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.

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!

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

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.

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.

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.

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.

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.

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.

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!

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.

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.

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!

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).

Happy New Year To You!

"To all who love and think of me, may your new year be filled with simply joys and smiles like mine, however tough things might be. Thank you for what you've done to get me this far - special thanks to my milk mommies, auntie laura, auntie beth, teacher alfi and the wonderful people in my big family!"

Orthopaedic Update

We brought Vera to a new doctor for her 6 monthly orthopaedic check up today.

At the last visit, the xray showed a curvature of about 20 degrees in her spine. We wanted to know if it had gotten any worse, but the new doctor said to come back in another 6 months. He did not recommend that we do an x-ray today, and expose her to unneccessary radiation.

He mentioned that the first 4 years were the most crucial - that is, any deterioration would likely happen in this period - after that the spine will more or less stabilise, until the next growth stage in puberty.

He told us that for now, her scoliosis should be the least of our worries. That we should instead let her have lots of swimming, and focus on developing her mental capacity through lots of stimulation and play.

The Special Children

To all the special children I've had the honor to know,

Annabel, Brianna up in heaven, Mallorie, Akaiya, Alyssa, Zane, Lily, Annabel Leigh, Charmaine, Mathias, Seb, Rachel, Romulus, Sing Ying, Wenqi, Jonathan, Danielle, Isabelle -

You are in my heart this Christmas.

How Far We've Come

2009 is coming to an end and I'm feeling rather retrospective.

Around this time 10 years ago, in 1999, Ian and I became an item. We traveled far and wide - trekking in the Himalayas, diving in the Great Barrier Reef, driving through the mountains of New Zealand, diving some more (cos I couldn't get enough of shipwrecks and manta rays)...before finally settling down 5 years ago.

We got our own little pad. Our own little car. Worked hard on weekdays and played hard on weekends -rockclimbing, swimming, hiking.

And when it seemed like going places had somewhat lost its thrill, we decided to have a baby.

That one decision was to turn our easy, almost too easy, existence into disarray.

We were chosen to be parents of a child with special needs. A child who wasn't expected to live past her first birthday.

We were thrown into the deep end - thrust into a world filled with medical terms, equipment and procedures - Patent Ductus Arteriosus, duplex kidney (what the...), glaucoma, apnea, scoliosis, tube insertion, CPAP, oxygen concentrators...just to name a few.

Our marriage was put to the test. While I dealt with the blues, Ian put up with a wife gone bonkers.

This time last year, I was like a wound-up toy, working my butt off in the office, stressed out and struggling to cope with what needed to be done back home. Ian single-handedly took care of Vera, with ad hoc help from our families. Feeding Vera through a nasal tube was a constant struggle.

So much has changed one year on.

Today, Vera is nearly 2 years old. She flashes her pearlies in response to people and play, and charms the pants off those who love her. Feeding is much easier now with the button in her tummy. We've got help with the housework, cooking and Vera's care. I've stopped work, and am 6 months pregnant with a baby boy. More often these days, Ian and I go out by ourselves, just like old times. We celebrated 10 years together last month (picture above).

Who would have thought we'd go through so much and come through?

One thing I've learnt: Tough times puncture your life for a reason - to make you realise just how much there is to be thankful for.

Luvable Friends

A good friend brought her daughter to visit. It was so nice to see an older child so enchanted with Vera. I think Vera liked her too.

Walk in the Park 9

Despite her stuffy breathing, life goes on. We go to the park on weekends, because that's the one thing Daddy likes to do: Bring Vera to the park.

Here we're at East Coast Beach. The last time we came, there were 3 of us. Now there are four.

Ear/Nose/Throat Answers

Congestion, congestion. That's what we've been dealing with since the start of the cold season. Vera's been having relatively clear breathing in the day and able to sleep through most nights - until December started.

Now, her breathing is noisy when awake, and she's breathing mostly through her mouth. Nights have been fitful for her, complete with more choking and stuffiness. She's not sick, so is it the air? An allergy? What?

After nights of carrying, putting down, rocking, putting down...we really needed some answers.

I brought her to a pediatrician in the neighbourhood, hoping for some topical meds to give her some relief. No luck. The pediatrician insisted the problem was her Obstructive Sleep Apnea, and the solution was CPAP.

We know she needs CPAP. We know she needs to be on the oxy prongs. We also know we're too soft-hearted and have not been able to force them on her.

But could there be any other explanation for the congestion?

We brought her to see an Otolaryngologist (ENT specialist), who performed a Laryngoscopy on her. The probe looked like Vera's nasal feeding tube, but thicker, and with a camera and light at the tip. The little girl didn't like it going down through her nose and in until her voice box. I could see into Vera's airway on the screen, constricting with her cries of discomfort.

The scope threw up some new findings: It's not an allergy. It's not sinusitis. The ENT doctor believes it's something called Laryngomalacia. Although she has had a fundoplication, which is supposed to control her reflux, some acid was still coming up into the voice box and causing the flaps to swell. This narrows the passage and mucus/phlegm becomes harder for her to clear.

We got some meds (finally! It just feels better to be able to do something about a problem): Omeprazole for the reflux, and Sinupret - to thin the mucus, so it can hopefully flow easier. My eyes popped at the cost: $200 for 1 month's supply. Vera, you sure are a high-maintenance girl!

Right or wrong, at least we're getting some answers at last.

Once this Nose/Throat issue is more or less resolved, then we'll follow up on her hearing with an Auditory Brain Stem Response. We know she can hear, but it would be good to know how well, or how much she hears. She will have to be sedated for this test, so we're in no hurry to get this done.

Gaining Weight

Vera has her own growth charts for Trisomy 18. As you can see, the black lines deviate markedly from normal growth curves, especially as the years go by.

For almost a year, Vera was the same weight. But since we put her on Pediasure recently, she's been putting on the pounds. At 22 months, she's now 17 pounds (8kg), and 27 inches (70cm) tall. This puts her in around the 80th percentile for weight, and 50th percentile for height on the Trisomy 18 charts. This means we can stop worrying about weight gain for now, and start to take her off Pediasure, which is high caloric and VERY sweet. Too sweet for even myself to take. So much sugar can't be good for little ones in the long run. She might go the other extreme and become fatty!

'Tis The Season

Vera gets to see a Christmas tree in her home for the first time. Daddy's friend gave us the twinkling lights, and we borrowed the tree. We're trying her out on the walker too, and for the first time, she sat for about 2 minutes, moving a few inches backwards, before struggling. It would be so good if she could take to the walker for longer, so she can explore her surroundings better. Well, that'll have to be in her own good time.

Vera Turns 21

Months, that is.

I said to Ian, 'We should celebrate...after all, we might not get to celebrate her 21 years.'

We've gotten lazy with her monthly birthday-dos. So I'd just mark it with the changes that have gotten her to where she is today:

She's started to grip things and look at them.
(achievement of the month)

She's started to blow raspberries.
(saliva bubbles)

She's beginning to show a preference for Mummy vs Daddy.
(she fixates on me when presented with both our faces)

She's putting on the pounds steadily.
(finally. Her weight had been stagnant for a year!)

She's getting lazy.
(sitting up used to be fun, till the novelty wore off)

She's enjoys school now.
(classtime, therapy time, pool time)

She's babbling more.
(we can tell the different sounds for "lonely", "complaining", "sleepy")

Some things haven't changed:

She's not having anything on her face - mask, nasal prong whatever.

She still does her 'towkay' thingie whenever she's lying down.

She still enjoys tapping.
(your face if you're near)

She's still Daddy's little girl.

Drum Roll Please

After weeks of suspense, here are the amnio results...

46: Normal pairs of chromosomes
XY: It's a boy

A little brother for Vera. A little Ian for me.

How Mothers Learn

From other mothers.

This great little tip from Connie to fix the oxygen tubing to a soft toy made me go "Now that's a great idea why didn't I think of it?"

Now we simply need to reposition the 'OxyBunny' when she turns during her afternoon nap.

Hooray for helpful moms!

Afternoon Nap

Turns out the little feisty one is a light sleeper like me. No nasal cannular going anywhere near her during her mid-day shut-eye. I tried, but she wakes instantly.

So rather than risk depriving her of sleep, I'm trying this out. Of course that means I have to watch her and reposition the tube whenever she turns. I wonder if this is effective though. Meanwhile, we'll just have to press on with the prongs in the night.

Interrupted Sleep

"Once you're a parent, you never really sleep again, even when you're sleeping." - Hope Edelman

I thought we'd all sleep better with the oxygen. I guess I celebrated too early.

As with all equipment, there is always an adjustment period. Like getting used to ng feeding,and gtube feeding. Just that this time, sleep is involved.

The past few nights have been an eye-opener. Literally.

I wake up to find the prongs out of her nostrils, or bent (they're soft silicon) at the nostrils, hissing with air - this is the main reason for her fidgeting in her sleep. Other times, I wake (she wakes me with her disgruntled tossing) to find the tubing entangled in her arms. Or the tape coming off her face.

Each time, I've had to sort her out, and rock her back to sleep. This happens approximately once every hour. To a point where I think, "What's the point of sleeping?" and the quote above comes sharply to mind.

The regrettable fact is that I am an extremely light sleeper. Turn on a light and I wake, grind your teeth in your sleep (Ian does) and I wake. I've been brought up on the Chinese mantra "zao sui zao qi shen ti hao" : Sleep early, get up early, good for health. All my life, I've been a nine-hour-a-night sleeper, starting at 11pm.

Now, I don't know anymore. I try my best to nap as long as I can in the day (that's the great thing about having a helper). So I can get up when Vera needs attention. But come 3am, my system is ready for shutdown. And Beth wakes at 6am to take over. So between 3-6am, if Vera needs attention, I become the grumpiest, foul-mouth night animal. Because I can't get up, and I can't sleep either because of the disturbance.

It's interesting what happens to my mind when I'm sleep deprived. In my stupor, my thoughts are still racing, in a downward spiral. This can't go on! I need to sleep but I can't! It will just get worse in my third trimester. And even worse when the baby comes! I'll be feeding through the night! It's all gonna go downhill from here!

My heart races. I hallucinate. I think I was ranting away but I don't remember what I said.

The baby inside me rouses, making it clear that he or she had been disturbed. The movements are clearly agitated. Well done, now I've awakened someone else as well.

Fingers crossed, the little one in the womb won't take after my current sleeping habits.

Joy in Motion

Just like every other kid, Vera loves movement. And because she isn't as mobile as normal kids, we make sure she gets as much from us as possible.

However with my growing tummy, physio with her is becoming a little more strenuous (and clumsy) for me. But still, I'd much prefer doing physio for her than for myself, ie prenatal yoga stretches. I keep saying Vera's getting lazy with her physio exercises. Well, I'm not much better myself!

Flutterings

Oh those little flutterings have started.

The ones that make you realise for certain there's something alive inside you.

The medical term for it is 'quickening' - I call it butterflies in the stomach.

If there's one thing that makes pregnancy worth it for all its other unpleasant symptoms, it is this.

The movement that springs from within you - and you can only imagine what aquatic acrobatics are being performed.

First Oxy Night

We got our oxygen concentrator rental set yesterday and tried it on Vera last night.

It was a big, bulky machine, larger than a desktop CPU. And as Sister Rachel had pre-empted us, it was noisy. Think fish tank motor running through the night, giving out regular sneeze-like sounds intermittently. We had to place it in another room, close the door, and run the tubing to our room.

So we got round to 12 midnight where - we hoped - Vera would be in deep enough sleep to take the little instrusion lying down. The first time, she fought it off. The second time, we managed to get it on, with daddy rocking her back to sleep. We secured it by tape on her upper cheeks as suggested by Cathy (thanks for the advice!) and hooked it around the ears.

Vera slept through the night and seemed to toss and turn less. Once or twice in the night the prongs came out of her nostrils and I put them back easily. Definitely less painful than the CPAP mask!

This morning, she didn't wake up struggling with her breathing as before. Fingers crossed tonight will be just as smooth sailing. Hopefully she'll get used to it within the next week or so.

Looking bright and well-rested this morning.

Gotta Have Oxygen

So there. Vera's gotta have oxygen via a nasal prong when she sleeps. Mommy's a little disappointed to hear that the oximeter study reported regular bouts of desaturation through the night to the lowest of 68. So much for staying up and looking at numbers in the golden nineties.

CPAP is more effective in dealing with the obstructive apnea, whereas giving oxygen does just that, it doesn't clear the obstruction. But no choice, Vera doesn't want the mask. Smart girl. I'd go for the nasal prong too, it looks much more comfortable.

Oh well. Just gotta get used to Vera's new look at night. Not exactly looking forward to having our first permanent machine at home. Fingers crossed she'll accept this without the fuss of the CPAP mask.

VivoCity Outing

My dear friend Bridgette suggested a visit to Vivocity last weekend with little Val.

Singapore is filled with shopping malls and that's inevitably where families end up - for the cool air-con comfort in a desperate bid to escape the tropical heat. But Vivocity is different. Its rooftop is a vast expanse of wading water, overlooking the sea. Children get a place to frolic, while parents get a breather from the deafening drone of the shopping crowd.

It was Vera's first time there. We make it a point to bring her out, even though she doesn't quite enjoy the hot, bright outdoors. But in the glow of the setting sun, I caught this shot of daddy and Vera. It says so much without words.

The Towkay

Vera's learnt to 'keow kah' like a 'towkay' (big boss).

It's always the same right leg onto left knee.

She does it everywhere. Lying down, sitting up.

Her hands are now firm friends with her feet.

Night No.3

I could stare at it all night.

The oximeter is so hypnotic - the invisible sweeping bar moves left to right, left to right, and you can't help but be transfixed by it.

Watching the numbers change is like watching a 'live' telecast. Vera struggles: the numbers run amok. Vera settles into deep sleep: the number stays pretty constant.

An alarm is supposed to sound off at preset levels. I'm thinking, if I had an oximeter at home, I probably wouldn't get much sleep, given the light sleeper that I am. Or I guess I'll just learn to manage.

Night No.3 and boy am I glad it's only 3 nights. But we have the machine till next Monday so we might just keep it on to monitor for a bit more.

In 3 weeks' time, we'll know if Vera needs to be on oxygen or not.

Night No.2

Thanks to the heads up from Cathy, I now know that the O2 levels have to be not just in the 90s, but the high 90s, like 97-100.

It's night No. 2 and Vera seems to be hovering around 95. She's never hit 100 as far as I've seen. When she tosses and turns, it's in the lower 90s.

She's been asleep since 7pm so I'm keeping my fingers doubly crossed she will sleep till 6am. Meanwhile, I'm gonna get some shut-eye.

Night Mission

Just to recap, here we are, 6 months since Vera's sleep study with no CPAP and a severe Obstructive sleep apnea diagnosis. We paid a visit to her respiratory doctor yesterday and she didn't push on the CPAP either, hearing how difficult it was to get Vera on it.

Instead she sent us home with an oximeter. Over the next 3 nights, we are supposed to monitor Vera's oxygen saturation and heart rate. If levels are found to be in an acceptable range, we'll leave things be, if not, we may have to give Vera oxygen at night.

During the sleep study, I remember seeing O2 levels in the 60s. Her lowest was found to be 52. It's 4am on this first night and we're seeing levels in their 90s! I can't believe my eyes. Is the monitor faulty? Is she just having a good night? How is it possible? I'm waiting expectantly for it to fall.

Good old Ian has done his shift from 11pm - 3am and gone to bed. Mummy's turn to stay up...

Chewing Gums

As part of the long journey towards getting Vera to eat orally, we have to improve her jaw movement by getting her to bite and chew on oral therapy tools.

She'd never been introduced to a pacifier since birth, since there was always a feeding tube in her mouth. But I bought this GumdropTM pacifier from the States (recommended by a Tri18 mom thank you!) and it's turned out to be great for therapy. It is translucent and is the only pacifier I know with a hole that allows you to view tongue and jaw movement.

At first, Vera refused it and kept gagging. Then, I thought, 'Hmmm...since she likes to chew on her finger, maybe if I put her finger in it, I could trick her into thinking it's her finger she's chewing!'

You & Me

Vera has been ensuring that I have a happy pregnancy.

She makes me sing, laugh and smile. She entertains me with her several antics - like scrutinizing her hands, smiling to herself, trying to turn over (unsuccessfully) superman-style.

With help at home, I am really enjoying Vera. Now, my main job is to carry out her therapy daily, bring her to school and for hospital visits. And of course to feed myself into a chubby mummy!

Blood Pressure Normalised

Vera had a renal (kidney) ultrasound done today and everything looks okay. It is recommended that she gets one done every 6 months to look for Wilm's Tumor, something that commonly affects the kidneys of Trisomy 18 kids.

The first signs of something amiss in the kidneys is a higher than normal blood pressure. I'm happy to say that Vera's blood pressure seems to have come down to normal levels. They were on the high side in her first year, so we were on the lookout for hypertension. But the numbers are looking good now.

So it looks like the main issue left is her Sleep Apnea. We will be consulting with her respiratory doctor next week on the consequences of not using CPAP. Fingers crossed her breathing will get better as she grows and this issue will resolve itself.

Bad Eye Getting Better

All this while, we were content with Vera having vision in her good left eye. Her right had practically no response since birth as the haze covering it is thicker.

Today, at her routine 3 monthly Eye Doc appointment, they found that her right eye is now responding. The haze has cleared visibly, without medication.

Cards like these were flashed in front of each of Vera's eyes to test their movement. It's called a Grating Acuity Test. The better the eye, the narrower the lines it can detect. Her reading was L: 20/470, R: 20/960. I guess that means the right is probably half as good as the left.

Numbers aside...whoopie! Sight improvement is big for us and Vera. There's still a long way from good vision but at least it's a start.

In the past, when people asked, "Can she see?" I'd say "Only with her left eye".

Now, I can happily say: "Yes she can!"

News To Share

I've been holding this off for some time now - 3 months actually, but am now more comfortable to share the news.

Vera is going to get a little brother or sister.

I am now 13 weeks pregnant, just into my 2nd trimester.

To be honest, we hadn't planned for another baby anytime soon. But as I have come to realise, things to do with life are often times not up to us mere humans to control or decide upon.

While many are over the moon when they learn that they are pregnant, I am all too aware of what could possibly go wrong. Like it or not, having a previous 'scary' pregnancy diagnosis changes things quite a bit. The mind functions on past experience, and the experience leading up to Vera's birth had been fraught with anxiety and uncertainty.

Unknown to many of you as well, is the 8-week miscarriage that I had beginning of this year. Often, fetuses spontaneously abort because of abnormalities that render it incompatible with life.

So it is with tempered joy that I approach this pregnancy. What mother wouldn't want to be overjoyed? I try to be, but it is hard. Instead, I have adopted a quiet optimism.

This baby has already made it past the first trimester where miscarriages usually happen. It's past 12 weeks. It wants to live. It's a good sign. I tell myself.

The extreme fatigue, grumpiness, nausea, and hunger pangs of the 1st three months have also subsided. So these days, I'm in better spirits and less tired. Plus, my helper has come at the right time to help me with Vera's care. Things are looking up.

Given the history, I will be undergoing an amniocentesis sometime next month. We would know if there are any chromosomal abnormalities.

We would also know if Vera will get a baby brother or sister.

Stoma Care

Thank goodness for home care nurses.

Vera's stoma area had been slightly inflamed for nearly a month. It itches and she keeps scratching at it. We tried everything. Changing gauze regularly to keep the area dry, applying the supposedly 'magic powder' Stomahesive...all to no avail.

It should have occurred to me to call her home care nurse Sister Rachel earlier. She offered some cream for the area - Baneocin - and I must say, THIS is the magic cream. In one day, the redness has subsided to a dull pink.

Thank you, Sister Rachel!

P.S. Vera's GI doc was on Medical Leave so we saw a stand-in. He commented that he was very impressed with my medical knowledge - of stoma care, usage of medical terms. Hmmm...do doctors not expect parents to be actively involved in their children's care? Anyway, I replied matter-of-factly: "My daughter has Trisomy 18. I HAVE to know everything."

Spidergirl

Vera's legs have strengthened, but her arms are still weak. We do this anyway, as she seems to enjoy the movement of extending her legs.

She's been trying to push herself up, arching her spine - and getting frustrated, and exhausted by the effort. It's a good sign though that she wants to try. You'll get there, little girl. Just keep trying.

Hydrotherapy at School

Vera has become increasingly comfortable in the water since she was introduced to the pool a few months ago.

Yesterday she had a solo session with the school physiotherapist. For nearly 45 minutes, she was totally relaxed and went through all the exercises without a struggle.

Exercises like trunk rotation, crossleg hold, forward/backward recovery, irritated seaweeding (yes, interesting name) were geared towards improving her stability and mobility. Can't wait to practise the new moves on her in the water!

Happy 19th Month

Vera is now 19 months old. I didn't celebrate her 18th month, so it was time to get them balloons blown up this time. Plus a special one for Brianna from Vera. Mini cake courtesy of Vera's grandma.

Buttonmare

Last night, I dreamt that Vera's button came out.

We've been having a couple of days of inflammation around her button site, plus leaking that has started again. Both have been bugging me during the daytime.

So I'm not surprised it manifested in my sleep.

I was holding on to the top of the button and it simply came off. I stared into the stoma hole. And saw the lower mushroom-like part falling in two pieces into a dark bottomless pit.

I called the home care nurse. She told me she had a meeting later and I had to come immediately before it. I called Ian, the phone took ages to dial. I tried and tried and tried. Her next feed is coming up and we need to get it done like right now! I called my folks and they magically appeared from another room. What's the matter? they said. I broke down. Vera's button came off and we are still here! My knees buckled and I sat on the floor in tears.

I woke myself up saying that aloud. It was 9am. (Bad idea, sleeping in late.)

I wonder if other parents have such equipment-malfunction mares.

Hold My Hand

I didn't know what to write but I just felt that this is such a precious photo, so I'm posting it. There's something about the contrast between a new life and an old one that's simply compelling.