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...

Not Knowing

Since my appointment yesterday with the doctor, I've been really having a hard time with things. I had certain expectations with the appointment, I thought it would answer some more questions and give us some more information but I walked away with pretty much nothing new at all. It's quite a feeling of hopelessness, not really knowing what's going on. I like to know stuff and can't handle the not knowing. Even when my husband starts a sentence and then takes it back, I make him tell me what he was going to say because I hate knowing that there's something that I don't know but not being able to figure out what it is!!

I've been thinking - should I go to yet another doctor and get another opinion on things? I'd love to have a doctor who was as blunt and upfront with me as possible and I don't feel like I have that right now. I know that they cannot guarantee a correct diagnosis at this stage but I'd like to at least have some idea of what the possibilities are. I'd like to hear an opinion at least, besides "wait and see". I don't even know how to find a doctor who is specialised enough in these areas AND blunt enough to tell me their honest thoughts... 

Or maybe I should just accept not knowing until later in the pregnancy, or when the baby is born? I know that no diagnosis will be 100% anyway and I've read stories about how both lethal and non-lethal diagnoses were wrong, so maybe it's better to not know, because at least that way aren't expecting anything... I really don't know. I know that in all likelihood they should be able to tell me whether they think the baby will live later in the pregnancy, even if they are hesitant to predict that now...

Two things that friends have said have stuck with me. I was talking to my brother yesterday and he said "Well for you, a diagnosis won't change anything anyway because you're planning to continue with the pregnancy anyway" - and I can see that... maybe I should wait until later in the pregnancy before I get frustrated at not being told whether the doctors think my baby will live because really it doesn't affect anything either way... And another friend commented on my blog post yesterday saying something like "regardless of what the doctor says or doesn't say, that doesn't change the health of the baby - and that's the important thing" - and again I can see that. For now the baby is healthy and what will be will be. The doctor's words aren't going to change anything, and they can be wrong anyway - so maybe I should just be happy that for now, the baby is growing and developing, and has nothing immediately life threatening. 

Maybe my "need to know" is doing myself more harm than good. My husband is better at accepting that there is stuff that he doesn't know and he's generally happier to wait to find out (except in the case of birthday presents!). Maybe I should learn from him and trust God that in time, I will find out the answers rather than troubling myself with trying to find them right now.

The hardest thing for me right now isn't the thought of raising a child with a disability. I'm ok with that, particularly in this situation where chances are, the baby's mind will not be affected. I don't want to lose the baby but I'm prepared to go through that if we need to. The hardest thing though is not knowing which of these two extremes it will be. Not knowing whether in 4 months, we'll be bringing home a special little girl who will change our lives more than we could have imagined, or whether we're going to be burying her. I hate not knowing...

20 week scan

Today I had my 20 week scan. I've got kind of mixed feelings about how things went there...

The good news is that the baby is growing, the head and trunk are still measuring normal, there is nothing right now that says that the baby will definitely not be able to live. The limbs are still measuring short but they have grown since the last scan (although they are now measuring at 15 weeks, but 3 weeks ago they were measuring at 14 weeks). 

There's no real "bad news" per say, but it was quite frustrating, I came armed with my questions and the doctor (understandably, I guess) was quite vague in terms of the responses. It was still just "wait and see" and "when the baby is born..." etc. I outright asked her what she thought the baby's chances of survival were but she wouldn't answer. I understand that she can't say for sure "this baby will live" or "this baby will not live" - but I don't understand why she can't say "from the way things look now, I would guess that the baby has an good/fair/poor chance of survival, but things can change either way so we need to keep monitoring it closely". She did more talking about me and how it's normal if I'm feeling depressed and asking how am I coping emotionally than she did talking about the baby. Also I didn't get to keep any of the pics of the baby this time which was kind of disappointing. I didn't specifically ask though, I probably should have... We did get to see the baby's face again on the 3D scan and I think she looks a lot like Lana... 

I have another appointment with a different doctor on Monday, I'm currently seeing both a doctor in the public system and one in the private system as well. I figured I'd keep going to the two of them and that way I'll have two opinions. But if it's two closed-mouth opinions, I don't know if there's much good in that...

Half way there!

Today, I'm 20 weeks pregnant. 20 weeks down, 20 to go. This pregnancy has definitely been flying by much faster than my first time. I have a little one to run around after and she keeps me busy and I don't have as much time to just "be pregnant". First time around, I joined a "due date club" online and started meeting them when I was only 8 weeks - some of them I still see now. This time, I thought it would be nice to join a due date club but it hasn't really happened like last time. First time around, I was reading all the pregnancy books and getting the "Your Pregnancy This Week" email updates, this time I did manage to sign up for the emails but I can't remember the last one I actually read (I think my baby was the size of a cherry or something ;) ).

I'm sure that the next 20 weeks will fly by as quickly as the first 20 did and in no time, this will all be the past and we'll have a better idea of what the future will hold. The next two months are going to be very busy for us - we've got three sets of visitors coming over here (so excited to see everyone!) - that will keep us occupied for a while! Then depending on dr's orders, I MAY try to get back to Oz before the little one gets here (wait and see for that one). In addition to that, we need to move before the bub gets here (better start looking!!), and we also want to hire a helper as well. So much to do, so little time!! 

We have our next ultrasound on Friday so I should have a "medical update" soon. Hopefully it all looks good and non-life threatening! We're praying for a good report there :) I'm going to go armed with questions. Hopefully we'll be able to get some more answers this time.

Thank you so much for everyone who has been supporting us over the past month or so - just another few months to go now. Please continue to keep us in your thoughts and prayers over the next couple of months. I know it does make a difference and we have been carried through this time by the support and prayers of others :)

What it means to be loved

I just found this song online and am sitting here listening to it with tears pouring down my face. Here are the lyrics:

What it Means to be Loved - Mark Schultz

For five months and eight days my wife and I had waited
Gettin' ready for our baby girl
But when he called the doctor said I need to see you
And could you come in soon
Then something died inside of me to sit with him and hear
The tests that said our baby may not live to be a year
Then turnin' to my wife and he said "what do you wanna do?"
And she said...

I wanna give her the world
I wanna hold her hand
I wanna be her mom for as long as I can
And I wanna live every moment until that day comes
I wanna show her what it means to be loved

So we spent each day, watchin' every minute
And prayin' for our baby girl
And I will not forget the way I felt that moment
When she came into this world
But they took her from the room just
as soon as she was born
And watchin' through a window I could see her holdin' on
When a voice inside me said...

I wanna give her the world
I wanna be her dad
I wanna hold her close for as long as I can
And I wanna live every moment until that day comes
I wanna show her what it means to be loved

I said everyday
we've got to bring her home
she's been out to prove the doctors wrong
Oh and you should see her now
she's as pretty as her mom
And there's a boy at the front door
waiting just to take her to her high school prom...

And he wants to give her the world
Wants to hold her hand
And someday she may get a wedding band
But she's gonna live every moment until that day comes
And we're gonna show her what it means to be loved

Oh yeah (what it means to be loved)

Show her what it means to be loved
What it means to be loved

You can listen to the song here.

Here's the story behind the song in the words of Mark Schultz (to see this as a video instead, go to Mark's webpage and click on "What it means to be loved" - it is pretty much word for word what I'm posting below.)

“What It Means To Be Loved” is a song that basically wrote itself. I just happened to be in the room when God dropped it in my lap. Its genesis was actually from a story that my wife told me about a family that she’d worked with at the hospital.

The mother was expecting a child and was told that tests revealed health issues that meant the baby probably wouldn’t live long after birth.  Although the doctors suggested terminating the pregnancy, the mother decided she would love the child as long as she could.  I took those emotions and that unselfish commitment and poured them into the “What It Means To Be Loved” lyrics.   The song starts out:

For five months eight days
My wife and I had waited
Getting ready for our baby girl
But when he called the doctor said, “I need to see you”
And “Could you come in soon”
Something died inside of me to sit with him and hear
A test had said our baby may not live to be a year
And turning to my wife he said
What do you wanna do
She said…

It was at this point of the song when I was writing it that these words just came spilling out:

I wanna give her the world
I wanna hold her hand
I wanna be her mom for as long as I can
I wanna live every moment, until that day comes
I wanna show her what it means to be loved…

And I knew as soon as I hit this chorus and tears were running down my face that this is one I’m going to be playing for a long time.  It’s the only song that I’ve ever played in concert where it got a standing ovation before the end of the first chorus was over.  

To me, what the song says is that we as Christians are called to love.  If that means loving a baby that’s going to be here for 7 minutes or 70 years, it doesn’t make any difference, you just wrap your arms around them and pour yourself into them.  I love the last bridge going to this:

Well ever since the day
We got to bring her home
She’s been out to prove the doctors wrong
You should see her now
She’s as pretty as her mom
And there’s a boy at the front door waiting just to take her to her high school prom

And he wants to give her the world
Wants to hold her hand

Inspired by this family’s story, my wife continued to look at the implications for our own family.  She said, “Since you’re adopted I think we should adopt kids too.” I said, “Ok that’s fine.”  She said, “I think we should adopt kids maybe with special needs.” And I said, “Ok, that seems like a tall order.” She continued, “Maybe someday we adopt kids with special needs that the doctor only knows they’re going to live for a year or two.”  I responded, “Honey, why would we do that?” And my wife said, “Because before they go to heaven, I want them to know what a great Christmas is like and I want them to know what a great birthday is like and let them know that they were loved well before they get to heaven and realize that love.  I want them to know that they were loved here on earth and celebrate them here.”  

That’s the kind of wife I’m married to.  These are the kinds of songs that come out of those stories.  It’s a special song and I’m grateful for all the people who’ve walked through loving unconditionally.  I hope the song means as much to folks as it does to me.

This song already means a lot to me and I've only heard it through once. I'm already showing my little girl(s) what it means to be loved, and I will continue to do that as long as I have breath...

My thoughts on abortion

I had always known that I would not under any circumstances have an abortion. So in this pregnancy, when we found out that there may be problems, it wasn't even an option for us. I believe that God gives life, and who are we to take a life? 

When we found out that there was a possibility that our baby may have Downs Syndrome, it wasn't even a consideration that we would possibly abort the pregnancy. However when I was researching about Downs Syndrome, I found out that something like 90% of women who find out through amniocentesis that their baby has DS chose to terminate. The numbers astounded me, I had no idea that it would be that high! I think that this number is so high because of a couple of reasons. Firstly, many women who would not terminate also decide not to get the amnio in the first place. This probably drives the statistic up a bit. Secondly, from my experience, as well as reading other people's blogs, some doctors often try to pressure people to decide about termination as soon as they find out the bad news, sometimes even offering the procedure the following day. I think that the doctors are probably coming from the point of view that termination is less complicated earlier in the pregnancy. And also, there's a time at which it becomes no longer legal, depending on where you are. 

My personal opinion is that if someone does receive bad news in their pregnancy, they should wait at least a week before making any decision about termination. (Well actually, I am personally against termination entirely, but I'm not going to force my opinion on others.) The reason why I suggest waiting is that I know that it takes a while for the news to sink in. I know that when I found out that the problem in this pregnancy was NOT Downs Syndrome but Skeletal Dysplasia, I have to admit that I had negative thoughts and if it hadn't been for my stance against termination, I may have started to consider the idea. I asked God "Why did you let me fall pregnant if you knew that there would be issues?" and I thought "I'd rather NOT be pregnant, then at least I could be trying to conceive and maybe I'd have better luck next time." I'm really quite ashamed to admit that now because in the past three weeks since we got the news, my thinking has changed soooo dramatically that it's not funny. 

When we initially got the diagnosis of Skeletal Dysplasia, I was WISHING that our baby had Downs Syndrome. But I'd already had a couple of weeks to get used to the idea of DS. I knew that people with DS generally live on average til their 50's. Babies with DS are often happy and sleepy, and children with DS bring a real joy to their families. Yes, the disease affects their intelligence. Yes they will have special needs, but at least they are generally pretty healthy and live a decent life span. Since DS is one of the most common congenital diseases, there is a lot of support for parents and families affected with DS, options available to them for schooling and even jobs as they get older. Yes it's a different, more difficult life. But I really felt a sense of "We can do this, it's not so bad".

Skeletal Dysplasia on the other hand scared me completely. The 55% mortality rate is the thing that really hit me. I had quite a high chance of not even being able to spend more than a few weeks with my baby, maybe I wouldn't even get to see her alive at all. I felt that I could deal with disabilities, but what I really felt I could not handle was the possibility of losing a child. I can understand the initial feeling that hits someone faced with that possibility. It's the feeling of "What's the point of carrying this baby for the next 4-5 months, going through all the associated pain (both physical and emotional), and then not even being able to bring home a baby at the end of it all?" 

With the three doctors that I saw in those couple of days, I was always sure to bring up the subject of termination myself so that I could tell the doctor that we would not consider it before they could even present it as an option. I'm glad that I did that because even though it was presented as an option, I had already decided and was not going to be swayed, even though my emotions were crying out thoughts that I never thought that I would have. 

Now that I have had the chance to really research Skeletal Dysplasias, I am all the more sure that I am making the right decision to not terminate - even if it wasn't for my personal beliefs. Firstly, with these kinds of birth deformities, there are two categories - lethal and non lethal. If our baby had the lethal form, then sadly, there is only one outcome in those situations and that is death. Nothing I do would change that outcome, but at least choosing not to abort, I will not have the associated guilt and "what if the doctors were wrong" that would come along with that. And in my limited research, I've found at least five or more lethal diagnoses that produced babies with non-lethal forms. If our baby has a non-lethal form on the other hand, generally speaking, there is no reason why she would not be able to live to a ripe old age, go to university and do just about anything that she wants. I know that there may be other medical issues that come with the disease, but I am sure that I would never regret my decision not to terminate.

I really think that it is one thing to say "I would not abort", but it is another thing entirely to be in the situation where abortion would be an understandable option and to go through that knowing that choosing not to abort is still the right decision for you. And I have walked that road, and I am more sure now than ever that we are making the right choice and giving our daughter every opportunity to live.

Lana Joy

Most of this blog so far, I've been talking about my pregnancy and the issues that we've been facing, but I wanted to take some time out and focus on my first born daughter who is one of the biggest blessings in my life.

My little 16 month old munchkin has to be one of the cutest and smartest little girls that I know, and of course I'm not being biased ;) I love this age - she's learning so much so fast and is really starting to develop into a cheeky little monkey.

Tonight as we were putting her to bed, she decided to give Bernard and I a little "puppet show" on the rail of her crib (copying something that Bernard has done with her a few times before). She also jumped for the first time (mattresses were just made for jumping on, obviously!!).

This morning at church, she made my friend's day by yelling out "GABBY, GABBY!!!" from the back of the church when Gabby was making the announcements at the end of service. 

Yesterday when we were out for dinner, she cracked me up by sneezing a mouthful of rice all over the poor waitress who was entertaining her while we were eating (I couldn't stop laughing every time I looked at her and noticed the one grain of rice on her chin that she missed when wiping herself down - poor girl!!)

It took a while for us to conceive the first time around, I was so worried that we may never be able to have children. We had just started going for tests to see if everything was working the way it should, and at long last we got that big fat positive! Being a first timer, I was so scared of miscarriage and of everything else pregnancy related. I read all the "your pregnancy this week" books and websites that I could find - and was so relieved when our little girl was born. 

Lana has been such a joy for us - "contented" is a word that everyone used to describe her. She ate well, slept mostly well, she's never really been sick, she's achieved all her milestones early.

I love how she's now developing into her own little person with her own quirky personality. Her favourite word at the moment is "Ding dong!!" (thanks Nanny for that one!), her favourite food is berries of any kind, and she loves toes. Don't ask me why, but they fascinate her. Also shoes. She puts our shoes on and wears them around the house now.

It melts my heart when she gets excited when she sees her mummy, or when she tells me "Besshhu" when I sneeze, or when she repeats "Wahjew" when I tell her I love her.

There's so much I could say about my little angel but I've just been spending some time thinking about her lately. The first week or two after I got the news about this coming bub, I was so focused on that - but the past week I've really been just enjoying my daughter and appreciating her.

I'm so glad that God has put her in our lives, and especially at a time like this - when we're feeling down, she'll do something goofy and make us smile. When I'm scared about this pregnancy, I hold my daughter and somehow it makes it feel better. I am so blessed because of my daughter.

17 week ultrasound photos

Ok, so I'm finally putting up some ultrasound pics. I'm not going to put up all of them, just the ones that are either the cutest, or the ones that show the most information. A lot of the pictures are just of a random limb so that the measurements could be taken. I'm not putting up those pictures coz they're kind of boring. This ultrasound was taken 2 weeks ago when I was 17 weeks into the pregnancy. Everything measured normally except for all the bones in the limbs which measured consistently at 14 weeks. For more information, read this post. 

This is the profile shot, just for cuteness factor. I don't think that much can be seen here about the baby's condition. You can notice (slightly) that the abdomen is larger than the chest/ribs area, but I don't think it's that obvious in this shot...

This is the hand of the baby. The real "cause for concern" is that the thumb is not positioned correctly. Remember in my previous post, I mentioned "hitch hiker's thumb"? This is what it looks like on the ultrasound. (we have multiple pictures of this, this shot captured it the clearest though). 

3D shot of the baby. If you look closely, you can see the shape of the hand in this shot too. (if you click on the picture, it will enlarge and make it easier to see). The arms are disproportionally small, although probably if you're not a doctor, it's harder to see...

You can kind of see the other hand in this picture, although it's somewhat mushed against her face so it's harder to tell the shape of the hand. My understanding is though that the two hands are shaped similarly.

Another 3D shot. The arms do look very small here, even to me. 

So, there's the pics from my 17 week ultrasound. My next ultrasound will be at 20 weeks (which is next week). Hopefully I can get a bunch of pics from that ultrasound too.

My thoughts on God and suffering

As a Christian, one of the "hard questions" about believing in God is "Why do bad things happen to good people?" and "Why is there so much suffering in the world?". For some, this is the reason that they cannot believe in God. I don't pretend to know the answers to such questions, but I wanted to share my thoughts about God and my personal situation. 

Naturally, when I first heard the bad news, my immediate reaction was "God, why me?" and "God, heal our baby completely" - but as I was praying about it and thinking about it, reading the bible, I began to think a bit differently. 

First of all, to believe in God, it's necessary to believe that God is sovereign, that is, He is in control of everything that happens. He has the power and authority over everything that happens - from the rulers who govern our nations, to the weather, to the things that happen in our lives. I believe that He was in control when this baby was conceived, and that He was the one who gave this baby life. 

I was doing a bible study about God's sovereignty a few weeks ago and it was looking at the life of Job. (Job is an excellent study for anyone with questions about God and suffering!!) In the story of Job's life, Satan came to God to ask God for permission to test Job by bringing suffering into Job's life and seeing whether Job would curse God. God granted him permission to touch Job, but with certain guidelines - he was not allowed to take Job's life. It's interesting to notice that 1) Satan had to ask for permission before doing anything, and 2) God allowed it. 

Some Christians believe that as Christians, we have the promise of perfect health, wealth, whatever we ask for. Some Christians believe that if we do not obtain that, it is because of our lack of faith, or because of sin in our lives, or because of some other fault of our own. I believe that this false belief about God not only is 1,000,000% wrong but it's also damaging to people. First of all, it says that the outcomes to situations (our own and others) are directly related to us - whether we prayed enough, or were good enough, or whatever. This can lead to people feeling self-condemnation and even worse. Then when people who believe this see others who are in bad situations, it can lead to people being judgmental (oh, THEY mustn't have prayed enough or done the right thing). I remember a girl I know whose baby had an abnormality and didn't survive. People actually said to her that it was because she wasn't married to the baby's father!!! These beliefs can drive people away from God - by numerous different ways. By people who are meant to care being so judgmental, by our own feelings of condemnation, if something bad happens and God does not answer in the way we want, then we can take that as "proof" that God does not exist...

So back to Job, my husband read me an interesting scripture the other day from Job 2:10. Job was suffering and his wife came to him and said "Curse God and die", but Job replied "You talk like a godless woman. Should we accept only good things from the hand of God and never anything bad?"

The bible is full of situations where bad things happened to good people. We have company in our suffering. 

David was a nomad for years, running for his life from a king who wanted to kill him. Most of the psalms, when you read them, are actually kind of depressing. They go something like this: People are chasing me and want to kill me. God, why did you allow this to happen to me? My life is so hard. BUT they don't stop there. David knew how to say "Nevertheless, you are still God and you are my protector. I will trust you and praise you regardless of the situation."

The apostle James was killed only maybe months (I'm guessing) after Jesus died. Stephen also was martyred. 

Paul had a "thorn in the flesh" and prayed many times for God to remove it, however pretty much, God said "no". 

Joseph was sold by his own brothers into slavery and once he got to Egypt as a slave, he was put in a house where he was wrongly accused of a crime he didn't commit and was thrown into jail. In the aftermath of this, he had the opportunity to work in Pharaoh's courts and even became 2nd in command over all of Egypt. When he was old and reunited with his brothers, he said to them (one of my favourite scriptures), "You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives."

In addition to these people's lives (and many more similar situations, those were just the ones off the top of my head), there are multiple scriptures that state "In this world, you will have troubles". 

So in short, my views on God and suffering: God doesn't promise us a life with no suffering. Christians are not immune to all the problems of life. We have to face difficult situations just as much as anyone. Hopefully (but sadly not always) there are some problems that are lessened for Christians who are actively living for God (such as things directly related to sin - extramarital affairs, diseases caused by alcoholism, etc). But when it comes to death, everyone needs to face death. Everyone is susceptible to disease. 

I do believe that God can heal - however I don't believe that God always promises to heal right here right now. Some healings may not be made complete until we're in heaven. I believe that miracles do still happen - but I also know that God is not a genie in a bottle who will perform a miracle just because we rubbed the vase.

So if God doesn't promise that things will always be perfect, where does that leave us? Well, what God does promise is that all things will work together for good. And I 100% believe this. No matter how awful a situation might seem, God can bring good from it. Like Joseph said, his brothers were planning something evil - but God took it and brought much good from that situation. 

My responsibility in this situation is not to question God, but it is to trust God and to keep my attitude right. I don't want to let my suffering make me bitter or twisted. I trust that no matter what the outcome is, God has a plan and a purpose and He can bring good out of any situation. (Jeremiah 29:11 says "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.")

My prayer for my baby is that God's will will be done in her little life. I know that her life is in God's hands and I trust Him. I want my baby to live, more than anything. I want her to have a long, happy life. I even pray this for her. I pray that God will heal her - but in the end, I have to pray "... if it is your will". I can't tell God what to do, and I can't assume that I know what his plan in this situation is. I have no idea what the outcome will be. I know what I WANT the outcome to be, but I know that more than that, I want God's will to be done. 

I was thinking about faith - and some would say that it takes a lot of faith to believe God for a miracle... but I believe it takes even more faith to believe that God has a plan regardless of the outcome... It takes more faith to trust God when he doesn't perform that miracle we've been praying for...

What if...?

I've always been the kind of person who has thought through all the possible outcomes to a situation and worked through them, even when they're not likely to happen. I remember saying to my husband 5 years ago before we got married "If anything ever happens to my parents, I want my (then) 7 year old sister to live with us". Bernard was flabbergasted that I even had THOUGHT of the situation in the first place as it's not something that is particularly likely. Whenever we talk about anything regarding death or bad things happening, it's because I brought it up in a "What would you do if..." kind of question. Bernard rarely knows how to answer because he hasn't really thought about it.

The situation we are in at the moment lends itself to soooo many different "what if" kinds of questions that my mind is working overtime trying to process it all. Usually right at bed time when I'm about to fall asleep. Most of the time, Bernard is already pretty much asleep and I whisper quietly "Baby, are you awake?" I hear a grunt and so proceed with my latest thought, "What are we going to do if..." - then after he says "I don't know, I haven't thought about it", I fall asleep and leave him awake frustrated at me disturbing his sleep (this isn't a new thing either, I've been doing that to him our entire married life!!)

Most of my questions lead to more questions and I know that it's impossible to know the answer to all of them before the baby is born, or at least, diagnosed... but just thinking about it helps me to prepare myself for whatever is to come.

Best case scenario, what if the baby lives and is perfectly normal? I know that medically it's unlikely - however I also know that stranger things have happened and so we can't completely rule out the possibility. Would we be glad that we found out that there may have been a problem, even if it turned out to be wrong? Hard question. But I like to think that in this situation, we would be so thankful with the blessing of life and health that we wouldn't be bothered being mad about a wrong diagnosis. Yes it's caused extra stress throughout the pregnancy, but it's also caused a greater awareness for these issues - I had never really known about skeletal dysplasia before this pregnancy, and it's also given me a greater appreciation for good health - particularly the health of our first born daughter. 

Worst case scenario, what if the baby doesn't make it? Will we have to go through all the labour and delivery and funeral in a country which we don't really call "home" without our closest friends and family around? Would we go back to Australia for the birth of the bub if we had a lethal diagnosis? Would that be in the best interest of the baby? Would the doctors even LET me travel back since I'm now a "high risk pregnancy"? Would we have the baby here in Hong Kong and then go back to Australia for the funeral? So many questions but I don't really want to even start looking into the answers to those unless we get the dreaded news. I think that while it may be helpful for me to think of the options, answering these questions would be particularly stressful and not something I want to do unless absolutely necessary. 

The "middle ground" scenario - what if the baby lives but has a form of dwarfism that she has to live with for the rest of her life? Is Hong Kong the best place to raise a child with disabilities? I've always said that it's not - and even before I was pregnant, I told my husband (in one of my "what if" moments), "If we ever have a baby with special needs, I'd want to move back to Australia right away". Now that it's actually a likely outcome, I don't know if it is the best option. I guess I need to really look into the medical system over here AND in Australia and see what each offers. From my online research, most of the specialist doctors are in the US - would we want/need to travel there for some of our medical advice? There's no doubt in my mind that socially, Australia is a much better place than Hong Kong for people with special needs and disabilities.

From reading other peoples blogs, I know that some forms of dwarfism (particularly Diastrophic Dysplasia, which is my suspicion) come with a whole lot of medical issues. Pretty much from birth, most children need to have some form of leg casts and braces to try and correct clubfeet. Many children also are born with cleft lips/palates which may need surgery to correct. Some babies also need braces or casts on their hands to correct the hitchhikers thumbs (which it seems like our baby has). Since this is such a rare thing (I think for DD, it's something like 1 in 500,000), do the doctors here have the experience to deal with these issues? Or the doctors in Australia, are they any better? I really have no idea of the answers to these questions. I just want what's best for my child.

I do know that if the baby lives and does have a non-lethal SD, more than anything I will be glad that she made it. And I would rise to the challenge of meeting her needs and raising her to the best of my ability. I sometimes feel completely inadequate for the challenge. 

When we first got the SD diagnosis, I remember crying with Bernard and saying "I'm not strong enough for this" - but I realise that really, no one is strong enough. No one thinks that they are going to have to go through something like this - but having to face it brings something out in you and you realise "I can do this. Not because I want to, but because I have to."

At the moment, everything feels so uncertain, there are more questions than answers. But I know that one by one, over the next less than 5 months until the baby is born, we will have to answer those questions. Not all of them, because I know that each ultrasound will give us more information and let us know what the likely outcomes are. I know that things probably won't be "certain" until the little one is here and we know more clearly what's going on.

Loving Little Leah

I've been reading a bunch of other blogs lately, particularly ones where the mother was diagnosed in pregnancy as having a baby with Skeletal Dysplasia. Some of these blogs have a good outcome, others sadly don't. One blog which I LOVE is Loving Little Leah. Leah had a lethal form of Skeletal Dysplasia called Short rib polydactyl syndrome (isn't it crazy, probably 99% of us haven't even heard of such a disease) and spent 45 minutes with her parents before she went to heaven. Leah's parents, Amy and Jeff, have such an inspiring attitude through all this - and sooo many of their posts have such great stuff in them. I wanted to share one in particular though. 

Reflections

When we saw our daughter she was so beautiful, it was hard to understand why she couldn’t live. I knew that her little chest was too small. I knew it couldn’t hold healthy lungs, that she didn’t have functioning kidneys, that she was too small and so weak, but it didn’t connect at all with the full picture...her chest didn’t seem that little, her body too weary. She seemed so perfect.

Leah’s little body was distorted enough to cause death, but not enough to make her seem anything but lovely to me. Her creation stunned me in the moments that I saw her. She came out of me. Marvelous. Incomprehensible. Amazing. We rejoiced in how wonderfully she had been made.

Yet my beautiful child was suffocated by her skeleton, a deformity lurking inside her that prevented her from having the full and happy life I longed for her to have.

I don’t presume to know the mind of God, but I do think that becoming a parent has helped me comprehend his character as a father more fully. I wonder, as he looks upon me, as I looked upon my child, does he feel the same thing? Love for a creation so beautiful and yet so inwardly crippled, longing for his child to live fully in him, unhindered by the deformity of a sinful nature?