Saturday, November 30, 2013

Briella - 4 days old

Today, Briella is four days old. She is such a sweety and it is already getting hard leaving her in the hospital! The CPAP was turned off yesterday and she is still getting some extra oxygen via a little cannula under her nose. I've been able to hold her (yay!) and she loves snuggling. Yesterday she cried when I put her down at the end of visiting hours :( 

Medically speaking, things are moving along slowly. Briella has been seen by most of the specialists who need to evaluate her and the prognosis seems good. The two things that we are waiting for before we can bring her home (in my understanding) is 1) her breathing needs to improve a bit - she's still having some "insucking" around the rib cage when she breaths, meaning that she's straining a bit. She also has some stridor but chances are she'll have that for a while. I still think that her breathing is stronger than Maddy's was at birth, and the doctor who was looking after Maddy agrees. 2) she is still being fed by the NG tube. She needs to start feeding orally. I'm HOPING that this will start taking place next week. 

Apart from that, everything else, I believe, will mostly be done as an outpatient. The ENT is not insisting on an immediate bronchoscopy (unlike our situation with Maddy) and is happy to follow up with that later. Orthopedically, her x-rays of her spine don't completely rule out every issue, however they don't raise any major red flags either so we will be cautious and follow up with that later too. Her hips, like Maddy's, are not fantastic - however unlike Maddy, our current ortho sees no benefit in using a pavlik harness

Her feet are going to be a difficulty though. Maddy has fantastic feet for her diagnosis and I don't know why, I just assumed that Briella would too. Briella however has the more "typical" diastrophic club feet that often are very difficult to correct. At this stage, our ortho is planning to start serial casting for them when she is around a month old.

Briella is drinking more and more these days and so in the next day or two should be able to have her IV removed - yay for one less cord! We still haven't been given any particular time frame for how long she will be in, but we are praying and keeping our fingers crossed... it is exhausting pumping, looking after two older kids and running back and forth from the hospital sometimes multiple times a day. I can't wait until our family of five is together!

Thursday, November 28, 2013

Briella Faith

As the title of this post suggests, we have decided on a name for our little one: Briella Faith. "Briella" is a short form of the name "Gabriella" meaning "God is my strength".

Today, I will be discharged from hospital to recover from home. I'm doing very well - both physically and emotionally. The cesarean was not as painful as I'd imagined and certain aspects of the recovery are also significantly easier. When I was admitted to the hospital, I requested that I could recover in the prenatal ward rather than the postnatal ward. The prenatal ward has some postnatal patients as well, and I knew that it would be easier on me emotionally than being in the postnatal ward with 50 newborns. Thankfully they were able to accommodate my request as my hospital stay here has been so much easier than my previous two experiences!

Briella is still in the NICU. Like Maddy, her main issue is her breathing and airways. She had other medical needs such as cleft palate and clubbed feet (which are new to us, Maddy's feet are great!) But these are not what is keeping her in NICU.

It will take at least a few days or so for all the necessary specialists to see Briella and they need to consult with each other about the management plan. Although the doctor told Bernard perhaps only a few weeks, this is just a guess until we know what the plan involves...

In the meantime, Briella has started feeding through a tube, so I am pumping again. Thankfully my milk has started to come in so I'm able to meet her needs. Every time that I've seen her, she's been asleep. Since she is still on the CPAP, we are not yet able to hold her. Hopefully we can hold her soon! Also, until she is discharged, Bernard and I are the only ones able to visit her. Lana is quite upset about that, and for me, that has been the hardest thing so far :(

Please continue to pray for us, especially little Briella...

Tuesday, November 26, 2013

Welcome, baby girl!

After a lot of waiting, our third daughter (still unnamed) was born today at 1:17pm via cesarean section. She weighs 3.4kg and had apgar scores of 7 (1 minute) and 9 (5 minutes). She needed a bit of help starting to breathe due to wet lung syndrome (possibly due more to cesarean delivery than her dwarfism) and was taken quickly after birth the NICU where she was put on oxygen. Other than that, she seems healthy and strong. The doctors estimate that she may be home within 2-3 weeks which would mean she's likely to be home for Christmas! I haven't spent much time with her yet since I am still recovering from the cesarean. She looks so much like Maddy did at birth!

Thanks so much for your prayers, messages and other support. I will continue to update as we learn more.

Monday, November 25, 2013

The day before D-Day

Having a scheduled cesarean is a strange thing, knowing the birthdate of your child sometimes even weeks in advance. It's so crazy for me to think that by this time tomorrow, I'll have a newborn! 

Today, I had my last appointment with my private doctor. He confirmed that yes, the baby is still breech. She seems as though she's a big one, maybe 8lb or so already. The estimates aren't always accurate, but based on the scans, it seems as though if I'd gone another week or two, she would have been my biggest! That might be the reason why she just didn't want to turn around. He said "Seems like she wanted to be born by cesarean!"

After a great lunch with three of my closest friends here, I headed up to the hospital for a few hours for the last pre-op things. I met with the anesthetist again who confirmed that they will try the spinal block first. There is a chance that it may not take due to my spinal surgery and if that's the case, I'll need a general anesthetic :( I'm praying that is not the case! I also saw the obgyn and got some blood taken in case I need a transfusion (it's rare but better safe than sorry!) 

Tomorrow morning, I need to be up at the hospital at 7am. I am the 2nd surgery of the day, so generally speaking, it will be possibly around 9:30-10am. Emergencies take precedence over scheduled cesareans though, so it could be later than that. I guess we won't know until tomorrow for sure... 

Usually with cesareans at this hospital, you need to stay 4 nights afterwards, so I probably will be in until Saturday. Depending on how I'm doing and how the baby is doing, I might stay shorter or longer. If she obviously needs significantly longer in NICU, I'd prefer to recover at home. If she is doing great and can come home say after 5 or 6 nights, sometimes they allow the mother to stay longer so they can go home together. We'll play it by ear.

I'm very nervous about tomorrow - both about the procedure and recovery, and also about the health of the baby. If I could have one "wish", I'd wish that she could come home with me. How likely is that? It's impossible to say. She'd need to be healthier than Maddy was in order for that to happen... It wasn't until a day or two after that I'd packed my hospital bag that I realised that I hadn't even packed any clothes for her :( I have now - in faith ;)

I was talking to Lana yesterday, trying to prepare her for the birth, my hospitalisation and the possibility of her maybe not meeting her sister for a few weeks. She told me in a wistful voice, "I hope the baby can come home quickly because I REALLY want to hug her..." Made me cry - me too Lana... 

Please be praying for us, and especially baby, tomorrow - and we hope to update soon with good news!

Thursday, November 21, 2013

26 November

Two posts in one day! I haven't done this since Maddy was little!

Yesterday, I posted about my experience with the ECV. Since it failed, we will need to schedule a cesarean. Yesterday, the hospital gave me the date of December 4 which was a week after the doctors had verbally advised me that it would be. I had some concerns and so I emailed the doctor.

My main concerns were these:
- if I went into labour naturally and the baby was still breech, I would need an emergency cesarean
- emergency cesarean is not preferable for the mother OR the baby and the risks are a bit higher than if it were planned (just depending on how "emergency" it truly was). 
- since the baby already has known health issues, it would be preferable to have the team of doctors ready and prepared in advance, rather than using whichever doctors were on call at the time. 
- (selfish reason) - if I had an emergency c, Bernard would not be allowed in the theatre and I would be alone for the birth of the baby. While it might not be as big of an issue in a routine pregnancy, we don't know how her breathing will be until those first few minutes and I would not want to go through that without my husband.

In addition to the above, my due date according to LMP is December 7 - however according to all of my early ultrasounds, the baby has consistently measured between 6-10 days ahead, putting my due date by ultrasound to somewhere around November 27 to December 1. 

So as mentioned in my previous post, I contacted the doctor last night and he replied within a few hours saying he would review my file and get back to me. This afternoon, I had a call from the hospital advising me that they have moved the date to November 26. 

So unless a) I happen to go into labour within the next 5 days, or b) the baby happens to turn within the next 5 days, we will be meeting our little girl next Tuesday. 

Please continue to keep us in your thoughts and prayers - this is the end of one journey, but the beginning of another...

Maddy update

It's been a long time since I updated about my 2nd daughter! Much of this blog in the past few months has been focused on my pregnancy and the potential medical needs of my 3rd daughter. But I did want to update a few things about this gorgeous little one:

Maddy is growing well and still is extremely healthy. It has been nearly two months since we have seen the orthopedic doctors and we are still waiting for a CT appointment for her spine. I think the stress of this pregnancy (which is no where near as bad as the stress of my last pregnancy!) has taken my attention off Maddy's needs in some ways, because I'm sure I'd be more worried about it if I weren't focused on the new little one. I've figured though that the CT scan would at least give us more information about her spine and whether or not the suggested surgery is viable. Even if the suggested surgery is not viable, more information cannot be a bad thing! 

With regard to the DAFOs mentioned in the last orthopedic post (linked above), we have had some made - however they are not the hinged kind that I was expecting. The kind we have are thicker at the ankle and are extremely difficult to buy shoes for. Instead, the orthotist added a sole to them so she can wear them without shoes. Maddy has currently been wearing the new orthotic about half the time and continuing to wear her old orthotic insoles the rest of the time. Here is a picture of her funky new "shoes" (taken before the sole was added onto them) ;)

Since September, Maddy has been going to not one, but two new schools. It has been a hard transition - it took a few weeks for her to stop crying at drop-off time, but now she is mostly good. She prefers her regular school to her special needs school, but her special needs school is helping us so much at this critical age with her self-help skills. She has been working on things like pulling up her pants and putting on socks. Given that her fingers are inflexible and her arms barely come to her belly button, this is a bit like you or me learning to do these tasks with our elbows!! She has been experimenting with a few different methods and a few different tools. All in all, I think these schools are perfect for her current needs so it's worth the busy schedule and the (few) tears that still pop up from time to time. 

The other week, Maddy had an appointment with the cleft team at the dental hospital. She had back to back appointments with the dentist, orthodontist and oral surgeon. She was AMAZINGLY good - opening her mouth wide when asked, following instructions, allowing them to scrape the plaque off her teeth, even allowing them to stretch her lips out to take photos of her teeth. I wasn't expecting her to be so compliant - I know that when we took Lana to the dentist earlier this year, Lana wasn't anywhere near as compliant, and she's usually my easy-going child! We had all the staff at the hospital talking about how good Maddy was and they have never seen a child this young with that much ease. I think a lot of it has to do with the number of doctors appointments and therapy sessions that she has had - it's been her whole life really! I'm so proud of her :) (and her teeth are crowded, but they are healthy strong teeth. We'll start worrying about the spacing issues once she starts getting her adult teeth!)

Wednesday, November 20, 2013

ECV results

Today, I spent the day in the hospital attempting to turn the baby from breech to head-down. It was a full day with a lot of monitoring and a lot of waiting! The doctor usually does two attempts, but because we are a little more "high risk", he only tried once. The baby didn't turn so is still breech, but thankfully we didn't experience any complications and so did not need an emergency cesarean today.

Because the baby is still breech, they have scheduled a cesarean for December 4. I'm a bit concerned that it is too close to my due date (only 3 days "early", usually they do it 1-2 weeks early) - I don't want to go into labour and then need an emergency cesarean which will be more risky for me and the little one - plus Bernard will not be able to accompany me. I've contacted the doctor to ask if it is possible to move the date closer but I'm not holding my breath - I'll see what he says. 

All in all, I think I'm glad we tried. If we hadn't, I probably would have wondered "what if"... although of course since she didn't turn, it does feel in some ways like a waste of a day, and unnecessary discomfort as well - but we would have never known if we hadn't have tried.

There still is a (small) chance that the baby will turn by herself before the scheduled cesarean, in which case they will cancel the surgery and wait for her to come naturally. We'll just have to wait and see what happens. It is surreal to think that in just a couple of weeks, she will be with us!

Tuesday, November 19, 2013

NICU - what I'd do differently

The other day I posted a summary of our experience with Maddy in NICU three years ago (ironically, she was released exactly three years and one day before my due date with this little one!) It's not often that people get the chance for a "do-over" for an experience like this, but in a way we do. Having been through NICU once and getting to know the ins and outs of it all, I think I know better now what to ask for, what to insist on, and in general what I'd do differently. Also for the hospital, Maddy was their first diagnosed case of diastrophic dysplasia so they (hopefully) are now more prepared and informed for a second case. 

A few weeks ago I met with the neonatologist and had a couple of requests for him. I'll summarise them and his response below.

Firstly, and most importantly (in my opinion), I do not want to use the orthopedic doctors at this hospital. About five minutes down the road, run by the same hospital authority, is a pediatric orthopedic hospital. They also run a spinal clinic. ALL of the specialised pediatric orthopedic doctors, AND all of the specialised spinal orthopedic doctors are based out of this hospital instead of the hospital where we gave birth. When Maddy was born, I didn't realise this at the time, but she was seeing a general "adult" orthopedic doctor. I have requested that we use Maddy's current pediatric orthopedic doctor instead. This will give us a more accurate picture of the state of this little one's orthopedic issues, and in particular, her spine. The neonatologist informed me that within the last year or two, ALL of the NICU orthopedic issues are referred to this pediatric team rather than the general orthopedic team - so hopefully that makes a big difference for our little girl!

Secondly (and this one is maybe a little selfish on my behalf), when Maddy was born, she did not need any emergency breathing assistance. For her first few hours, she was breathing independently. I've asked that if this one is similar, if we can have even 15 minutes with her in the delivery room before she is taken to NICU. The neonatologist's response surprised me - he said of course, and that I could even try breastfeeding if I wanted! Maddy on the other hand was on an IV only for her first few days and didn't start taking any milk even by NG tube until she was about 3 days old! In fact I wasn't even cleared to attempt to breastfeed until she was over three months old.

Speaking of breastfeeding, another big thing for me is the way that the hospital manages the breastmilk. They say that they support breastfeeding but many of the policies imply otherwise. You can read some of my previous frustrations here - but in short, I want to insist a) on 24 hours notice for any change in feeding schedule so I can provide them with the right amount of milk in the right number of bottles, and b) absolutely no formula ever for whatever reason. With the formula, Maddy was fed formula multiple times for different reasons. On some occasions, it was because of a change in feeding schedule (eg, going from feeds every 3 hours to every 2 hours). On other occasions, it was simply because a nurse forgot to defrost a bottle. While I am not anti-formula in general, it bothers me greatly that they were giving this milk which is dairy-based to a child with a dairy allergy. I don't know if she reacted to it back then because I wasn't there, but when she was older she had strong reactions to dairy (including formula), producing a lot of mucus, sneezing, some swelling of the face etc... These issues could have been disastrous when combined with her airway issues! The doctor was supportive of my position - however I also know that what the doctors say is not always what the nurses follow through with.

I haven't asked this yet, some things I think we are better off waiting to see what they say first - BUT if we are in the situation again where the hospital is not actively treating this child but rather waiting for her to outgrow her stridor, I want her to be discharged and followed up as an outpatient instead. I wanted this for Maddy too, but first time around they were far more cautious, and we weren't prepared to discharge her against medical advice. This time, however, I will definitely be much more strong in requesting this. 

In addition, I feel as though Maddy was fed via NG tube for far too long. This often leads to speech delays because the muscles in the mouth aren't stimulated as much as if they were feeding via breast or bottle. Speech delays have been our greatest developmental struggle with Maddy and she's had to work very hard to catch up! With this baby, I do not want her to be fed via NG tube as a precaution. If they feel she needs to be fed via NG tube for medical reasons, I think they should at least do a swallow study to "prove" the medical need for it - particularly if it is to be for more than a week or two! 

A big thing for me is the visiting hours. Visiting at this NICU is highly restricted - parents only, and ONLY between 3pm-8pm. Anyone with children aged 3 and 5 would know that this is the worst time of day. Lana gets off the bus at 3:10, then we have about 3-4 hours in which to play some games, have a snack, do a bit of homework, piano practice, violin practice, eat dinner, have a bath and get into bed. Ideally, I would like to go to the hospital either when the kids are in school, or when they are in bed at night. If this little one is in NICU for only a week or two, I think we can manage. It won't be easy but I can be flexible. If it is for four months however, it would be HUGELY detrimental for our other two kids... I would hope that the hospital could be accommodating, however knowing them, I know it's not likely. I recently learned that a friend of a friend requested to see his daughter outside of visiting hours in a one-off situation and was rejected - and she passed away only 2 or 3 days later :( I honestly don't know how to approach this issue with the hospital - again I will see what happens first... 

After I met with the neonatologist, he said to me "Don't expect that just because you had one experience with Maddy that it will be exactly the same with this little one as well" - he said it in a positive way, that maybe things will be easier this time around. But coming from the same man who, when I asked him "If we had to do it over, what would you do differently during Maddy's stay in NICU", told me "Absolutely nothing" - I'm really not sure what to expect. In addition, he will be away for the whole of December so unless I have the baby in the next week and a half, he won't be there anyway.

I'm really hoping that we won't have a repeat of our last NICU experience - but I guess we will have to wait and see. We are more informed now, as is the hospital, so fingers crossed we will have our little girl home as soon as possible :)

Friday, November 15, 2013

Maddy's NICU summary

I'm planning to write two posts - this one will be a summary of our experience with NICU with Maddy, the next one (which may or may not appear at any time before the baby is born) are things that I would do differently this time around - IF the situations were more or less the same. 

(For siblings with diastrophic dysplasia, there can often be differences in severity - and we don't know until this little one is born whether she will have the same issues as Maddy or different ones. Often siblings are similar - but not always. We are of course hoping and praying that this little one will be just as healthy as Maddy is, or even healthier!)

Here goes!

When Maddy was born, there were a lot of doctors in the room prepared for whatever the situation would be. At the time, we didn't know her diagnosis. We didn't even know for sure that she would not have a lethal form of dwarfism, although the scans towards the end of my pregnancy looked promising. As soon as she was born, she was very briefly shown to us before she was whisked away to special care baby unit for close observation/testing. We were left in the delivery room for around three hours after this due to the hospital being short staffed. 

After we did leave delivery and I got settled in the ward, Bernard went up to see Maddy. In her first few hours, she began to have some stridor (noisy breathing), insucking (where the ribs are struggling to inhale enough air) and blood acidosis (where she was not expelling enough carbon dioxide effectively). She had been moved into the NICU and was on CPAP. She did very well on the CPAP and her reliance on it was decreased over the next few days and was turned off when she was 9 days old. After that time, she had occasional use of oxygen but was never really reliant on it. We didn't get to hold Maddy until she was 12 days old, and we were only allowed to visit her between 3-8pm. Since we had another child at home who also needed our attention though, realistically we saw her on average for 1-2 hours every day.

Many people ask me why Maddy was in NICU for so long - particularly given that she was healthy and growing, and really needed minimal medical support in the four months that she was there, and the answer is quite complicated. There were two main issues:

1. Airway
From birth, Maddy was showing definite signs of either a narrow airway, or a "floppy" airway. The typical signs were the stridor and insucking. Her lungs were working fine (apart from the acidosis during her first 24 hours) but the airway was a concern. If an airway is dangerously narrow, even a bit of mucus could block the airway completely causing the person to suffocate without prompt and emergency intervention, sometimes in the form of a tracheostomy (where the person breaths through a tube in their neck). A "floppy" airway (tracheomalacia) is less severe and usually babies grow out of it without any intervention. It is important to diagnose exactly which you are dealing with and the severity - and usually this is done via a bronchoscopy.

2. Cervical spine
When Maddy was two days old, we were told that she looked as though she might have a cervical spine instability. It was difficult to diagnose via x-ray and the orthopedic doctors wanted to do an MRI to assess it further. Cervical spine instabilities are also tricky things as if the neck is moved in the wrong way, it could press on the spinal cord causing, as the hospital put it when Maddy was 2 days old, "instant death". 

The problem was that for the bronchoscopy, Maddy would have needed some manipulation of the neck and the orthopedic doctor would not give the ENT the ok to do this necessary test until they had first done the MRI. The MRI on the other hand would have required Maddy to be sedated, and the anesthetist refused to sedate Maddy without knowing the results of the bronchoscopy.

Reading back through my blog posts (if you're really interested, you can read from August-December 2010), it is amazing how early these issues started - I first posted about them when Maddy was only 9 days old. From the age of even a week old until Maddy was discharged at four months old, there was little resolution of these issues and no real plan besides "let's see how she grows and hopefully she will be better when she's older". 

So what changed when she was discharged? They did manage to figure out that they could do a "virtual bronchoscopy" by using a CT scan instead of the usual bronchoscopy procedure. This confirmed that all along she'd had a floppy airway rather than the "worst case scenario". In addition, I think that Professor Sillence's visit had something to do with her being discharged just three days later. 

And as for Maddy's cervical spine issues? After she was discharged, we were told that she never had the instability. But despite this, the same team of doctors gave us the same trouble when Maddy was being assessed for her cleft surgery at 17 months old. Just a week later, however, our orthopedic doctors assured us once again that Maddy's spine was perfectly stable and safe.

On one hand, I am thankful for NICU in that Maddy was in the safest place she could be IF the "worst case scenario" ever happened. On the other hand, however, I have a lot of dissatisfaction in particular with the orthopedic team at this hospital. Also I think the hospital policies here in Hong Kong are harmful to families with children in hospital, particularly long term. This time around, however, there is much that I would ask to be done differently. I feel as though I'm a lot more educated now, and I'm also a lot braver. But more about that in a later post...

Wednesday, November 13, 2013

ECV decision

After much thought and discussion, we've decided to go ahead with the ECV. It has been crazy since my last doctor's appointment and I've been going back and forth on the issue. I emailed the dwarfism experts and they took a few days to get back to me (understandable, since I emailed on a Friday evening!). In that time, I thought I'd decided not to do it - why take the risk to the baby? And we would never have a guarantee that it would be 100% safe. Yesterday, I was ready to call the hospital and ask them to cancel it and just book the cesarean - but last night, I heard back from the dwarfism specialists. 

I was kind of hoping for them to say "No don't do it" - it would have made my decision a whole lot easier if they had! I had been preparing myself for a cesarean and could even see the positives in it. But they said basically if it is done gently and in the right conditions, it should pose no risk of spinal injury to the baby (the main concern specific to DD babies). 

Even after hearing back from them, I was not sure what to do - I'd already made up my mind not to do it. Maybe I should just go with my gut? However today I went for a check up with my wonderful obgyn and discussed it with him. He basically told me that if I have a senior doctor, discuss the concerns with him and have only gentle manipulation of the baby, it should be fine. I know already that I will have a high-risk senior doctor so hopefully I'm in good hands.

So next Wednesday (Nov 20), I'll be spending a full day in the hospital to see whether or not the little one will turn. There is a small chance of complications which would mean that she will be born by emergency cesarean on the same day. Then it's not far off 50-50 whether she will turn or not. If she turns, then we wait and she could theoretically be born as late as December 17 (10 days after my due date). If she does not turn, we will schedule a cesarean for the week of November 25. Whatever happens, I think I'll be glad that we at least tried to help her to turn... 


I also want to say thanks for those of you who are praying for us and sending us supportive messages and thoughts. It is greatly appreciated. Some things to pray specifically for are:
  • For peace in the whole situation. I'm mostly doing ok but getting a bit anxious about the delivery, recovery and hospitalisation. 
  • For the best possible outcome for the ECV. If she's meant to turn, that she'll turn. If cesarean is safer for her, then that she won't turn. That there will be no complications - I'd really prefer NOT to have an emergency cesarean but if that's what is best, then so be it. 
  • For our little girl's breathing once she is born - for her to be able to breath strongly and independently without any extra support.
Thanks once again!!

Sunday, November 10, 2013

ECV or no ECV?

On Friday, I had my 36 week check up at the hospital where I will be delivering this little one. As I knew that the baby was still breech (very obvious when there's a hard head sticking into your ribcage!), and since two doctors had previously advised me that it is not recommended to turn the baby manually, I was expected to come away with a C-section date which would be cancelled if and only if the baby turned naturally.

Instead, I came away with a "plan C" - the doctor who I saw (who is also a prenatal diagnostician who I saw in my pregnancy with Maddy) does not think that manually turning the baby (ECV) will hold any more risk than any other pregnancy, and it may be my best chance to avoid having a cesarean. 

So what is an ECV? If you are really interested, you can read in depth on Wikipedia. Basically, I would be admitted to the hospital early in the morning and they would carefully monitor the baby for 2-3 hours. Around lunch time, I would get some drugs to relax the uterus and a doctor would manually attempt to rotate the baby until she is head-down. After this, whether it is successful or not, I'd need to stay for another 2-3 hours in the hospital to monitor the baby in case of distress or other issues. 

And for the numbers: having an ECV holds a risk of 1-2% of immediate emergency cesarean due to complications such as damage to the placenta or cord, or fetal distress. There's around a 60% or so chance that it would work, in which case hopefully she'd STAY head-down and I'd go on to be able to deliver naturally without the need for a cesarean. And there's around a 40% chance that it would not work and I'd have to go ahead with the planned cesarean. 

(and yes, I realise that technically that all adds up to 101-102% - but I said "around 60%" and "around 40%"... ;) )

Currently, my ECV is booked for November 20 - only 10 days away. I'm still not 100% sure if it is the best course of action - mainly because I've now had two doctors tell me that it has additional risk to the baby due to the dwarfism and two doctors tell me that it does not. I've emailed Dr Mackenzie in the US and am hoping that he has an opinion one way or another. I also have another check up with my private doctor this week and will discuss it again with him as well. I can cancel the ECV at any time for any reason and go straight to the cesarean.

If we DON'T do the ECV (or if we try and it doesn't work), then we're looking at a cesarean the week of November 25 or so... just over 2 weeks away! On the other hand, if we DO try it and it works, this little one could be born as late as mid-December.

I'm finding that the closer that I get to the end, the more anxious/nervous I get about the delivery and hospitalisation. Please keep us in your prayers, particularly throughout the next month, as I'm sure it will hold many many ups and downs for us! Pray also that we will make a wise decision about the ECV - or better yet, that the baby will turn by herself and we won't have to even think about it any more ;)

Sunday, November 3, 2013

Best possible outcome?

I know that this baby has dwarfism and I am completely fine with that. It's funny that now that I have Maddy, my concerns about the long-term future of this baby are minimal. Most of my worries are the immediate, and a lot have to do with NICU. 

If we could have the best possible outcome from here (in the short-term):
  1. the baby would turn and I'd have no need for a cesarean (I really don't like the sound of the recovery from that!)
  2. when she is born, we'll find that she has no cleft palate and can breastfeed so I don't have to think about pumping again.
  3. her breathing would be efficient and regular, needing no assistance such as CPAP or oxygen.
  4. I'd be able to bring her home from the hospital with me.

What is the likelihood of the above?
  1. Possible - but I'm not really holding my breath for it... Some babies, even with DD, can turn as late as right before delivery. It is rare though - but not impossible. 
  2. I think of the above, this is the least likely. We haven't been able to see a cleft on the ultrasound, but we never saw Maddy's either. Cleft palate often goes along with a small jaw and restricted airways - and we already know she has a small jaw.
  3. I think this is possible - Maddy really needed minimal assistance, and I'm pretty sure that this daughter has a larger rib cage than Maddy did - so... fingers crossed!
  4. At times, this seems like a far off dream - I go between trying not to get my hopes up too much, and reminding myself that I need to prepare to come home alone again. 
Please keep praying for us as we wind down to the end of this pregnancy - there are a million emotions going through our minds at the moment. In some ways, having been there before makes it easier - it's not our first time at the rodeo! In other ways, we are not fresh this time around, we are a bit more battered, a bit more scarred - bluntly, I didn't agree with the way Maddy was treated in NICU back then and I don't want to go there again. Maybe I'm bitter, maybe I just plain don't trust the system so much. I'm sure if I'd had a chronically ill baby who needed high tech medical care, I'd be thankful. But I'm not - I'm resentful. And the closer we get to being there again, the more I see my own negative feelings and emotions about Maddy's experience...