Wednesday, June 30, 2010

Pediatrician Appointment

Yesterday I had my long day at the hospital for my prenatal appointment and the appointment with the pediatrician. I was out of the house by 8:30 to get to the hospital by 9:30 - then my tedious prenatal appointment took until 11:30, during which time I actually saw a doctor for maybe 5-10 minutes. The rest of the time was just waiting for the slow cogs of the public health system to turn ;) I did manage to persuade the doctor though that I didn't "need" to come back in 2 weeks for another prenatal check up and would prefer to come back in 3 weeks (when I'll be 39 weeks pregnant) instead so at least I don't have to go through that so soon. When I was pregnant with Lana, I did these prenatal check ups at the Maternal Health Clinic 2 minutes from my house - and things there seemed to happen a bit faster as well. But because this is a more complicated pregnancy, I must go to the hospital instead. Although I don't really understand why because all the complications are with the baby, not with me.

Fortunately for me (not so for her), a friend of mine who lives 5 minutes from the hospital broke her foot a couple of weeks ago so she was off work - so at least I could go visit her and have lunch with her in between 11:30 and 2 when my pediatrician's appointment was scheduled.

At 2 I was back at the hospital for my next appointment - and I actually had to go and get admitted to the hospital for that appointment, although I never got given a bed or even got to wear that wrist bracelet they print up - I was actually only there for an hour. 

It was really good to be able to meet with the pediatrician and talk with him about his expectations of what would happen after the birth of our baby. When she is born, the most immediate concern will be her breathing. Her ribs are still slightly restricted but it's impossible to tell before birth exactly how well she will be able to breath. If when she is born, her breathing is very affected, she will need to be immediately rushed to the NICU and we won't have any time with her in the delivery room. She may need to be intubated or put on oxygen to help with her breathing. However if her breathing is pretty stable, she will be allowed to stay with us in the delivery room for about an hour or so, during which time we can try to breastfeed or just cuddle and get used to each other a bit. Obviously we're hoping that her breathing is stable at birth! 

Regardless of whether or not her breathing is stable though, she will need to spend probably at least 1-2 days in NICU/special care for observation and tests. The pediatric team will be looking after her most of the time but she will also have an orthopedist (bone doctor) who will do a lot of the x rays etc. Her feet are still appearing to be mildly clubbed so most probably pretty much from birth, she will need to have her feet splinted/put in casts to try and mould the feet back into a better position. This is usually done pretty soon after birth because the tendons and muscles are more relaxed then and can be manipulated easier.

The good thing is that the pediatrician does expect for her to be relatively stable and he expects that she most probably will only need to be in the hospital for less than a week. Of course all that depends on her condition when she is born - but it's still a nicer alternative than what we heard earlier in the pregnancy. Then the doctors couldn't even assure us that we would be bringing her home at all.

From the ultrasound, the doctor estimated her weight to be around 2.2kg or 4.8lb - which is still on the small side (average for 36 weeks is 2.6kg/5.8lb). I don't put too much trust in the accuracy of weight measured by ultrasound though - particularly in situations like this where the baby is not proportioned the same as an average baby. But hopefully she puts on a bit more weight before she is born - because generally speaking, larger babies at birth are healthier. I know that NICU often has "target weights" at which they will release a baby - and if a baby is small, even if everything else is looking ok, they will sometimes keep the baby in for a bit longer until they reach their "target weight".

I asked the pediatrician how often they had cases like this at their hospital. The hospital that I am going to is the one hospital in Hong Kong that has a great NICU and also specialises in high risk pregnancies, and the private hospitals would not accept cases as complicated as this - so pretty much, this hospital is where 90+% of these kinds of cases in Hong Kong would end up. The pediatrician said that they have milder cases of this kind of thing maybe 1-2 times a year (maybe something like Achondroplasia, the most common form of dwarfism) - but in our case, the limb shortening is much more severe. I think that this is a once in a few years (or even less than that) kind of situation for them. We're somewhat celebrities over there and a lot of our doctors appointments will have all kinds of interns at them, because it is not often that they have the chance to learn about this kind of situation.

This was our last appointment for an ultrasound, and our last appointment with the prenatal diagnostic clinic. Everything else now is just "wait and see when the baby is born". I'm 36 weeks today and have another 4 weeks until my due date. Lana came 4 days early and I'm really hoping that this one comes a bit early too. Maybe she can come on the date of my next prenatal appointment so I don't need to go to that ;)

A few prayer points for the last couple of weeks:
  • Please pray that when our daughter is born, that her breathing will be stable and that she won't be in any immediate danger. Pray that she surprises the doctors by how healthy she is and is able to leave the NICU quickly
  • Please continue to pray that she doesn't have a cleft palate - it's one complication that I'd rather not deal with. It would make breastfeeding (and feeding in general) so much easier if we don't need to worry about that - and it will mean one less surgery down the road
  • Please pray for me - I am preparing myself that I almost definitely will need to be separated from her at birth. I know that medically, it is in her best interest but that doesn't necessarily make it easier for me. I'm not looking forward to that. I'll be separated from BOTH my girls and I'm not looking forward to being separated from Lana either.
I'm really glad that this pregnancy is coming to an end - it has been a long, hard, emotional pregnancy and I'm ready for our little one to be here. I want to start our life together as a family of four :) Even so, little one, come quickly :)

Friday, June 25, 2010

Being Prepared

When I was pregnant with Lana, I wasn't too concerned about how my mothering skills would be - I benefited from having a sister 16 years younger than me and could remember what it was like having a newborn in the house. I had lots of experience with poopy nappies (or diapers for all you Americans), bath time, putting a baby to sleep, vomit in bed, etc. I had no false illusions about what motherhood would be like - and when Lana was born, I found that it was even easier than I expected. Lana was such a good baby - she fed really well, was never sick, slept pretty well... I think I've had it easy!! 

Now that I'm pregnant with my second, I'm finding that it's in this pregnancy that my fears and insecurities of my own inadequacies of mothering are coming up. I have no idea what it's like to parent a child with special needs. Everything seems so much more complicated and I have had no experience in that area.

One of the things that I've been thankful for in this pregnancy is that the prenatal testing and diagnosis of skeletal dysplasia has given us the opportunity to research and to prepare ourselves for the differences of this child. I'm thankful that we found out earlier in the pregnancy and that I've had time to process my feelings about it all. I think it's probably much easier to process while you're still pregnant than if you found out when the baby was born with no warning at all. However the flip side of that is, while we can research, we can't really "practice" what we're learning. And while I know a lot about potential issues that our daughter may have and what we should do in those situations, I don't even know yet which issues are relevant to our child.

One of the issues I've been specifically concerned about is cleft palate. This is something that occurs in about 30-40% of babies with Diastrophic Dysplasia (although it's usually just the palate, not the lip as well - so cosmetically it's not as bad). I asked the doctors to try and look on ultrasound and the lip is definitely not cleft, and the palate doesn't appear to be cleft - but it can be quite hard to see that on ultrasound so there are no guarantees. I would like to breastfeed if possible, but cleft palate can make that very difficult. And if that was the only issue a mother was facing, there are things that you can do to breastfeed a baby with cleft palate - however I think that with our baby, there are so many other issues as well that I don't know if I'd be able to dedicate the time and energy to exclusively pump if it came to that. I have brochures from La Leche League giving tips on breastfeeding a baby with cleft palate so regardless of if we face this issue or not, I do want to give it a sincere try... 

Another issue that I'm concerned about is called "cervical kyphosis" which also is quite common in diastrophic dysplasia. This is where the curve in the neck area of the spine is not correct and it can result in neck instability. This means that the baby needs to be held much more carefully for much longer than a baby without this condition. It also means that it may not be safe for the baby to be carried in a baby carrier and she may need a pram which is more supportive for the back/neck. Getting around with two kids in Hong Kong is hard enough as it is - and Lana's not really old enough to just walk around all day while I push the baby in a pram. The easiest way to get around with two kids over here is to have the baby in a carrier and push the older one in a stroller. I really don't know how I will manage if I can't use a carrier - but I guess we will cross that bridge if/when we get to it... hopefully we will be able to figure out some kind of option where I can carry the baby in SOME kind of carrier/sling... but ultimately, the safety of the bub is our priority and even if it means that we can't get out as much, or I've just gotta take one kid out at a time, we'll manage. Thankfully we do have a helper now so we have a baby sitter on hand most of the time, if we need to do that. 

So if you are a praying person, please help me pray for these two specific issues. There are other issues that may affect us later on - but these two things are the two that I am most immediately concerned about. 

I also want to thank Stacey once again for her help and support throughout my pregnancy, answering so many questions that I've had about diastrophic dysplasia and parenting. One thing that she said to me in a recent email really meant a lot. She said:
I'm a worrier.  I worry about everything, and when Grant was born I was completely overwhelmed...until I realized that Grant was just a baby, like any other baby.  He had special needs, but I learned those needs quickly, and he was very good at telling me what he needed, even before doctors knew what he needed.  So trust those motherly instincts, and try not to worry as much as I did!  It won't take long for you to be surprised by how normal it all feels. :o)

I still feel less "prepared" and "ready" for this child than I did with Lana... everything is still so foreign to me - I've never been in this situation before and it's hard to really imagine what it will be like when you haven't been there yet. But I do know that we will learn, we will cope - and I even think we'll do a pretty good job, once we figure it all out!

Wednesday, June 23, 2010

Pediatrician Appointment scheduled

I got a call today from one of the nurses at the hospital where we're delivering the baby - they have scheduled an appointment with the pediatrician so that he can see the baby (on ultrasound) before she's born and they can be prepared for her birth, as well as us having a greater knowledge of what is likely to happen after she is born as well. The appointment is scheduled for next Tuesday - the 29th. 

Unlike the geneticist who will be involved in finding and confirming a diagnosis for our daughter, the pediatrician will be involved in her care immediately from birth. If she has do go to NICU (something that our obgyn said was almost definite), he will be the one supervising her care for her first few days. He probably will also be the one who will be ordering the x rays and blood tests that she will need.

I'm looking forward to being able to prepare ourselves for what is likely to happen once she is born. When Lana was born, she needed to go to Special Care for observation for about 12 hours or so and I was completely unprepared for it and found it extremely difficult as a new, first time mum. Everything happened so fast that I wasn't really able to ask questions and really understand what was going on at the time - and I was still recovering from the childbirth as well (AND it was past midnight by that time) so I was encouraged to go to my ward and sleep while my newborn was placed on a different floor to me.

I think that with Lana's situation, if I had been able to know about it in advance, it wouldn't have been as hard on me as it was. So I'm really grateful that I will be able to talk with the pediatrician (and not just the nursing staff who often convey messages between the patients and the doctors) and get a better idea of what to expect once our little one gets here :)

The annoying thing is though - on Tuesday, I've got a prenatal appointment at the hospital at 9:30am, then I've got this appointment there at 2pm. The hospital is quite far from my house - it takes an hour to get there by public transport - so there's not really any point in coming back home. So I'm going to be at the hospital pretty much the entire day - something I'm not looking forward to! But I guess it's good practice for when the baby is born...

5 weeks today til my due date!

Friday, June 18, 2010

The Joys of Pregnancy

I'm not the kind of woman who loves being pregnant and feels like she's glowing with pregnancy joy and wonder. I have some friends who are like this and I just don't "get it" at all! For me, pregnancy is a means to an end - you want a baby, you get pregnant. 

I kind of liken pregnancy to a long flight. I love going back home to Australia to see my family. But to get there, I've gotta go to the airport two hours before my flight, go through immigration, sit in an uncomfortable, crowded seat for 9 hours, fight the other passengers through Sydney airport, wait for my bags and then there's that ridiculous customs line they have in Sydney (that must be the part that is like labour) - all before I can begin to enjoy actually being back home. There are some weird people who love flying and all that it involves - but for most people, it's a necessary evil. 

Earlier in my pregnancy when we started having medical issues, my mum said to me "Just enjoy your pregnancy - don't let this change your excitement etc" - I looked at her and said "Mum - I didn't even enjoy my pregnancy with Lana, how am I meant to suddenly love being pregnant this time around?"

I never ever missed being pregnant after Lana was born. I never thought about her hiccups and kicks when she was in my womb and wanted to feel them again. In fact, after she was born and I first found out I was pregnant again my first thoughts were "Oh great, this again!!" - I knew I wanted more kids and would like them close together but didn't really think about the actual "being pregnant" part until I saw that positive pregnancy test - and I wasn't looking forward to that part of having another baby. 

It's not that I've had hard or difficult pregnancies. I'm healthy as can be, I haven't had any morning sickness or other complications in either of my pregnancies. I don't bloat up like some women do. I haven't put on excessive amounts of weight. The worst things that I have to deal with is a bit of pelvis pain (more so the 2nd time around, probably because of carrying Lana so much as well), some leg cramps a couple of times a week, and just the uncomfortable feeling of carrying around the extra weight.

I think that now that I'm approaching the end of this pregnancy, I'm really looking forward to the end of it all. I know firsthand that the hard work really starts once the baby is born - and probably in this situation, even more so! But at least then I can do the hard work in my own body instead of sharing it with someone else ;) I hope that the next 6 weeks or so go by quickly!!

Saturday, June 12, 2010

My house

It's been exactly a month since I wrote this post about my frustrations about some things around the house and I thought I'd write a bit of an update about our dramas in that area.

With the mold problem, we got the landlord to come and have a look at it and he agreed to replace the wardrobe for us. That was fine and dandy - but it meant that in the mean time we couldn't use a wardrobe at all. And for some weird reason, the delivery date was set for two weeks after the landlord ordered the wardrobe. I don't know whether it was Ikea being slow (maybe things weren't in stock?) or whether the landlord set the later date so he'd have time to remove our old furniture - but it was definitely a long wait until we finally had wardrobes that we could use!! They arrived about a week and a half ago now and are mostly filled (although we could still do a bit of rearranging to get the best use of space). 

Our helper also arrived about two and a half weeks ago now and she's settling in nicely. It's a bit of an adjustment for Bernard and I as we've never had a helper before, but we're happy with the job that she's doing. Lana likes her, she keeps the house much cleaner and tidier than I managed to do, she cooks pretty nice, usually if I ask her to do something it gets done promptly and meets or exceeds my expectations. It definitely makes my life easier, not having to worry about the house in between doctors appointments and playdates (that's pretty much my life at the moment!). It's nice being able to just leave Lana at home and go out somewhere. Already Bernard and I have gone to a concert and to the movies - things that were much harder and less frequent before she arrived. 

And as for the furniture which arrived a month ago sized incorrectly, it was meant to take one and a half to two weeks to be fixed - but somehow it was "forgotten" and then their factory had electrical issues, there was a frustrating lack of communication going on - it ended up taking over a month to be fixed - and then when it was fixed, there are still a couple of minor problems with it. At least now though, our helper's bed is more usable and we could finally put the mattress onto the bed - it had been standing against a wall for the past 6 weeks!! 

Lana's "big bed" is going well now. We bought a little two step ladder for her so that she can climb into bed herself and she really likes it. She still has times where she wants to get out of bed and not go to sleep but overall she's very good. She likes us to sit outside her room while we're waiting for her to fall asleep though - she tells us "Chair! Book!" (ie, sit in the corridor and read to yourself while I go to sleep). There've been a few times when she's been really bad at getting out of bed and I've ended up just closing the door on her (which she does not like at all!) but after crying for 5-10 minutes, it's a sure way of getting her to go to sleep. 

When we first were talking about when we should move in preparation for the little one, we were talking about May-June. We ended up moving in April instead - and I'm so glad that we did because we've been in this new place for 8 weeks now and with all the issues that we've had, it's only really now that we're feeling more "settled in" and at home! No one could have predicted the complications though - but I'm so glad that we managed to get them figured out now rather than when I was 38-39 weeks pregnant. 

So now, when it comes to our house, I feel like we are practically ready for the little one now :) A few more little things to take care of (like sorting through and washing Lana's old baby clothes and making sure we know where all our baby supplies are) but we're pretty much ready to welcome our new daughter in a little over a month's time!!

Tuesday, June 8, 2010

32 week ultrasound

Today I had another ultrasound. I'm currently 32 weeks 6 days (practically 33 weeks). There's no real new news or anything like that - it's much the same as previous ultrasounds. The head/body/internal organs all appear normal, average size etc. The limbs are now all 10 weeks behind - measuring at 22-23 weeks. I'm thankful that I'm this far along and I haven't developed any other complications. My umbilical fluid levels are normal and I'm healthy as a horse - I feel much more fit than I did when I was pregnant with Lana. I have a bit more back pain but I think that's because I've been carrying Lana around a lot this time. When I was pregnant with Lana I had the worst foot/leg cramps - but I haven't really had very many of them this time around thankfully!! Thanks to the pilates I've been doing with my physiotherapist since Lana was about 6 months old, my posture is much better and I feel stronger. Things are coming along and the end is in sight.

The doctor today suggested having an appointment with the pediatrician so that he will be able to "see" the baby before she is born and that way, he is a bit more prepared and I am also a bit more prepared. The doctor said that the baby will most likely need to go to NICU - even if it's just for observation for a while. I kind of expected that. I know this hospital tends to be very cautious, one thing that frustrated me about them when Lana was born (she was put into Special Care for observation when she was first born since she was born 40 hours after my waters broke and I wasn't emotionally prepared to be separated from my newborn. In the end, she was only there for maybe 12 hours and she was perfectly fine anyway). I do think it will be beneficial though to talk with the pediatrician though and to have a bit more of an understanding as to what to expect after she's born. I don't know yet when that appointment will be - they will call to schedule it.

In the mean time, I'm down to biweekly prenatal visits at the moment (so annoying - they take so long in the public system and like I said, I'm healthy as a horse so there's not much that they say anyway), and my next ultrasound is scheduled for the beginning of July. I think I'll be 36-37 weeks then... I can't wait for this little one to get here! It's been such a long pregnancy...

Wednesday, June 2, 2010

Another way of looking at it...

When I first found that my child may have a genetic disease, my first thoughts were those of "Why me?" and  "How can we be the one in 500,000 - everyone else has "normal" babies, why am I so unlucky?" - but now I have a slightly different perspective... If our baby does have a genetic disease, and if I do believe that God is the creator and giver of life - then HE not only "allowed" this, he also intended it for a reason. So out of 500,000 other families that God could have allowed this situation to affect, He chose us. And out of every other family in the world, he chose us to be the parents of this special little girl who's going to be joining us soon. Instead of this being a burden, I know that it will be an opportunity. I feel so blessed and excited to welcome our daughter into our lives - and although I am aware of the difficulties which we may face due to her medical situation, I know that we will be strong enough with God's help to face it with grace, love and hope :)

Jeremiah 29:11
For I know the plans I have for you," says the LORD. "They are plans for good and not for disaster, to give you a future and a hope. 

 Romans 8:28
And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.