31 December 2009

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!"

29 December 2009

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.

24 December 2009

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.

22 December 2009

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.

18 December 2009

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.

15 December 2009

My New Seat



Vera had been sitting in a rear-facing infant car seat since birth.

But now she's grown to a length whereby her legs no longer have space to stretch out.

It was time to get her a new front-facing car seat.

For the first time, she could watch the world roll by before her eyes. No more staring at the boring back seat.

I think she likes the new view.

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.

13 December 2009

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.

03 December 2009

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!

01 December 2009

'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.

26 November 2009

Tub Time

School's out, so no more swimming for a while. Since Vera likes water, we let her soak in this big red tub. A piece of tegaderm waterproof plaster prevents water from going into the g-button. Her legs are longer now and there wasn't much space for her to stretch out. I think she still prefers the swimming pool.

21 November 2009

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.

16 November 2009

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!

13 November 2009

Perseverance Pays Off



The focus this past month has been to improve Vera's grip. Beth would work on it during feeds, I would continue during play time in between. We tried different objects and found that she manages long and slim better than fat and round ones. It seems like she's starting to get the hang of it. Lots of work but well worth it!

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.

11 November 2009

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.

08 November 2009

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.

07 November 2009

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.

02 November 2009

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.

29 October 2009

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.

24 October 2009

Stand Tall



Our little friend loves to stand. And now standing up is the in thing for her. She is able to do it without me raising her, just lightly supporting her at the shoulders. When she rises, there's a sense of accomplishment on her face. And also on mine.

21 October 2009

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.

16 October 2009

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.

15 October 2009

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.

14 October 2009

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...

13 October 2009

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!'

It worked. Hehehe.

09 October 2009

Getting A Grip

We've always been delighted that Vera loves to tap her hands. She'll tap her toys, her knees, your face, but she doesn't quite know how to grip things and hold onto them yet.

So the goal now is to stimulate her hand muscles and help her learn to grasp things and subsequently learn to reach out for them.

Textured toys and materials are best for this. But surprisingly, it is an oral swab called the Toothette, that elicits the most active response from her fingers. She stares at it, grips it, tugs at it, loves being stroked by it - what a great little 45 cent tool.

05 October 2009

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!

03 October 2009

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.

01 October 2009

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!"

30 September 2009

How To Make Vera Smile

Easy. Just move her arms and sing a song.

Here, Ian sings Vera a traditional Chinese ditty complete with hand action which simply tickles her funny bone. Seeing how effective it is, I've started doing it as well.

Daddy says it's copyright infringement.



P.S. Thank you all for the pregnancy well-wishes and the overwhelming support along our journey with Vera thus far. We hope to share more good news in the coming weeks.

27 September 2009

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.

25 September 2009

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


I can't crawl but I sure like to creep.

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.

24 September 2009

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.

19 September 2009

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.

09 September 2009

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.

07 September 2009

Hands & Knees

Finally, Vera's reached pole position for crawling.

Not that she's doing any of it yet, but at least she lets us put her in this position...happily. Her hands have gained strength gradually but are still not strong enough to support her weight unassisted; they buckle if I take my hands away. But I'm sure that will improve with time.

Meanwhile, she has also shown signs of wanting to walk, can you believe it? When we hold her under the arms in a standing position, she will lift one foot. When we shift her weight and place it down, she'll lift the other. I am so amazed by this little girl.

Slowly surprise us, Vera. The satisfaction is sweeter for the wait.

04 September 2009

Her Heart is OK

Vera has many doctor's appointments.

But the one that I approach with anticipation is always the one with her cardiologist. After all, the heart is her engine room.

Which is why I was relieved to hear from the very experienced pediatric cardiologist Dr W at KKH that Vera's heart is okay.

There were some abnormalities detected though - the 'door' letting blood flow from the heart to the rest of the body had 2 'flaps' instead of the normal 3; plus, there was a tiny hole at the top of her heart (gasp) - BUT (thank goodness for buts) they were not causing any problems at this time. Dr W, however did add that "whether it would later on, we don't know". Well, with Trisomy 18, you get used to living with deviations and disclaimers.

I'll take it.

During the echocardiogram, I stared at the monitor in awe at Vera's beating heart. Drumstick-like flaps danced in perfect synchrony with one another, like pistons in a car. No one there had any idea how precious each beat was to me.

Beat on, little heart!

Brianna

Many miles away
Tri18 takes Brianna today
Without warning
Without hesitation
Without time enough for goodbyes

But nothing can take away
The memory of your beautiful eyes
Your porcelain skin
Your smile a burst of sunshine

Brianna you'll live on forever
Because you now live in our hearts.

27 August 2009

Day Out

Today, for the first time, I dared to take time out, leaving Vera solely to my new helper and my old grandma.

What did I do? What the typical Singaporean woman does - head for some retail therapy at Orchard Road.

It seemed like such a luxury just to be in town - to not be working on a weekday, and to have someone trained to do the works - feeding, bathing, rocking Vera to sleep.

I saw many "tai tais" - well-heeled, well-dressed, well-made up middle-aged women of leisure at a Bobbi Brown make-up workshop. I thought to myself, they must be so free. It seemed like looking good was probably what occupied them on a daily basis.

Unlike them, I was dowdily dressed in yoga pants and broad brown sandals, my hair flat and bodiless...hardly the do for strutting down the famed shopping street. I had "Stay-Home Mom" written all over me!

Years ago, I would have been aghast at my own sloppiness. But motherhood changes your self-image. When there's so much else on your plate, what people think of the way you dress just falls to the bottom of the pile.

Nonetheless, anyone out there keen to sponsor a make-over for this frumpy mom?

26 August 2009

Poo Poo Position No.1

Babies with low muscle tone sometimes have difficulty moving their bowels. For Vera, what helps is lots of I-L-U tummy massaging and some water between feeds. We've also found that the position above helps to coax the precious gold out. So far, she's poo-ed twice standing like this. And I get a direct whiff of the aroma!

23 August 2009

Give Her a Handicapped Child

This poem describes me to a T. It made me feel like I have been chosen to have Vera.

T
HESE MOMS SHARE SPECIAL GIFTS

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecelia. Rudledge, Carrie, twins, patron saint...give her Gerard. He's used to profanity."

Finally he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious, "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world, and that's not going to be easy."

"But, Lord, I don't think that she even believes in you."

God smiles, "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods, "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says Momma for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised in midair.

God smiles, "A mirror will suffice."

Reality Hits Home

Vera turned 1 and a half years yesterday. But I am filled with sadness today.

Because little Brianna was doing so well, and now she's suddenly having blue spells and going in and out of hospital.

The reality hits home for me - that for Trisomy 18 babies or children, no matter how 'well' they might seem, there is just no guarantee. (Come to think of it, nothing in life does right?)

And as a Trisomy 18 mom, I live with a 'disclaimer' every day. That no matter how happy and thankful I am with Vera's current state, I know I need to be prepared to give it all up someday, perhaps even suddenly. Perhaps it is my defence mechanism - the need to preserve my sanity. That's why ever so often, especially in wee hours of the night, I play over Vera deterioriating in my head, and play over myself letting go. I know this may sound like really negative thinking, but it's just my way of coping with the uncertainty of the future.

I was just happily singing this song to Vera the other day, and burst out in tears without warning.

"You are my friend,
Though we're miles apart
I am still with you
For always you will be in my heart.

You are my friend,
And I call your name,
Though it's not the same,
Forever you will stay in my heart.

Wherever you go, I want you to know
There will always be, a you and me cos
You are my friend, till the end."

Of course I experience the immense joy of Vera, but sadness is always looming somewhere in the back. It's just a reality Trisomy 18 parents have to live with.

Joy, sadness. So opposite yet so much the same thing.

19 August 2009

Food Tasting



It's high time to start Vera on semi-solids, so mommy got started again, with some liquidy rice cereal. The little girl realises it's not water, spits it out, and takes it in again. Then lets her finger do a little bit of taste testing.

She took about 5 spoonfuls. Incentive for me to keep up the therapy!

Update

Just to say that nothing much's been happening around here with Vera, hence the lack of posts. She's her usual smiley self most of the time, not really improving much physio wise, not really improved much feeding wise, not really putting on any weight either despite increasing her feed amount. Mommy's been very tired recently and hence have slackened on her physio and feed therapy. Luckily, we've got a new Philipino helper called Beth who now helps mommy with all the household chores and cooking, so there's welcomed relief there. At 28, she's young and energetic, unlike me! It's amazing how your energy levels drop once you get into your thirties. Meanwhile, we're happy to be at home, safe from the threat of H1N1 that's now reached a peak in Singapore.

10 August 2009

Forever Young

Vera has an immense effect on my 88-year-old grandma.

Somehow, she makes her younger. When granny cajoles her, she sounds like a little girl with a high-pitched voice. She gets down on all fours to play with Vera on her mat. She smiles a lot too.

I sometimes wonder who will outlive the other. It's just a fleeting thought. Both of them, so precious to me, to be treasured more, for time is not on their side.

Walk in the Park 8



With the H1N1 flu going around, the safest place to bring Vera is the beach. Here we are at Pasir Ris beach, just a 7 minute drive from our home. Yet another quiet, peaceful outing with Vera.

07 August 2009

The Haze is Back

The dreaded haze is back to haunt us.

Every year at about this time, smoke from primitive slash-and-burn activities in Sumatra, Indonesia blows over to Singapore, and it's hell on our respiratory systems. I'm exaggerating, but hey, we're losing the basic need for fresh air and breathing normally! My nose is stuffed up, it's hotter than usual, and we put up with the smell of a burning fire the whole day.

Vera's not taken well to it either, as I had expected.

She was up from 2-5am, struggling to breathe through her blockage. Daddy had the unenviable task of carrying her in the wee hours. Being more upright helps.

Arrgh! Some things (well, actually most things) are just beyond your control.

27 July 2009

Heads Are Made For Shaking



We were worried about Vera's torticollis in her first year, that her neck muscles on one side would be so stiff her head would slant to one side.

Well, here is the little girl, surprising us with her latest discovery that heads are good for shaking. She's doing her own stretching exercise now!

Like the song says,

'Guess things just turn out after all,
it's just another ordinary miracle today.'

25 July 2009

Be Strong Brianna

Our friend with a lovely little girl named Brianna has been experiencing the much-feared 'blue spells' that all doctors tell parents about when they first break new of the Trisomy 18 diagnosis.

At the time of Vera's birth this was what we were told:
In time to come, babies with T18 would have frequent apnea spells. This happens because the brain sends faulty messages to different bodily functions. Hence, she may "forget to breathe" and have more and more frequent "blue spells". "When you open up her blanket and don't see the rise and fall of her heart after 20 seconds, it's not a good sign," they added.

No parent should have to watch their baby turn blue. Please send your thoughts and prayers to this beautiful little girl who has been giving such hope to all of us with Trisomy 18 babies.

24 July 2009

Ms Triathlete

"Here comes participant Vera fresh out of the swim leg in record time,
let's give her a big ROUND OF APPLAUSE!
"

Vera tried 'walking' on the floor of the pool in school for the first time today, with the help of her teacher. Mummy got the chance to fantasize about her future.

23 July 2009

Phlegm 911

Phlegm builds up in Vera every day and she is uncomfortable until she vomits it out. This now happens at least twice a day, once in the morning and once before she sleeps. We are so thankful she has learnt to cough it out.

Phlegm calls for an emergency response. When you've had enough of changing clothes, bedsheets and pillowcases laced with thick, gooey puke, you learn to 'catch the moment' before it happens. We now have these white plastic bowls placed all around the house. At the first sounds of retching, I bolt like a deer to her side and place the bowl by her mouth. Speed is of the essence. So far, there have been so many 'saves' that I probably could make quite a good goalkeeper.

22 July 2009

Happy 17th Month

Dear Vera,

You turn 17 months today. This past month, you've become skinnier and lighter. You've lost some weight because you had the runs for nearly 10 days. Probably because mommy tried to change you to another formula milk too quickly and your system could not adjust to it. In getting you onto a milk that would help you gain, it made you lose weight instead. We'll have to treat your body more gently from now.

This month you became more 'knowing'. You seem to know - yes it's not just being aware. You seem to know mummy is trying to make you laugh, and you smile with anticipation. You seem to know when mummy scolds you (yes, I do) for fussing non-stop at night, and you stop (for a while). You seem to know when it's physio time, and you try to play along (for a while). You know certain songs when you hear them, because you'd break into a smile. How much do you know? I think you know our love - and that is all the language we need.

Happy One-More-Month, Vera. What a fun-filled, poop-filled month it was.

20 July 2009

You Light Up My Life

Daddy loves to show Vera the lights at IKEA.
Mommy thought they'd make for some nice shots.
Enjoy.

15 July 2009

Tummy Time



Okay. Let's get some turning radius, here we go......
Ooh. (puff puff), now gotta pull that hand out...a back turn for leverage,
and now for the final push...up, Up, UP...YES...oh, oh... eeeyeoww...bom.


This is how Vera has improved from the first time she rolled onto her tummy 7 months ago. It is so satisfying to see her wanting to move, wanting to push the limits of her limbs. They are growing stronger, slowly but surely.

13 July 2009

The Power of Touch

When Vera was born, her fists were tightly clenched, her second fingers overlapping the third. These are characteristic of Trisomy 18 babies.

We refused to believe her hands would remain closed for good.



After 16 months of therapy - lots of hand-holding, massaging, clapping, stroking - Vera is able to keep her palm open and clap with us for a little while. We look forward to the day she can clap on her own.

08 July 2009

All Lives Intersect

One of my favourite authors is Mitch Albom of Tuesdays with Morrie fame. I had a rare chance to re-read his latest book The Five People You Meet In Heaven while Vera was asleep, and came across this poignantly perceptive passage:

"Did you ever wonder? Why people gather when others die? Why people feel they should?
It's because the human spirit knows, deep down, that all lives intersect. That death doesn't just take someone, it misses someone else, and in the small distance between being taken and being missed, lives are changed."

07 July 2009

The Value of Existence

The value of existence varies.

When existence is threatened, our perception of its value changes.

An animal that's endangered or close to extinction attracts far more attention than one that is not. Similarly, a person who is dying receives a lot more time from dear ones compared to when hale and hearty.

Same goes with Vera. Before she was born, we had intended to put her with a nanny while both of us continued to work. Now, given her expected shortened life span, time with her seems to take on far greater value. Also, by being the rare 10% to survive beyond infancy, she is giving us time. How can we not do the same? I often remind myself that while others have a lifetime in the 'country' of their children, Vera is but visiting us on a holiday. She deserves to have the time of her life.

06 July 2009

I Can Sit Up

Hey, hey, hey...now this is a different view.

Finally, Vera is able to sit up on her own. Not for long, maybe 15 seconds but it's already wonderful enough a sight for mommy and daddy to behold. Here she is doing 'tripod sitting' - supporting her weight with her hands in front. Looks stable, right? Until the little girl arches backwards or tips to the sides. Although the new view is interesting, she knows lying down is still far more relaxing.