Where's My Honey???

We woke up this morning and to our delight, it was snowing rather heavily!!Snow covered trees and leaves...how wonderful. Gabe had his doc's appt today and yay so far so good. Both shunts are doing well, heart load looks good. Dr H says this should be able to buy him time till his surgery at 10kg...yes Gabe is now 6.24kg, up from his 5.7kg in the hospital...well done bb....The lil cutie cub was all dressed up in his bear jumper coz it was freezing cold and i didnt want him catching a cold...ain't he lookin cute? He looked so warm, even i wanted one for myself...

I have been down with a bad bad cough for the past 1.5 weeks now, tons of phlegm, doesn't seem to be easing. So...dear Daddy has been handling Gabe at nights after 12am...yes, poor Daddy had to feed Gabe his many feedings, until in the end we got fed up and stopped his feedings after last feed at 2-3am...to do that, Terry has to carry Gabe from his crib to our bed and let him sleep next to him. Otherwise there is no way to put Gabe back to sleep again...so i have a bad feeling, Gabe is gonna be a permanent fixture in our bed....anyways, checked in on them one morning and couldn't resist taking a pic..ahaha Terry looks err...bad..but so adorable, Father n son together..

It's getting so difficult again feeding Gabe. He takes so long to finish his milk till it gets cold in the end and he doesn't really want it anymore...sigh, i wish there was a button where i could just press on his tummy n ta-dah the milk is all in..and lately he has developed this habit of playing when i feed him. He lifts both his legs up when i feed him, and uses either leg to tap the bottle while i feed him. And he seems to enjoy it, tapping many many times. When i scold him, he uses his legs then to tap my chest....argghhhhh...

He now knows how to "call" you when he wants ur attention. He whacks his hand really fast n many times if i'm lying next to him. And if i am close enuff, he can touch my arms, he does it on my arm instead. Terry got his first attention seeking whack today...err..on his face..guess he was too close to Gabe...muahahahah. I'm trying to teach him Hi-Five right now and Bye Bye....umm...tink it's gonna take awhile..so will show u guys when we get to that.

Gabriel On..the cheeky lil Boy

Before heading to bed tonight, i decided to take some pics of Gabe in his cute lil pyjamas...courtesy of Grandma. The lil boy was in a good mood, so managed to get some nice shots.

Quick update first, went to see doc on Wed, wound is OK, shunt flow is good also...and doc said lip color looks good...eg pinky, NOT purplish deep red...sigh, stupid me...So we have another appointment next Thursday, where he'll do an ECG and take his weight, so will update ya all then.

Meanwhile, the lil guy has been really really jibberish lately, seriously. He can go on and on and on, till both of us will just be like "sshhh Gabe"...Looking at him lately, i've just realised how much he's grown in terms of his development. He's so kay poh now, wants to grab everything plus he uses 2 hands alot now instead of 1. and when we carry him his back is much straighter and he holds his neck up long. Plus, he is sleeping so much better in the afternoons (cross my fingers this continues on), so i have at least 1.5hrs or more to myself now...At night, mostly he is a sweetie now. I tell him goodnight, see you tomorrow morning, Mummy loves u...then put him down. Mostly (90%) he doesn't fuss and just lies there n starts to play then fall asleep. You guys have no idea how long i've been waiting for this moment...phew....only thing now is the waking to feed past midnight, which he still does like 2 times....but i know we'll get there soon...Well done Gabe, you're a big boy now...Okiez everyone, presenting the many faces of Gabriel On..

We're Back Home

Sorry for not updating sooner, had my hands full past week. Gabe is finally back home with us. He was discharged on 15th Feb. It was a long 4 nights stay with him in the hospital. Bed so small n crampy, i could not sleep well at all.But all's good now, we're adjusting back to life in Tokyo. Gabe has lost abit of weight. when i carried him in the hospital, his poor body seemed so light n thin, broke my heart. He weighed about 5.7kg just before discharge. Previously before the incident, he was about 6.2kg. So now our goal is to fatten him up, but he seems to be having some problems drinking the amount he used to drink, so it's gonna be a slow one... But the upside is that he now can sleep without much assistance. Afternoon n morning naps, i put him on our bed and lie next to him. He'll play n whine, then fall asleep. Nights i just pat him abit after putting him down and he cries abit sometimes, but falls asleep in about 15mins..big big improvement compared to last time when i'd have to pat n rock n sing him to sleep. His neck muscles seems to have weakened slightly especially in the hospital.. when i carried him he seemed to have trouble holding it upright. I think it was due to the weight loss and probably a little weak after the surgery. Now though it seems to be improving much. He's definitely more sensitive after the op..not sure why. You cannot scold him at all, esp at night. He cries at any little scold or nagging.....pouts way way more. Yesterday we went for our first outing since coming back to Tokyo. Terry brought us to the Premium Outlet. Wow, it was huge and freezing as it was open air..I bought myself a Nike sweater and Terry got himself a pair of Adidas shoe...err Gabe ended up with nothing, that's coz he has too many already... I'm not feeling too well, having bad sore throat n cough. So ain't gonna do any outings next few days. Not wishing to fall sick esp flu as it'll pass to Gabe and he doesn't need to deal with that now, so hoping to get enuff rest n get well. Some pics.... This one was about 2 days after his op, we visited him and found him playing with his legs:)

All bundled up in 3 layers to go kai kai

His litte haven at home where we dump him to have some time out...

Hello everyone!!

Gabe Says.....

I am angry at Mummy n Daddy...that is why i decided to punish them this morning by not smiling at them...i just pretended they weren't there. Yes, this was the exact situation when we got there this morning....Gabe was wide awake, n quiet, subdued in fact...when he saw us he did not even give us any reaction...no smiles, no nothing...i thought it was due to the light sedation they gave him last night to sleep..but nope...i think he was seriously angry with us for ditching him last night....sigh.... While we were there i tried to play n sing, no smile..in fact he even pretended we weren;t there and found that playing with the white wire was more interesting than staring at us...sniff sniff...he's so cruel...i'm hurt..when the nurse spoke to him though, he smiled at her!!!!!!! Sigh..if only he knew how much i wanted to carry him last night and today...please dun be so cold toward me baby.... Doc has said tomorrow afternoon they will transfer him to general ward, so i'll be there in the morning..my bags are packed..yay, i get to be with my son now..

This pic, he's smiling a tiny bit, but that was after like countless attempts to play with him...

Hello Everyone!!!

We visited Gabe last night and he was fully awake...poor boy saw us n cried, prob overjoyed to see us and also to let us know how upset he was....

Err...if u look at the pics u'll notice he has his pacifier taped to his mouth...guess you know why lah....yes he cry too loud, disturb all his friends, so there goes...

While we were there, he kept scrunching u his face into his "ku pau" expression, hoping we'd pick him up...n kept whimpering.. had to sing n play to calm him down...poor baby...he had been up for about 3 hours when we got there so i guess he was getting tired too and wondering how come Mummy wasn't carrying him n patting him to sleep...i will baby soon i promise..here are the pics from last night and some videos..

A Wonderful Surprise

When we visited Gabe last night at about 7.30pm, we had a very big surprise!! He was awake....i was sooo happy. Once i called him, he started to lift his hand in response...even though it had a cast-like thing...the kind nurse on duty took it off and he held our hands and kept moving his arms...i sang to him n the cheeky guy smiled....though it was hard with the tube and tape on his mouth, but smiled he def did, twice....Some pics below of the lil guy....

This morning, we were informed by the doc that they will be removing his tube today, waiting for him to wake up first..so later this evening we'll see him and update u guys. If all is well, he can be transferred out to general ward on Friday...yay!!!!

I'm gonna hold my baby really soon...

Post op Pics

Visited Gabe this morning, still sedated, but oxy support lowered and they will try to take him off venti today or tomorrow depending on whether his support can be lowered further and he maintains his saturation. we're hoping soon so that he can be transferred out to general ward soonest and i can be with him there.

Kind nurse took some photos of the 3 of us, not too clear, but will have to do for now. The others i took this morning. When we say him last night at 7.30pm, he was on light sedation only, so he could hear us!! I sang some songs to him and nurse said he knows i am there coz his oxy levels went down and his little body kept moving alot;) so so happy..

You're well on your way to recovery baby, just abit more, stay strong yah...i love u sooooo much...

We Feel The Love

I am so glad & blessed to have such a caring and loving family. In times when i need reassurance and support, you guys have always been there. Especially since Gabe was born. We've gone through so many challenges right from his birth. You all have accepted him so readily and lovingly. I am sure he feels the love as well.

I am thankful for each and every one of you...without your love and prayers, i do not think we'd be strong enough to handle all these.

However, i dunno, i feel i have to get this off my chest. As many as there are of you who love Gabriel, there are a finger-few who i dunno..are totally ignorant or they just feel uncomfortable in the presence of a special needs child.

Sigh, for the sake of relationship, i shall not name names, though i very much intend to...
I have always known that Gabe may not be accepted by everyone in society. But it hurts when you realise that even some people close to you in terms of relations, do not accept him. Perhaps for some people i am mistaken, but the look i saw on their face said it all to me...Why wouldn't anyone want to love such an adorable n spirited baby? Does he really look that diferrent from us all? FYI, DS is not a transferrable disease...no matter how close contact you come into him, he wun bite, neither will you develop DS...

Anyhow it's a good thing we dun see you often, just maybe once a year. So be off with you ignorant people and i hope for your sake one day you will realise what an idiot you are.

But to the rest of you people who adore and love GAbe, THANK YOU for your love, we feel it all the way here in Tokyo in this freezing weather.

Today Gabe is stable, they will not be removing his ventilator yet, but have adjusted his oxy support down to 25% which is a good sign. His oxy level are good at 85-90%, blood pressure steady. He looks good too, sorry i did not take any pics today, will try to later when we see him again.

Love you all...

Gabe's surgery went well.Dr M finished the op at about 1.30pm.He told us that the left shunt has good flow and Gabe's oxygen rate is at about 80+% which is a huge improvement.

However,there seems to be some bleeding from his airways and when we saw him at about 2pm Dr M said that e oxy level came down to 75% due to the bleeding. Yes we were very very worried as this meant the lung may have some problems. However at this point they cannot pin point the cause. So Gabe was given some med n we will need to wait for few hours to monitor. Poor Gabe,like as though he hasn't been through enough.

We decided to wait in the hospital till 5.30pm where they will let us see Gabe again. This evening the doc showed us his chest xrays n it seems that Gabe's lungs are clearing up. Very good sign. So relieved but still abit of bleeding. Oxy levels are at about 87-90% from what I saw while in the icu..good stats. Also face color seems better, pinky hues. Now we xan only wait and see when he will be taken off the ventilator. Praying his stats remain stable then

Feels like I've been through a very long rollercoaster ride.everything seemed to have happened so fast n sudden. Still kicking myself for not noticing his color change, when all the doctors seem to hv noticed it right away. I'm such a horrid mum, so sorry baby..

But Gabe..what can I say, he's such a strong and brave baby. I am so proud of u baby and I honestly couldn't ask for a sweeter baby. Love u so so much I can't imagine a life without u by my side.

Mummy can't wait to hold u...til then rest well n get well

The Day Before

Gabe's operation is tomorrow and we were briefed by his surgeon Dr Murakami this morning. It's going to be another shunt insertion, this time to his left side of the heart and they will make a cut near his armpits instead of the middle.

We are praying there will be no need for an emergency cardiac bypass machine to be used, as that will require a drug called Hepparin and due to Gabe's bloody stool previously, it could cause uncontrollable bleeding. The surgery will start about 9am and take about 3-4 hours. Thereafter Gabe will stay in the PICU for the next 4-5 days and if all is well he can be transferred to the General Ward and then be released to go home in about 1-1.5 weeks.

Of course like the op before there are risks but we're praying no complications. Please let it be a smaooth op. We're feeling nervous of course. It's a case of De Ja Vu all over again. Previously i remember being a total wreck when his operation went way beyond the supposedly 4-5 hours time mark and took 8 long hours instead...i'm hoping this round it's a 3-4 hours good op.

I did manage to take a few pics of him in the PICU today...pls continue your prayers for GAbe and i'll update once again after his op...

Guilt

I feel guilty...really guilty...i think i am stupid.

The doctors were asking us in the hospital, how come we did not notice a change in his face or lip color. Meaning that from what they see, it is purple/bluish. I told them no i didnt realise it was that obvious.

I mean i saw his lips were a dark redish color, but i thought it was ok..as in normal. But now as i look back at his photos past months, yes it really is very obviously darker...and perhaps that was a sign that i should have noticed his oxy levels were decreasing...and yet as his mum i didn't notice this obvious change..feel like kicking myself hard...how could i not have seen this?

And i still made him do tough tummy time...:(....i'm so sorry baby, forgive Mummy...i promise after ur second op, i wun smack u at all even though you're naughty..and tummy time we'll do few times a week only and shorter..ok? Dun be angry at Mummy.

My Shining Star

Even though it's a tough time right now, we're trying to stay strong and optimistic. I still see his lovely smile in my mind every second and his ferocious cries.

So it's only right that i share with you all the lovely photos of him that we took in the studio in Singapore. He's so photogenic and cute...so many expressions:) Melts my heart just seeing these pics

Enjoy!!!