There’s just so many things to do and so little time… I just wish there’s like 48 hours in a day…

The baby is due end of this month. We still have quite a number of things to do and prepare like (in no particular order):

1. Pack the bags - hospital admission, hospital stay and when baby is out of hospital

2. Paint the room Just completed at 1130hrs

3. Clean refrigerator (or maybe we should just get a new one since we’re going to move to our new house by end of the year anyway)

4. Baby’s car seat (need to do more research into this — seems like there are so many types that it’s gotten to a point where I got confused as to what is what — serious! there’s the stroller, stroller-and-car-seat-in-one, stroller that allows lying down and seated, etc)

5. Steriliser? Or just use tablets? Or use boiling water? Seems that plastic milk bottles may release Bisphenol A or BPA which can cause chronic toxicity. Over the weekend, we bought 2 glass milk bottles — ya, we managed to find them.

6. Wash baby clothes, napkins, etc… We are using some hand-me-downs from relatives and friends. So have to wash them first as some have been stored for months (or I was told, even years!).

7. Clean up room. Currently we have lots of books lying around in our room (have to read up on how to be good parents, etc) and there’s a bit of dust now. Will probably need to store them in plastic containers so it will be easier to clean.

8. Baby cot… Hmmm… What kind of mattress? Spring? Latex? I think we’re kind of decided on this — coconut fiber. I think its coconut anyway.

9. Diapers… Errr… Do we stock up now? What size? How much will we need? *sigh*

10. Baby grooming set - nail clippers, etc… I just found out that you can’t use the normal nail clippers for the baby!

…The list just goes on and on…

Many of our concerned family and friends have been asking about our baby. I guess some are also worried since this will be our first time being a mum and dad (which one is nicer - dad, daddy, papa, pups, Daddy T, Daddy A, Big T?).

We are touched by the many kind gestures as well. Besides advice, many of our family and friends have also offered us stuffs like baby napkins, baby cots, clothes, pump, feeding bottles, etc… Words just cannot express how grateful we are to have so many wonderful family and friends.

Mrs Tai ended up going to the hospital alone for the last 3 follow-up visits because I had some problem getting leave from my present job — which is partly why I decided to quit my present job and look for a more ‘family-friendly’ work environment. I felt bad about all this because I was not able to be there for my wife as well as my baby. To me, this is not a very good start.

But from what Mrs Tai have told me, the baby is doing alright. She is growing very healthily and normally. Ultrasound scan shows everything else is fine, other than the earlier suspected condition - congenital diaphragmatic hernia. Yes, doctors have told us that the baby should a girl.

On her latest check-up (just two weeks ago), Mrs Tai also got to meet up with a neo-natal specialist. He advised Mrs Tai to consider the option of planned delivery (we had originally wanted to try natural birth as we read that it is much better for the baby) as this will allow the hospital to be ‘ready’ for our baby - the pediatric surgeon can be put on standby as well as the necessary equipments. We have until early May (the next follow-up) to inform the hospital of our decision.

What the neo-natal specialist have told us is quite true and logical. So we’re most likely to go with planned delivery instead — just not too sure if its induced or Ceasarian section. Will need to check with the hospital again on the next visit about ‘planned delivery’.

To be honest, there are still quite a number of things that we have yet to work out, like confinement lady’s services (do we still require one?), where will baby be sleeping when she comes back from hospital (we have the baby cot but where to put the cot is another question), do we buy a new refrigerator (we need lots of freezer space and since we will be moving to our new place by year end, should we get the refrigerator now?)… So many questions. So many little things to think and do. But we know from past experience that eventually, everything will fall correctly into place.

Oh ya, we’ve got a name for our baby already…

Over the past few weeks, things have been a bit of confusing for both my wife and myself. But I am glad to say that we have both ’settled-in’ (in regards to our baby’s complication). I have to say that I have never realised how much of preparation work is required for the would-be parents. Getting baby cot, strollers, making the house and bedroom more baby-friendly (meaning clean the room, etc), baby clothes, baby names (in a way, we have actually decided on the name), etc…

We are just glad that there are a few friends who have offered to loan us their baby strollers, baby cots, clothes, etc… If you believe what the old folks say, the baby will be ‘easier’ and more ‘comfortable’ when using hand-me-downs. The more hands the item’s been through, the better it is for the baby.

It was also nice to receive calls from family and friends offering to help us find out more about Congenital Diaphragmatic Hernia from their local hospitals (these are friends staying overseas). Some even offered us a place to stay should we decide to go overseas for treatment. Others have included us in their prayers. We are so touched!

But I think for now, we will just stick to getting the treatment and surgery from UMMC. We have confidence in the doctors at the UMMC. But yes, we are also reading up, surfing the net, asking around, etc to find out more about Congenital Diaphragmatic Hernia. No harm in having more knowledge and options.

Two week ago, I bought two children’s songs CDs. It took me a while to find those CDs. And honestly, I forgot how to sing most of the songs on the CD. Seriously, how many can still remember the lyrics to songs “How much is that doggy in the window”?

Just last week, my wife bought a toy for our baby… Can’t remember what that toy is called… It’s the thing that plays music when you pull the string. But I told my wife the string was to short (the song ends very fast). Oh well, maybe we’ll get another one for our baby later.

Thursday and Friday was spent once again at the hospital.

Yesterday (Thursday), we saw the doctor as part of UMMC’s admission procedure. In order to deliver at UMMC, we are supposed to register, attend a course (was told it is mandatory for all government hospitals to have this breastfeeding course for all mum-to-be) and then see the doctor (officially since Monday’s appointment was more as a 2nd opinion). We had originally wanted to use Serdang Hospital like what Dean and Adeline did with baby Shuyin. Serdang Hospital is one of the newer hospitals and basically everything there is ‘new’. But because of the complication that we are now facing, both Mrs Tai and myself have decided we will just have the baby delivered in UMMC. We understand they will have pediatric surgeons on standby during delivery.

After the course (dad-to-be are encouraged to sit in as well to provide morale support to the wife), we waited for our turn to see the doctor. As ours was a special case and we had to see one particular doctor, we faced this incident where we were told its our turn. When we went into the room, we noticed it was another doctor. After a quick check and after asking us a few questions, the doctor realised that we are a ’special case’ and told us to wait again outside for the correct doctor. There are a few doctors on duty at UMMC’s maternal clinic.

After another 10-20mins of waiting, we finally got to see the doctor. She basically explained to us again and asked if we have any further questions regarding our baby’s condition (see The ultrasound scan and The follow up scan. She then used to Doppler to listen to our baby’s heartbeat… Words cannot describe how it feels when you actually can hear your baby’s heartbeat. Seeing her images on the ultrasound scan is one thing, but hearing our baby is a totally different feeling. I felt so happy and I just can’t wait for our baby to finally come into this world.

The doctor also wrote us a referral letter for us to meet up with the pediatric surgeon on Friday (today). And before we left, she told us that she will arrange for us to meet up with a Neonatal Specialist before the baby is delivered - possibly during one of the next ultrasound scan sessions.

So this morning, we were off to the hospital again early in the morning. We had been told to come early as we had no prior appointment with the surgeon and would be considered as ‘walk-in’ patients. However, our doctor was nice enough to write the word URGENT on our letter yesterday.

It was about 2 hours wait before it was finally our turn to see the surgeon. Basically he acted more as a counselor for the two of us. He explained the situation again and even drew a diagram for us to understand further. He also explained his role - the surgeons will only come once the baby has been delivered. He also briefly explained to us what they will do during the corrective surgery. According to him, the corrective surgery is done after the baby is stabilised, which is usually on the third day. The only thing is that during the three days, baby will be on IV drips. No food (milk) until after the surgery. Even then, it will be quite a while after the surgery before the baby is allowed to take food (milk). I guess our baby will not get to taste food until the second or even third week.

First of all, thank you to all our friends who have called up or texted us over the last few days. We really appreciate the kind words, prayers and concern you have all shown. It had been one nightmare weekend for us and we really appreciate the support shown, especially my wife. She had at a time over the weekend felt very down and was blaming herself for this - if she had eaten the wrong food, moved too much, etc. But I told her it is not her fault. It is no one’s fault. In a way, you can say it is fated. We can hope it will be a relatively smooth journey for us in the next few months till delivery.

Almost the whole of Monday and first half of Tuesday was spent at the hospital.On Monday, we met up with another doctor at UMMC (University Malaya Medical Centre) who performed a more thorough ultrasound scan on our baby. She also suspects the same as what our regular doctor has suspected last Saturday - our baby is most likely to have this condition called Congenital Diaphragmatic Hernia.

Diaphragmatic hernia?!? What is that? That is what went through my mind the first time the doctor mentioned it. It is the same when I tell my concerned friends… A big question mark appears. So, in my own words, understanding and illustration… Diaphragmatic Hernia basically means that the diaphragm (see illustration below) is either not developed properly or there is a hole/ tear on the diaphragm and it is causing the organs from the abdomen (like the stomach, liver and intestines) to move into the lung area.

The doctor explained how she came to such conclusion and I have to agree with her. The ultrasound scan on the hear shows that there is ’something’ located next to our baby’s heart. Scans on the abdomen showed us that our baby’s stomach was ‘missing’ or not at its place. So it is very likely that our baby’s stomach and perhaps even the bowels (intestines) have moved into the chest/ lung area. Other than this, there is nothing wrong with the baby - heartbeat is regular, growth is normal, no abnormalities with the hands and legs, etc…

Text added based on what I remember. I could have heard wrongly and mis-interpreted the photo.
According to the doctor, there is not much we can do at the moment. We will have to wait until the baby is delivered in May. Then the pediatric surgeon will take over. It is very likely that our baby will need to undergo a corrective surgery immediately. But all these will depend a lot on other factors as well. Anyhow, we are scheduled to meet with the doctor again this Thursday (tomorrow) and then the surgeon, on Friday.

Doctor have also informed us that there is a possibility of a ‘worst case scenario’. I guess this is one scenario which we hope will not happen but in a way, we have to be prepared.

Both Mrs Tai and myself have agreed that we will be open and positive about this. We will post updates as well as our experience, findings, links, etc here so that if there is anyone else who is facing such situation, especially in Malaysia (though we do hope no one else have to go through this), we are more than happy to share our experience and lend our support.

Mrs Tai is about 6 months into her pregnancy. Both of us are very excited about having our first child. We are still preparing for many things such as getting a baby bed, baby chair, confinement lady (sort of like a post natal doula), etc… Some have been generously given lent to us.

Over the past few weeks, especially over the Chinese New Year, we have had many friends and relatives asking us if we know whether its a baby boy or girl. On our last visit sometime end of January, the doctor said he could not be certain as the scan was not clear. So when asked, we would just say we don’t know but the next visit would be sometime at the end of February (in fact, it is today). Honestly, I have no preference be it boy or girl. I think both are equal and unique in their very own way.

The appointment was in the morning. So right after breakfast, we went straight to the hospital. We wanted to there early as we know from past visits that if you go there late, you end up having to wait for quite a while (can be more than 2 hours)… After about 1 hour of waiting, it was finally out turn.

As usual, the doctor will ask Mrs Tai the usual questions — Any more morning sickness (Mrs Tai was one of the few who had very bad morning sickness till the almost the end of the 5th month), anything to ask, etc… The doctor also commented that Mrs Tai’s weight gain is on the ‘above average’. He advised Mrs Tai to be more careful about what she puts in her mouth from now on.

Next, it was the part we always look forward to. The ultrasound scan. This is the time we get to actually ’see’ our baby and take home photos of the baby. Like every other time, the doctor will scan the body of the baby and take down measurements to check on the baby’s growth and development. He will also check the heart and show is how the heartbeat looks like. As always, Mrs Tai and I will be excited and happy to look at our baby.

The doctor continued to scan the baby but I noticed it was focused on a specific area. The doctor then asked Mrs Tai if she is free for another check on Monday. That’s quite unusual… Normally the appointments are spaced out about a month apart.

We asked the doctor if there’s anything to be concerned about. He told us that it is nothing to worry for now but he suspects something and would like to schedule a more thorough examination together with another specialist. I can understand he does not want us to panic. He definitely do not want Mrs Tai to be upset or anything as it can affect the baby. He just briefly told us that he suspects our baby may have what is called Diaphragmatic Hernia. He wrote it down for us on the ultrasound print outs and told us to look it up on the internet. We can then probably discuss on Monday with him.

Suddenly, everything starts crashing down. What is diaphragmatic hernia? I have heard of hernia but I never actually found out what it was. Is it serious? How would it affect the baby? All these questions racing through our minds. We were still at the hospital waiting for our turn to settle the bill. Both of us wanted to quickly go home and look it up. Mrs Tai was visibly upset and worried. I have to be strong for her. We settled the bill, got home and started to search for information on diaphragmatic hernia.

I guess no parents can really prepare for all these. No matter how prepared we think we are, everything still crashes. The heart sinks… We are still in a shock. What does all this mean? What happens next? We hope to find out more on Monday. At the moment, we can only hope for the best…

Some sites for further reading on diaphragmatic hernia:
http://en.wikipedia.org/wiki/Congenital_diaphragmatic_hernia
http://www.chop.edu/consumer/jsp/division/generic.jsp?id=81164
http://www.healthsystem.virginia.edu/UVAHealth/peds_hrnewborn/dph.cfm
http://fetus.ucsfmedicalcenter.org/cdh/