29 Aug to 31 Aug 2010 – Days 29 to 31

29 Aug: Weighed in at 1.18 kg

30 Aug: Weight is 1.21 kg and taking 24 ml of EBM.
Leia is looking more pinkish and her chest doesn’t cave in as much when she takes her breaths unlike her below 1-kilogram days.

My aunty had text me earlier in the morning and wrote “Leia hits 2010 g” and I was like … “Really? 900g increase. That’s a bit scary.” And I told D over on MSN and mentioned that my aunt probably made a mistake with the first two digits. D was in his silly nonsensical mood and he said something like the 900g could be ‘cos she hadn’t pooped.

This silly explanation is a constant bantering between us ‘cos in the earlier weeks, the PD had mentioned that my daughter’s weight didn’t change cos she had let go of a big one just before her daily weigh-in.

31 Aug: Gained another 25 g and weighed in at 1.235 kg

The month of Aug has come to an end and it has been a long trying time for D and I. We just don’t know how things will change or improve in the next few weeks, but hope that the worst is really over and we could get back to our normal life as a family of four.

24 Aug to 28 Aug 2010 – Days 24 to 28 (Yakkety Yak)

25 Aug: Weighed in at 1.12 kg. Able to take 20 ml of EBM and her long line was finally taken out (which meant our feisty fighter has “downgraded” to Class 2B after almost a month on the pricey Class 3)

27 Aug: Weighed in at 1.135 kg  and able to take 22 ml of EBM

28 Aug: Weighed in at 1.16 kg and taking 23 ml of EBM

Our lil’ girl is 31 weeks old this week and we have generally settled into a routine by now.

Her weight gain is still slow, and the PD hadn’t a clue where all that milk went to. Nonetheless he couldn’t increase the amount more than a mililitre each day ‘cos of the teeny stomach that my lil’ girl has. On the one hand, we know that more milk equals more weight gain (maybe faster even), but she isn’t a full-term newborn, so everything has to be calculated cautiously and patience is a lesson we continue to learn each day.

Still, weight gain of even 5 g is still weight gain. If she actually loses weight at this stage, it would mean an infection had set in and milk feeds would have to be stopped, blood tests would be done to find the cause of the infection. Thereafter antibiotics would need to be administered to cure the infection before things go back to normal. Gosh, I really wouldn’t want that to happen now that we are not as anxious as before.

Our lil’ one is always sleeping during the time when I visit. Sometimes the nurses would tell me, “Why don’t you read to her?”. And I am like, “Duh, cos she is sleeping?”

In the first couple of weeks after she was born, I was still coming to grips to being a mum again and worrying about her wellbeing, that when I visited her each day, all I could do was sit beside her and look at her. I found it hard to talk to her (again, the nurses kept asking me to talk to her), mainly ‘cos what do u say to a 28 week old baby?

I’m not exactly a talkative person and I hate small talk. And if the baby is sleeping and hooked up to all kinds of vitals monitoring systems which beeped all the time, it is hard to find a topic to talk about and sustain the one-way conversation.

Also the room is not that big and privacy is not easily available. I don’t think the nurses there care what we mums say to our babies, but I just don’t feel comfortable just yakking away. 

And one more thing, my baby is INSIDE the incubator. I have to speak extra loudly for her to hear, if she is even remotely interested. And if I do speak whisper or sing to her, I would put my head close to one of the circular windows closest to her face and do that. Not forgetting I have my mask over my mouth, which also makes it harder to talk.

There were other mums who could just blabbed and baby-talked to their babies at the NICU, and I found myself listening to them rather than concentrating on thinking of something to say to my own kid. Kudos to the one mum who went on and on with just one topic: Her son has many swaddling blankies and he would be swaddled all the time when he gets home since all the babies at NICU, boy or girl, are just in their diapers.

The most I can do is to sing softly to her (through that little circular window) and maybe read the children stories that I had downloaded onto my iPhone 4.

Sometimes when I sing to her, she would actually open her eyes to look at me. Maybe she just wanted to know who the hell woke her up from her sleep.  🙂

23 Aug 2010 – Day 23 (A Heartwrenching Day)

Earlier in the day, I got news that my lil’ one had put on another 30 g and weighed a respectable 1.11 kg.

Currently we are monitoring her weight gain like brokers keeping tabs on shares and stocks. Her weight is crucial for a number of things: to get out of the incubator, to be able to breathe without the low level oxygen and to be able to breastfeed or drink from the bottle. It took her close to a month before she regained her birthweight of 1.07 kg, having lost quite alot earlier. In a way, the worst is over for my Feisty Fighter when she started putting on weight and didn’t have any problems with the increasing milk feeds.

However we were reminded on the reality of having a preemie and how things could change so quickly.

A week ago, another preemie girl was born at 25 weeks, 790g. Our lil’ girl was the smallest in the ward when she was born, but this new baby was even smaller. I remembered D saying how worrying it would be when this new preemie started to lose weight. We saw her parents a number of times and the day before when we took TJ along to see his sister for the first time, they were also waiting to enter the NICU. The mum would be singing and talking to her baby girl in Chinese, doing similar things as I.

Just like every day, I would press the door bell and wait for a nurse to open the door for me to enter NICU. But today, I heard lots of sounds from behind the closed door, it was muffled but I thought it sounded painful. The nurse opened the door but didn’t open it all the way, in fact I took her gesture to mean that I would have to come back later, which would be the case whenever a procedure needs to be done. However she called me back as I was about to walk off and kinda asked me to be silent.

As the door opened wider, it hit me. It hit me harder when I saw the white movable curtain shielding area where the one-week-old preemie was. And I knew, a parent’s worst fear, when I heard the loud sobs and cries of the dad and mum who had just lost their baby girl.

The nurse who opened the main door for me quickly got me the apron and mask,  left it on the table near my baby girl and just as quietly closed the sliding door after her. I kept my eyes down and tried to just concentrate on my lil’ one, but even from behind the sliding door, I could still hear the pain. I felt it even more as I touched my baby girl’s little toes and couldn’t help but teared.

That could have been my daughter. Had she been born at 25 weeks when my waterbag first sprung the leak.

It was really hard not to empathise especially since all of us parents who have our kids in this ward are in the same predicament. Of course, babies have a better chance of surviving if born later and are heavier, but there are the anomalies. Pasted on the window inside NICU is an article about David Lim’s (a former National swimmer) preemie daughter who was born in TMC at 24 weeks and weighed only 600g but is now an active toddler. My aunty mentioned that she stayed in the NICU for 3 months and the parents had a bill of 150k.

So who decides on mortality? It is never easy for me to grapple with children’s death, and I was there when it happened. It was already painful for me, even more so for the parents. There were other parents over on my side of the ward, but they didn’t seem to be too affected by the pain that was going on. So maybe I’m just weak.

I saw how the nurses were quieter than usual but still had to be professional about things, and wondered how many times they had seen death on their watch.

D came shortly and he was puzzled by the racket. But when he saw my teary eyes and that I shook my head a few times, he finally understood and it hit him too. I suppose we felt more of a connection to that baby and her parents.

When we were ready to leave, I saw the nurses beginning to disconnect the cables and I suppose preparing the baby’s body from behind the curtains. The PD looking after the baby had came by but the parents were not around.

When we stepped out of the NICU, both parents were crouched down just outside, the mum was inconsolable and the dad was trying his best to comfort her. Our eyes met for a while, and I wished I could say something but realised nothing more could be said. We prayed for the parents that day.

D and I were affected by this for the rest of the night, and sometimes when I recall the episode, my heart still aches and I thank God for all the good things, big and small. 

Time can dull the pain and lessen the heartaches, but it will never make all that disappear.

21 Aug & 22 Aug 2010 – Days 21 & 22 (Birthweight Reached)

A day after D’s birthday, our Feisty Fighter finally hit her birthweight
(1070 g) after 3 weeks. It took a while for her body to start retaining her milk feeds. Dr Ong is a careful PD who only increases her milk feed by a mililitre each day so that our baby’s gut will take to the milk well since her stomach is much smaller than a full-term baby.

And the next day, she put on another 20g and weighed a good 1090 g. We took TJ to see his lil’ sister and he looked really serious when the NICU nurse lifted our lil’ one out of the incubator for TJ to have a closer look. TJ knows that I have to go to the hospital to see his sister but I think he will only understand the concept of a sister when she finally comes home.

Our lil’ one still has the occasional desaturations and well, it will take her a few more weeks to grow out of it. We have to wait patiently for her brain to mature, bearing in mind that she is supposed to be still nice and snug inside me.

Way to go, lil’ one…

Dilemmas & Decisions

Having received the 3rd letter (the time lag between the 2nd letter & this one was just 1 wk) requesting us to pay another deposit of 4k, both D and I were rather quiet and didn’t dare broach the topic of “Maybe we should transfer our daughter to KK instead”. 

Our daughter’s NICU bill at Thomson Medical Centre (TMC) currently stands at $18.5k without Medisave deductions and we have paid 13k of deposits since her birthday on 1 Aug 2010. Fortunately, the amount of money that D’s mum and brother had given for our lil’ girl had helped with a sizable chunk of the initial bill.

We went ahead to pay after seeing our lil’ one, this time I paid for it. D was quieter than usual, which usually means he is thinking very hard. I saw the worry lines on D’s face and said that I will check with KK about the requirements and costs if we would to move her to the restructured hospital.

Since the NICU at Kandang Kerbau Hospital (KK) is a shared ward and the babies are tagged to the mums’ chosen class ward on admission, it doesn’t matter whether the baby is in an A1 class (private) or C class (heavily subsidised) as the baby will be treated all the same regardless. The same treatment, medical procedure etc required by the baby will cost differently based on the class. Those in the C-class will have the highest subsidies allocated and on the opposite end of the spectrum, babies in the A1 class would be charged the most. It would be a huge savings for us if our lil’ one is in the C-class ward in KK.

I was given a referral to see my gynae’s ex-colleague at KK but popped before the appointment date. My gynae thought that perhaps it was better for me to get registered at KK so that if I had to give birth prematurely, the costs would be much lower than in the private hospital (TMC). Besides I didn’t expect to have a premature birth when my first wasn’t, although he was born 4 wks early. Hence I decided go back to the same gynae and give birth in TMC again.

So I called KK and spoke to different people on two different days. Some transferred my call to this person and that and re-transferred my call to the department that I had called in the beginning. I had a few questions and needed confirmation before we decide if it was worthwhile for us to transfer our lil’ one.

1. Since we are transferring from a private hospital, will our girl be charged private rates in KK?

Ans: We will be considered A1 and at most B1 class (both private rates). Our PD, Dr Ong at TMC, must liase with the PD at KK so that there is a proper transfer of records before the baby moves to KK. Also it depends on whether there is any bed space at KK and of course, wehther our baby’s condition is stabilised before the transfer.

2. Can we opt for the subsidised C-class?

Ans: Only after means testing is done. Information such as combined income, no. of family members that need to be supported etc will be taken into consideration before KK decides if we could “downgrade” to a cheaper class ward.

But there is no guarantee that we could even be downgraded all the way to C-class. Hence there is also the possibility that we could just stay in the private class ward or maybe at most B2, but either way, we would be at the mercy of KK’s means testing.

D didn’t like this at all and we didn’t think they would do the means testing before the transfer anyway for us to make a wise informed decision. The private room rates at KK (A1 and B1) are already more expensive than the costs incurred each day by our lil’ one at TMC (she is already at Class 3, the most expensive of the 3 NICU rates), so it makes no monetary sense to move her. The savings will only come about if our baby is transferred to the C-class ward at KK.

3. Any other ways to go to the C-class ward?

Ans: The first time I called, the person I spoke to told me that I could send my baby to KK’s A&E department via the ambulance service and we could go to the C-class ward.

I found this strange and asked the Dr Ong if he had heard of this arrangement. His reply: This is called “dumping” and he was surprised that the person at KK actually suggested this. Basically there will not be any proper transfer of medical records or discussion between the PDs in the two hospitals regarding the condition of my baby girl. This would not reflect well on Dr Ong’s reputation.

The second time I called, I spoke to an actual supervisor and she was very patient and took the time to explain. For us to go to C-class ward, again, KK makes the decision, not us the parents.

In KK, the first level is the means testing before decision is made by them on the correct class ward that the parents can downgrade to. The 2nd level is for us to incur a bill of 15k (at the private ward class) before KK downgrades us, but again, it is no guarantee that we would be downgraded all the way to C-class.

Either way, D and I were caught in a major fix. We had the growing bill to pay and we think our lil’ girl will stay in there for more than a month. Of course Dr Ong had first told us in the very beginning that it could be at least 2 months, but at the rate that our baby girl is putting on weight, we think she may stay longer than that.

The NICU at TMC is smaller and the ratio between the nurses and young patients are better I think than KK and more importantly, my lil’ one is already comfortable there. I told D by the time her condition is stabilised and able to be moved, we would also have been downgraded to Class 2B and even 2A in TMC, so perhaps it doesn’t make any difference in the costs if we would to transfer her to KK. Besides I really dread the transfer, too many what-ifs even though KK is near TMC.

So D and I have decided our lil’ girl will stay on in TMC and we know that God is in charge, both over our lil’ one and the costs. It is really testing us and our financial planning, any plans we have made are on hold as we channel our savings to keeping our lil’ girl well.

I worry at times over future costs, perhaps her sight and hearing could be affected cos of the early birth, maybe some other medical issues that aren’t obvious now will surface later on. It isn’t just the current bill we have to pay for, it’s the others that may come our way later on.

Lots of people have tried to assure us that she will be fine. Some have given us examples of preemies who have turned out fine. We do believe that to be true, but we have also seen one who didn’t survive and the parents’ pain and anguish will be on our minds for a long time. It’s a dose of reality that things don’t always turn out the way we want it to. 

D and I know many people are praying for her every day and we take every good news to be a miracle. But I suppose it is so human to worry and fret.  Our lil’ one is way too important right now and that helps us to put things in perspective.

D and I just want her to be home soon, happy, healthy and normal.

15 Aug to 20 Aug 2010 – Days 15 to 20 (One Kilogram Took So Long)

15 Aug: My Feisty Fighter gained more weight and hit the 1 kg mark today.

We realised our emotions take a roller coaster ride whenever we hear our lil’ one lost or gained weight. Even if i is just a few grams, we are happier for the rest of the day.

For the next couple of days, her weight stayed the same and this seemed to be occuring more often. After her initial weight loss in the first 2 and a half weeks, my baby began to gain weight, slowly. On a good day, it would be increments of 20 g, and on other days, it could just be 5 g.

Even with the TPN and the increased in milk amount, my baby’s weight would stay the same on some days. I guess, better that than weight loss.

19 Aug & 20 Aug:
My lil’ one’s finally got passed 1kg and her weight stayed at 1040 g. It is a happy occasion in a way, especially on the 20 Aug. This was also D’s big Four-Oh b’day. And for the first time, our baby opened her eyes for a longer time which made me really happy.

That morning, I told D, over msn, that I hadn’t gotten him any present, but he said I did. I didn’t understand what he meant and he clarified further by saying I had already given him our lil’ girl. 🙂

10 Aug to 14 Aug 2010 – Days 10 to 14 (TPN)

10 Aug:
Our lil’ one started on TPN today. When I arrived at the ward, I wasn’t allowed to go in yet as the nurses were still in the midst of getting the TPN up and running. When I finally got in to see my daughter, she was pretty much doing the usual, sleeping except that instead of the glucose drip that she had, there were two new packets of nutrients for her.

The TPN consisted of 2 packs, a yellow and a black. I am not sure what is the difference between the two packs but the liquid from both would go into her IV and give my baby the extra nutrients she needed to grow. Both packs had to be shielded from the light and even the tubes that led to her IV needed to be shielded with black plastic that the nurses would spend time twisting around the entire length of the IV tubes.

Each session of  TPN will last for 24 h and the next day, another two packs would be delivered to the NICU and the entire procedure would have to be done again.

By then, she was taking about 7 ml of EBM every 3 hours and the PD would slowly increase a ml each day since her gut is still very immature. Too much milk would overload her digestive system and the consequences dire.

Over the phone during one of those days, the PD kinda freaked me out when he told me to ensure that the bottles and equipment that I use to express my milk are to be cleaned and sterilised properly, as he had a preemie who had an infection through the expressed breast milk (EBM). Because of that, I became extremely worried for a couple of days and prayed over each pack of milk that I expressed and stored.

From the 10 to the 13 Aug, my daughter’s weight stayed unchanged at 920 g even with the TPN and additional EBM. I suppose her lil’ body needed time to get used to the extra stuff that was going on inside her. She seemed to me to be using a lot of energy just by breathing, even though she was asleep.

Although her lungs are generally in good shape, being born at such an early gestational age also has its problems. The main issue is apnea and desaturations. This is a fairly common problem with preemies like my daughter, but it still worries us. However this is something that we have to let her outgrow it, since the part of the brain that controls the breathing will only be mature around the 35th week of gestation.

So for now till then, the PD has put her in the incubator with low flow oxygen to ease her breathing and not stress her lungs. She is also on caffeine which is administered to her via her feeding tube as it comes as a syrup. This helps to remind her brain to “stay sharp” and hence controls the breathing part better whenever she is asleep. Much like why I need coffee or even the Koi Bubble Tea at times nowadays cos I’m tired.