Archive for August, 2011

Sophie’s birth

It’s a little calmer since the day we brought Sophie home from the hospital. We’ve sort of settled into a routine. She’s feeding every 2.5 – 3 hours or so, giving us a little more time in between feeds to do other things, like breathe and eat. It’s tiring, but very very rewarding. 🙂

I wrote about the natural caesarean process before, and how the wife’s midwife was one of the pioneers of the method. Basically it involves the parents from the start, and they can actually see the moment their baby enters the world, like they would a natural birth.



As it’s effectively an operation, we needed to get ready. The wife had to get into her glamorous outfit and I needed to get into my even more glamorous outfit. The wife was a little nervous, but excited at the same time.


Jenny (the wife’s midwife) managed to get her in as one of the first non-emergency c-sections of the day, so we were in the operating theatre just before 9am. The wife had the obligatory needle inserted into her hand for drips and stuff (cue much wincing from the wife) and we were all set for the epidural procedure.


The epidural was much like the intrathecal jabs I used to get weekly, but this took much longer. The lady doing it was a consultant anaesthetist, and she had 2 students in the room so she was lecturing and doing the procedure at the same time. Needless to say the wife was very nervous about having a needle and tube being stuck into her back, but the procedure was over in less than 10 minutes. To her it felt like forever! 



The caeserean didn’t take all that long. A screen was put up between us and the ‘business end’ and the surgeons went to work. Before we knew it, the screen lowered and we were handed a screaming, squirming, pink bundle of joy! We have the video of her birth, but be warned, there’s blood!


That’s me, trying to cut the cord while trying to avoid cutting things like fingers and legs etc.


2.950kg was her birth weight. And at 38 weeks 5 days! She would probably exceed 3kg if she went to full term. Whoever said that she was a small baby was quite mistaken.


All the pictures I seem to have of her in the first days are of her screaming! And she does have a loud voice.


She has massive feet as well, as we know from the 4D scans we had earlier. 😀 Shape of the feet like Daddy’s I reckon.


After all that, we have our little baby girl. Sophie Colette Wong, born 8 August 2011. 🙂 Welcome to our home Sophie darling. 

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Sophie’s world – 14 Aug 2011

Books, internet, videos, advice from parents and friends, all went out the window.

We brought Sophie home on Wednesday 10 August. And all hell broke loose. The combination of a cranky baby, sore mother and a clueless father meant loads of mess, running around, harried looks and stress.

Joking aside, it’s good to have her home. 🙂 It was very very intense for a few days but we’re glad she’s home and she’s settling in, slowly but surely.

It hasn’t been easy though. After Sophie was born, we were ragged trying to figure out what she wanted; if she was hungry, needed a change, needed a cuddle, cold, warm, etc. So we didn’t get much sleep for the first 48 hours or so. After that we settled into a modified routine suggested by the Contented Little Baby book by Gina Ford. It sort of worked, and at least we knew when it’s best to change her nappy (even if she didn’t use it) or for the wife to express.

So Sophie’s day typically looks like this:

7:00 – Wake up. Actually we’re awake much earlier as Sophie usually needs a change or feed before this. And we were probably not asleep in the first place so this is just a time for the day to begin.

8:00 – Feeding frenzy 1. The wife usually feeds Sophie while I panic. Breast milk usually takes a few days to come in post delivery, and we need to make formula to top up her feeds. It’s Daddy’s job obviously, but try doing it at 2am while suffering from a lack of sleep, while cursing the many tiny fiddly parts that come in today’s modern anti-colic bottles. 

9:00 – 10:00 – Kick time. By all reckoning, she should be awake at this time. We usually put her on the play gym and let her kick about while we go about doing some essential chores. The only problem is that every time get try to get her on the gym, she falls asleep! 

10:00 – 11:00 – Feeding frenzy 2. In most cases she would have settled down by now. The wife feeds her for a second time while I, if I am organised, will have had the top up formula ready and waiting. The thing is that we’re normally not that organised and Sophie will be waiting for her top up to cool down while Daddy curses modern technology that can get something cold to be hot but not get something hot to be cold.

11:00 – 12:00 – Bath time. Or should I say, scream time. Sophie hates taking her bath and will scream down the house. “It’s like going to the spa, honey,” the wife will say. One hopes that she will dislike her baths less in the weeks to come, or at least not try to destroy any living thing within hearing range every time she has a bath.

12:00 – 14:00 – Nap time. A little lull from the morning of madness while Mom and Dad have their lunch and finish some chores that would have piled up over the morning (and the night before). Inevitably Sophie will need changing and settling but normally, this is a time where we can sometimes take a nap.

14:00 – 15:00 – Feeding Frenzy 3. If we’ve not woken her up yet for her feed, she will let us know. We are usually more organised this time round, and will either have prepared Sophie’s top up in advance or the wife would have expressed some breast milk. So all systems are OK here.

15:00 – 17:00 – Kick time. Sophie either goes on the play gym or in the cot for her kick time. Most of the time she falls asleep due to the mild sedative we put in her milk having just being fed. We go about preparing dinner while she kicks, naps and generally looks around.

17:00 – 18:00 – Top and tail. We give Sophie a quick wipe down before giving her another feed. For some reason she hates this too. Yet more trashing and screaming. We’re thankful that her room is sort of away from all our neighbours so they probably don’t hear that much (or so we think).

18:00 – 20:00 – Dinner. For Mom and Dad. And shower. And some chores. And maybe some TV and couple time. But that doesn’t last for long.

20:00 – 23:00 – Feeding Frenzy 4. It’s quite weird how the book I mentioned above recommends that ‘the baby should be fed in a darkened room, and without eye contact.’ This isn’t a large person we’re dealing with, but someone tiny. Looking anywhere near the place where you’re supposed to give her sustenance will result in eye contact. And darkened room? I think we need some light to see what we’re doing. We may just end up trying to feed Sophie through her nose! Or ear.

23:00 – 07:00 – Sleep, feed, poop, pee. That sort of sums up our night. Some babies go about 2 hours between (that’s from the START of the feed). Sophie’s getting up to 3ish hours between feeds so it gives us a chance to get more sleep. But that doesn’t account for the many bleary eyed nappy changes during the night.

Suffice to say our world has changed significantly since her arrival. And it’s a good change. It’s a massive adjustment but every time we look at her, it’s all worth it. 🙂 

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Transplant update – 12 Aug 2011

Well, it’s been an eventful few days, that’s for sure. We welcomed our beautiful baby girl into our little family and brought her home. She’s got a mega cry that’s for sure. I reckon she’ll be a world famous alto/soprano in the future. She’ll bring down Albert Hall with her voice. Literally.

Anyway, baby aside, I’ve finally completed my pre-transplant workup. I’ve also been given loads of information, and been briefed on the process and procedure (and risks) of the transplant. It’s something we know about, but having someone else other than my consultant explain it to me really rams it home.

The actual transplant itself takes place on what they call Day 0 (zero). Everything before that is given a ‘-‘ (minus) and everything after that a ‘+’ (plus). The plan is to admit me on 1 Sept and for conditioning to start on 2 Sept (day -7). Chemotherapy conditioning will last 3 days. This will done with drugs that I’ve never had before, and the drugs used will wipe out my bone marrow and prevent the onset of GvHD (Graft vs. Host Disease) when the stem cells are infused. Side effects will be the same as the other chemotherapy treatments, except it will be intensified due to the doses involved.

TBI (Total Body Irradiation) will start on day – 4, and will take place over 4 days. It was quite funny having 2 radiologists explaining the basics of Physics and Radiation to me (not knowing that I had some knowledge of Physics) but the basics of it really is very similar to an X-Ray, but instead of a focus (e.g. on the chest or legs) it will be the whole body. The energy involved is also significantly higher, about 1000 x stronger in some cases.

The combination of chemotherapy and TBI will further exaggerate the effects of the treatment, so any sickness, nausea, hair loss, mouth sores, etc will be intensified. They have various methods of helping patients manage the symptoms, but generally it’s not very pleasant.

The stem cells are infused on Day 0, or in my case, Friday 9th Sept if everything goes well. Very very small doses of MTX are also given post infusion, again to prevent the onset of GvHD.  

Most patients feel relatively OK up until Day 0 or +1, when their blood counts finally start falling from the combined effects of the chemotherapy and TBI treatment. This is what the doctors here call the critical phase and it usually lasts 5 – 10 days post Day 0, and is the time when patients are completely defenceless against infections or bugs of any kind. Patients have no white blood cells at all and the new stem cells haven’t had the chance to find a home and nest, so it’s a particularly difficult time. It’s also common to get an infection during this period, but it’s incredibly rare to get a serious infection that requires a trip to the ICU.

After the stem cells have nested and multiplied, patients generally feel better after Day +14 or so. The appetite will return, counts start to go up and they generally start feeling better. They usually return home after 4 weeks or so but some stay for longer.

Well, it’s a lot to take in. I spent 6 hours in the hospital listening to people explaining how they were going to poison, irradiate, destroy my marrow and generally make me sicker than when I went in. Not something to look forward to, but if it’s something I need to do to get better, I will definitely do it.

For my wife, my little Sophie and my family. 🙂 

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Introducing..

The latest addition to the Wong Family. 🙂


Born 8 August 2011 at 9:59 am at Queen Charlotte and Chelsea Hospital, Hammersmith, London. She weighed 2.950kg at birth and has a huge huge cry. 🙂

Both mother and baby are doing very well. Baby has a voracious appetite and wants to keep feeding. We both can’t figure out which bits of us she has but I’m sure we’ll find out later on. Stay tuned for more pics.

Happy days! 

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And we’re off!

All our bags are packed and we’re ready to go. Not long now till we welcome another member to our little family. 🙂

A special thanks to everyone who’s given us the strength and support al throughout these months, especially:

  • My parents & auntie (couldn’t have done it without you)
  • My siblings, your support was crucial
  • My extended family (uncles, aunties, cousins, etc)
  • Patty, Bola and Anthony
  • Wen, David and Alex (you lot are awesome!)
  • Wen’s parents
  • Brian’s parents (sorry, I can’t remember your names and the wife always refers to you as Brian’s parents)
  • Karin, Shay, Matteo and Bianca 🙂
  • All our friends near and far
I’m sorry if I’ve forgotten anyone on this list. Just know what you’ve helped us through a worrisome but strangely happy time.
Stay tuned for pics. 

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We are taken care of

It’s quite funny how things have progressed to where they are now. I still remember the feeling we got when we were sitting in the Catherine Lewis centre on Christmas Eve 2010, feeling like our whole world has just collapsed. Now 8 months on, and we’re a lot more positive, not just because things are looking significantly more optimistic for the future, but also knowing at the back of our minds that we ARE taken care of.

I’ve previously written about how a string of seemingly unrelated events have taken us to this point. And now, thinking about things again, it ‘s quite uncanny how some things that have happened, actually happened in the first place.

Treatment

Being in the catchment of one of the best Haematology centres in London is a massive blessing. Having been put in a specialist transplant and Leukemia ward is a second blessing. Having such kind and caring nurses taking care of me throughout is another blessing. Having a consultant that takes the time to answer all our questions (believe me, we have plenty) in a non-British (read no candy coating, beating around the bush and going around the world) manner is another blessing.

And just as we were about to give up hope, we were told that I had a matching donor for a stem cell transplant! This is the best news any one could hope for! Plus the timings could not have worked out better for the baby. It’s awesome! 

Pregnancy

It’s been tough for the wife to go through pregnancy by herself when I was warded for the first few months of the year. But somehow, she was assigned to one-on-one care with one of the best and most experienced midwifes in London. She was one of the pioneers of the natural C-Section, and set up a foundation to promote the benefits of natural and pain-relief free childbirth. She even wrote a book!

Her consultant obstetrician is a specialist in fetal care and medicine, so is really an expert in complicated childbirths. Not that the wife had a complicated childbirth, but it felt safe that he was an expert in that field.

Baby

Really, what can I say about the baby, other than the fact that she’s brought so much joy and hope in a time of worry and darkness. Over the last 9 months or so she’s been the strongest of us all, having been through my condition since December 2010, all the dramas associated with it, all the wife’s pregnancy-related dramas, while constantly reassuring us that she was there with her kicks and turns. Sometimes the wife gets worried that the baby isn’t moving around much, and she gets a massive KICK as if saying, “I’m still here!”.

Both the wife and I get the feeling that, yes, although it has been a pretty full-on year, we have had plenty of help. We’ve had wonderful friends and family that have helped us without thinking or questioning. We’ve had extraordinarily good breaks leading up to this point. It’s as if all these things were put in our path to help us along this road. I believe it’s God telling us that nothing is going to break up this family unit that he’s created.

“God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.” (1 Corinthians, 10:13).

We’re not sure what the future holds or how we will cope once the little one is here, but one thing’s for sure, we are truly blessed. 🙂 And with God’s grace we will face the future together. 

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Hospital bag

It’s funny how many things we have to pack in the hospital bag (for the birth, not for my transplant). There are lists and lists, all from different providers and organisations, telling you that you need this and that, and then very conveniently telling you that you can buy the whole online from them, and they will deliver it the next working day! Of course you pay for the privilege.

Anyway, we have our own lists and as we bought everything separately, we had to make sure we have everything. But then again, I could always drive 10 mins home to pick something up if we forgot it.

So this is what mummy’s hospital bag looks like:

  • Slippers
  • Dressing gown
  • Change of clothes
  • Toiletries
  • Maternity pads
  • Breast pads
  • Nursing top
  • Nursing bra
  • Disposable knickers
  • Going home outfit
  • Music
  • Snacks and drinks
  • Camera
  • iPad
  • Laptop
  • Phone

This is what baby’s hospital bag looks like:

  • Infant seat
  • Nappies
  • Baby gros
  • Going home outfit
  • Cardigan
  • Blanket
  • Hat
  • Mitt
  • Booties
  • Muslin squares

This is what daddy’s hospital bag looks like:

  • Change of clothes
  • Toiletries
  • Money
  • Phone
  • Assorted chargers

Sign of things to come I reckon. 😀

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