3rd Anniversary

Sorry mummy's late sweetie. We were in HK, and after that it's been rather hectic, but we have not forgotten, just didn't log into this blog till now.

3 years...

Hope that you are now in a good place. You are, right?

Love you always. (Still using P as your sub)

3rd Birthday

Hey ethan sweetie,

Today would have been your 3rd b'day. How time flies.

Your jie jie decorated your wall with lotsa stickers today: there's a butterfly, quite a few mushrooms, a green & orange worm (my fav), a fish, beautiful blue coral, and a sleeping crescent with a nightcap. Managed to speak her out of giving you the lipstick sticker, phew.

Love you, sweet.

2nd Anniversary

2 years.

Love you, sweet.
See you later.

Happy 2nd Birthday, Sweet

Hey sweetie,

Happy b'day. Like the cake? Had to distract your sis from wanting back her balloon.

Love you.

Who left you the bumblebee-Pooh, Sweet?

Christmas is coming up... merry xmas Sweet.

1st Anniversary

Strange. When I think of the word "anniversary", I associate it with "happy anniversary" or "anniversary celebrations".

But not all anniversaries are happy; and there are some anniversaries that are not meant to be celebrated.

This is obviously in that category.

Sweet,
It's been a year, one full year. How are you?
Mummy loves you... Mummy misses you.

Daddy, mummy and jie jie visited you today, did you see us? Did you hear us? Did you feel our kisses? Did you "taste" the "porridge" that your sis "cooked" for you and fed you? She was so happy when she heard, in the car, that we are going to visit "di di".

Your jie jie Ashley is now a big girl. She loves babies; she would have loved having you around, she would have taken good care of you like a proper 'big sister', you should have seen how she lovingly cradles and rocks her uwah-uwah (doll) and sometimes Piglet. Though the next moment she would ruthlessly abandon her poor doll as she focuses on something else, but that's another story -- can't be helped lah, short attention span... You know that sister of yours...

You take good care of yourself ok? I know that's somewhat a tall order for a 5-and-a-half month wee baby... Mummy hopes someone is watching over you.

Love you. Remembering you. Everyday.

Family Portrait

I think we haven't had a family portrait taken for a long time. This came out very nicely (thanks for your camera Mindy). We are pretty well color-coordinated, I must say, without prior arrangement. It took Ashley some effort to maintain that victory sign; it usually becomes a hand sign of "3" rather than "2" for "V".


Three Generations


And this one is of the girls...

For the record, these were taken at Rachel's wedding on 10 May 2008.

Happy 1st Birthday, Sweet

Happy b'day to you
Happy b'day to you
Happy b'day my sweet sweet
Happy 1st b'day baby ethan.

Got you a new hippo to sing for you...
Jie Jie gave you her silver "woo-woo-fly" with gold star... [ashley language "woo-woo-fly"=balloon]
How are you my baby?

Love you, miss you immensely.

xoxo
Mummy, Daddy, jie jie Ashley

100 Days Since

Today is the 100th day.

His First Christmas

Searched many places for an appropriate size xmas stocking, but had no luck... the stockings are all those big long ones, some 50-60cm long, too big. Was going to just make do with the santa and reindeer hanging ornaments, until the Saturday before Christmas, I finally found the perfect size xmas stocking for Dopey!

Look, Sweet, do you like your green little xmas stocking?


Saturday 22 Dec was also 49 days of his passing, a significant day according to Chinese customs. The whole family went down early morning. Since Christmas was near, got him a slice of swissroll, and placed the marzipan santa & xmas tree figurine I saved from an office log cake, added red & green jellies (xmas colors!) and candy canes, and viola, lovely xmas party food. Not forgetting a baby-sized malt soy drink.

Merry 1st Christmas, Sweet.

I know you've been a good boy... in fact you've been the most awesome, fabulous, wonderful, lovely, amazing, fantastic little boy. Love you lots. Remember the Christmas songs mummy sang you?

Thank You, & Remembering that Little Guy

Finally gotten around to writing and mailing out Thank You cards to T, Dr C, and the hospital staff last week. Some of them have taken care of Ethan throughout his stay, following him as he was transferred from one ward to the other; while others like the Ward nurses and certain docs have looked after him for certain stretches. We didn't have the chance to thank all whom we wanted to thank properly, and some of them may not know that Ethan has passed on since. Hence the cards.

As for friends & family, we thank you for your many prayers, concern and comforting words, and by letting us know that you are there for us. We will be all right, life will go on. Ashley is a big help in taking our minds off unhappy memories, she is the delightful cause of our smiles and laughter.

No matter what, I am grateful for the privilege to have known, held, and cared for my sweet baby Jay-En aka Ethan, even if it was for such a short while. He was most amazing, had been and will be dearly loved, and will be sorely missed.

Hopefully when Ashley is much older and begins to understand the concept of life and death, we will tell her about her wonderful baby brother. For now, he is just a baby whose photo is on mummy's phone, whom she refers to as "woo-wah woo-wah" (as she refers to all babies, mimicking their cry. I personally would go for "ong-ngeh ong-ngeh", don't know where she pick up her signature "woo-wah woo-wah" from...).

For those who didn't have the chance to know that little guy, here are some photos and videos of him. Preciously few, sad to say, and most taken in the hospital. But we do have those of him laughing and smiling, taken on his better days. For that, I am grateful.




[more coming soon]

End of the Road

"Life is so fragile, precious, and temporary."


Ethan is gone. He left us on 4 Nov 2007, his 161st day of stay since he was admitted into the hospital, his 176th day since he was born. He was just into his 5th month.

It was a Sunday when it ended. Just like how it had been a Sunday when it started, when we rushed him to Terence with his 1st Steph Aureaus infection. That seems like eons ago.

It’s now only 20 days since he’s gone.

Some days back, we were buying the hippo musical toy (the one that accompanied him thru his months at the hospital had been cremated with him so that his hippo friend will be with him) to hang at E’s niche, and I realized that my Kiddy Palace membership had expired. I was told to fill up the form for a new one. I came to the query about “number of kids”. I didn’t know what to write. As far as I am concerned, my “number of kids” is 2. But from KP’s point of view, they obviously want to know the number of kids I currently have, I suppose to gauge the amount of business they’ll get from me. So what should I write there? In the end, I left that empty.

Sometimes it just feels like a dream. It just feels some surreal. One year ago, I just found out that I was expecting E. We went through the whole cycle of pregnancy and delivery and having our sweet baby with us. We were a family of 4. And one year later, it is like the whole thing didn’t happen, bcos E’s not here with us, and we are back to just us and Ashley.

If it is not meant to be, why let him suffer so much?

There are many regrets.

I regret that I will never have the chance of holding him and bringing him out gai-gai, bcos for the 1st 2 weeks we were home in Punggol and for the rest of his short life, he was always in a hospital room hooked up to IVs. Plus he had to be isolated always, to prevent him from getting infections since there must be millions of bacteria, viruses and fungus out there that his body could not fight against.

I regret that we will never see that little guy grow up and prove us right that he will turn out a tall guy, given his long limbs and fingers. That he will probably play good basketball given his height. I regret that he did not have the chance to wear that blue NBA jumper suit that the NBA folks brought down specially for him from Shanghai.

I regret that his sister will never know him. That we will never see his personality develop as he grows. Though we’ve seen enough to know that for sure he is no push-over. That no way he cannot stand up to his equally fierce and bossy sister. He is a fire baby, just like Ashley.

I regret that he had to suffer all the number of times the docs had to prick him with needles to draw blood or set IV plugs. The actual pain is one thing, but I think the more terrifying thing is the anticipation of pain, of not knowing what they are going to do to you and how much it would hurt. I remember how he would be crying as we hold him down on the bed, looking at me as if asking why are you letting them do this to me, why are you not doing anything to stop it. And all I could do was to tell him I’m sorry, and that it will be over soon.

That, I think, is my greatest regret. Him being terrified. If I, a fully-grown adult, who knows how a needle prick feels like (it’s just like an ant bite, for a second, isn’t it), can have her heart beat faster and have her hands become just a little clammy before the needle goes in, what kind of terror must it be for a wee baby of his age and size, who does not understand what is going on?

It was during his last days while he was sedated in ICU that I looked back and realized that he had not smiled nor “talked” to me for a long time. He must have been feeling quite badly that he doesn’t want to smile anymore. He only fussed to be held, I guess only when he was held, he could be less afraid.

The night before he left, he began to de-saturate gradually. Every time we moved him, to change his position or change his soiled diapers, or do suction to clear his lungs/nose/mouth, he would take longer and longer to regain his oxygen saturation. It slided slowly, from mid-80s to barely 80, then to 70s, and then 60s in the early morning.

Up to that point, I had actually been still very certain that he will pull through. He had been there before, a couple of weeks back, and he had recovered hadn’t he? But as the number on the screen went down further and further, I finally realized that it was not going to go back up again. And as his oxygen saturation drops further, his heart rate will slow down, his blood pressure will go down, and that will be the end.

I wanted to hold him again for the last time as we say our goodbyes. We had not held him for weeks, since he went into the CICU on the ventilator. The doc and nurse helped disconnect him from the ventilator, and we took turns holding him. With him off his ventilator support, the numbers went down very quickly. And then he was gone.

We didn’t want him to feel any pain or discomfort, so he was sedated right to the end. We were told we needed to dress him, so Russ went home and brought his Levi’s gift set, and we had him dressed in his 1st and last little Levi’s jeans, tee and jacket. We also put on the Pooh mitten and bootie set that we just bought the afternoon before at Bugis.

After we got E’s death certificate done at the police post next door, the undertakers took him back to prepare him for the cremation the next day. There was not going to be a wake for him. No sin, you see, him being just a baby. No need for prayers and chanting for his soul.

Of the list of crematoriums and columbariums in Singapore, we thought that the Bright Hill Monastery sounds ideal, a peaceful serene resting place with the calming chanting of prayers.

That night, we texted friends about E’s demise. It was very hard to tell people that E was dead, even via text. Maybe it is the finality of it. We drew much comfort from the messages that came back, touched to know that many cared, from the various smses to the single awkward phone call that both parties didn’t know what to say, and the simple “take care, bro” said it all.

The Cremation
The cremation the next morning was a really brief affair. Too brief, I feel. It was a rainy Monday morning, and the morning peak hour traffic with rain and accidents on PIE (yes, it was a typical working Monday; the world still goes on, with or without us) had our undertakers arriving very late for our booked “time slot”. They had Ethan in this beautiful white casket, baby-sized. It was heart-wrenching to see a baby-sized casket.

We placed his hippo stuffed toy with him inside the casket, along with the mittens/booties that his Por Por bought just the day before he died and never had the chance to wear, the cards that Chester and Chantel drew the night before for him, the sketch that Russ did of our little family plus the letter we wrote him, and white roses.


Then we barely had time to kiss him goodbye, and they closed the casket, the monks did a short chant, and he was cremated.


His Final Resting Place
The Bright Hill Columbarium consists of 3 areas: the downstairs non-aircon area is really old, dark and cramped with floor to ceiling shelves of urns placed in a 4-step manner much like rows of cinema seats; the upstairs aircon area also feels quite claustrophobic to me, with most of the niches taken up and belonging to old folks judging by the photos; and the least occupied, aircon, high-ceiling 60-year “leasehold” building.

You see, this is how it works. The cremation fee covers allocating a random storage space in the Downstairs area. If you want a better spot, you can purchase a better-situated niche in any of the 3 areas. Prices for a niche range from S$2K to S$12K. So naturally, the eye-level niches in more spacious surroundings with statues of gods/goddesses in view are the pricest of the lot.

2 things that I realised: that (1) occupancy rate is high, the choicest niches are no longer available unless you want to fork out some S$10K; and (2) there are many rich people in Singapore. Remaining niche locations in the "leasehold" building are the best of the lot, but who would want to have to worry about extension or relocating 60 years down the road?

We decided that we didn't like the enclosed format of the Bright Hill Columbarium, so we decided to check out Mandai Columbarium. We want a nice, quiet, peaceful, serene and open-air resting place for Ethan, where we can visit him often and even hang out for a while. Turned out that modern, government-run Mandai is that place we were searching for.

We chose a family niche (meaning that it can hold 3 urns as oppose to the "standard" niche that holds only 1), intentionally picking a niche that is: (1) a "corner unit" in HDB-speak; (2) 2nd level from floor up, so that it is just the right level for us to see him if we sit on the ground, (3) facing the green slope so that Ethan gets a nice view. The bonus is that there is a bench next to his niche, and also, a power socket. Now all we need is wireless connection and we could park ourselves there whole day. I wonder when Wireless@SG will come to Mandai?

I also insisted on personally going down to the Woodlands factory to finalise on the 'artwork' of his tombstone (must be an occupational hazard of mine), when the lady didn't understand what I meant by wanting specific fonts for the engravings. Didn't help that I didn't know what's the mandarin translation for 'font'. The resultant tombstone isn't particularly creative nor a breakthrough of any sorts, but it is what I prefer rather than those standard-package design that all the other niches have.



His picture you see on his tombstone, that's another story. As we have pitifully few photos of Ethan, the best one was the one I've taken of him with the Shrek ears when he was only some 2.5 months old. We love the mischevous gleam in his eye, like he is sharing some secret with you. He looked so alert in that photo. But we didn't like to remember him with all those tubes. So we found this kind-heartened young fellow in a makeover shop who DIed away the Shrek ears and the NG tube for us.

"Before":

"After":


His niche is easily identifiable now, as currently, there is this bobbing helium balloon that his Sharon auntie bought for him.

DAY 156

FiO2 setting: 80
Pressure setting: 31-32
Dopey's O2 saturation: 87-89
Milk intake: 24ml/hr

It's terribly frustrating and disheartening that every time we managed to decrease the settings a little, we have to go back up again when he can't maintain his saturation. With much yo-yoing these few days, we have not managed to make any progress to wean him off the ventilator.

Which means that he is not improving. Which means the longer he is on the ventilator, the more likelihood that the high pressure & O2 will cause permanent damage to his lungs. And the longer he is on the anaesthesia/muscle relaxant, the more the inmobility will result in his muscles wasting away.

And yest morning, had a fright again when his ventilator stopped. It's the 2nd time around. At least this time I know, with past experience behind me, that it is faster to run out of the room yelling for the docs than just pressing the call bell and waiting for someone to come.

And today, he seemed to have suddenly visibily lost weight. He looks quite gaunt. Perhaps it is bcos he has passed out all those accumulated fluid in him, and that removed that artificial plumpness that we've been seeing these weeks?

Oh, and Harry Potter & the Deathly Hallows: Chapter 7

DAY 151

FiO2 setting: 70%
Pressure setting: 30.5
Dopey's O2 saturation: fairly constant at 92-93
Harry Potter & the Deathly Hallows: Chapter 3

Small victories... ...

DAY 150

Am pleased to share that Ethan is able to maintain his O2 sat at 91 with 80% FiO2 & pressure 33. And he is still wriggling his little fingers & toes now & then.

After yesterday, my conviction that Ethan is going to be okay is even stronger. Things may get worst before they get better, but at least I can take comfort that my strong stubborn fire baby will overcome all these challenges.

I just read him the 1st 2 chapters of Harry Potter and the Deathly Hallows. Shouldn't be inappropriate reading for a kid, right? Afterall it is written for children, no? Though it may not be quite ideal to start him off with Book 7, hmm...

Well, it can't be any less fitting than Ashley's first movie. You'll never imagine which one, really. No, not a Walt Disney film or even a Dreamworks animation. She caught it together with my MIL.
~Ashley Cheng, at the tender age of 16 mths, had her first big screen experience titled "881". ~

Not fair, I haven't even seen it myself.

[For out-of-towners, "881" is a Singaporean movie set against the unique rich culture of getai, getai being the gaudy, loud, flashy (mainly Hokkien?) song-&-dance show set up during the Lunar 7th month aka Hungry Ghost Festival to entertain the "good brothers" of the netherworld. I understand that this local production by Royston Tan brought many heartland aunties and uncles who have not stepped into a cinema hall for ages to return.]

Dopey just moved his fingers, left hand and mouth :)

Strong boy, even your anaesthesia cocktail can't keep you down, can it?

DAY 148

It's not good. He is regressing. Back at 100% on the FiO2 and pressure at 33. And those high settings only yield him a O2 saturation of 90-91.

Doc L says Ethan hasn't gotten past the peak of the para-influenza virus, so the infection is still damaging his lungs. And he expects him to get worse in the next few days. And they've done all they can do for him at this point. But that doc is always so negative. We prefer to speak with Doc C tomorrow.

What we are battling now is ARDS - acute respiratory distress syndrome. If you google it, it's basically breathing failure caused by underlying illness. In his case, it's the para-influenza virus that damaged his lungs, causing them to be unable to properly bring in oxygen into his body and clear carbon dioxide from his body.

We need to get rid of the nasty bug. But if his immune system doesn't work, how are we to do that?

DAY 145

16-18 Oct were the darkest days... His lungs are so badly infected by the para-influenza virus that Docs told us to be prepared for the worst. And the family may like to visit. To think that this is just a nasty flu bug for most people, yet to him it's so deadly.

They were already giving him the max support via the oscillatory hi-freq ventilator that gives him constant pressure to "open" up his fluid-logged lungs. Any more pressure, his little lungs can't take it; and O2 is at the max 100%. Yet his O2 saturation just keeps sliding down, from 90s to 80s to 74 at the lowest point.

He was given Ribavirin, the drug that might or might not help, but since he is so sick it's worth trying. He's also on heavy sedation and morphine, and they paralyse him so that he doesn't move about and dislodge his life-support equipment. A chest tube was also put in to drain the fluid.

And then it's all up to him. His choice. I alternate between telling him it's ok whichever way he chooses, b'cos he's been fighting for so long and he must be really tired, and pleading for him to stay with us.

I would like to think that he can't bear to leave all the people who loves him too, bcos yesterday his O2 saturation started to inch up point by precious point, giving us a glimmer of hope finally. And I can at last update this blog to set the minds of all our well-wishers at some ease at least. Sorry folks, I just couldn't bring myself to write earlier.

Understandably, the Docs are cautious in their opinions as he hasn't turned the corner yet. But every time they reduce the high settings of the machine, be it oxygen or pressure, and he can still maintain his O2 at a decent 90-94, the hope increases. He is now on 60% oxygen, 30-pt pressure, and O2 at 94 with okay heart rate & bp (blood pressure). When he stablizes further, the plan will be to drop the high pressure so that we don't bash his lungs too much.

Sweet, we are so so proud of you. You are awesome. And we love you so so much.

He has many more hurdles to clear ahead of him. The immediate one after we can confirm that he has curb the infection's progress is if there's any permanent damage to his lungs. And we've been warned that recovery will be slow.

And during our family conference with the BMT team last Thu we were informed that for his particular type of immunodeficiency, success rate of the transplant is low (30% vs the 70-90% for other immunodeficiency cases). We also finally heard from France that his IL12 component is very low, which explains why his body is not "triggered" to defend itself during attacks. And this being such a rare condition worldwide, documented cases seem to show that this condition does not respond that well to BMT, the donated cells don't engraft very well within the host. So the BMT is a very high risk procedure for him. Whether he will recover after BMT is a question mark.

For now, we'll take it hurdle by hurdle.

Thank you all who have expressed your concern, well-wishes, encouragements and kept us in your prayers. (And Chak/EK, I've been visitng Zach's blog too. Glad to hear that his counts are back up).

Here's a photo taken of Jay-En on 6 Oct before he got so sick:










My mum-in-law told us that for a couple of nights this week, Ashley has been waking up in the middle of the night crying uncharacteristically, at times doing the bao bao (cradling) action. At a year-&-a-half years old, we don't know how much she understands the concept of having a di-di (younger brother), esp one she hasn't seen much of except through glass windows, but we've been teaching her to bao bao di-di, and that action is what she'll do when 'di-di' is mentioned. Maybe it is some unexplainable invisible bond that she feels?

DAY 138

It's Ethan's fifth month birthday today.

He's back in CICU yesterday evening. The viral infection has progressed, and his breathing is worse. They've put him on the ventilator, and yet his O2 sat is only at best 92-3.

They put a scope down his lungs yesterday evening to have a look at what's ailing him plus collecting some tissue samples, suspecting it's the same para-influenza virus, but just to make sure it's not something else as well. Some results will be in later today, others a few days later.

Dr L says that he's expected to get worse in the next few days when the infection peaks. His condition is serious as his compromised immune system may not be able to fight and eradicate the virus. There's no known/well-proven medication that can help him. If he does get worse, they may just suggest we try experimental drug. Recovery process will be prolonged.

At least thankfully he is sedated now, so hopefully he is not in much discomfort or distress. He's a fighter though. Even when he's doped yesterday he was still kicking and struggling to fight off the docs & nurses who were "disturbing" him. Strong boy, keep fighting the nasty bugs and whack them ya.

DAY 136

Just when we thought that everything's going well, ethan contracted another infection, this time viral - para-influenza, type 3, the nasty type.

It was discovered last Saturday after the doc ordered a nose swab, when ethan started breathing harder. Days 5-6 is the peak of the infection, today is the 6th day. He is back in Hi-D, on the hated C-pap, with a nasty sounding cough.

The good news is his yesterday's chest xray shows improvement in the infection, and his lungs sound clear today.

The bad news is that he had 2 frights yest afternoon and again last night, the 2nd compounded onto the 1st, making him extremely fretful and jumpy that he dare not sleep altho he looks so tired, and when he does doze off from sheer exhaustion, he jumps up from his sleep every few minutes. He watches any stranger near him wearily till they go away, and whimpers if he is touched or at any attempts to put him down on his bed. He also can't maintain his O2 saturation, breathing very hard, shallow & fast.

Apparently what happened was the tape holding the c-pap in place gave way, and the device sprung and hit him on the face and woke him so abruptly that he had a bad scare. Took the whole afternoon to calm him down, holding him closely. Then at night, the tape came loose again, so when the nurse changed it he somehow got another bad scare that set his heart rate racing for quite a while.