28 to 30 Sep 10 – Days 59 to 61 (Nasal Cannula)

28 Sep: 2.07 kg today and taking 25 ml of EBM every 2 hours. She still gets desats particularly after each feed, which means she still has that reflux that disrupts her breathing.

29 Sep: Weight is at 2.085 kg. Milk feed is increased to 26 ml every 2 hours.

Dr EK Ong returned from his conference in Taipei and called for a series of blood tests to check on my lil’ one’s situation. The tests include full blood count (FBC) (particularly to check if she is still anaemic as it is another reason for her breathing issues),  blood gas (check on the carbon dioxide levels in her bloodstream) and the Urea & Electrolytes .

The tests results turn out ok except for the blood gas one. Her CO2 level is still high in her bloodstream as it has been accumulated for some time and it will take awhile for the CO2 to dissipate.

He has also called for a chest X Ray to be done, and hopefully it will be good news.

My aunty sent me a message to say that she managed to speak to Dr Ong early in the morning when he came by to check on our lil’ one. She suggested that perhaps my Feisty Fighter could be taken out of the incubator and onto a cot with the oxygen hood over her head. That will really help cut the daily costs per day into half and stretch our money a little more.

D spoke to Dr Ong later in the afternoon as I wasn’t able to get to my phone when he called earlier. Dr Ong also mentioned he would be putting her in a cot, just like what my aunty suggested. When I heard that, I was looking forward to seeing my lil’ one later in the evening since that new bed arrangement will be more convenient and allow us to talk and touch her more freely.

However when I got to the NICU, she was still in the incubator. Instead of being on a cot, she had something new. A nasal cannula for her to breathe in the good old oxygen.

The NICU nurse told me that my Feisty Fighter fussed and fought when they tried to put in the cannula into her nose. She absolutely hated it, according to the nurse, and she cried big time. By the time I was there, she was sleeping. I guess, all that drama just tire her out and she had to just live with the new apparatus.

There seems to be a lot more babies in the NICU yesterday and today. Some look really small, but on closer look at their info tags, my baby’s birthweight is still the lightest. I can feel their parents’ worries and fears when they come to the ward and sit by their precious child. It feels like just yesterday when I felt that same intense “First Day” experience. But now, it’s almost 60 days, my lil’ one has been in the hospital for close to 2 months already. How time flies, although there were days when time just crawled.

I’m hoping this long tunnel will end sometime soon. I am still waiting to see the tiny pinhead-sized light at the end of the tunnel and that it will get bigger till the light engulfs us as D and I step out of the NICU door, out of TMC and into a sunny day with our baby girl.

30 Sep: Only gained 5 grams and now 2.09 kg.

And still in the incubator. I suppose it’s cos the NICU is very much full-house right now, and Dr Ong wants to make sure our lil’ one doesn’t get unnecessary infections from some of the newcomers.

Our Feisty Fighter has been doing a number of stretches and that turns her whole face red and her breathing quickened. Sometimes her chest doesn’t show any movement, it’s as if she stopped breathing momentarily. When that happens, I will look intently at her monitor and hope that the alarm doesn’t start beeping.

Seems to me that she is more comfortable with her nasal cannula now, although my aunt did tell me that she was very restless the previous night, her first night with it.

Her chest x-ray showed an improvement from the previous one when we first found out she had BPD.  That’s something to be happy about. 🙂

Thank God for little blessings.

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26 & 27 Sep 10 – Days 57 & 58 (Happy 2 Kilos, Lil’ One)

26 Sep: Creeping closer to the 2-kilo mark. Weight today: 1.995 kg and still taking 24 ml of milk every 2 hours.

The relief PD (also goes by the name Dr Ong) actually called me on a Sunday to update me of her progress. That’s really nice of him. He mentioned again that my baby’s breathing is still a problem that only time can heal.

She is officially 35 weeks and 5 days old today and I’m hoping that as she gets closer to her EDD and matures as the weeks go by, that our Feisty Fighter will fight this BPD and her lungs will be good as new.

27 Sep: Finally our baby is 2.01 kg and will be taking 25 ml of milk every 2 hours.

While I was there, Dr Ong (the relief one) came by. Since last Thursday, he has been my “alarm clock” as he would call and update me of my lil’ one’s progress around 8.50 am. It seems to me he would check on her in the morning and again in the evening; not sure if that is a good thing. It could go both ways, either he is a very careful and attentive PD or my lil’ one requires extra attention ‘cos something isn’t quite right.

Ok, I am paranoid.

Anyway, our baby gets more desats after a feed which implies that she still has reflux and her BPD also makes it worse.

I wish life would be easier and things go according to the  nature of things, but again that wouldn’t always be the norm. All of us have something to struggle with, battles to fight whether internal or external, physical or mental. And even when things are going right and looking rosy, we complain, we whine and worse, we compare our good fortune with someone else’s and think ours sucks.

I’m happy with my life, but …

I’m hoping we could all be home as a family of four and my lil’ one will not need the Home Oxygen Therapy for months.

I’m hoping for her BPD to be gone quickly.

I’m hoping for her health to be back to normal and there will not be any other medical issues that will come up later in the near future.

I’m hoping that the hospitalisation bill we are incurring will be manageable.

I’m hoping that when I do return to work, it will be ‘cos I want to work and not ‘cos of the bills we will have to pay.

I’m hoping TJ and his baby sister will be the best of friends and even when they are the worst of enemies, they would forget about their vendetta after a night’s sleep.

I’m hoping the good Lord will not be disappointed in D’s and my faith as we struggle through this time.

23 to 25 Sep 10 – Days 54 to 56 (Closer to 2 kilos)

23 Sep: Our Feisty One is now 1.885kg and drinking 24ml every 2h. She still needs her Blue Tube Of Life with piped in oxygen in the 30-plus percent.

24 Sep: I thought today was Thursday. Guess when you aren’t working or complaining about having to work, you don’t bother about counting down to the end of the workday and time just passes by.

My lil’ one is getting closer to the 2 kg mark and weighed in at 1.9 kg today. Originally this will be the time when we would all be getting ready to have her home, but I guess it is ok. We will just wait for her  lungs to get better, it will be great if her BPD clears up but we will just wait for God’s healing.

25 Sep: 1.95 kg today (50 g increase) and looking so much better. The nurses mentioned that our lil’ one has been wanting to suck but unfortunately I’m unable to nurse her nor give her the bottle ‘cos she is still dependent on oxygen. Hence she is still fed through her feeding tube. Moreover she has a number of medicine, supplements and vitamins to take together with her milk feed, and I am wondering how I could possibly insist on breastfeeding if she has to take all these stuff together with her milk. And not forgetting trying to remember all the different timings for her medications & supplements. 

When that day comes, I will know what to do.

We got a nice surprise from the NICU nurse, Mei Lee. She asked if we were in a rush to leave, and of course we weren’t. And she said that we could carry our baby girl and that was a wonderful time D and I shared with our lil’ one.

She was pretty mild when I carried her, at first she had that suspicious look on her face, raised one eyebrow and probably wondered who was carrying her.

And when D carried her, she whimpered, pursed her lips and cried a lil’. D became the overly protective dad and I supposed that is what will happen in the near future. Our lil’ girl will wrap her fingers around her Papa and he will be at her mercy. 🙂

20 Sep to 22 Sep 10 – Days 51 to 53 (How Difficult Is It To Transfer?)

20 Sep: First weight loss in weeks. 1.805 kg.

My aunt called to tell me that maybe the reason why my lil’ girl lost 5 grams was due to some medication that she had taken to get her to pee. When I told D about that, his immediate reply, “That’s a lot of pee.” 😉

Dr Ong called to tell me that there isn’t any available bed in KK’s NICU, understandably enough since it is a 16-bedder ward and KK will keep the space for their own patients rather than transfer cases. However the KK doc that Dr Ong spoke to said that he will check if the high dependency ward has space and will update me later.

Later when I went to visit my baby at the usual time slot, Dr Ong was also on his way to check on her and he updated me on the KK status. Still no news from them but he would call them the next day. Also he wanted to know if I would consider SGH or NUH if there isn’t any available beds in KK in the end.

I actually never considered SGH or NUH, my mind was just set on KK. But when faced with this possibility, I asked for his opinion, and when he left, I asked the nurses which is a better hospital and later also sought my aunt’s opinion.

Basically the 3 hospitals have the respiratory team and are all the same in terms of professional medical expertise and equipment. But I find both SGH & NUH to be so far away, and frankly, I don’t really like SGH. Something about that hospital that makes me very uncomfortable. I could feel my instinct telling me, “No No No.”

But I still gave Dr Ong the go-ahead to contact SGH & NUH and check if there is availability of bed in their NICU ward.

I’m still hoping for a teeny weeny miracle… that my baby’s lungs will be cleared overnight.

21 Sep: My Feisty Fighter regained some weight and reached 1.815 kg. She still needs the 30-plus percent oxygen and feeding well at 23 ml every 2 hours.

Before this whole BPD came about, Dr Ong had given me something to look forward to based on her weight gain. If not for her BPD, by now, I would be carrying her in my arms every time I visit her and feeding her in the ward. Haiz, it’s kinda hard to know that this problem she is having is something only time can heal. Nothing can be done except to wait for her to outgrow it, which could take weeks or months. It all depends on her and God. Makes me really helpless knowing that I can’t do anything except to pray and wait, wait and pray.

Later in the afternoon, Dr Ong called me while I was almost in the deep sleep zone. I have been really tired and sleep deprived, but after the conversation with him, my mind was in a confused state and I couldn’t sleep anymore.

The main point is there isn’t any available bed in KK’s NICU but there is one at the Children’s ICU (sometimes known as Paediatric ICU or PICU). My lil’ one just met the minimum requirement to be warded in the CICU, she is at least 34 weeks and 1.8 kg.

However both Dr Ong and the KK’s doctor agreed that the CICU isn’t an ideal place for my daugther to be in as the possibility of getting an unnecessary infection is very high given her young age. Moreover the young patients at CICU are those who are very ill, according to Dr Ong, some have brain or open heart surgery, others are recuperating from severe pneumonia.

On hearing “pneumonia”, my heart skipped a beat. That would be the last thing we need. BPD is not fatal, but if the baby who has BPD contracts pneumonia, that will be fatal.

Unfortunately my daughter’s need for constant oxygen doesn’t allow her to be in the KK’s Special Care Unit (SCU, which is a step-down unit from NICU). We can more or less write off KK as our choice of transfer for our lil’ one. As for SGH, we have to wait for confirmation but the chances of getting a bed at its NICU is much higher.

Dr Ong got a nurse to give me the contact number to an officer at SGH’s Business Centre, so that I could find out from them the costs involved in the transfer. The lady I spoke to, though helpful to a certain degree sounded more impatient as the conversation progressed and became the red-tape driven Bureaucrat.

Two things I wanted to find out. One, the procedure to downgrade to a more affordable subsidised class. Two, if we could do the means testing before the physical transfer of our daughter. The latter is more important as we seriously don’t want to move her unnecessarily. I know that both TMC and SGH will ensure her safety and well-being, and S’pore isn’t that large a country. But it still bugs me that she is doing fine and well in TMC and I’m really reluctant to have her in a new environment.

Moreover the reason why we are thinking of the transfer is cos of her new condition, and given that SGH has a respiratory team, it should make more sense for us to give our lil’ one the additional chance at recovering quickly. But if the costs incurred is the same or even more than what we are paying at TMC, it just feels silly that we are still paying private class rates in a restructured hospital, and God knows, how long my lil’ one decides to stay on in the hospital. That will be a lot of money, on top of whatever we have paid so far in TMC.

Anyway that conversation I had with the buereaucrat will be for another blog entry.

22 Sep: 55 grams increase and weighing in at 1.87kg. Milk feed is still 23ml, 2 hourly

When Dr Ong called, I asked him again about how he would go about treating my baby’s BPD and what would be done at the later stage if her lungs don’t get better after she hits 2kg. I understand that it’s not possible to give an exact date as to when her lungs will clear up. But I needed to know that she will not be in the hospital for months.

Again, he reiterated that BPD takes time and he felt perhaps we could wait till our Feisty Fighter reaches 2kg and see if her lungs are better then, given that she is on antibiotics to fight the urea plasma infection and taking Fumicort via the nebuliser.

If her lungs are still not well enough, we will let her continue to gain weight till 2.5kg. Between 2-2.5kg, Dr Ong hopes that enough time has passed for her to grow, mature and for her lungs’ tissue to regenerate. If that still doesn’t work out, we will look into the Home Oxygen Therapy.

Dr Ong suggested that we wait till our baby is 2kg and we could decide on the transfer then. And since he will be away in Taipei for a conference till the following Tuesday, it will give me some time to speak to the admission people and the medical social workers on the possibility to do the means testing (for downgrading to the subsidised wards) before we actually transfer our baby.

Praying for wisdom that we are doing the right thing for our lil’ one and still hoping for a miracle.

19 Sep 10 – Day 50 (Waiting)

19 Sep: 1.81 kg (up 30 grams)

We took TJ to see his lil’ sister again (he saw her yesterday too) in the morning, partly to have him used to the concept of a younger sibling and also to give my mum a break from taking care of him.

My other brother-in-law and his wife also came to the hospital to catch a glimpse of their niece through the glass window. But it’s hard to really see her since she is also in an incubator.

Most of the time, she is sleeping and I wonder if she is losing out on the 13 weeks of being inside me and listening to me in utero. Sometimes I get scared thinking that maybe she doesn’t recognise my voice that much since she was borned so early. Then I will feel guilty about not doing enough to keep her inside me for a few more weeks at least. I guess this will continue to haunt me for a long while.

My aunt text me to say that our lil’ one will not be accepted in KK’s NICU since she is 49 days old. Instead, she will either be transferred to its PICU (Paediatric ICU, also known as Children’s ICU) or the Paediatric Ward, but the latter requires mums to room in. I don’t mind rooming in, but if it is for 3 to 6 months, this will be expensive since we aren’t sure if KK will even downgrade us to a subsidised class ward. Also I can’t imagine being away from TJ for that many months even though it will be good to bond with his sister.

We will see how things pan out in the next few days. Perhaps a miracle will occur and we will not even need to transfer.

18 Sep 10 – Day 49 (Decision Has Been Made)

Weight is 1.78 kg, up 25 grams.

In the initial weeks after her birth, we thought about transferring our lil’ one over to KK but decided against it for a number of reasons.

One, she was way too small, feather-light and fragile.

Two, the NICU in TMC is well equipped and the PD we had asked to look into our case is someone we trust.

Three, we didn’t think there will be much difference in the costs since we would be still be paying the private class rates after the transfer.

Although her weight gain is on track, she now has BPD. This new development has caused us to think harder about transferring her to KK.

One, there is a respiratory medical team in KK but none in TMC. I just found out that there is actually a BPD clinic  (Specialist Clinic P Level 1, Children’s Tower) in KK too. 

According to the nurses at TMC, this team is more equipped than theirs and should our lil’ one requires the home oxygen therapy, the team in KK will be able to provide the necessary training and equipment.

Two, we can’t afford to have our baby stay in TMC for another 3 to 6 months and wait for her to recover from BPD. Maybe she would recover in weeks, but there is also the possibility that she may take longer than 6 months.

We’ve been advised that the costs will be lowered in the long run if our lil’ one is in KK. I’m not sure if that would be the case, but having checked with KK earlier in Aug on the admission charges, we are not too hopeful. We’ve been told to see a social worker in KK or our constituency MP to seek their help in downgrading us from private class ward to a more affordable subsidised ward.

I spoke to Dr Ong in the afternoon when he called to update me of my baby’s condition. At that time, we were in the train on our way home. D signalled me to alight and we stood in one corner while I listened to Dr Ong’s updates. 

He gave me the facts: her weight gain is good, oxygen intake still in the 30-plus percent, desats aren’t too often but still happening and he can’t say for sure how many months she will need to recover from BPD.

And he asked if we had decided on the transfer and after hearing his updates, I made my decision there and then. D left the decision to me while he took care of TJ, who was having fun walking up and down the long flight of steps at Bishan MRT Station.

Dr Ong will start the transfer process on Monday 20 Sep and liase with the doctors in KK. We will have to wait for an available bed at KK’s NICU and for the two doctors to discuss and transfer all the medical reports and test results before any physical transfer could be done.

I hope I’ve made the right decision and yet, I’ m still hoping for a miracle that in the next couple of days, our Feisty Fighter could actually fight this BPD and that her lungs will be cleared before the transfer to KK.

17 Sep 2010 – Day 48 (Difficult Decisions)

1.755 kg today. Up 35 grams.

During the first 3 weeks, we were all fretting over her weight loss before it started to creep upwards. We rejoiced when her weight finally crawled back to her birthweight of 1.07 kg. For awhile I doubted my milk supply and questioned myself… perhaps I didn’t eat enough, maybe I should just eat more fatty stuff.

My aunt, the NICU nurse whom I have been seeking advice from, told me that preemies will take a while to gain weight, between 20-50 grams is fine. Sometimes they don’t, sometimes the weight gain is minimal (like 5 grams) and there maybe times they start to lose weight again. Her PD, Dr Ong, was also concerned about the small increments at first and started giving her the milk fortifiers and MCT so that she will have additional calories and gain weight quicker.

Now on hindsight, I think maybe her weight gain is slower cos of the additional energy she uses up each time she breathes.

So now that she has been doing well in the weight department, we now have another issue to think about. X-ray had shown that her lungs aren’t looking clear and that she still needs the additional oxygen (and as high as 40-something percent) to help her breathe and keep the desats at bay.

Our girl has BPD, a respiratory problem that preemies will develop. Some recover in weeks, while others take months and her PD reckons she will take months to get better. Her PD checked with another doctor for a second opinion and arrived at the same diagnosis. In fact, the well-meaning NICU nurses, who are concerned about our rising hospitalisation costs, also asked for a 2nd opinion for us. Same diagnosis.

Her lungs development and condition were the one thing that we were very worried about when I started having problems prior to giving birth. And when she was born and was taken off the ventilator the next day, we thought perhaps she wouldn’t have any issues with her lungs and being the Feisty Fighter that she is, we would have her home in no time.

And in the subsequent weeks, we were more worried about her weight loss and slow weight gain. Yes, she still needed the low-level oxygen, but it seemed like pretty normal for preemies of her age to require that extra boost.

And when the low-level oxygen was closer to the atmospheric oxygen (21%), we were almost congratulating ourselves.

Unfortunately reality bites and so her need for oxygen increases as she got older. The PD had mentioned that as the baby grows older, the part of the brain that reminds her to breathe will be more mature (fewer episodes of apnea) and desats will slowly disappear. I remember telling D that we will wait and see, take one day at a time.

BPD isn’t fatal, but it can cause other problems like pneumonia which can be fatal for young ones like her. Her PD has been taking good care of her and doing all the things that should be done. We trust his professional medical opinion but he didn’t tell us how many months this BPD will take to resolve. I suppose he can’t quite do so, ‘cos it depends on the kid, but the truth is we can’t afford the private medical care for more than 2 months if this drags on indefinitely.

Her PD has also done a Urea Plasma test and it came back positive. He mentioned that it’s a common bacterial infection and has started her on a course of antibiotics. Also she has to use the neubiliser every day with the medication to ease her airways. I asked if the Urea Plasma thing has caused the BPD and he said it could be, but regardless, the bacteria needs to be treated and eradicated to prevent any further complications.She has to take quite a lot of meds, vitamins, milk fortifiers and MCT.

Anyway, BPD is something that is more crucial at this stage and TMC doesn’t have a respiratory medical team which is what she needs. The nurses, who have been taking care of her, have been very nice to us and said it’s better for our baby to go to KK instead as the team there will be able to do more for her. They quoted some examples of previous young patients who had similar issues and were transferred to KK. Moreover if our lil’ one requires the home oxygen therapy after she is discharged, KK will have the resources and personnel to train us parents.

I spoke to D about this and he said we will wait till she reaches 2 kg. Perhaps, like what Dr Ong said, one of his patients was like our lil one, who didn’t have any lung issues in the beginning but developed BPD later on. He had thought that the baby would need a few months to recover but somehow, the baby recovered from BPD when the baby’s weight reached 2 kg.

I suppose deep inside us, we really dread the physical transfer of our baby. It’s a scary thought, of things that could go wrong on the road and moving to a new environment and new set of nurses to care for her. We have been so blessed with the nice staff at TMC and we are already so used to the way things work there.

But I suppose these are secondary. The main consideration is what’s best for her, and we need a proper team to help her recover.