31 January 2010

Up In The Sky

Over the weekend, a kite festival descended upon the park at our doorstep. We enjoyed the view of the high-fliers from our bedroom window, and also sat out in the field. Val and Bridgette joined us too. Vera enjoyed lying on the picnic mat, and watching the movement of the kites. It was pure and simple joy.

28 January 2010

Sad Story?

I came across a posting on a motherhood forum that described Vera's journey as a "sad story".

Hmmm...is this the impression some people get from reading about her?

Which part of it is so sad? Perhaps if Vera had passed on (touch wood), I would understand.

But she's alive and kicking, overcoming the odds, surprising the disbelievers.

Or perhaps it's sad that we've been so unlucky to "kena" a genetically abnormal baby - every parent's worst nightmare?

The truth is, we experience joy and satisfaction more deeply than you can imagine.

Yes we will be sad one day. But surely not now!

26 January 2010

The Smiles Are Back

Funny how things work out.

Vera comes home from the hospital - chubbier (aren't you supposed to lose weight after an illness?), able to sit up longer (after lying down for too long?), and smilier than ever.

In fact, she's been smiling since we stepped out of the hospital. She smiles in the car on the journey home. She surveys her surroundings intently when we reach back. She smiles when familiar songs are played. She smiles even to herself.

Best of all though, is the smile she gave me when she first opened her eyes this morning. As if saying, "I slept well, Mummy." For too long, we had gotten used to Vera waking up tired and cranky, struggling with congestion. That smile, was worth every cent of her new six-thousand-dollar biPAP machine.

"Sleeping Beauty" - Breas iSleep25 with MaskMedic

24 January 2010

Vera Comes Home

After 2 weeks in hospital, Vera is finally home. We were so happy, as if we were bringing a newborn back from the hospital.

However, her doc has told us that it will take another 2 weeks for the secretions to clear completely. So she's better off resting at home. She will have to miss school in the meantime.

There will be follow-up visits - plus another hospital stay within a month's time, for a sleep study to get the suitable settings for her BiPAP, and a ph probe to determine if she indeed has reflux.

We hope to settle down quickly into our new BiPAP routine during sleep time. And hopefully, we'll all get a good night's sleep from now on!

Thank you for your thoughts and prayers to get Vera well and back home.

23 January 2010

What To Tell Kids

Some parents (including myself) are stumped when their kids ask them: "Why is Vera so small?" or "Why are Vera's eyes so funny?" It is a perfect opportunity to teach kids about disability. But it's easier to sidestep the question and say, "Don't be a busybody."

One mummy however, suggested this answer which I think is absolutely spot on.

"Vera was born with some medical problems (or Trisomy 18), so she looks different from other babies and has learning difficulties. It will take her more time than you to learn to drink and eat. (She had an operation here to help her to grow. This is called a button. It's where the milk goes in.)

Even though she can't talk, move very well (do something), she loves having friends and playing with you. See, you can do this with Vera. She's smiling now. She loves this. She likes you.

Do you like music? Well, Vera likes music too.

If Vera taps her hands, it means she likes the music toy. Can you press the toy to make her smile?

Vera is happy that you played with her because she likes little children and having many friends.

Let's wave or shake hands and say bye-bye.

Vera loves hugging. Do you want to give a goodbye hug?"

Happy 23rd Month

Vera is still in hospital. But we have every reason to celebrate.

We've seen her struggle with sleep for the longest time. Falling asleep has always been a long-drawn affair - of moaning (Vera) and carry-rocking (us) for at least half and hour.

For the first time in a long while, we witness how easily she falls asleep.

She yawns. We put the BiPAP mask on (with just a little struggle). She falls asleep in 5-10minutes.

Her breaths are slower. She perspires less. (We used to soak up nappy cloths of sweat from her back.) She seems to go into deep sleep faster.

It is too good to be true.

Plus, she wears the nasal cannular for oxygen (still with some struggle but not for long) without pulling it off anymore.

Must have been all that “training” she got in PICU. Perhaps she started to realise that these “things” made her feel better.

I really do hope what we've seen in hospital continues at home.

Downside: The pressured air from the BiPAP tends to force her saliva out, causing her to drool in her sleep. I guess that’s the trade off for improved breathing.

It’s been 8 months since we first tried getting her onto a mask. What a relief that we’ve finally crossed this hurdle.

20 January 2010

Who Would Want a Child Like That?

There are five other cubicles in Vera's ward section. I can't help but notice that they are mostly occupied by children with some form of disability. Like Vera, they do not move very much, lying down and staring into space most of the time. I play devil's advocate and ask: Why would someone choose to be a doctor to help children like that?

I chanced upon this blog post via Annabel's blog and got the perfect answer.

"Who Would Want a Child Like That?"

Lots to Learn

Day 8 Update:

Vera has been out of PICU for 2 days now. In that short span of time, lots has happened.

1) We've met and spoken to the team of doctors - from neurology, respiratory, GI - who will be looking after her. They are a passionate, driven bunch and we were able to get some clear direction of how we will move forward with Vera's care.

2) We've had her promptly initiated onto Bipap. After all the hoo haa at home getting a mask on her, this girl surprises us by pliantly accepting it with hardly a struggle ("is it the hospital air?") The mask she's wearing was first recommended to us by Danielle's mummy. Not knowing if Vera will accept it, we actually didn't dare buy it a few months back, in case it was money down the drain again. Now at least we know it is a good fit for her.

3) We've had physio teach us how to position her for drainage of secretions, how to do chest percussions, and we're learning how to suction her (major mental hurdle here! memories of tube insertion days!)

4) We now know how to administer Ventolin, a medication to open up her the airway, via a chamber.

Perhaps this hospital stay was a blessing in disguise.

It has moved us out of the impasse situation with the mask. Now we know that oxygen isn't really the solution for her, as her issue is one of ventilation and not oxygenation. We also know that blowby oxygen isn't making much of a difference (and we've just bought the oxygen concentrator...)

Fingers crossed, Vera will really get used to mask wearing before discharge. Then we can all breathe easier when we get home.

17 January 2010

On The Mend

Day 6 update:

For the first time since she came down with high fever 10 days ago, Vera smiles.

I was well enough to be there to catch it with Ian. We were so happy & relieved to see a glimmer of her old self.
Shortly after this video, she fell asleep for the next 5 hours and didn't awaken when we had to leave. She is evidently still weak, still having loose stools, and still needing suctioning. But the smiles are a sign that she's on the mend.

Thank you all for your prayers for her continued healing.

15 January 2010

The Silence is Deafening

I'm having the flu at the worst possible time.

I can't go to the hospital, the air con worsens the flu, and for fear of passing the bug to Vera.

News reports state that there is a significant spike in the number of flu cases this season. A second wave of the H1N1 flu is also upon Singapore. More cases have been reported at the hospital Vera is at. Pregnant women, given their lowered immunity, are at greater risk.

It is frustrating to be quarantined at a time when I'm needed most. I'm hoping Vera can stay in PICU till I get well. I'll need to be there when she's transferred to the normal ward.

Resting at home, I'm faced with the stark difference of not having Vera around. As Beth quietly goes about her chores, I can hear every sound amplified. The whirring of the fan, the running tap, the tippety-tap of typing on my laptop. The silence is deafening.

There is also little to do. I can only sleep so much. I go through Vera's photos. Watch her videos. Do some yoga stretches. Listen to my Hypnobirthing CD.

Today Beth said, "I miss Vera,"

So do I.

14 January 2010

Not Out of the Woods Yet

Day 4 update:

1) On Day 1, an X-ray showed infection in her upper right lung. Today, it shows that that hasn't cleared and the left lung is also infected.

2) Vera continues to struggle with copious amounts of secretions and maintaining her sats above 95. At one point in the day, they had to increase her oxygen requirements from 2l/min to 10l/min. It's now down to 2l/min again in the night.

3) She's lethargic most of the time, drifting in and out of sleep.

4) She's been having diarrhea for 6 days now, and her bum looks like they have crimson, second-degree burns.

5) Good things are that her temperature has come down and together with it her heart rate.

Because Vera was born with weaker lungs, they will have to fight even harder to overcome the infection. It will take longer too. So we can't expect overnight turns for the better.

13 January 2010

Still In ICU

Day 3 Update:

1) They have decided to keep Vera in ICU for another day as she still desats due to blockage caused by her secretions. Suctioning continues. However, she's been able to get a little more sleep than the day before. Her fever has come down and stayed down today.

2) Vera doesn't have H1N1.

3) We have been told to be prepared to learn suctioning. (I was so hoping I didn't ever have to learn this skill! Even Ian said after seeing how it's done: "I don't think we'll do suctioning at home on Vera," but I guess when it comes down to the wire, we'll have to harden our hearts and do what needs to be done no matter how traumatic it can be for Vera.

We appreciate all the messages of concern and offers to visit Vera, but only parents are allowed into ICU. Even then, we take the strictest precautions of wearing a mask and washing our hands with anti-microbial soap before going near her.

Also, please understand that we will not be receiving visitors when she is in the normal ward given the risk of re-infection.

We have been told that she may have caught the Pneumonia from a person who was a carrier but because that person is strong enough they do not display any symptoms of being sick and appear well.

We have also been warned that she may catch a bug when brought to the normal ward from isolation because of the exposure to other patients and visitors.

Let's hope we can get her home and away from all those hospital bugs as soon as possible!

12 January 2010

Upset Little Girl

Yesterday Vera was weak and listless. Today, she's at least starting to show some signs of protest.

She spent the morning trying to fight the nasal prong off her face. They'd switched to it from the oxygen mask. By late afternoon, she'd given up. (Good news for us!!!)

"What are you going to do to me now?"

She looks warily at whoever goes near her. She probably knows something unpleasant is about to happen. Like suctioning.

She absolutely hates anything touching her face now. (All my efforts at feed therapy down the drain?!?)

In the late afternoon, her fever came down for the first time. It's taken 6 days. Her main discomfort now is from the secretions which she is unable to expel. They build up fast despite the regular suctioning and chokes her up in her sleep. This is preventing her from sleeping, and she's really upset to be so sleep deprived. It is heart-breaking to watch.

Oh well, nothing much we can do now, except trust that she's getting the best care in the country. And that the little one will fight her way through this episode.

As always, thank you all for your thoughts and prayers for Vera.

11 January 2010

Vera is Hospitalised

Some days in your life you'll remember forever. Today is one of them.

You see, it happens to be my birthday. And what an eventful one I must say.

Today, my instincts told me that we had to bring Vera to the hospital. We were into the 5th day of a fever that refused to subside on antibiotics.

At 4am last night, I told Ian "I have a feeling we should bring her in," Her breathing was increasingly laboured and chesty. She was increasingly inconsolable. Her usually pink lips were becoming pale and purplish. Also, she kept arching to be laid down when carried.

It was a good thing that my mom was here for the day. Just before lunch, we packed up and headed to the National University Hospital (NUH) Children's Emergency.

I was cool and calm on the way, not expecting much to happen. We'd been to the Children's Emergency at KKH before when Vera fell from her bed. They'd take your baby's particulars. You'll answer some questions. You'll wait in the next room for someone to attend to your baby.

We knew Vera would be assessed, and probably have a blood test and X-ray ordered. I'd settle her in, and Ian could come visit after work. Little was I prepared for the drama that was about to sweep me off my feet.

The minute I wheeled a sleeping Vera into the ER, a nurse came and took her oxygen levels. This was what it showed: Desaturation to 58%.

"This baby needs isol!" The nurse called out.

I could hear from the tone of her voice that something was amiss. What was isol? Anything you don't understand sounds scary, especially in a medical environment.

"What is isol?" I asked quizzically. "Isolation," she said.

Just as I took out a summary of Vera's case history, she had already swiped it from my hands and together with two other nurses, were running with Vera in pram, leaving pregnant me to waddle after them.

Why is Vera being whisked away in such a panicked manner? Why does it seem as if I was watching a scene from ER?

My heart started to beat faster and faster. I was totally caught off-guard by the drama that was unfolding.

They disappeared behind a swinging door. I hurried after them and found myself staring at Vera in an ER situation. She was already on the bed (what in seconds?) A team of 6-8 medical staff were huddled around her. Wires were flying all over. Machines were beeping. They were speaking at breakneck speed to one another. Two or three of them were already setting a plug on her right foot.

One of the doctors addressed me. "Don't mind ah, Mommy, we'll have to speak as we do this," Above the bustle, they asked me question after question about Vera. I tried to answer them as fast and as accurately as they were posed.

Then suddenly my body just couldn't cope with what was happening. I started to panic, and felt a tightening in my belly. Baby started moving aggressively. I started to break down. That's when I knew I couldn't handle it alone and called Ian. "Please come," was all I could manage before I hung up. Because if I had said anymore to him over the phone, I was afraid my emotions would have gotten the upper hand and cause more of the contracting feeling.

"I need to sit down," I told a nurse. I immediate whisked out my MP3 player. It was the fastest way to calm myself down. I listened to the Hypnobirthing track and b-r-e-a-t-h-e-d. It worked. I calmed myself enough to go back and answer more questions.

By then Vera was given an oxygen mask, and her saturation was back to 100%. She was now awake (and trying to remove the mask, ha.)

By then my mom and Ian were there. Everything felt much better. I knew Vera was in good hands. A doctor came to assure us that she was stable. And would be transferred to the ICU for monitoring for the rest of the day.

The latest update is that Vera has Pneumonia, or a lung infection. She will be in hospital for probably another 2 days. Given her low immunity, she catches a virus from others so easily. She's currently isolated because they can't put her at risk of H1N1 in the normal ward. To minimise her risk of worsening, she will not be receiving any visitors until she's back home. With Vera, we just have to take the extra precautions. Thank you all for your concern and we hope to get this little girl back home soon.

Will update you all here.

08 January 2010

High Fever

One day Vera was fine. The next morning she had high fever. She wasn't near anyone who was visibly sick. No one at home is. The only 2 changes the day before is her going back to school, and a sudden cold change in the weather.

I was just telling a doctor the other day that Vera hasn't fallen sick in a year. I spoke too soon. (I should have followed the Chinese belief that you do not boast about your health!)

We've never seen Vera with fever so high before. It hit her at 39 deg C and has stayed up there into Day 2. The new neighbourhood doctor we brought her to see did not want to give her meds that would make her drowsy. So the girl has been sleepless for a day now. Just crying, choking, and crying some more. Refusing to be carried and refusing to be put down.

We welcomed the new year in the same way last year. Looks like history likes to repeat itself!

01 January 2010

Brand New Year, Same Old Issue

Here I am at 4am on the first day of the new year, awake as usual.

Nothing new to announce, only the same old issue to grapple with - Vera's Obstructive Sleep Apnea (OSA).

It has gotten significantly worse. Whether it's to do with the weather, who knows. We used to get by with her waking at 5am due to difficulty in breathing. Over the past month, there have been more consecutive bad nights, where she struggles almost on the hour, sometimes every half hour between 1-6am.

Which is why my body clock has self-adjusted. Automatically, I'm awake from 3-6am now. Because I know during this time, Ian is unwakeable, and Beth needs rest because she takes over at 6am when Vera awakens. I catch some sleep till 9.

Recap of duty drill: Vera struggles with breathing. Pick her up. Elevated, the blockage clears momentarily. Rock her till she settles. Put her down again. Reposition Oxybunny. Repeat if unsuccessful.

But after one month of missing the deep sleep hours, I'm sitting in bed staring at Vera and thinking: 'This is crazy'. (Or maybe it's good training for the breastfeeding hours when the baby comes?)

We know what the solution is - CPAP, biPAP, oxygen - we just can't execute it. Therein lies the frustration - Why do other parents manage to get their kids on the mask, nasal cannular and we can't with Vera? Did they struggle with their kid too, but overcame it? Are we not trying hard enough? Giving in too easily to her protests?

After a month or so of blow-by oxygen (which I think is not much help but the only thing she tolerates), I tried my luck putting on the cannular twice yesterday.

The enthusiasm of the initial days gone, feeling defeatist even before I started. Expecting her to fight me, and giving in when she did.

The effect of poor sleep on Vera is increasingly obvious. Her tiredness discourages her from working at physio exercises in the day. She refuses to do her favourite sit down/stand up thingie.

I could go on. But I think that's enough griping for one night (morning).