Stay-Home Dad... no more

Tomorrow, May & I will be switching roles again - she'll be at home full-time with Vera while I'll be back as 'working-dad'. Hope we all can settle-in well & fast with this.

I must really thank my kind & extremely understanding boss for granting me no-pay leave despite the current financial climate. Without which, I won't still be holding onto my job after 10+ months (24/7) of 'patience & endurance'-testing but rewarding experience with Vera. As we know, statistically, T18s' first year is the crucial 'deciding' year. I'm grateful that I was able to spend plenty of time with Vera & glad that we've made it this far.

Been telling Vera for the past 3 days that she won't be seeing much of dad (in the weekdays, daytime) but she didn't seem to respond at all until today..... she suddenly started smiling for a minute long. A big smile which I haven't seen for sometime since the op. As always, I only managed to catch the 'subsiding' one by the time I found the camera.

Maybe is her way of assuring me that she will be just fine (if not, even happier since she'll be hearing more of mum's singing) with this minor change in arrangement.

Happy 13th Month (belated)

Two weeks after the surgery, Vera is now more her normal self. Although she's still weak in the legs and doesn't like to stand like before, at least she's responding to our efforts to cheer her up.
The best part is, there's NOTHING on her face now. No tubes, no rash, no sticky tape. In their place are lips that keep trying to make an 'O', you'd think she wants to kiss you.

The little girl is much, much happier without the ng tube. So we were right to listen to all you mothers who've been there! With nothing in her nose, I think she actually breathes better especially at night, even with a runny nose.

Another blessing is this: there's been not one vomitting ever since the surgery! Even when she chokes lying down. This is big news, coming from the days where she'd puke 2-3 times a day. So, I'd say the fundoplication has done it's job. More on her new button later and the new way of feeding, but all in all, it's good news after the surgery.

Now, we watch Vera not because we need to catch her hand from pulling out the ng tube, but because we love her new chubby cheek look!

Trading Places

From next week, Ian and I will be reversing roles. He will return to work (I bet he’ll miss Vera big time) and I’ll become a PAVE – Personal Assistant to Vera. (Gotta think of a snazzy title for myself, cos SAHM (Stay-at-home mom) doesn’t quite match up to the job.

In my entire working life, I’ve never really taken a break. It was always non-stop from job to job. Working has always been what I’d expect of myself, not so much because I had bills to pay, but because I genuinely enjoy what I do.

But along came the recession, and the big squeeze on companies and their manpower. Employees, desperate to hang on to their jobs in hand, now put in extra hours without protest. The work-life balance that I managed to strike was slowly tipping one way.

I kept playing what one mother said over in my head: “There will always be time to go back to your career. But you cannot go back for their childhood.”

So it's decided.

The opportunity cost will be high, living on one income. The challenges will be many (am I stay-home-mom material?) The future will be uncertain (will I find a job as easily again when I return?) But I’m taking the NIKE road on this: Just do it.

Last year was a roller-coaster ride for us. Looks like this year we’ll still be flying by the seat of our pants, minus safety belts.

Swallowing After Surgery

Vera's angular cleft surgery has had one immediate outcome: Vera now swallows better. For now, it's just water of course. But the improvement is apparent. Because the side muscles of her mouth are now re-connected, she's able to control the swallowing action better. Previously, she would take one gulp at a time. Now, she manages to swallow 2 to 3 times continuously! Plus, she is now able to cup her lips fully over the spoon, and there is no leakage. It's early days, but I believe we've taken the first big step towards improving her dysphagia. Feeding therapy is going to have much better results from now. I just know it. Can't wait to get back to therapy sessions! Once Vera is better recovered from her tummy surgery and her flu, I guess.

March Madness

March is the month of upheaval.

Vera had her surgery. Daddy spent nights at the hospital. Mommy had to run in and out of the office (way too much). My maid had to be sent back to the Philippines (just when we needed the most help!). We have to adjust to g button feeding and maintenance (what a hassle compared to ng tube feeding). Vera has strange reactions to the surgery (poops uncontrollably until her bum’s all rashed up, tummy extra bloated). Vera had ‘hospital trauma’ (cries a howling cry when we touch her and now doesn’t like her mouth to be touched like before). I fell very sick with high fever and a hacking cough (too sick to walk, too sick to blog). I passed it on to Vera. Vera is sick now. Ian is fully stretched looking after her. Ian is going back to work next week. I’ve quit my job (and it’s a recession). We missed her monthly celebration.

I’m glad March is nearly over.

Discharged From Hospital

Just a quick update.

Little Vera has been discharged on Wednesday afternoon! My sincere thanks to all the prayers for her.

Sorry for the late news as we've been busy settling Vera back home after her 8-days of absence. In addition, May has been down with fever/cough since the morning of Vera's discharge. Don't think she's in the mood to write but I feel that we should still keep our friends, especially those overseas, posted on Vera.

For those who have been following our blog, you would notice that this my first post. Been wanting to contribute a bit but never really get myself to do so till now. After all, May is the one better with words & she has been doing a great job blogging.

I sure May would write more later about the hospital stay but, for now, here are some photos I took with my cellphone while camping over with Vera:

A few days after transferring out of ICU. With bandages still on. She was in better mood in the days, eyes wide-opened looking around.

Gave her some oxygen by the mask as her saturations were low in the nights.
This little girl slept late most of the 'nightouts'. This was taken at 2am! Maybe she has been taking more naps in the day, or it's the environment, or she just can't simply fall asleep by herself. I usually need to rock her to sleep at home but don't think it's a good idea after op.

Vera's new look!
I was home for an afternoon nap but my sis, who was there to witness it, says that the brave girl was calm during the removal of stitches on her lateral cleft 6 days after op.

Ebb And Flow

Last night, I had gone to the CICU waiting lounge to get a cheap cup of Milo. (If you hang around enough in a hospital you start to know where to get what.) There were almost 30 people there, rare for CICU as the maximum is 2 visitors at a time. I recognized some to be the family of the boy who was next to Vera when she was there. The boy who had fractured his skull and had brain surgery. The men in the family were huddled in a circle. Among them was the neurosurgeon. The air was thick with tension. Without hearing a word, I knew what the decision they had to make was.

This morning, I went to get my Milo again. The waiting room was empty.

Two things struck me:

How enormous the devastation must have been for the family. To have absolutely no warning and no time to absorb the news must have made it tremendously harder to bear.

Yet, how seemingly small the event was in the larger scheme of things. The waiting lounge was back to the usual quiet disquiet. I thought to myself, how many must have come and gone through these doors. In and out. Ebb and flow. Joy and sorrow. In strict keeping with the laws of nature.

Flying Kiss

"Hi uncles and aunties... now I can blow a kiss to you all."

Vera tries out making a big O with her newly formed lips.

Dedication Beyond Compare

Dear doctors and nurses,

Thank you for choosing to do what you do.
Because of this choice, you’ve missed lunch.
Because of this choice, you work crazy hours.
Because of this choice, you put yourself under immense stress.
Because of this choice, you bear the weight of worried parents.
Because of this choice, you trade personal time for patient time.
Because of this choice, fragile babies and weak children may live better.
Because of this choice, one life gets a chance to change many more.
Because of this choice, Vera received the best care possible,
regardless of her death-sentence diagnosis.
Because of this choice, you’ve given her a smile to melt her parents’ heart,
and a button to help her grow.

To the OT, CICU, cranial facial and paediatric surgery team at KK Hospital,
thank you for playing a part in Vera’s well-being.

Living On A Tightrope

If there's one thing that hits you at a hospital, it is this: You never know how long you will live.

Seeing the on-goings in the Children's ICU while Vera was there shows you the fragility of life. A normal baby, the same age as Vera was next to her, was in critical condition, in a coma I believe. He had a fall and fractured his skull. Doctors were losing hope. His family was outside. Devastated.

Sometimes we think we are so strong, so invincible. But the truth is, we are not. In a flash, our lives can change forever. We are actually living on a tightrope. Only when we fall, do we realise the importance of the safety net - family and friends.

Perhaps the question isn't about how long we live, but how much we treasure the minute moments of our lives.

Let Me Out

This is Vera at her feisty best. The marathon crying continued today, from CICU to the high-dependency ward. Is she in pain? Is it because she hates being tied down (it's to prevent her from touching the lip wound)? Is she hot? Is she in an uncomfortable position? Does she want to be carried? We tried everything to no avail.

Then, we felt her tummy and found it tight as a ball! Ah, the little girl's stomach was distended. This is supposed to be a result of fundoplication, but probably worsened by her non-stop crying. The minute we let out the air - it's call "venting", she stopped immediately. It's as if the pressure had been let out of the ball. Her tummy became soft again.

Ian said, "this is more stressful than at Special Care," referring to the early days when Vera was a newborn. Well, I'd trade this stress anytime for those doom-and-gloom days!

Extubation Successful

What a relief. At 3pm today, Vera was successfully extubated in the operating theatre, and is able to breathe on her own now. What you see planted in her nostrils now is just minimal oxygen as backup. Actually, she had awoken from her sedated state just before the procedure, and was already struggling to be set free.

She's now back in the Children's ICU and has been crying for nearly 3 hours non-stop. A Vera record. Check out the swollen eyes that can hardly open. This is likely due to the surgery pain at the lips and the abdominal area, and morphine withdrawal. The doctors have put her back on sedatives and low level morphine to keep her comfortable. She's also started on milk, just 30mls to begin with.

There's good news though. The ENT doctor did a scope down her airway and it's found to be NORMAL. No floppy airway! What's causing the stridor is probably the low muscle tone of the throat area. And this is linked to her dysphagia. This however, is something that can improve over time with therapy (hooray!)

The hardest part is over now. Let's hope Vera continues to recover well and come home soon.

Still Intubated

After almost 5 hours, Vera was wheeled out of the operating theatre at about 2pm today, straight into the Children's ICU. The operations on her angular cleft, g-tube and fundoplication went smoothly. The only difficulty that arose was in intubating her. As explained by the anaesthetist, her floppy airway and some deviation in the structures there led to a few attempts to properly insert the tube. (Basically, this is the tube that will allow air in and out of her lungs from a respirator, to help her to breathe while she's knocked out.) We were told to expect some scarring (I imagine it's like a straw rubbing against the insides of your throat) but that should subside. She will probably be intubated till Friday. If she's extubated too early and she can't cope on her own, we risk intubating her again, causing more trauma because it'll be difficult.

Currently, she is on morphine to numb the pain. It has a sedative effect as well but apparently not enough. The little girl was semi-awake and struggling weakly (l'il fighter alright), trying to lift her splinted hands, obviously unhappy with having both tied down to the sides of the bed. There were tears in her eyes.

At present, she needs to sleep more than anything. As it is, she has developed eye bags. So we'll leave her to do just that. She's in good care in CICU, so we'd better rest while we can. Once she's out and moved to Hi-Dependency, we'll have to be "on duty" round-the-clock.

The wait for Vera was filled with anxiety, but I guess I've got "training" from the NICU days. It does help lessen the anxiety, of the whole environment, the equipment. I guess the first time is always the hardest.

Sleep tight Vera. Mommy and Daddy are already missing you keeping us up till late at home.

Operation Underway

Vera is now in the operating theatre. It will take 3 hours, so she should be out about 12 noon or thereabouts. We are prepared and expecting her to be taken to ICU after the operation, as the team is being extra cautious in her case. We have the best padiatric surgeon and cleft surgeon on her case, so she's in the best hands possible. Thank you all for your thoughts and prayers. Now for the finger-biting, knuckle-cracking wait...

Pokey Poke

Here we are, soon after admission and Vera's got her first (bitter) taste of pain. Vera was taken into a room to draw some blood for pre-op tests and also to set an IV plug. We were told to wait outside. "She'll be struggling a lot" we told the medical officer. "Don't worry we can manage,"

Next thing we know, we could hear the little girl howling her lungs out inside. We had a feeling finding a vein was not going to be easy for her. Chubby hands and legs don't help here. I knew fixing it after anaesthesia is an option. I should have insisted.

10 minutes of crying later, we asked to go in and calm Vera but were told that it'll be done soon. Far from it. We were called in shortly. After 2 pokes, they still could not get the blood samples. Definitely no IV plug here. Just 2 blue-black feet, red eyes, lots of mucus and a very upset baby.

Now, the plan is to fix the plug after anaesthesia.

Admission Day

As you can see, Vera is completely oblivious to what's in store for her in the next few days. She'll be admitted to hospital this morning at 10am for all the pre-op tests. There'll be a meet-up with the anaesthetist as well. Are we prepared for the op? Nope. But neither are you ever ready for things like this - same goes for getting married, or having a baby, or raising a child. You know there are risks, but you just have to trust your instincts and take whatever happens as it comes.

The operation will take place on Wednesday at 8am (Tuesday 7pm US time). It should last about 2 hours. We hope Vera will be able to breathe on her own emerging from the operating theatre. Failing which she will probably be whisked to the Intensive Care Unit. More updates from the hospital tomorrow.

Going For Surgery

Vera is scheduled for a g-tube button and a fundoplication surgery next week. I’ve heard from other T18 moms that their kids were happier after getting a g-tube. I can imagine, no more something stuck in your nose and throat all the time, no more itchy plasters and face rash, no more tube insertion discomfort. So I was really keen to get her the button. That was a few months ago.

Now, the fact that the surgery is looming so near (it’s Next Week!), I’m getting that not-prepared-for-the-exams feeling. The fear has started to creep in. She has to be intubated as the surgery has to be done under GA. What this means simply is that she will be knocked out and a tube will be put down her throat to force air in to keep her breathing. There have been T18 babies who have had complications with extubation – meaning they fail to get back to breathing on their own after the tube has been taken out. Some have also had adverse reactions to morphine, a painkiller administered after the surgery.

Every time I look at Vera, smiling so blithely at me, I feel guilty, because I know there’s something painful in store for her, but she doesn’t. She doesn’t have a clue what she’s in for. And because there’s no way she’ll know, there’s no way she can be prepared for it.

I’m trying hard to focus on the positives. Vera will no longer have to scratch at the itchy patch on her face. She’ll look much better in pictures. People won’t stare at her and asked ‘What’s that green thing?’ We’re also getting her lateral cleft closed up at the same time. So when it’s healed, we’ll get to see a nice big perfect smile. Not that I’ve ever minded the way her mouth looks, you get used to it, but more to so that liquids won’t flow out so easily when we feed her.

Connie says it helps if you tell them what’s gonna happen before it happens. Like tell her her tummy is gonna hurt a little. So is her mouth. So is her throat. That it’ll be bright and cold. That she'll have needles poked into her. But she’s gonna be ok. She just has to be a good, strong girl and breathe, breathe hard once she’s extubated. And keep at it no matter what. So much to ask of a little girl.

Psychedelia Room

Woah. Check this out. Vera's school has a cool Sensory Room with lots of psychedelic lights, columns of coloured jet streams (with toy fishes) and many other lighted devices. All aimed at stimulated the visual senses of these special kids. The light-loving girl had a busy time staring. What a cool room!