We found a place!!

After a couple of weeks of looking for places, we've finally found a place that suits our budget and needs. It's not "perfect" but I think that given the circumstances, it's definitely the best that we've seen  that is in our budget (and I've spent many days looking - dragging poor Lana around with me!)

Our new place is in the same estate as the one that we currently live in so we don't need to move far. We've just gotta move to the next building. The new place has an extra bathroom, an extra bedroom and a storage room as well. The whole place has been renovated so it's a lot more new feeling than our current place. They've turned the kitchen into an open kitchen which really makes the kitchen/living/dining room look a lot bigger, even though it's about the same size as our current area. Ideally we would have liked another room for our helper as well, but the baby can share a room with us for a while, and when she gets a bit bigger, we can put the two girls in a room together. Our helper can get the 3rd bedroom and if need to, we can use some of space for extra storage as well. Many people here have the helper sharing a room with the baby or a young child but personally I don't really like that idea.

We will be able to move in around April 15 or so, so we're going to spend the next couple of weeks going through our stuff, boxing it, chucking some other stuff, fun fun! At least we don't have far to move it, it literally takes 2 minutes door to door. 

The processing of our helper has begun as well - it should take around 5-6 weeks to process and so she should be here shortly after we move. I'm really looking forward to having an extra pair of hands around. 

I really feel now like a huge weight has been lifted off my shoulders. We just have to get through the moving process and then we can just focus on the baby and this pregnancy.

Nothing much new has been happening on the baby-front. She's growing, kicking more - we can feel her now from the outside of my tummy. It's nice to know that she's getting bigger and stronger - hopefully we'll be able to see that on the next ultrasound as well. 

I have a check up on Tuesday, but it's really just a check up for me so I'm not likely to find out any more information or anything. Then it's just until 2 weeks until our next scan. That's when we'll be able to find out a bit more about how the baby's growing.

In addition to moving, my brother will be visiting us from Copenhagen for two weeks over Easter. It'll be so good to see him again, we haven't seen him since last May when Lana was only 7 months old - so I'm sure he'll notice a huge change in her! And we'll also have Bernard's old youth pastor from the Philly visiting us with his wife for 5 days at the same time. It'll be fun to have them all here, but crowded in our small place! Don't be surprised if I'm not blogging as much, but I'll get on to post about my doctors visits at least.

Choices and changes

This week has been pretty crazy. Emotionally, it's been up and down - there's a lot going on at the moment and it all seems to be demanding so much attention.

When we found out we were expecting again, we decided a) to move house and b) to hire a helper. Our current apartment is a cozy 780 square feet which is perfectly fine for the three of us, but adding in a baby and a helper would make it a bit TOO cozy for our liking! 

Having a foreign domestic helper is very normal in Hong Kong. Compared to the average wage for professionals, the cost is quite small. They help with the cleaning and cooking, and also childcare. There are no daycare centres here where you can take a child to for one day a week or something like that, and being an expat, we don't have an overabundance of free family help so it will be nice to have an extra set of helping hands.

The only way to have a legal helper is for them to be live-in, so that (along with the coming baby) is the reason why we need to move in the next couple of months.

We started our house hunting a little while ago, but in the past couple of weeks we've really stepped on the accelerator since rental prices are rising at the moment. A lot of the places I see online at good prices are already gone and our current choices are more limited. It's difficult making the decision, how much to spend, how far away to move. If we move out to 45 min from Bernard's work on the other side of the harbour, we can get something nicer that is very much within our budget and won't encroach on our savings. But if we want the convenience of being closer, we need to pay for it somewhere else, either in settling for somewhere smaller or older, or by stretching the budget.

Because Bernard works full time, I've been the main person doing all the leg work, looking at places, collecting prices, ruling out certain places and deciding to look more into other areas. It's all hard decisions, and all non-pregnancy related, but if it wasn't for this bub, we would be happily continuing to live as our family of three in our cozy 780 square foot place.

In some ways, it's been an emotional week for me. I think probably because of how busy it has been, I've been out every single day dealing with it all and I feel the pressure to make a decision soon. Also because of the uncertainty of the pregnancy. If there were no issues, I'm sure these changes would be much more exciting - but with the problems the baby is facing, it's more difficult for some reason.

On one hand, I feel like if we make all these changes and then the baby doesn't make it, maybe it's all been for nothing. But then again, I know that these really are necessary changes and regardless of the outcome, I think we're doing the right thing by moving and getting a helper.

We are starting to make progress though. I have gone over all the details of the contract with our future helper and we've agreed on it all, I just need to go to the agency who will oversee all the paperwork/visa side of things, sign some papers and within 5-8 weeks or so, she should be out here in Hong Kong!

Regarding the house hunting, there is one building that I will go see tomorrow, I have seen some pictures of it and the floor plan and it looks promising. Hopefully this place will end up being "the one" for us. The price is lower and it is in a convenient place, close to Bernard's work. It is also right next door to the building where Bernard's dad lives. The compromise in this place is that the building is currently having renovations for the next few months, so it may be a bit noisy during the day and dusty as well. That is why the prices are comparatively low. If we do get it though, the price will be set for the next 2 years so if we can get through the renovation period fine, at least we would have gotten a decent price for the rest of the time.

Anyway, please pray for us that we'll find the perfect place for us for our expanding family and that all the changes will happen smoothly. We'd love for it to happen soon, if possible! I can't wait for the house hunting stage to be over... 

Expect the Best but Prepare for the Worst

For anyone facing a poor prenatal diagnosis or other medical issues, or even life difficulties, one phrase that you might commonly hear is "expect the best but prepare for the worst". I generally don't have that much of a problem expecting the best. I'm mostly an optimist by nature. I have a touch of realism, a bit of a sarcastic point of view at times, but I mostly see the good in people and in situations, even when things are bleak.

I know that the odds that we are facing in this pregnancy are probably around 50-50 (or if I'm realistic, probably even worse since we found the problems comparatively early, usually a bad sign) and at the moment, it's hard to tell what the outcome will be, but I just feel like things will be ok. I really believe that this baby will live. In fact I believe it so strongly that even if the doctors did give us a lethal diagnosis, I don't think that I would believe that the baby would not survive until after she was born. I think I've heard from at least 15 people who had lethal diagnoses and the baby lived, I know it's not uncommon.

What I struggle with is the part which says "prepare for the worst" and although I hope that the worst will not happen, I know that we should make plans in case it does. I know that there will be issues that we will need to work though, and in the long run, it's probably better that we consider those issues at least in part now before the baby is born, rather than having to go through all those issues in the days after the baby is born, when I'm still in the hospital recovering from childbirth, with my milk coming in and no baby to feed. If the worst does happen, in those days I want to be able to focus on grieving rather than needing to make funeral plans there and then.

It's hard to maintain a balance in this area, because one person could be so much "expecting the best" that they don't do anything to "prepare for the worst". And someone else may be so wrapped up in "preparing for the worst" that they can no longer "expect the best".

One of my new friends, the mother of a baby with a lethal SD diagnosis who lived, (find her blog here) wrote this to me in an email the other day:

Unfortunately, I can’t say that the rest of your pregnancy will get easier.  We never got the answers we wanted before Grant was born.  The doctors made guesses, guesses that broke our hearts, and they still were not able to give us the information we needed.  And their guesses were wrong.  I was on a never ending roller coaster of having hope, then having doubt, having hope, then feeling discouraged.  I turned to God and didn’t even find peace there.  Nothing gave me the answers I wanted.  The hospital had us participate in a group called Angel Watch.  3 nurses came over to my house once a month for the remainder of the pregnancy to help me cope, and prepare for the death of my baby if necessary.  I guess it helped to have someone to talk to, but towards the end when they wanted to talk about arranging a burial plot and getting preliminary funeral plans together….I just couldn’t handle it.  They gave me some papers on it, and I never read them.  I realized everyone expected my baby to die, but I just couldn’t take it that far.  Instead I set up my baby’s nursery.  I planned for him to come home.  It was a horrible time of uncertainty...

Now looking back, I wish I hadn’t let the doctors ruin my last trimester.  I felt silly for buying clothes and getting my baby’s room ready, but I shouldn’t have.  The doctors don’t know anything more about your baby than you do.  They’ll do their best, but in the end you just have to wait and see what happens. 

I too have wondered "Should I buy things for this baby?" On one hand, I want to - but then on the other, there's nothing that she really needs - and maybe if I buy things, it will make it more traumatic if we need to deal with the loss. I know some parents cope in this situation by carrying on as normal, other parents cope by just completely waiting and seeing - and if the baby does make it, they can always go out and buy everything after the baby is here anyway.

I'm trying to be balanced in this area, expecting the best but being prepared for the worst. And it's so hard to know what "balanced" is...

On a side note, I'm really interested in other people who had poor prenatal diagnoses and how you balanced these issues. Did you have any regrets, things you wish you had done differently? Did you buy things for the baby in spite of the diagnosis? Did you plan the funeral or assign that to other family members/friends? Did you do that before the baby was born, or only after the loss? I know that each person is different and I can't take someone's experience and apply it to myself, because your balance may not work for us. But I'm really interested. Please reply to this post, or email me at nicolejoy81@gmail.com

My thoughts on Prenatal Testing

I sure have a lot of thoughts these days, don't I? 

There are a lot of ideas out there about prenatal testing, how much is beneficial, how much is not good, when is it worth the risk of invasive testing, etc. Particularly when you already have decided not to terminate regardless of the outcome, some people think that prenatal testing can just add more stress and worry to a pregnancy.

For me, the argument is somewhat irrelevant because all of the issues in my pregnancy were very evident on my 20 week ultrasound, something that is standard just about anywhere in the world, so in my situation, it wouldn't have taken any deliberate prenatal screening tests to notice that there were issues in the pregnancy. I would be in exactly the same situation now no matter which road I took to get here.

I am of the belief, however, that prenatal screening can be a good thing if it prepares you for what is to come when the baby is born. I do think that any screening should be done in an informed manner, understanding what certain results mean, and always knowing that tests can be wrong. Certain tests have higher error rates than others, amniocentesis is near 100% accurate while generally diagnosing something by ultrasound is much less accurate. 

I also think that parents need time to adjust to problems in a pregnancy, and from reading other people's blogs, it sometimes seems like those who knew their child may not make it had a much better experience with their child when the baby was born. I remember reading an extremely sad story about a lady who had a non-problematic pregnancy and when the baby was born, he didn't start breathing. The doctors said he had probably passed away the previous day. The shock of this meant that the mother didn't even want to see her child, they had no photos, and it seems to be something that she had a lot of regret over. I know there was no way in her situation that anyone could have predicted the outcome, but if there was any way she could have been prepared, maybe she would have less regrets now, I don't know.

I do think that different people respond differently to situations, so there is probably no universal "right" or "wrong" in this area. Each person needs to decide for themselves - and I think they need to be free to decide for themselves too. I felt a bit of pressure from certain people to not have an amniocentesis because of the risk - but these people really didn't know anything about our situation, they just feel universally that amnios are wrong. I don't think it's right or fair for someone to try and impose their belief onto someone else - please let people make up their own minds in their situations. Usually if they're considering an amnio, they've got enough to work through without having to deal with other people's negativity as well. On the other hand, I also think it's not fair to pressure someone to get prenatal screening tests done if they don't want it.

Before we knew there was any problem in this pregnancy, we chose to have the "Oscar test" at 13 weeks. Some people call it the Nuchal Fold test, but it is combined with the results from blood work to provide a risk factor for Downs Syndrome and Trisomy 18. The test is non-invasive but it can only provide a risk level, not a definite answer. In our situation, the risk of Downs was pretty high at 1 in 7. 

These results were definitely daunting - there was a 15% chance of Downs, and an 85% chance of the baby being fine. We were told that there may have been other issues, but Downs was the main thing on our minds. 

We chose not to do the CVS because of the risk of miscarriage - at 1 in 100 or so, it's significantly higher than the risk of miscarriage from amnio (usually quoted as 1 in 2-300 but recent studies have shown that it may be as low as 1 in 1600). CVS could have been done right away, but amnio, we would have needed to wait for 3 weeks until I was 17 weeks pregnant. 

We had a lot of discussion, prayer, more discussion, more prayer about whether or not to do the amnio. I was uncertain, my husband was much less "wishy washy" about it than me. In the end, we decided to go through with the amnio because for us, our risk of the baby having chromosomal problems was significantly higher than the risk of problems with the amnio, and we felt that the benefit of knowing in advance would be worth the small risk. I knew that this baby's life was in God's hands and NOTHING could harm the baby without Him allowing it - so I was trusting and believing that God would protect the bub while we found out for sure whether or not it was Downs.

In the end, we went for our appointment for the amnio and in the preliminary scan, the doctor said "This does not look like Downs. It looks like a skeletal problem. You need to go and see a specialist. They may recommend an amnio, but I think they should look at the baby first because amnios may not be as helpful in diagnosing these kinds of problems". So after all that, we weren't even going to get an amnio!

After our appointments with the specialists, we decided that in our situation, the benefits of an amnio weren't worth the risk to the baby. In the case of chromosomal abnormalities such as Downs Syndrome or Trisomy 18, an amniocentesis can be 99.9% accurate. In the case of genetic abnormalities such as most skeletal dysplasias, an amnio often gives no or little information. It may be able to diagnose the problem, but it may not. We didn't think it was worth the risk for a "maybe". 

I do wish there was some kind of test that could give us a 99.9% accurate diagnosis right now but unfortunately there isn't. So we're in that awkward position of knowing there is a problem but not knowing what it is. Still, I am glad for the prenatal testing that we have had, and that we are able to prepare ourselves in advance for this little bub. I am glad that we will not be shocked if our baby needs NICU. With Lana, she ended up in Special Care for 8 hours, just for observation, and it was extremely hard for me because I wasn't expecting it.

There will always be those who decide against prenatal testing of any sort. There are people who don't even want ultrasounds. And that's their prerogative. I hope that those people won't be completely shell shocked if the unthinkable happens to them, and that they will be able to deal with it quickly. But for those of us who could benefit from a little foreknowledge, I am grateful for modern technology and testing and I hope that it improves in the future to the point that there will be less invasive, more safe and more accurate tests for a wider range of possible problems.

Please pray for Carys

Right around the time that I found out that we had problems with this pregnancy, I also heard that a friend I had made here in Hong Kong, Donna, was going through her own struggle. I met this friend through Lana. Her daughter Carys is a few months younger than Lana (I think she's around 14 months old now). At Carys' one year check up in January, Donna asked the doctor about a small lump in her abdomen, she though it was perhaps just a bowel blockage. After some tests, they found out out it was stage 3 neuroblastoma - cancer. Faced with this news, Donna and her family have relocated back to Melbourne to have treatment there. Carys is now on her 2nd round of chemotherapy. Donna's started a blog here where she is sharing Carys' struggle through this. Please pray for Carys, that the treatment will be successful and that she will have a full recovery. And please pray for the Donna and Ian, and also their older son Tane, that they will all have the strength to go through this horrible time.

20 week scan - public hospital

So yesterday I went to the public hospital to have my scan. This public hospital is a teaching hospital so at first, a student doctor started the scan. It was pretty slow going because she seemed like she hadn't done many ultrasounds before. After a while, the nurse/doctor supervised her, and then after another while, the head doctor came and took over. All up, they scanned the baby for an hour and 20 minutes!! And the beds there are soooo uncomfortable!! But it was nice to see the baby for so long. She was moving a lot during the ultrasound and it's so cool to feel her and see her move at the same time. It gives her movements more meaning, to be able to see her moving as well as feeling it. 

I had a lot of questions and had them check a few things, things that in my research may be indicators of what type of SD the baby has. Here are some of our new findings from yesterday:

The baby does not appear to have a cleft lip or a cleft palate. A cleft palate is present in about a third of babies with Diastrophic Dysplasia - but it's present in just about all of the lethal form of DD called AO2 (Atelosteogenesis, type II). The feet also don't appear to be very clubbed, and the baby is able to make a fist with her hands (something that some DD babies can't do). The bones also appear to be straight rather than curved, another thing common in DD babies. Last time, I thought he said that the kidneys were small, but he actually said that they were swollen - I think maybe I just misunderstood him last time. That could indicate some kind of blockage, but I don't really know the relevance of swollen kidneys. The chest to abdomen ratio at the moment is 0.73. "Normal" is between 0.8-1, "lethal" is around 0.5. So between 0.5 to 0.8 can indicate impaired lung function, but maybe or maybe not lethal. At least 0.73 is closer to 0.8 than it is to 0.5 so hopefully the number stays that high, or even increases rather than decreasing.

I asked the doctor if he thought it could be DD, and he said "The hands certainly look similar to that but we can't be sure. It's quite rare and Achondroplasia is much more common."

I also asked the doctor whether he thought that this condition would be lethal or non-lethal, and he said that it was hard to say for sure at this stage, but it's a bad sign that it presented so early. Usually if skeletal dysplasias are detected before 20 weeks, it is lethal. Although there are exceptions to that, and DD is one of those exceptions.

So all in all, I have some questions answered from this appointment, but we still don't have an answer as to what exactly is wrong and whether the baby will be able to survive. I do however feel that the doctor there was more willing to answer my questions and discuss his thoughts more openly so I did feel like I got more out of that appointment compared to my appointment last Friday with the private doctor. On the down side though, out of all the doctors I've seen in Hong Kong for any kind of problem, he has to have the poorest English. It's harder to understand him and sometimes he misunderstands me too. But it's still nice to feel more listened to, and I appreciate that about him.

My next appointment in the public system is on April 9 - I think I'll be 24 weeks, and then with the private doctor on April 12. Until then, it's just wait and see. 

Keep on growing, little bub!!

Why not knowing is so hard

I thought I'd write a follow up post to my one about not knowing what the outcome is going to be and my frustration in that area. I feel a bit misunderstood in some ways about my last post and thought I'd explain why not knowing is difficult.

It's not that I don't trust God (maybe I do need to trust Him more, but don't we all?), and it's not that I'm overly worried about it all (yes I am concerned but it's not consuming me. I'm still playing with my daughter, meeting up with friends, laughing, enjoying life at the moment). I don't feel like I am wasting time thinking about things that are not going to happen. I'm not depressed. What I am doing is trying to prepare for the future, and it's a complicated future. 

I know that not many people have had to go through something like this, and I know that even those who have, their situations are usually different to my own so maybe it's impossible for others to understand. We have the added complication of living in a country that we don't call home and so if a funeral will need to be planned, it will have to involve body repatriation in some way or another. We would be negligent if we knew that there was a likelihood of needing such a service and not looking into it in advance. 

What I would love, but do not have, is some assurance that I will not need to plan a funeral for a child that is alive and kicking inside of me, however I know that I may not get that assurance. I do not have a specific promise from God saying that this child will not die, I will not ever have a 100% guarantee from the doctors. We most probably will, in time, have a "probably" one way or another. I do have a "gut feeling" that this child will live. But I will most likely not get any complete assurance one way or the other.

I do think that I need more patience and maybe these are issues that I should be thinking about in 10 weeks time when I'm 30 weeks pregnant and the doctors will probably have more to say about what's going on. Maybe we should look into funeral plans at least a bit regardless of what happens. I'm sure it's better to be somewhat prepared than to be blindsided and then need to start the preparations from scratch in the days after delivery and loss.

We are fortunate that this is our 2nd child and so we won't need to go out and buy all the baby things and then have to face an empty nursery. Even if there were no complications, we wouldn't be buying much anyway, particularly since we know it's another girl, we won't even need new clothes. So at least we don't have those issues to think about so much. 

I don't think the answer is to just completely stop thinking about the issues that we are facing. To do so would be doing ourselves and our baby a disservice by not preparing ourselves when we have been given the opportunity to prepare (so for those of you who said that I should just not think about these things, I have to respectfully disagree with you on that issue).

I think that from here, our plan is to stick with the current doctor for now, knowing that I am still only 20 weeks pregnant and most probably she's waiting til later in the pregnancy to start making a diagnosis. There are things that I really do like about this doctor. If I am still feeling the same frustrations about her after a couple more appointments, I will seek a second opinion when I'm around 30 weeks pregnant. By then, the issues should be easier for another doctor to diagnose, and that also gives our current doctor time to grow on me a bit more. 

I also think that I will hold off thinking about the possibility of a funeral for a while - and when I'm 30 weeks, we can think about it again, whether we are confident enough to not look into it, or whether it would be better to do a bit more research (hopefully unnecessarily, but it's better to look into it and not need it than to not look into it and wish you had). 

And in the mean time, I will draw comfort from knowing that even though I don't know what will happen, God knows and He has a plan for us. I know that although I can't yet see the end of this tunnel, I know it's only just over 4 months until the little one will be here and we will know more of what the future holds. Until then though, we just need to keep walking and see where this journey takes us...