31 Oct 2010 – All 91 NICU Days

I haven’t updated this blog in a long time for many things had happened along the way. And now that there is a slight window of opportunity, I guess I should really put it down in words before my memory fails me again.

When we knew that my little one would be discharged at the end of October, there was much preparation to be done. Going to the hospital to feed her and learn from the nurses there, getting the necessary equipment like the O2 concentrator and just prepping up the apartment for the new arrival, except it was three months later.

Our helper had requested to come to S’pore on the 7 November (a couple of weeks later than expected) as she wanted to support her daughter in a competition. As a mum, I reckoned she should go and be there for her child as she wouldn’t be back home for at least 2 years. Hence my mum stepped in (thank God for that) to help me with TJ and stayed over for the week.

Unfortunately life has a habit of not going according to plan and my helper was delayed again and again, for up to a week plus. But that will be for another entry.

Dr Ong felt it would be wise to have me room in with my baby for 2 nights before the official discharge on the 31 October. I had a hard time saying bye to my son, since I have never liked being away from him for too long. Again, having my parents living within walking distance from us is a blessing, and I could just walk TJ to my mum’s place and be assured that he would be in good hands. Except I think my boy actually runs the place upside down inside out and “controls” his grandparents, who willingly allow for that to happen.

For this room-in exercise, the packing was a bit of a headache. At this time, my helper wasn’t around and thankfully, TJ was a good boy and didn’t interrupt me too frequently. The essentials were the bottle steriliser, my Medela breast pumps, the little basin that I use to keep the bottles in one place while I wash them in the sink and the small bottle of baby bottle washing liquid and everything else that was required by the Feisty Fighter. The room, which was just opposite the NICU ward, was comfortable and even though it’s a 2-bedded ward, I had the whole room to myself.

I was early that day and the NICU nurses told me to go to the room to rest instead since they couldn’t “hand over” my baby to the ward nurses till after 2pm. I actually went to meet D for lunch before returning to the hospital, napped a little before the nurses wheeled her into the room.

Besides learning to take care of a preemie in a controlled medical environment prior to discharge, I took these 2 days to try out the oxygen concentrator and the pulse oximeter on my own. Before this, these equipment had already been used for at least a week by the NICU nurses, but I just want to make sure that I know how to use these things properly.

 To a certain extent, I still had loads of help since the nurses were always around to check on my baby, warmed up the EBM before giving it to me just before each feed. I can’t say that I could rest since the whole objective for this room-in was for me to be “solely” in charge of my lil’ one, so I did the night feeds and comfort the Feisty Fighter when she started bawling for one reason or another. Still, I must add that during those 2 nights stay, I was very well fed. 😉

My aunt, who does the night shifts as a NICU nurse at TMC, happened to be on duty during those nights that I was in the hospital with my baby. She would pop by during the late night feeds and keep me company, so that I wouldn’t fall asleep while feeding my baby. She has been a great help during the 91 days when my lil’ one was warded, in fact, my aunt was the one who wheeled my girl in the Globetrotter and prepped her in NICU shortly after she was born. I suppose there is a certain affinity between us now, somewhat.

There are these two colleagues of my aunt’s who do nights together with her and I had never gotten to meet them, and I was glad to have during those late night feeds. They encouraged me and told me that I would do just fine.

I am immensely grateful to all these angels who had been taking care of my baby girl from birth till now. All 91 days. And as much as I am so glad that I can finally have her home, 24/7, it does feel quite daunting since she has unique needs that are different from full-term babies. But Leia Kate Tan is mine, and I’m just glad she isn’t anyone else’s.

There must be a reason why she is here, even though she had a stormy beginning and will have quite a rough journey ahead. But God has been most gracious to us and He must have major plans for this little girl. I don’t know what He has in store for her, for us, but I do know that we aren’t alone on this ride of our lifetime. This adventure, for this family of four, has just begun.

18 to 22 Oct 10 – Days 79 to 83 (Relearn & Practise)

18 Oct: 2.61 kg

Every day (except for Sunday), Dr Ong will call and update me of my baby’s condition. Nowadays, I try to see that even the same old news is better than no news really, cos at least I know that my lil’ one is ok and not having other issues. It’s like one step forward, two steps back that would be really depressing.

At least she is constant, that’s why I like to find out about her weight each day. It makes me feel better knowing that she is taking my EBM well and putting on weight makes me happier.

Dr Ong also mentioned that I should be ready to go to the hospital more often to learn how to feed my lil’ one, especially spotting her little quirks during feeds and her colour changes when she is getting desats. I’m finally able to do something normal too.

Every little good news is a miracle.

19 Oct: 2.615 kg. My first try on feeding the Feisty Fighter.

When we first brought TJ home, I had tried direct latch on but it didn’t seem to work for both of us. He was a crying and fussy kid and I was crying in pain cos of incorrect latch on position. After two weeks, we came to a compromise. I expressed mostly, got him to latch on some of the feeds but in the end he had his breastmilk in a bottle. He, too, took forever to finish his milk (as long as 45 minutes) ‘cos he was so sleepy and we had to wake him up often and that dragged on the feeding time.

So with our lil’ one, we were told she needed more time as it takes a lot of effort and energy for her to suck, swallow and breathe ‘cos of her BPD. She will gag and choke ‘cos she would forget to do one of the steps or fall asleep. And when she can’t catch up with her breathing, desats set in and she turns grey. And I thought feeding TJ was a nightmare…

My “training” started at 4pm, with learning to use the nebuliser (Ventolin & Pulmicort, 4 times a day) and after that, the bottle. Before I put the mask over her nose & mouth, the nurse peeled off the surgical tape that held her cannula and my baby hated to have her skin dragged. And when the mask was over her face, the Feisty one stopped crying but had her eyes opened wide, seemingly wondering who the newbie was. According to the nurse, my lil’ one usually would close her eyes when getting the neb.

She has been back on the 3 hourly routine and she has been bottle-fed on alternate feeds. That is, she gets her milk through her feeding tube for one feed and the bottle for the next. Guess Dr Ong just want to minimise changes for her and introduces “new” things slowly. The nurses are able to complete the feeds within 30 minutes and I suppose that would be my “time to beat”.

And to prevent her reflux and milk from getting into her lungs, the nurses will add “Thick and Easy” to thicken her milk. This helps to keep her milk down in her gut and lessens the chances of her choking on the thin EBM.

So for this 4pm feed, my first time with her, she took 45 minutes to finish. In between, my lil’ one needed a number of rests, for her to catch her breaths and also to get her SPO2 back up again when she desats to below 80. I felt secured knowing the nurse was by my side helping me, but also knew that I would have to do this independently. Hence I tried to pay attention to everything, her colour changes (“dusky” is scary), pre-empt her gags & chokes when she starts to shake her head or push her head backwards, and learn to “entice” her to suck when she stops by stroking her chin and pushing/pulling the bottle upwards against her palate to stimulate the sucking motion.

It was quite an information overload, and I was so tired out at the end of this feeding session.

20 Oct: 2.67 kg

Fed her again at 4pm. And again, it took about 45 minutes. She gagged more often and fussed ‘cos she pooped during the feed.

21 Oct: 2.64 kg

Chubbs 21 Oct

My baby’s feeding tube apparently slipped out last night, not sure how that happened but since it is out, Dr Ong decided to introduce the bottle to all feeds, seeing that she had been doing well with the alternate bottle/feeding tube milk feeds.

Today, I went to the hospital twice to get more time with my lil’ girl, and fed her at 10am and 4pm.

At her 10 am feed, she gets Ferrum drops (to increase her iron level) in her milk and it turns her creamy white milk to orange. It is more difficult to feed her at this time, I believe it’s cos of the Ferrum. I’ve been wanting to taste it, wondering if it tastes like liver.

22 Oct: 2.73 kg

Doesn't look to chubbs here

It is harder to coordinate the timings of both my kids and both of them are equally important. I would love to go down more often to feed my baby girl, but at the same time, I have to spend time with my firstborn.

I supposed if she isn’t a preemie, it could be easier since I don’t have to factor in the travelling time to and from the hospital, taking TJ to my mum’s if I go to the hospital in the mornings etc.

And the re-learning process continues.

13 to 17 Oct 10 – Days 74 to 78 (Two Point Five)

13 Oct: Weight is 2.425 kg

She has been getting the bottle once every shift, i.e. three times in the 24 hour cycle. For a start… to see if her lungs and her lil’ body can take it or not. Her BPD makes it harder for her to coordinate breathing, sucking and swallowing, hence she gets breathless and tires out faster. For the rest of the feeds, she will be tube-fed.

14 Oct:  2.47 kg and milk amount has been increased to 45 ml every 3 hours.

15 Oct: Our Feisty Fighter is 2.51 kg today.

The original plan was to have our lil’ one back home with us when she reaches 2.5 kg, but due to her BPD and her need for O2, Dr Ong doesn’t think she is ready to be discharged. Well actually, I think he feels we aren’t ready to take care of her, given that she has certain needs that are different from a full-term baby.

For one, she has a number of medication and supplements that she has to take at different hours of the day. The second thing is her O2 requirement which is currently about 30-35% but she needs about 40-60% oxygen during her bottle feeds. And the last thing is her milk intake.

For the longest time, she has been tube-fed, but this week, Dr Ong has decided to first try bottle feeds once every shift and today, he has gotten the nurses to alternate between the bottle and the tube. However he did mention that this will also depends on our lil’ one, if she gets too tired out after a couple of bottle feeds, the nurses will revert to giving her milk via the tube instead to give her time to rest in between.

These are the lil’ things that we take for granted.

16 Oct: 2.53 kg today.

Ever since she started drinking from the bottle more often, her weight gain has kinda slowed down a little, but it’s apparently normal. Each day, I would ask the nurses what her weight is, it has just become a habit. The nurses would tell me that her weight is no longer an issue, it’s her feeds and her breathing. Both go hand in hand, and they have told me she takes abt 25 minutes to finish the bottle and requires higher O2 levels.

D & I attended the Infant First Aid (including CPR) course conducted by TMC ParentCraft in the morning and we are hoping we will not use the skills learnt.

I am appreciative of the care and concern the nurses have showered on us, and we are grateful that they had tried to help us by getting a second opinion and suggested ways to help us save costs during the two times when we were mulling over moving our baby to KK. I don’t think things happen by accident and in the grand scheme of things, I don’t understand why right now, but I know that God has put these nurses in the right places and at the right time.

I’ve enjoyed their friendship, in a professional sense, and I will make sure my lil’ one knows about these angels who had taken care of her in the first 78 days of her life, and counting.

17 Oct: 2.57 kg today.

TJ came to see his sister again. Somehow he knows that when both his papa and mama are at home, it’s the time of the week to visit his sister at the hospital. He would tell me about it during breakfast and I have a sneaky feeling that he enjoys this ‘cos he gets to take the bus, train and cab.

My Feisty Fighter feels a bit heavier in my arms today and she opened her eyes briefly to see who is carrying her before dropping off to La La Land. I suppose she knows she is safe and yes, my lil’ one, you take your time to recover. We aren’t going anywhere but here with you.

The Oxygen Concentrators

Quick summary of what I had found out. I had emailed the details and specs to Dr Ong for his opinion and will decide on the “right” unit to rent.

One of them asked if I want to purchase a new set and I told the sales guy that I would like my daugther to be off it asap so that she can get on with a normal life.

1. Company: Lifeline
O2 Concentrator: Lifeline NewLife Elite With Nebuliser Option
5 litres per minute (lpm) (Made In USA)

 
If Re-cycled unit is rented:
Minimum Payable First Month rental rate at S$150.00 nett,
INCLUDES: Nasal Cannula 1pc, Humidifier 1pc
Transport (OFFICE HOUR 9AM-5PM additional S$40.00)additional for after office hours, Sat, Sun and PH. Express Service delivery within 2 hrs upon confirmation additional S$40.00
Thereafter at Rental is at S$5/day nett
Advance payment 1 month S$150.00, prorated for 2nd month onwards.
 
If A New Unit is rented:
Minimum Payable First month at S$ 315.00 nett,
INCLUDES: Nasal Cannula 1pc, Humidifier 1pc
Delivery cost & subsequent rental rates as above

2. Company: Rehab Mart
O2 Concentrator: Krober O2 Oxygen Concentrator 
(Made In Germany)

Monthly Rental Rate at $180
Setup Fee $120
2-Way Transport $60
No pro-rated rental for subsequent months
Refundable Deposit ($700)

3. Company: Sonray
O2 Concentrator: HG5S  (Made In China)
First Month Rental rate + Delivery Charges+Installation+Cannula & Humidifier Bottle at $180
Subsequent Rental is at S$5/day nett

I like gadgets, but this is one that I would rather not get. Hope the Feisty Fighter will not need it for too long.

12 Oct 10 – Day 73 (Breakdown)

My Feisty Fighter gained 40 grams today and is now 2.42 kg.

The 73rd day… and I broke down for the 3rd time.

I really don’t like to feel weak but this is one day when the roller coaster that I have been on since 16 Jul has been spinning way too much for me to handle.

It’s just the sum of many little things that seemed to look so large and I dunno if it is just self-pity or loss of confidence in my ability as a mum.

The morning started fine and I had to make a few calls.

I called IMSE and finally spoke to the person i/c to find out about its Infant CPR course. Except that theirs isn’t strictly just for infants but include adults too. The course is called BCLS Certification Course and it is a full day 8 hour course on a weekday. Unfortunately D and I wouldn’t be able to to this course, even though it is a professional course, with theory and practical assessment and a certificate at the end of it. D wouldn’t be able to take leave to attend this full day 8 am – 5.30pm course which is only conducted during the weekdays. And I can’t go without my 3-hourly breastmilk pumping session.

So the next alternative would be to call TMC Parentcraft to find out if there will be an Infant CPR course soon. It is more expensive than the BCLS course ($160.50 pax) for a half day course (9.30-1pm) this coming Saturday. No assessment, no certification and it’s a basically a First Aid course specifically on infants & children-related issues.

Later the sales manager from Lifeline called to reassure me that the O2 Concentrator  his company provides for my baby’s Home Oxygen Therapy is able to supply the requirements as specified by her PD. This is the company that the NICU nurses had checked on my behalf, but I had also googled on a couple other medical supplies companies that rent out these concentrators and had emailed them the night before. I wanted to compare the rental rates and check out what else is in this O2 Concentrator market before making a wise decision.

I had thought it would be easy to just shop around and make the decision, but actually it wasn’t. There are these technical terms, flow rate, O2 Concentrations that got into me, and I wasn’t sure if the sales people were trying to take advantage of my minimal knowledge  in this area or that I wasn’t asking the correct questions to know more about their concentrators.

And one of the NICU nurses reminded me to find out if the companies rent out portable O2 cylinders ‘cos I would need to hook one up for my Feisty Fighter when I take her out for her PD checkups.

Reading the specification sheets didn’t really help me, and I just felt like crying thinking that I can’t even do a simple order. 

How could I take care of my baby when she is home and on the required O2? Can I even handle all that flow rate and decide on the appropriate O2 concentrations she need?  What if  I had decided on the wrong concentrator and caused problems for her? Do I rent a new concentrator or a recycled one? Does it even matter since the nasal cannula she would be using would be a new one. What if her BPD gets worse when she is home? What if the decisions I make on the O2 concentrations cause her ROP to get from Stage 1 to the retina detachment Stage 3? What if there isn’t enough O2 in her portable Oxygen cylinder while on the way to the PD and she turns blue?

I’ve always been ok with technical stuff, but renting the O2 Concentrator really scares me. Bascially I just don’t want to mess up for my lil’ one.

In the afternoon, I was impatient towards TJ and felt lousy as a mum.

And later in the evening when I visit her, just like I have been doing for the last 72 days, the nurses on duty told me that she can only finish half her milk feed via the bottle and that feeding her would be a problem for me when she is home. Dr Ong had told me earlier in the day that my baby would need to be bottle-fed and finish at least 35 ml (her current milk feed is 43 ml every 3 hours) before she can be discharged. By having her solely bottle fed instead of leaving her feeding tube in her gut, we would have one less major thing to consider when we have her home.

Then I thought maybe she is better off in the hospital than to be home. But the hospitalisation bill has been growing each day and it is adding to our stress level too.

And when I see her as she lay in her cot, looking at me before falling asleep and while she slept, the sides of her mouth pulled back into a smile, I love her and just want her home to be with us.

Later at night, I broke down before D and felt much better after letting it all out. Tomorrow will be a better day.

8 to 11 Oct 10 – Days 69 to 72 (Bottle Feeds)

8 Oct: Weight gained at 2.335 kg.

Dr Ong intends to lengthen her milk feeds from every 2 hourly to 3 hourly, since she has been putting on weight.

Our lil’ one has been given the bottle once per shift (there are 3 shifts at TMC NICU) for a start. The nurses have been telling me that my Feisty Fighter has been showing the sucking reflex and has been doing a great job sucking on the teat/pacifier. According to Dr Ong, “She has been sucking ferociously on the pacifier.”

Why do I have this image of my baby girl gnawing and tearing into the teat/pacifier? 😉 So not ladylike.

However her BPD does take a toll on her feed and she can’t finish the entire amount. She becomes breathless and the nurses will have to turn up the O2 amount to help her out.  It’s really hard for her to coordinate  breathing, sucking and swallowing. She can at most finish half the milk feed and the rest has to be fed via her feeding tube. My poor girl and it’s amother thing I can’t help her with.

Argh, how difficult that is for a mum. Not being able to help your child and make things better.

9 Oct: Weight gained at 2.35 kg. Milk feed is between 33-35 ml every 3 hours.

However she can only drink about 20 ml from the bottle and take the rest via her feeding tube.

Dr Ong says she takes the bottle well but it is not possible for her to finish the bottle as she becomes too tired out.

10 Oct: Weight dropped back down to 2.335 kg.

My aunty says it’s cos of the 3 hourly feeding that my baby girl is now on. Told me not to be worried about it since her total intake, being on the new feeding routine, is 274 ml compared to the previous 336 ml of milk (2 hourly).

That means she is supposed to have 34.25 ml of milk every 3 hour and not 28 ml of milk every 2 hour.

11 Oct: Weight went up today to 2.38 kg.

Guess my baby girl has kinda gotten used to the 3 hourly routine.

I’ve been told to attend an Infant CPR course in preparation for my baby’s homecoming. I did the adult and child CPR course in HK when I was doing my Rescue Diver course, but seriously, at that time, I didn’t really take the course that seriously.

But now that I am a mum of a preemie, it is an important course to take and I hope to God that I will not need to use the skill. At all.

TMC ParentCraft conducts the Infant CPR course and my aunt also gave me the contact numbers to SGH Institute of Medical Simulation and Education (IMSE). Apparently her colleague had suggested that D and I should take the CPR course at IMSE instead of TMC ParentCraft. And from the looks of its website, it sounds like the CPR course is more in depth and professional.

I couldn’t get through to IMSE when I called a few times and will try again tomorrow.

7 Oct 10 – Day 68 (Retinopathy of Prematurity)

As a mum of an almost 28 weeker preemie who is still in the hospital, I am buffeted by all kinds of emotions depending on my baby’s condition.

On most days, I am ok. Not super duper crazy happy, but calm and zen enough. But some days suck the life out of me, especially after receiving updates from the good Doc or hearing from the nurses that my lil’ one isn’t doing as well. Those days, I’m just surviving. But thank God for TJ, who distracts me from my fears and worries and makes me laugh a little.

I know that as a preemie born less than 30 weeks, she will face some medical issues. I had hoped and prayed that maybe, just maybe, she will beat those odds and be an outlier instead of the “preemie norm”.

My attitude towards facing problems is to research on the issue and get as much information as possible, so that I can understand and face it better. So I’ve googled and read up on the possible medical issues  that my baby girl may face:

  • Anemia
  • Apnea
  • Bradycardia
  • Bronchopulmonary Dysplasia (BPD)
  • Hydrocephalus
  • Intraventricular Hemorrhage (IVH)
  • Jaundice
  • Necrotizing Enterocolitis (NEC)
  • Patent Ductus Arteriosus (PDA)
  • Periventricular Leukomalacia (PVL)
  • Respiratory Distress Syndrome (RDS)
  • Retinopathy of Prematurity (ROP)
  • Sepsis
  • Transient Tachypnea of the Newborn (TTN)
  • Besides her lungs, I had been worried that she may have problems with her brain, heart etc. Her BPD still hasn’t cleared up, and although I am still hoping that it will, the 2nd, 3rd, 50th opinions I have received had told me otherwise. Whether it clears up or not depends on her, if God is willing, a few weeks, a few months. But the good news is that BPD should clear up and isn’t dangerous. The only thing we need to be cautious of is infection, especially to the lungs, which together with BPD would be fatal.

    Dr Ong had arranged for an ophthalmologist to check on my baby’s eyes now that she has turned 36 weeks old. This is one of the many tests that she has to undergo since birth and another fear to face.

    The prognosis is that she has Stage 1 of Retinopathy Of Prematurity (ROP). (Detailed but simple to read information here). She will need another checkup in 2 weeks’ time and hopefully the abnormal growth of the retinal vessels will have stopped and rectified itself.

    There is the possibility that everything will be ok and her sight will be ok, or she may just need glasses at an early age. However if this abnormal growth continues and her ROP progresses to Stage 3, then my baby will need to undergo a laser surgery to burn off those abnormal blood vessels and prevent her retina detaching from her eye. And even then, the laser surgery may not totally stem these blood vessels and she could be blind.

    I know I shouldn’t think too far and get myself all too worried. But nowadays, the worst case scenario seems to fall onto my path. Somehow.

    Oh and her weight is 2.29 kg today.