on teh 25th of January and hopfully she will walk into the appointment :)

I also have a mountain of photos to add as well, but need to upload them first so we can show them off as slide shows, so you get to see more without having to scroll down all the time.

Nakita is just an absolute delight, she is doing very well and we need to book in her 18 month check up as we have just past that date, another job for next Friday! She is talking and babbling a lot and she can say her own name "Kita" and it is just too cute! Her determination is shining through but she is still quite cautious at time esspecially in the walking department. She loves swimming and we are continuing her lessons especially with the pool, ad she will be due to go up to the Advanced Waterbabies class soon.

Well that will be all for now, I will head off and add in the video's and maybe some photos, although I do need to get some sewing done tonight as well!

Love to all
xxoo

Our little Rockstar!!

2009-11-26T23:57:00.001+10:30

Rockin' it out at daycare!!

A long overdue update!

2009-11-26T22:13:00.000+10:30

Nakita is just growing into the most inquisitive, delightful little girl

She is 17 months old, crawling, cruising and walking holding onto our hands, she is still attending physio weekly at the Women's and Children's Hospital, we are so grateful to the intense program she has been in, it has really given us direction on how we can help her, help herself to learn. It is amazing to see the development, in the past 5 months she has gone from a a baby who would just sit and play, was afraid of moving our of her zone, would go backwards on her tummy, and would occassionally stand holding onto the couch.

We don't expect that she will be walking this year, but in the new year we will have a runner, as she seems to want to just run around.

Each day there is something new and she is very definite as to what she does and doesn't want. At dinner time after her mains we always ask if she wants fruit and depending on how full she is she nods or shakes her head, and if she has shaken it she will bash the fruit away. So we now know when not to bother

I don't bother getting worried about what she eats/how much etc. she feeds herself by hand, but will hold a spoon, just not eat with it. I am a little concerned that she isn't having enough dairy, mostly as her milk is down to about 100-150ml a day, she gets yogurt mixed with her oats but only ever gets halfway through so getting about the equivalent of 1 tablespoon of yogurt and a piece of cheese. But i am sure it is just a phase

She is cruising along well and she is gaining confidence, which is just delightful too see her excitiment and she ventures along the kitchen bench, tonight she managed to go from standing to sitting under control and didn't get upset, which is just lovely another skill

She has started to put a little plastic phone to her ear (off her little playtable) and we always say "Hello Nakita" when she does it, it has taken us months to get her to even put the toy phone near her ear, let alone a real one, with out her looking at us as if were a nuts and pushing the phone away, hehe.

She is a real social butterfly and every adult we meet who comes across as a "nice" person she immediately wants to give them a hug, and she will literally go from person to person, just giving the most gorgeous little hugs.

She was however getting completely freaked out by other children, she has her own very defined personal space and would get VERY upset if other children came in, touched her, patted her head etc. Although there were signs of improvement yesterday at daycare, where she was rocking on a little horse and was happy for the other children to also give it a rock, which was a big step

We look forward to watching her grow and develop, with a tinge of saddness as our baby girl is becoming a little girl... awwwwww....

Please Support the Fight for Preemies /Prems

2009-11-08T12:06:00.003+10:30

Around the globe each year over, 20 million babies are born too early, so very very small and with so many battles ahead of them ― more than 21,000 a year are born in Australia alone, and our little girl Nakita was born almost 7 weeks too early, this Blog is her story and her journey, so when she is older she can see how far she has come. November 17 is when we fight, but supporting the March of Dimes.

Premature babies as early as 23 weeks are fighting for their lives every day, and it is due to the teams of Neonatologists, Paeditricians, Doctors, Surgeons, Specialists, Nurses and Parents that help these little miracles fight to live every moment.

We are proud of all the premature babies we know, especially our little Miss Nakita, they are true miracles and we are blessed with their presence earthside.

The jorney along the NICU rollercoaster is just that, an up and down ride of highs and lows, twists and turns, and every ride is different, support the March of Dimes by joining the fight and adding a link to your blog here Bloggers Unite Fight for Preemies

Take care and join the fight!!! xxoo

Physio Appointment... what a groover and a mover :D

2009-10-26T23:05:00.001+10:30

Well we are back and Nakita was an absoulte star

Whenever she hit a button on the table and it played music she danced She wiggled her bum if she was standing, shimmied her shoulders and wiggled her bum if she was sitting. We had lots of giggles and laughs and she did really really well

We had two new physio students who were lovely, when they first introduced themselves Nakita wanted to give one a hug she reached out and wanted the physio to carry her to the room

The reassessed her using the AIMS scale and Wooo Hoo they gave me a full copy of the chart and scale they are as rare and hen's theeth and I know heaps of people looking to see one :)

Nakita score a 44 this time, up from a 27 at 12 months. She is still not on the charts for her actual or corrected age, she hits the 5th%ile for a 12 month old, or 50th% of a 9 month old. But the great news is that she has stopped falling down the chart

We have a few more exercises to work on this week and hope to see some improvement in a few areas, she is very tentative bending down to reach for things when standing, isn't pulling up beyond kneeling, we are working on getting from sitting to standing and a few more things.

Either way it was a fabulous session, they have all been good, it was very exciting that she got to "show off" and they are also going to use the video I did to assist in the educational side so that is pretty cool too

Happy Days!!

The Evolution of Crawling :)

2009-10-23T00:16:00.002+10:30

Here is Nakita in "The Evolution of Crawling", we can't wait to her physio appointment on Monday to show off as we haven't seen them since she started crawling :)

Bundles of Buns, you will fall in love with Cloth Nappies when you see this!!

2009-10-21T10:59:00.000+10:30

Our Bundles of Buns nappies arrived last week, and oh my they are just gorgeous, soo soo pretty, and their wee and poo catching ability it just fabulous, four hours and no leaks!! I am thrilled with the fit, nice and snug, but didn't leave any marks on Nakita's chubby thighs - yes we have Chub Chub Chub!!!

Here are a few piccies of Miss N in her BOB!

Day 3 and we are doing well at home so far :D

2009-10-17T11:28:00.001+10:30

We made it through the night, thanks to 6 puffs of Venotlin every 2 hours and closer to 1 1/2 hours this morning, as she was starting to work too hard... *yawn* She drank a bit more milk this morning which was good, she kept refusing water and she had a little bit for breakfast, but wasn't even keen on her favourite eggs or porridge and yogurt

We are trialing 4 puffs 2 hourly during the day today, to see how she goes, the neck tug is there but hasn't worsened, so we are staying where we are. Things go pear shaped when she gets upset, and calming her breathing and resettling her takes time, but lots of mummy and daddy cuddles for little Miss N

Hopefully the AB's start to kick in soon as she hasn't improved yet, but we are giving them time to work.

So we are pretty happy with how we are controlling it at the moment, and really glad her Paed said we could boost the Ventolin up as far as we are going as without it we would have had to take her in by now without it.

She is very mucusy, and coughing quite a bit of ick, the ointment is working well on her eyes as they look quite clear this morning, we just have to conitue using it 24-48 hours after it looks clear, we made the mistake on a previous occassion stopping it too early and it kept reoccurring.

She is coughing quite a bit it bed, but we have it elevated on bricks at one end and she is also elevated on a pillow, which helps, but hearing her sad little noises and coughs over the monitor is hard to hear.

I feel that this bout we are more in control, lets hope the combo works and we get some improvement over the next 12 hours

Nakita Won :)

2009-10-16T23:19:00.001+10:30

How cool is this, and totally unexpected as there was some very tough competition!!

http://www.lilaussieprems.com.au/premmie-photo-competition-winners/

Pretty excting, I hope we can do that session a bit later in the year when the weather warms up, I am really looking forward to having the photo shoot, it should be lots of fun!

This is a link to the blog of Head in the Clouds Photography

http://www.headinthecloudsphotography.com.au/blog/

It's going to be exciting!!!

Well Nakita had a few days grace.. but has come down again..

2009-10-16T23:13:00.006+10:30

Tuesday Paed appointment... chest clear

Then yesterday...Slight snotty nose this morning and cough increased during the day and a lot worse overnight, she had developed a small neck tug, so as per her Paed recommendations we boosted her Ventolin to 4 puffs 2 hourly, seemed a little better this morning so only 3 hourly for the Ventolin. When she woke from her sleep she had goo coming out of her eyes.. and they were pinkish...

We ened up taking her to the Dr this afternoon, on his request.

As I rang to see if he would just write a prescription for some ointment for the conjunctivitis but her wanted to see her and made an appointment for us, I only called @ 4:30pm and couldn't believe that her Dr was actually on and that he made an appointment for us at 5:45pm - we were the last appointment for the day.

He checked her chest and yes she is wheezing again but it is "ok" at the moment and we need to keep up the Ventolin, but he is happy it is keeping it undercontrol at the moment, only 6 puffs every 2 hours...

He thinks that the infection is bacterial, her ears are reddish - well they have been pinkish since the start of September , she definitely had conjunctivitis, yes well there is goo pouring out of both of her eyes.

Slight temp but we aren't treating that at present, letting her fight it.

Food intake is about 1/2 as is her milk. She had a completely dry MCN after 3 hours and only slightly damp for the last two. She is not taking water, only a sip at a time which is very unlike her. So we are pushing the fluids in, even if it is just a sip every now and then, but she has refused since going to bed.

Will be another long night to keep the Ventolin up, but would much prefer doing that here than going anywhere else.

So she is on antibiotics to treat infection, ointment for the Conjunctivitis and Ventolin. If the Anti B's work she should be 50% better tomorrow and 80% better Sunday.

On leaving he said "You know what to do if you can't treat her at home anymore..." it sucks that we have been through this so many times that "we know"...

BUT!!! So she WILL be better and we will NOT need to take her anywhere!!!! At least today she got to catch up and have a play with Eva and Tom, she last about 2 hours before she was buggered and back off to bed.

Crossing our fingers for Summer....

2009-10-13T21:42:00.001+10:30

We had her Paeditrician appointment today, and we had a good chat about what has happened over the past few months and what we are going to do here on in.

Nakita was an absolute gem, she only got upset when her checked her ears, red face and tears, but other than that she was really good, she even packed up the toys in the office, popping them all back into the tub.

Unfortunately or fortunately it was her early arrival and not anything more sinister, that is causing her respiratory problems now, because she didn't receive the steroids before delivery she didn't get the extra boost that would have saved her from all of these issues now. There isn't anything we can do with it now, except for treating her with Ventolin and Oxygen when she gets into trouble.

He has boosted the amount and frequency of Ventolin we can administer before having to take her in, so hopefully we will be able to treat it longer at home, but he was confident that we knew what we were doing, we knew all the signs and when to go, so was happy that we continue with how we are going. He is of the belief that she should grow out of the issues by the time she is three, but we are probably gong to continue encountering issues until about that age. So the best we can do at the moment is cross our fingers that Summer is just around the corner so that her exposure to bugs and nasties reducec

He was happy with her speach development, it is around that of a 12 month old, but she was very chatting, was starting to being able to indicate in a round about way what she wanted, she was very social and interactive so there were no concerns there. We just keep encouraging her as you would with any child.

When her Hypermobility came up I think he felt a bit "oh yeah I did miss that...." as I gently mentioned that I didn't think she should have received a tick for rolling at 6 months when it was only her flipping over due to her heavy head and light body ;) But I wasn't upset or angry in any way, I went through how I spoke with the OT at the Prem Playgroup, she did a quick assessment recommended I get a referral to the physios at the WCH and that since we have been going to weekly sessions at the physio how far she has come. We are to continue going to the sessions until they are happy to dishcarge her from the program, I think that it will be only another term or so, especially with her development over the past couple of weeks.

He did the usual measurements and she was....

Weight: 10.30kg, placing just below the 50th%ile
Head Circ: 48cm, on the 80th%ile
Length: 75cm, 25th%ile although he wasn't really confident on the accuracy of that measurement, but it was better than we have been able to achieve

Her ears had some fluid in the middle ear, but nothing to concerned about at present as her ears don't seem to bother her too much, during both her admissions she also had pink ears, a bit infected but was minor so we never bothered with antibiotics, but it will me something we just keep an eye on.

Next step from here, we hope that Summer comes soon to give her some relief, we can go back to see the Paed when ever we feel we need to or if she gets hit hard with another repiratory infection, but I didn't feel the need to make another appointment today, the referral will stand for quite a while and her GP's have always been happy to give us another if we need it.

I was happy with how the appointment went, it was quite reassuring, and great that we don't need to rush off for more x-rays and tests. I am confident that we know what to do when she gets ill and we have delt with it often enough now that we know how much we can treat ourselves and when we need to seek further medical advice. So even though we don't have a magical solution or answer, we know what the cause is and that in time she should grow out of the issues, it will be an interesting Winter next year but hopefully a lot better than this one!.The physio has made a huge difference and we will continue that for a bit longer,

Sooo BRING ON SUMMER!!! :)

Her crawling has improved so much so quickly as well, today she crawled all day at Daycare, except for when she went down to sleep, and this evening she was a lot quicker before having a shower. So she is definitely on the move big time now so it is going to be a fun few weeks chasing her around as we all get used to her exploring her new environment!

xxoo

It's all sinking in.....

2009-10-10T10:30:00.023+10:30

PI think it is all really sinking in more today, last night was like a huge weight lifted off our shoulders, even though we thought we were pretty safe, you never know when you are going to end up being in that small percentile where things don't go as you had hoped.

It is a very scary time when your only child has to go in for testing for a condition such as CF, when we were first told I thought oh..., I was shocked as I thought she was covered due to the newborn testing. I thought they were doing it as a just in case, not actually realising that there was a bigger justification why she needed the test. It wasn't until just over a week ago, when I received her discharge papers from her admission in September and was reading through the notes and the results of the chest x-ray that I realised that there was something more sinister going on other than "just" another respiratory infection.

I carefully "googled", I wanted to be informed before we went and saw her Paediatrician, I have a big interest in Medicine and have been contemplating returning to study, but atm it isn't feasible, so this interest and wanting to be informed, led me to understand why the testing was required. All the scientific and technical terms went in and I decifered the results, into layman's terms.

I could see what determined the diagnosis of Pneumonitis, and it was good to read that everything was in the right place and about the right size But when I came across a paragraph about some issues that required further invistigation, there were two possibilities. And that is when I discovered why Nakita was being tested for CF, it wasn't on a whim, or a just in case, it was as there was evidence on her scans that she either had it or had sustained damaged to her right lung through another cause.

It was then that the enormity of the test hit home. There was a possibility that this could be true. I then started researching the newborn screening test to ascertain the accuracy of it, and discovered that there was some controversy about the results and that it wasn't definitive. I didn't want to know the figures, what the % chance would be I left that part alone, as I feel the stress it would have generated would have been overwhealming.

I then googled the sweat test, which is the Gold Standard test, so I knew what to expect, the wonderful world of YouTube had a great video which went through the whole test proceedure, it was great. As when we arrived for the test - which ended up taking 1 1/2 hours, I was prepared, informed and understood what was going on, I was not at all stressed and by being completely calm I believe it enabled DD to feel relaxed and ok.

After I had reserached about the test methodology I stopped Googling, I had enough information, I was informed as to why the testing was being done, what it would involve and what the results would mean. I didn't not want to look into the possibilities, I remained as positive as I could be, I had to as there was no point thinking the worst and getting worked up, stressed and upset.

Waiting for the results grew quite frustrating by the end of the day, we were desparate to receive them before the weekend, it doesn't matter how confident one can be, we knew we weren't 100%, we had to be prepared if it didn't go our way.

But it was the huge amount of messages we both received from friends on forums and Facebook that got us through yesterday, and your messages and Congratualtions since the results that have bought the hugest smile to my face and warmed my heart. To experience a response from so many people who we don't know IRL and from some who I do, it means so much.

For you all to make the effort and write a message no matter how long or short, every message has held a place within our hearts.

Especially when there are bubs and parents out there who are struggling with so many more challenges then we have been facing, our problems are small to many others, we really appreciate it. To us this was huge and has had a huge impact on our lives and to have so many worderful people sharing their support and being there for us when we have needed it most.

We have been very lucky so far, inspite of the last few months and a rough start, we have it a lot easier than so many people I know!!!

Back to swimming.. finally!!

2009-10-10T10:29:00.002+10:30

We finally got Nakita back to swimming after having to cancel so many sessions due to her being sick, we are going to see if they will enable to use some of the lessons up instead of paying one month as we don't have the opporunity to take her twice a week at the moment.

The photos are a little unusual as we had been playing around with the settings on my Camera so they look a bit... odd ;)

Results are in...

2009-10-09T18:27:00.011+10:30

For somereason I couldn't update the Blog on Friday :( But here is the message albeit a little delayed!

Finally got the call a few minutes ago

All Clear!!!!!!

Another step closer, and another possible cause crossed off the list, hopefully when we speak with her Paed on Tuesday again we will discuss whether the damage on her x-ray is repairable or not.

ETC... East Terrace Continental, and the Botanic Gardens

2009-10-09T10:17:00.003+10:30

We have a lovely breakfast with Katrine this morning at ETC on East Terrace in the city, we ordered just a 1/2 side of eggs for Nakita and they came out with a huge plate of eggs and toast LOL! And boy did she have fun!!

Afterwards we headed over to the Botanic Gardens to meet up with some friends and had a lovely time :)

The supercute Cammie, who was teething and a little grump and the gorgeous Penny, was lovely to catchup and have a chat :D

The Sweat Test is over now the waiting game begins....

2009-10-08T14:06:00.000+10:30

Sweat test is complete, Nakita was very brave and hardly made a noise or grizzle, especially with electrodes attached to her arms! She was a little upset be we kept her pretty content with the dummy and a rattle

We then had to wait half an hour with test pads on and her arms all bandaged up and on return she had generated enough sweat so all good Test results should be in within 24 hours, so hopefully we get the good news before the weekend

She was very clingy tired and sad after the test and her arms were quite red, but hopefully after a nice big sleep and lots more cuddles she will be back to her happy little self :)

Hope to share the good news tomorrow so we can relax and enjoy the weekend!!
xxoo

Vote for Nakita!!!! Bonds Bumps and Baby :)

2009-10-07T14:52:00.002+10:30

To mark the fifth annual Bonds Baby Search, Bonds are taking Baby Search online for the first time ever! Baby Search will reach more homes than ever before, combing the country from the 1st – 15th of October in search of 3 gorgeous Aussie bubs (sized 000 – 2) to appear in the Bonds Winter 2010 Advertising campaign!

So please click them link and Vote for Nakita - by selecting Like this Baby!!! No. 5560

Bonds Bumps and Baby - Baby Search 2009 - View Entry

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Tomorrow is the Sweat Test.....

2009-10-07T11:45:00.001+10:30

Tomorrow morning we are off to the Women's and Children's Hospital for Nakita to undergo the Sweat Test, for Cystic Fibrosis, we are positive about the whole experience and we think that it is unlikely that she will come up positive, due to her good weight gains in recent months.

But it will be good to tick the box and know that it is something we don't need to worry about, one step closer to finding the source of her breathing issues.

Here is a video on information about and how the undertake the sweat test, it isn't particularly riveting but explains the process really well, and I am glad that I have seen it so I know what to expect:

Hopefully the results won't take too long to come through as they only need to test the amount of Sodium Chloride (Salt) within the sweat, a high reading is an indicator or Cystic Fibrosis.

We look forward to be past this point and looking forward to finding some clear answers :)

Nakita has reached some magical milestones!!!

2009-10-06T16:41:00.000+10:30

Inspite of everything of late Nakita has reached some gorgeous milestones

She is 15 months old , and the most gorgeous little girl and we love her like crazy! Everyday she makes us giggle, laugh and smile, we just want the very best for her that we can give her.

The last couple of days she started saying Mum Mum Mum and looks at me aaaawwwww Other favourite words are Daddy, Dad, DaDa, Bubba and Duck

She has been shaking her head for a few weeks, but will continue to defy us even if we say no to something But she has learnt to nod her head now, and we are working with her to keep the association of nodding and when we ask a question and the answer is positive

She is connecting and disconnecting individual pieces of Duplo - she will be a lego lover as we all are She has learnt to do "Round and Round the Garden Like a Teddy Bear" She hums it too herself when she does it, but she hasn't worked out the 1 step bit yet

When she is finished her bottle, she must be given the cap and the bottle to put the cap on it, then she takes her dummy and puts it into her mouth, we aren't allowed to try and pop it in.

She hit 10kg!!!!!!! What a fatty little boomba!!!

Favourite foods are sultana's (she would live on them if she could), zucchini slice, cheese, yogurt, scrambled eggs and bacon.

She is a real water baby, unfortunately we have missed a lot of swimming lately, due to illnesses, but hope to be back in the swing of our weekly sessions soon. But inbetween she loves the big bath and showers

She is really enjoying her new found ability to move around, and spent 20 minutes with a drink bottle rolling it up and down the kitchen floor while I was cooking dinner, chasing it, picking it up and rolling it again.

She loves In the Night Garden, Playschool and Benjamin Bear on tv

And drum roll for a HUGE milestone from this evening.......

dum dum dum dum

da da da da da

bbrrrrrrrrrrrrr

SHE CRAWLED ON ALL FOURS!!!!!!!!!!!!!!

Getting ready for her shower have her nuddie in the bathroom, sitting on the bath mat, and she saw the covotil (she loves the tube ), and she went into her normal shffle, and slowly the leg made it through I ran over and pulled her knees together and she rocked back and forth a bit, then slowly but surely she starts to move one leg and arm at a time, I think the floor was too cold so her belly stayed up!!!! I bolted and got the video camera, and I have a short video, but she is in the nuddie sot sure if I should put that one online, hopefully we can a "more viewable" one soon, she was too tired after the shower to go again, I tried and she cried

Curls :)

2009-10-05T10:15:00.001+10:30

How cute are Nakita's curls, they go nuts where her hair is wet, then soften out after a while, but still super cute :D

Readmitted to WCH again :(

2009-10-04T01:30:00.001+09:30

Nakita has been admitted again, she started tugging @ the base of the neck,we didn't wait for the chest recessions, we did the ventolin every 20min and she was still desatting to 90-91% so she is on 1litre of o2. She will be having another chest x-ray in the morning, and has had the snot test to determine the virus. Being admitted to the ward, hope we get to go home later today, seeing as it is 3:30am

It was frustrating the the nurse out the front wouldn't listen that for her taking her sats while sitting up isn't right for her, as soon as we got through after waiting 1 1/2hrs, and we layed her down she started desatting .

Going to be a long night.. well a bit shorter thanks to DLS..

I hope to update with news we are on our way home :)

Not looking good... again

2009-10-03T12:42:00.000+09:30

Not good

Last night we had a terrible terrible night, I was up every hour giving her water, and then ventolin 4 hourly. Took her to the Dr's this morning and she has popping, crackling and wheezing in her lungs again, why can't she get a break!!

We have given her Prednisilone and are monitoring her closely, she is down for a sleep, we have her elevated up on two pillows. With her history the Dr was concerned and if she had coughing fits we are to take her in, to get her Sats done, late today is day 3, and the worst is going to hit tonight.

I am heart broken, absolutely shattered right now...

Where is Summer???? She won't stop coughing again :(

2009-10-02T16:41:00.002+09:30

Poor bubba, yesterday she started with a runny nose and coughing a little more, today she has coughed most of the day and the green snot monster arrived. Since putting her down in bed, she has been coughing constantly

Doing 3 puffs of vent four hourly, and giving her lots of water, good thing is she is eating and drinking plenty

So.... Where the bloody hell is Summer!?

Comando Crawling!!

2009-09-27T14:02:00.003+09:30

Albeit it slowly little Miss Naktia is ON THE MOVE!!!!! Here she is this morning 'crawling' across the floor, if you are reading this via Facebook, click on this link http://themastermans.blogspot.com/

Still no news....

2009-09-25T10:28:00.000+09:30

The frustration is growing as we are still waiting for news and results from Nakita's adminssion to WCH two weeks ago, we still don't have the results for the Immunogloblin Tests to see if she has any immune deficiencies, no news on when the sweat test will be, and no referral. I rang the hospital to discover the above and that they havev't even written the discharge papers from the admission!

Sunday we had an appearance of some dots on her bottom, by Monday they were all up her torso and on her legs (no temps or runny nose etc), I took her to the Dr's on Tuesdy morning as the rash had made it to her face and was looking quite angry on her face. She was checked out and we believe that it may have been the full cream cows milk we had just weaned her on to, she had been having it in small amounts mixed with EBM or some Formula, but we had gone to straight cows milk on Sunday. So we bought a tin of Formula on Tuesday and giving it a few days for it to settle, we have seen some improvement, but not really sure how long it would take for the milk to leave her system. A friend encountered the same thing with her son and her Dr said it was the fat in the cows milk, he is now over 2 and has no problems with it.

Here are some photos of her dotty face :(

The last few days we have had another close call with the coughing and breathing, had to up the ventolin to 4 hourly and max dose before we have to take her in, her cough had grown worse, she was flat, and wasn't drinking much, but within 36 hours the ventolin had really begun to do its job and we have been able to taper it right off again, the cough is ever present but the intensity and fequency has dropped right back again. It was great to be able to treat it at home and not have to go to the Dr's or WCH again. We are just hoping this weather warms up as it seems as though with this latest hit of Winter (note we are one month into Spring!), a lot of people are getting ill again. Quite a number of friends have been off work and lots of bub's are sick too, with quite a few heading into hospital.

I can't wait for the warmer weather so the number of bugs is reduced and Nakita has a good chance to fully recover!

Milo!!! Give it to meeeeeee!!

2009-09-20T22:28:00.000+09:30

Sunday we celebrated Nakita's Aunty Benita's birthday, it was a gorgeous afternoon relaxing underneath their brand new pergola an eating off their gorgeous new table (Benita's Birthday Present :)).

Nakita had a bit to eat, but she LOVED daddy's Milo!!! Here are a few photos of the afternoon :)

Nakita and her Peeps :)

2009-09-18T11:49:00.000+09:30

We had mothers group over today, it was a lovely afternoon catching up with everyone, a few girls we hadn't seen in quite some time.

It was really really unfortunate that the day ended not so nicely when we went out to runa few quite errands and Nakita was ill int he car, eeewwwww, not so much fun to clean up, but she was amazingly happy thoughout the whole ordeal!

Little Miss Chatterbox :)

2009-09-11T16:17:00.001+09:30

A video on nakita chatting away today, I posted it on Facebook, but I kinow a few people don't use it so I have uploaded it here too!

What happens next...... follow ups continued

2009-09-11T12:08:00.001+09:30

I know I am stoked about the home visits, such a relief rather than goping cold turkey on the sats monitor completely... and I guess I am not the only one who is terrified of not being able to see those numbers every couple of hours...

I am trying, thinking I might come crashing down soon as it all catches up and sinks in, but I am just so relieved we have come a long way in the past few days.

Tired, and the emotions are rising, getting that lump happening in the throat now... Nakita hs been really good since coming home, she is managing to stay awake for about 2 hours at a time, before getting grumpy/tired/working a bit harder so she is going to be on 3-4 day sleeps for a couple of days until she is off the ventolin.

She was amazing when I gave her the 3:30pm dose, she sat in her highchair, I showed her the mask and space, put it towards he face she started to lean in I made the seal, puffed and we counted slowly to six, congratulating her after each puff, she is such a little trooper, I am so very proud of her.

The alarms are set in my phone for overnight, and I am feeling conifdent that she should be ok, it is cool here though so I think I will be putting on the heat a bit so it doesn't get too cold overnight as that will set things off.

Just been looking forward to my own bed and a nice long hot shower with some decent water pressure, I think that all the water pressure at the WCH is in the Maternity/Post Natal as it was fabulous over there! I guess it isn't so import for the kidliwinks

Day 4 Home!!!

2009-09-11T12:05:00.002+09:30

Eating toast for breakfast a couple of hours before we were given the all clear to go home!!

Bye bye hospital!!!

PHEW! We are home, boy does it feel good!!

Got home around lunch time, after her last lot of ventolin in hospital at 11:30am, and last lot of sats, she desatted to 92, but she had jsut had a mouthful of custard and within a minute it was back up to 98

Was soo good when the Drs confirmed we could come home, we are waiting on the following tests to come be or be done:

Immunogloblin test - blood test done on Monday but still a few days off for the results I think

Sweat Test - they aren't taking bookings at the moment so guessing it will be a while off) it is the test for Cystic Fibrosis, we think it is unlikely that Nakita does have CF as there is no family history of it and she did not return a positive on the newborn screening test, but that isn't 100% and sometimes they have to wait for the symptoms to develop, but the Dr's want to just cross it off the list.

Results we have:

Chest x-ray showed an acute viral infection in her lungs, she presented with quite a bit of mucussy stuff in there. I think there was something else present on the x-ray but it wasn't major/ and is resolvable.

Testing for the 10-12 main viruses all came back clear, but she had a redness in her ears and pink throat, but no temperature, so we don't know what it was an never will etc.

Follow ups:

A respiratory specialist is coming out in the next few days to check up Nakita, they do it at home (which is awesome), they will check her chest sats etc to make sure she is ok, as we wean down the ventolin.

An appointment with her Paeditrician, the hospital has called and we are waiting to hear when that will be, but it will be a review of her whole development, they want her monitored from here on in, until a number of issues have been resolved. He will also be our follow up on the Immunogloblin tests, sweat tests and her gross motor skills development.

We continue with her physio until she has attainted the critical gross motor skills.

That is about it for now, must run as little miss have just woken up :)

Day 3 Medical 1

2009-09-11T12:04:00.002+09:30

8:27am
"She pee'd!! @ the eleventh hour - literary, changed her nappy at 11pm, and se just pee'd enough to avoid the iv, they are weighing this mornings nappy too, as she needed two consecutive pee's, feels aboutt the same for double the time, but so hoping it is enough. Just trialing o2 off and straight after ventolin her sats are 96 while awake so the test will be sleep time leading up to ventolin, hoping her sats don't drop.

She has usually got physio downstairs @ 9am, they are asking then to come up here for a bit.

No test results yet, hoping the dr's will be around soon, with answers....."

10:00am
"Just gone to sleep, still on 02 ventolin is still 2 1/2 hourly, Muscle Test is clear, chest xray show inflamation and an acute viral infection, don't belive it is pneumonia, but dr is off to look at them, checked her weight, length and head circ, to check her development. Immunoglobins may or may not be back before discharge, Still has squeaking and popping in her lungs. Last nappy completely dry :("

12:12pm
"Failed being off o2, desating to 83% while sleeping, with sort recovery before desating again. we are trialing her off it while awake, before ventolin, desating to 85%, with short recovery before desating again. Ventolin brought her up to 94/95%. Still no definitive answers, not going home today might be lucky to go home tomorrow, but not getting hope up. Roy is now sick so can't come in too risky.

Dry nappy @ 6:30am, 90grams last nappy, so about 90grams over 6 hours, just staying of iv or now, until we hear from Dr, eating and drinking ok."

1:08pm
"I was really shocked to see her drop by so much so often. Really demonstrates that when she does go home on the ventolin we are going to have to be right on time with it.

It was only 2.5 hours and bad desats without the o2, we are trying to gage what her threshold is with just ventolin and no o2.

Got more sleep last night, and hopefully more tonight"

9:31pm
"After our terrible morning, Nakita has really picked up, she has started laughing waving and being generally cute again.

Her sats have improved heaps and she is now sitting around 94/95 with no o2. slight drops while sleeping but nothing like the huge desats she was having this morning. She is low around ventolin time, but quickly recovers with 6 x 6 beath puffs.

Spoke to her Dr and we are 90% certain we are going home tomorrow, if she stays stable, she also shared my concerns with the big desats.

No going home on o2, but myself and the other prem mum in here want to get it

They want to do a sweat test, but we might be waiting a bit before it can be done. Has anyone had to do one?

So all going well we will be home tomorrow, then off to see her Paed.

Off to bed now, i'm soo tired...
xxoo"

Day 2 Medical 1

2009-09-11T11:58:00.002+09:30

We were transferred from Emergency up onto the ward at about midnight, it was great to finally have Nakita in a cot and settled, she was on ventolin hourly for most of the night and her oxigen started at 1 litre and was risen up to 2 litres overnight as she was desating (reduced oxigen levels in her blood) badly.

6:47am
"O2 was raised overnight, she started desatting again, ventolin is out to 2 hourly, but coughing is increasing after the 1 hour mark, had a short feed this morning back to sleep straight after, nappy was just damp after 13 hours! Still get a smile every now and then"

7:27am

"If she will keep taking the small feeds and has a wet nappy or two then no IV, so pray for drinking and pee!!"

11:19am
"Just saw her Paed, he has a number of concerns and wants her to be referred back to her Paed, as well as clinic follow ups, and continuing physio. She had a drink of formula of 120ml!!! Yay!!
Still on o2 and we have pushed the ventolin out to 2hr15min, she needs to be off o2 and ventolin 3hrly before we an go home. they're saying we'll be in tonight again. They are thinking about a chest x ray, either now or when she is better through clinic.
It is good to be finally getting somewhere and not just going in circles.

We are with all the asthma kiddies, but know it won't be diagnosed yet, even though the paed said it would be highly unlikely if she didn't get asthma."

12:28pm

"Nakita is chirpy, eating some dried apricot, we are trying to wean her off the O2 just dropped it down to 0.5litres, the ventolin is out to just voer 2 hourly. Dr said we'll higly likely be in tonight. They are thinking about a chest x-ray, but may not be until she is better"

3:45pm
"went down for some blood tests, had to take the O2 with us on a little trolley, they are testing for Immune deficiencies, Cystic Fibrosis and the structure of her muscles"
She was very brave, the nurse had trouble finding her skinny little veins, but got there in the end.

4:48pm
"O2 is down to 0.25litres"

5:45pm
"off to X-Ray for a full chest X-ray"
Nakita was very brave once again :)

9:25pm
"She is still on O2 gone up again but not major, she is drinking well, but very little pee, she has until 11pm to pee a lot or she will be on iv, she has just had diahorrea which isn't helping. She has had a chest xray, and BT's for cystic fibrosis, immunodeficiency, and something to do with her muscles, no results yet, hoping to go home tomorrow. But need to see what all the tests say, weaning off O2, ventolin 3 hourly, she hasn't been able to go past 2.5 hours, lots of pee!"

Hospitalised :(

2009-09-11T11:42:00.004+09:30

Our first hospitalisation was Sunday, I have decided to just post in the messages I sent to family and friends of our 4 day stay at the Womens and Childrens Hospital.

"Nakita is in hospital, went downhill this arvo, desatted 83 twice and 88, but has recovered to be sitting at 94/95. She is on 6 puffs of ventolin every 20min, then we are going to try spreading it out, will be in next few hours at least, if the ventolin works we will be staying in."

then a bit later on...
"Staying overnight, her sats are dropping when she sleeps down to 90/91 and the ventolin is working... she will be on oxigen too"

A visit to the Office

2009-08-24T21:21:00.002+09:30

Today I had to go into a meeting and as it was unplanned I hadn't organised care for Nakita so she went into the office with the girls while I attended the meeting at another Development.

Nakita had a lovely time with Katrine and Kerry, she gave them lots and lots of kisses and lalalalala's poking her tongue in and out. She chose to eat just sultanas and some yogurt for lunch, everything else when onto the floor.

She had lots of fun playing on the girls computers, playing with scrunched up butter paper, and playing with some toys and reading books.

She also managed to send some kisses to Peter and Mark when we returned from our meeting :)

Here she is having lunch at the kitchen bench - lucky we dont have a dishwasher yet as her highchair clamped on perfectly!, and we could sit the bin right underneath!

Crashed out in the car...

2009-08-20T21:26:00.000+09:30

Since we starting Nakita on the Ventolin Trial she had been really quite sleepy, a few days she went back to having three days sleeps, which is very unusual, as Ventolin usually makes people hyperactive! Three nights in a row she fell asleep in the car seat, coming home from Daycare, or the shops, here she is tonight all tuckered out :)

Oooohhhh so tired ssshhhhh... shhhh...

2009-08-20T21:06:00.003+09:30

Nakita was playing away on the mat while I was doing some cooking in the kitchen, she had abit of a grizzle and I said I will be there in a minute, finished what I was doing and went over to the mat, and she was fast asleep!!! Nappy hanging out and all!! Ooohhhh sooo cute!!!

LAP Friends :)

2009-08-18T23:27:00.000+09:30

Following our meeting with the BB friends, we travelled back down towards Brisbane to Strahpine to meet our LAP friends (premmie), we were running late but ended up making it 20 minutes late, even though the GPS took us on another slight detour through some back streets! We parked in the just the right spot as when I entered the centre I was right near the Cafe where we were to meet!

Nakita and I met up with the gorgeous Bec and Kyla and their wee little ones Erin and Phoenix, they were all just beautiful people and we had a lovely time chatting. The food was ooohhhh soooo good, and I want to kow what it is that they put on their chips because it is the best!!

Here are photos of the girls, Erin was sitting on the left, Phoenix in the middle and Nakita is to the right, followed by a few individual shots!

Catching up with BB Friends :)

2009-08-18T16:53:00.005+09:30

Today we left the Gold Coast and headed up to the Sunshine Coast to catch up with friends who we had all met online when we were all trying to conceive and were all pregnant with, or had our babies at the same time.

It was wonderful actually meeting all the mums and bubs whom we knew so much about, but has never met IRL!

Here are some individual shots from the day

Here are the group shots of them all together, we couldn't believe that they actually sat there for sooo long!! In order of birth.... Nakita 30th June, Josiah 31st July, Mehkelti 2nd August, 5th Jasmine August, 6th Jett August, Allegra 17th August and Kye 17th August 2008

And more shots of Nakita, Kye and Jett, but by this time I think they had all had enough of photos!!

Mount Tambourine

2009-08-17T22:55:00.000+09:30

Today we went for an adventure up to Mount Tambourine, we discovered to NOT follow either of our GPS's, the both sent us up this road that turned into a dirt track and into someone's driveway with a big sign saying Keep Out in Red Paint - or maybe it was blood ;) But it was enough to get us out of there quickly.

We ended up in tears of laughter as the kids slept peacefully int he back seat!

Unfortuntaely the detour meant we didn't make it to the Skywalk for the last walk of the day :( So instead we went to Curtis Falls, for a walk through the rainforest which was really lovely, it was unfortunate time of the day for taking photos and I didn't have a tripod with me or my camera set up properly. But here are a few shots of the Curtis Falls walk :)

The drive back was all good until we got about 10minutes from the apartment and heard a nasty sounding cough, we just asumed it was Nakita,until Jett got all upset, I reached back to give him his dummy and ohhh nooo!!! Poor little fell had been car sick :( So we had to pull over on the side of the higway, strip him down, clean up him and the car seat as best we could, then head back to the apartment. Where we washed the car seat and everyone had a shower and we sat the car seat on the balcony all night to "air it out", poor little fella it wasn't a very nice thing to happen at all!

The rest of the night was filled with cooking dinner, washing clothes and nappies and getting the packing underway as we had a busy day ahead!

Kye's First Birthday Party!

2009-08-16T22:38:00.000+09:30

Today we celebrated Kye's first birthday party, when we arrived the decoartions started with the driveway being converted to a runway, the front door was the checkin and throughout the whole house there were signs and directions to various airport themed locations.

Shelly had gone to lots of effort and it looked fabulous, there were planes and coulds hanging from the ceiling of the patio, lots of large psoters on the walls and planes, planes, planes!! Kye had on a pilot's t-shirt and was looking very cute indeed!

The kids had a lovely time playing with all the toys and watching Kye' open his presents, and the cake not only looked but tasted fabulous!

After most of the guests left we stayed back and shelly brought out Sasha, a gorgous husky, and Nakta thought Sasha was just wonderful. She would go into fits of giggles as Sasha would run past her, trying to grab her tail and face. It was wonderful to see :)

We also got lots of giggles in Kye's swing :)

Sunday night we went out for dinner to Kokonut Willies, and we got to test out our new highchair, the Phil and Ted's Metoo, it clamps to the table and was brilliant! Amanda had bought one for Jett quite some time ago, I looked at another version which was on sale before we travelled, but it wasn't worth the trouble, it was very fidly and I think the savings would turn into a huge headache each time we tried to use it! Nakita swung her lugs like crazy the whole time and realy loved it and the staff we also impressed, although I am not sure if they were impressed by the mess, we cleaned up as best we could with napkins! Nakita and Jett shared a kids meal of grilled chicken and vegies, followed by some apple pie, yummo!!

Off to the Gold Coast

2009-08-15T22:25:00.000+09:30

Another weekend another plane trip away!! Today Nakita and I flew up to the Gold Coast to catch up some friends and to celebrate Kye's first birthday. We we due to fly in about 9:50pm and Amanda was due at 10:10pm from Melbourne, but our flight arrive 20 minutes early, so we had a 40 minute wait between planes. We hadn't collected our luggage and while we were waiting over the speaker system they announced my name and to collect my luggage from Baggage Blues - it was pretty funny hearing my name ring throughout Brisbane Airport, lucky it was late at night and there were very few people around!

We managed to get all of our bags and prams together and packed into the back of the station wagon and made the quick trip down the coast and finally everyone settled in bed at 1:22am! What a long, long night!

Mother's Group Catchup :)

2009-08-14T10:22:00.000+09:30

Today we dropped into Isabella and Nathalies house to have a quick catch up inbetween working and packing, Nakita had a lovely time catching up with her friends, and absolutely adored Isabella's Elmo Live. It is the only one we havn't bought yet, but based on her reaction I think it will be going on the lsit of purchases one day :)

Science Works and the Star Wars Exhbition

2009-08-10T21:21:00.000+09:30

Today after we packed up all of our stuff we headed over to Science Works to see the Star Wars Exhibition, it was pretty cool to see all of the stuff, but we were very annoyed to discover that we could have taken our camera's in even though the tickets said we couldn't, we doscovered later that we could, just no tripods!!! Grrr!!!

But either way it was still pretty cool to see a lot of the actual props, costumes and other bits and pieces from the movies. Nakita slept in the sling for half of it :)

After the exhibtions we went through the shop and managed to walk out without spending any money, I think Roy would have preferred to spend some ;) We then grabbed a bite to eat at the cafe and were annoyed to discover no highchairs, we had the same problem at the cafe at the apartment too, they only had one and the previous day we missed out as a family had their approximately 3 year old in the high chair... grrrr.....

We then ventured out to the outdoor spaces and the playground before we headed back inside for the other half of science works, where Nakita had a lovely time, as did Roy and I.

Flying home, Nakita continued waving as she did on the whole flight to Melbourne, and pointing at the planes, baggage trucks and people as they went past the windows :)

Jett's First Birthday!!

2009-08-09T21:43:00.003+09:30

We were up bright and early as usual, well Nakita was, we tried to get her to sleep in, but our efforts were to no avail ;)

Here she is standing up in her cot, she didn't get to standing by herself but was happy to stand there.

The bath was a bath/shower combo, and Nakita loved the deep water bath, we had to stop her drinking the bath water though! He he!!

After breakfast we got the GPS sorted again and headed out to Pine Creek Station at Eltham North, a large reserve where there are ride ont rains, an oval, playgrounds and LOTS and LOTS of people!! We had a lovely time, albeit was freezing cold, and poor Jett was not a happy little fella as he was not well :(

Following the cake a few of us hopped on the trains, for only $3 each we got a good 15minute ride, in and out of tunnels up and down hills, it was lots of fun and brought back childhood memories of the trains at Port Vincent at new years.

After the party we headed back to Amanda and Dions house, and after a cuppa, chat and opening a few presents we headed out to Panton Hills for dinner. Unfortunately great minds think alike and both Amanda and I bought the same thing for Jett, and even worse was that it was customized, we realised when we were waiting to ride the train that we had both bought the same thing!! Ohh well, here it is!!

It was an eerie drive, as it it was the in towards the bush fire area of Black Saturday. If we had more time we would have driven up further to the towns, but as it was night time and getting late we didn't. But driving up these winding roads, with trees heavily planted either side and plenty of undergrowth, it was terrifying thinking of what it would have been like and why so many lost their lives trying to drive away from the flames. It is hard to describe what the feeling was like reading the names of the towns and how close we were to them, names we had heard over and over again on the news and in the media, yet we still didn't know what those once beautiful hills towns would have been like, as many will never be the same again....

Melbourne! Nakita's first flight!

2009-08-08T21:17:00.000+09:30

This weekend we travelled to Melbourne to celebrate Jett's first birthday, and what comes with that is Nakita's first flight on a plane. Here we are at the airport before we hopped on the plane :)

It was a late flight getting into Melbourne at about 8:30, then we had to get our bags, after waiting at the over sized lugguage to find that our pram had come out on the carousel! We picked up our hire car, so lucky we booked ahead as a gentleman was behind us in the line and there were no cars left to hire!

We got organised in the car and got our GPS's going and hoped that they would take us to our apartment, we ended up driving through the nightclub scene which was interesting, but glad when we made it out the otherside, and finally to our apartment on St Kilda Road. Everything was set up in the room for Nakita, but we added our sheets to the bed so she felt at home, and she went off to sleep with hardly a whimper :)

RavioliIIIIIIIIIIIIIIIIIIII!!!!!!!!!!!

2009-08-04T21:09:00.001+09:30

Nakita is a big fan of feeding herself, we are giving her the same food as us most of the time, tonight she was loving the ravioli, and of course feeding it herself :)

Packing Nakita into a box :)

2009-07-31T21:35:00.002+09:30

She wasn't particularly thrilled about it, but was a bit happier when we popped Elmo in with her!

National Premmie Day

2009-07-29T21:46:00.002+09:30

Today we celebrated National Premmie Day, with some of our Prem Friends, we had a lovely afternoon at Amelia and Sarahs house, with Alastair and Lep, Celina and Sandra and Sienna and Kitti.

Celina was trying the climb over the little gates blocking off the kitchen, looking very cute trying to get into the kitchen. Amelia got stuck underneath a glass topped table, and was a cause of a lot of giggles and she looked up through the glass trying to work our what was happening! Nakita's ate a smorgasboard of tasty treats, and had fun palying with new and different toys watching all the others move all around her. Alastair was on the move on his belly, and Sienna toddled around holding onto mum's hands.

It was a lovely day celebrating the amazing little people in our lives, we are blessed to be gifted with our children's lives as we know how touch and go it can be and unfortunately there are many who are strong enough to beat the odds, we often forget these as we are so used to having the one's that do make it.

Coriander and Eggs

2009-07-25T21:43:00.000+09:30

Today Katrine came over to look after Nakita, while I went to a meeting as she was not well enough to be able to go to Daycare. Nakita discovered coriander, which was something a bit different, but she seemed to enjoy the new flavour, and she had some yummy scrambled eggs for lunch, thankyou Katrine for making Nakita's day special :)

Nakita on the family trike!

2009-07-25T20:54:00.000+09:30

This little trike has been in the family for more than 30 years, written all over it, I have already posted photos of the trike, but finally we popped Nakita on it and got her photo!

Out and About on a Sunny Saturday

2009-07-25T20:46:00.000+09:30

Today after swimming lessons we went for a walk along the Torrens to a playground along the linear park. Nakita wasn't too sure about the slide but she loved the bouncing seesaw :) Looking very funky in her baby bands too!

More of our little mermaid :)

2009-07-24T21:38:00.002+09:30

Playing in her tuby grip, not particularly thrilled by it all, think it had been a very looooong day :)

Our Little Mermaid - Physio Appointment

2009-07-24T21:25:00.004+09:30

Today we had another physio appointment at the hospital.

Nakita was in a really good mood for her session. We saw a different physio (actually the one who runs the Prem Playgroup), but she knew all about the assessment and had seen Nakita since she was 10 weeks old.

We need to keep going with all of the exercises we are doing, she really wants to see her rolling, then go forward with crawling etc. She was very impressed with her pincer grip (Nakita was trying to grab a pearl off her ring, using her thumb and first finger) and she went for it a number of times.

She has introduced a tuby grip, which we have to put on her, for up to 20 minutes a day, as her hips are ridiculously flexible, and the TG will provide stability and also forced her muscles to work and strengthen, rather that just flopping about.

We did a lot of pivoting, rolling down a ramp, crawling forwards down the ramp (comando and foot pressure, while encouraging alternate reaching), transitions, and other ways to encourage movement, especially rolling, getting her to roll around as we get her dressed

She tried to get us into the intense student program running but they didn't have any places on the days we could make it so we will be having more regular appointments with her instead. I missed her call this afternoon so will call back Monday for the next appointment time.

All in all it was a positive session and by the end of the hour Nakita was buggered and fell asleep in the car and I popped her into bed and she stayed asleep for over 3 hours!!

Photos of are Nakita in the tuby grip at her physio session and crashed out in her cot afterwards, just before she woke up :)

Brochiolitis again

2009-07-22T17:44:00.002+09:30

Well it seems that we just can't get a break, Nakita has another dose of Bronchiolitis, twice in a month, this time it meant a trip into A&E at 5am this morning.

Nakita's cough turned for the worse overnight, was on the phone to Health Direct at 4:30am, when they heard her wheezing they told us to take her straight in. She had settled quite a bit by the time we got there and her O2 was 94%, which I was pretty happy with thinking that 92% was the point where they administer O2, but whe we got to the Dr he said if she hadn't jumped up to 95-96% she would have been put on O2

We were allowed to come home, as she was drinking fluids and had settled enough, but need to keep her calm because as soon as she gets all upset her O2 drops and her breathing gets terrible and stops and starts a lot, hoping that the worst is over and we won't need to see any Dr's or Hospitals soon!

Lets hope that soon we can look forward to many months of happy healthy bubba.

After all that she was happy enough on the kitchen floor this afternoon for a short while, and is showing off her flexibility!

Nakita, Anuty B and Uncle B :)

2009-07-18T16:20:00.003+09:30

Today Aunty B and Uncle B both came over to look after me while Mummy and Daddy went out for the afternoon. I had lots and lots of fun playing games, jumping in my jumperoo and I was so tuckered out I fell asleep on Aunty B's lap! Thankyou for looking after me :)
Love Nakita
xxoo

First Hair do!!

2009-07-15T17:28:00.001+09:30

Nakita has had her first hair tie put in her hair and it stayed there!! When I went to pick her up from Daycare a bit early to go to a birthday party one of the lovely carers Liz had managed to put her hair up and it is sooooo cute!!!

Eskimo Girl!

2009-07-10T17:25:00.002+09:30

How cute is this jacket!! I got it at Target, it was the last one, she has about 3-4 layers underneath so it makes her look huge, but very cute - very biased mum here!!!