Piggy & Teddy

This is a book well-loved by Daen. It tells the story of PiggyWiggy and Teddy, two friends who are quite the opposite.

But at the end, though they spend lots of time apart, they are still best friends.

I thought this would be a good way to have Daen understand his relationship with Vera. They spend most of the time apart - he goes to school and she stays at home, and they can't play and talk with each other.

So I got him these:

Piglet from Winnie the Pooh, and Teddy from IKEA. I tell him that the Piggy is Vera and he is the Teddy. He knows that for a fact now. And we act out how they love each other, and sleep in bed together, which in real life he doesn't do with Vera cos he'll be climbing all over her.

Once in a while, we catch spontaneous acts of 'sayang'. It really warms my heart. Through Piggy and Teddy, perhaps he'll know he have Vera with him, even when she's not.

March In Pictures

Finally, a window of time to blog. At 5am in the morning!

I'm on a pitch and that means crazy hours...for a couple of days.

Lots of good memories were made in March.

We were invited to little Vera's One Year Old party. This picture is worth a thousand words.

Two Veras surviving Trisomy 18 on 24th March 2012, with their proud parents.

Then Daen turned two. We had a simple celebration at home.

I love it that Vera was looking at the cake. (Serene, she can still wear the T-shirt you made for her!)

We brought him to the Singapore Flyer, the 'biggest observation wheel in the world' as they claim.

Daen took a step back, thinking he was going to fall off.

In the background is Marina Bay Sands, now a Singapore icon

Meanwhile, Vera continues her Early Intervention at Rainbow Centre, improving slowly but surely.

May the spell of good health for all continue into April!

Four Day Week

I've gone from freelancing to a four-day-week full-time job.

In my line of work, where the pace is known to be frenetic, it's sounds almost too good to be true. 

Well, we'll see how it pans out. 

If it works, I'll get the best of both worlds. Steady income for the work which I love doing, and extra time for myself and/or the kids. After all, who hasn't dreamed of working 4 days a week (albeit for lesser pay)? To me, as a mom, it is just right. Enough to give me a sense that I still have somewhat of a career, and not to the point where I feel like I'm shortchanging my kids.

I guess it's a step in the direction of that elusive 'Balance' we all try so hard to achieve.

Of course, it's going to get tough when the kids are sick. But hopefully, given the more flexible working style of a small company, I'll find a way around it (like work from home at times). It's a real plus too, that the office is a 15-minute drive from home.

To be honest, I never thought this day would come. When I quit and became a stay-home mom to care for Vera, I really thought I'd left my career behind for good. And then when Daen came along, adland became even more of a faraway land. 

Three years on, with a good help who loves Vera, and a good childcare for Daen, I can firmly and finally step back into the workforce.

I've always thought I'd make a better mom if I'm working. I've learnt that not every woman is cut out for the extremely trying, no-let-up job of a stay-home mom. Sometimes I think it's a shame, that as modern women, taught since young to focus on our education and careers, we no longer see ourselves as existing simply to birth and mother our children, as how it was a few generations ago.

A Simple Celebration

Thank you all who care most about Vera.

Thank you all for cheering her on as she grows, in person or through this blog. Your support, online and offline, are much appreciated.

This Tri-er is Four!

Slept well, all smiles ready for school on her birthday.

One of Vera's pet past-times, making a 'siew mai' with her lips.

She tires by the time it comes to cake cutting.

Hooray! We're not in hospital!

A Problem With Her Foot

I brought Vera to see the Orthopaedic surgeon today. My concern: A feeling that her spine was getting increasingly curved, and that the bone in her left foot was increasingly protruding.

To my dismay, the surgeon believes that it is caused by us doing too vigorous stretching of Vera's foot. Due to the extreme tightness of the muscles above her heel (where my right thumb is), we may have inadvertently cause the bottom joints to "break" and weaken when we force the foot to stretch upwards.

The surgeon thinks that surgery might be needed to lengthen the muscles just above the heel. He also did a check on her back and confirmed my suspicions: her spine's curvature has increased. By how much, we shall only know in 3 months' time (end of May 2012), when she's scheduled for an X-ray (spine and foot).

Weight Loss

I lost 3 kilograms in a span of 2 maidless weeks.

The tummy's tucked in. The trousers are loose. The collarbones jut out more.

Just by looking after Vera.

It was extremely draining, but well worth it. I never thought I'd be able to lose the pregnancy paunch after so long, even a bit of it, ever. Not without an exercise regime. And now Viola!, I'm an 'after' picture!

The babies that make you gain weight, eventually help you lose it.

Life works in wonderous ways.

Maidless

We are maidless for 15 days as our helper is on home leave to the Philippines.

Any parent will tell you that being maidless after you've come to depend on them 24/7 is no joke.

I struggle to meet the feeding schedule I myself set for Vera. Ending up missing feeds and having her wake up at night thirsty/hungry.

I would be first to confess that I am not as good as my helper. Meaning that I cannot handle the same amount of chores + cooking + looking after Vera & Daen + not sleeping at night - as her and still function. Even with Ian's help.

So by Day 3, I called in the reinforcements.

My mom, my aunt, my grandma, my sis-in-law.

Thank god I have reinforcements.

A Fab Feb

We've emerged from Jeopardy January and things are looking up. 

Vera's well and back to school. So is Daen. 

My helper Beth on home leave for two weeks. So we're keeping our fingers crossed no one falls sick during this time. 

It's been a great workout for me playing maid of the house again; it's my 2-week slimming program. Housework and wakeful nights work wonders on the waistline. 

Vera's birthday is coming up as well. I can't believe she's turning FOUR. 

FOUR is an inauspicious word for the Cantonese: it sounds like 'Die'. 

We're ignoring that and going ahead to celebrate Vera going against the odds and being such a survivor. 

Initially we (or me mostly) weren't in the mood to celebrate her birthday, but I think after January, we could do with a bit of joy yah?

Here's hoping for a fab Feb for you all as well!

It's Hard To Have A Happy Start to the Year

It's hard to have a Happy New Year.

Here's why. 

January is one of the worst months to start the new year. If I had a choice, I'd start the year with August, or September. Those are usually quiet, uneventful and relatively peaceful months. 

January is Major Anxiety Month. At least it's been for the last few years. 

January is when I had to deal with news of Vera 'having problems' in my tummy. 

January is when Vera fell sick, very sick with Pneumonia coming to 2, and I was making hospital rounds while very pregnant with Daen. 

January is when Vera fell sick again coming to 3 and did time again in hospital.

This January, as history would have it, is living up to its reputation.

I have been plagued by a persistent cough since December.

Daen was infected with Hand, Foot and Mouth Disease after his first week, and first time, in Childcare. We've just spent one week dealing with it. 

Just when I was mentioning how lucky it was that Vera didn't pick it up from him (we had them strictly separated until he was fully well), she is sick. She vomitted four times after milk. Runny nose, fever. Please, just don't let it be HFMD.

As of now, it's back to separating them again. And a return to suctioning and lack of sleep.

There are two flu seasons: December - February. May - July. We're at the height of the former now. 

And to top it all off, in January there's 'Happy My Birthday', 'Happy Our Wedding Anniversary', and 'Happy Lunar New Year'. 

January's tough I tell ya.

Water Water Everywhere

The best part about living in Singapore is that, because it's such a small island, you can get a whiff of the sea anytime, in no time.

Today, we checked out Woodlands Waterfront, a seafront to the north, overlooking the Straits of Johor, Malaysia. Another morning outing with Daen since Vera's asleep.

Instead of the rain that we've been having the past month, the weather was perfect and the boy had so much fun he knocked out on the way back.

Happy 2012 Everyone!

My mummy thought I'd never be able to sit like this, but what d'ya know? I'm full of surprises. It's taken me a long time, but hey, that's me. Wondering what else I'll be able to do in 2012? Stay tuned!

A Privilege

If I look absolutely thrilled, I was. Because the baby in my arms is none other than the beautiful Vera, who at less than a year old, has made it through a surgery, fought her way back from the brink, and made it home for her very first Christmas. For parents in the Trisomy 18 world, experiencing miracles like this is a painful privilege - the joy comes enmeshed with heartbreak, too much anxiety and too little sleep.

If you're a parent in these shoes and have asked "why me?", well, we are the ones who have been chosen - to know life, raw and unplugged. We live each day intimately acquainted with the basics of life - breathing (how hard, how fast), sleeping (what time, how much, how fitful), and waste matter (how much, how often, consistency, texture). And within these basics of life, are where its profound meaning is unearthed.

It was such a privilege to hold Vera today and momentarily feel the strength of her grip in spite of her frailty.

And the best part? We were decked in red and white stripes, a simply delightful coincidence!

Vera's daddy's ingenious contraption - A microphone holder! 

Now why didn't we ever think of that? Now more 

tube-feeding parents can take a much-needed break : )

Christmas Lunch

For the first time actually, we had a nice lunch with my aunt and grandma with Vera. I always make sure it's somewhere relatively less crowded, quiet and with aircon. If Vera's comfortable, she's unlikely to be cranky. 

It is a dream come true for me to be able to dine with her, outside, with relative ease. No more discomfort, arching, vomiting...oh I remember those days. I use to envy mummy Rae and how she takes Rachel everywhere and she told me 'your time will come'. She was right!

I'm happiest when I see my Grandma playing with Vera. It is not lost on me how precious these moments are, as my Grandma is already 90 years old.

We must make it a point to do this more often.

Holiday Cheer

All too quickly we've come to the end of 2011. Vera got a really pretty hairclip from Auntie Sher of Offsprings fame. I've been looking around for nice hairclips that don't pinch the hair but in vain (okay I've only shopped at the only store in Punggol.) Thanks Sher!

This other gift was a surprise - from a mummy who follows this blog, Stephanie. You'll be pleased to know that Vera enjoys it very much! It's perfect for us actually. She can entertain herself while we take a break : )

Meanwhile, we've been asking Daen to "teach chea chea" how to do things. Here he holds her hand and presses it on the piano.

Vera looking up to her 'big' brother (who's already graduated to a toddler bed). She looks shorter because of her weaker muscle tone in her back, but they are actually the same height now. Looking at this picture makes all the busyness worth it.

Guitar Girl

Without a doubt, Vera loves the guitar.

Before, she would just pay attention when I play and sing. Now, just hearing the sound of the strings and she can't contain her joy. Daddy captured her plucking the strings as well.

I just love that she responds so well to music. Probably because we give her so much of it!

Angel Charmaine

Dear Yvonne,

I knew something was amiss when you didn't respond to my email. I feared the worst.

That last thing I needed to hear was that Charmaine passed away on the same day as baby Ruth.

I am sure it is an extremely heart-breaking time for you. Those pictures you sent me of her deck up so prettily always are so precious now.

I celebrate with you those 36 months and 1 week.

Sincerely,
May

Rest Now Baby Ruth

It is with tears in my eyes that I write this.

Beautiful baby Ruth passed on yesterday morning after a valiant fight against a bad lung infection. She made it past the 1-year milestone.

Her parents are the bravest couple I've ever met. Soft-spoken, unassuming, but full of steely resolve and firm advocates of giving Ruth a fighting chance.

This is too hard to write about, so.

Rest now, dear little one.

3 Years 9 Months

3 years 9 months holds special significance for me. 

That is how old Vera is now.

That is also how long Annalisa lived.

Annalisa was a Trisomy 18 girl that I found on the Internet when Vera was a few months old. At that time, I was desperate to find a living case of Trisomy 18, or a family in Singapore.

I looked her mother up, I needed to talk to someone in my shoes so bad.

I learnt that she had just passed on. Till now, I remember what her mother told me: "She lived 3 years 9 months". She also looked at Vera's baby photo and said, "Your child is special."

Ever since then, 3 years 9 months had become almost a benchmark in my mind. I've wished for Vera to reach this point, because Annalisa did. Tonight, I looked at Vera and could almost imagine the same goofy happiness Annalisa exuded in her videos. 

I've lost contact with her mother and so will not post pictures.

Sweet dreams Annalisa. Wherever you are.

I Don't Understand

It baffles me.

I don't understand why Vera is still here. I don't understand why she is so happy every day. I don't understand why she is doing as well as she is. I don't understand why she is showing improvement far beyond what's expected of her. I don't understand why she's been born with such a dreaded condition, only to be spared the worst of it.

As many of my friends' grapple with serious lung and heart conditions and loss of their Triers, all the more I ask: "What have we done to deserve Vera?" "What have we done to deserve the relatively smooth ride thus far?"

The humbling answer is: "Nothing."

Which makes it even harder to understand. 

But it is through the un-understandable, that we learn that not all of life is knowable.

And the best thing to do is simply accept the mystery of grace. And be thankful big time.

The Decision to Freelance

I have been thinking about whether I should get a full-time job.

The obvious perks: Paid leave, medical insurance, employer-paid retirement savings, and steady income.

But there's always a nagging worry at the back of my mind. What if Vera falls sick? Will I be able to just take off at a moments' notice? Knowing that with her, a bout of illness is a 2 week affair. And because we've committed to round-the-clock personal care for her whenever she's at the hospital, I'll have a shift to do.

Also by working full-time, will I get to spend enough time with Vera?

It becomes clear to me that I have to freelance.

It means that I can decide whether to take up a project. If I prefer to spend time with Vera or bring her to the doctor's, I can choose not to take up any. If she falls sick, I can stop work immediately.

It seems to make sense.

I am so thankful that I have a job that allows me to freelance.

Back To Work

Just as quickly as I had left adland (to care for Vera), I'm back into it again.

The difference in routine is marked.

And I would say, working is less tiring than staying home.

I sit in air-con comfort, have free-flow of cappucinos, chat and think of ideas, have yummy fare for lunch.

Compared to:

Push Daen out to buy groceries. Feed breakfast. Watch him at playground.
Bring him back for lunch.
Take Vera out for sun, standing therapy.
Bring her back for bath.
Put Daen to sleep.
More therapy with Vera.
Daen wakes push Daen out to play.
Bring him back for dinner.
Push Vera out for evening stroll and more standing.
Come back put Daen to sleep.

I miss all of it. But I'm glad I got the chance to do it all.

I hope Daen has grown enough to find his own feet, and will get used to not having me on demand. Not that he's ever been clingy that sweet boy.

Vera? I now see her for less than 3 hours a day.

I'm trying hard to convince myself that this is normal, many parents are in these shoes, and I'm not neglecting my kids.

Surgeons

I don't envy surgeons.

When parents of a Trisomy 18 kiddo come to you and say, 'Please help my baby', what do you do?

Tell them 'erm...the risks are very high, you may lose her on the table, even if we operate and she survives, she won't last very long so what's the point. Plus she will continue to be high-need and low functioning.'

Or do you say 'ok, if this is the problem, this is what has to be done. The risks are very high, and you must be prepared to lose her, but we'll do whatever we can. I can't tell you if she will make it, that's up to her. If she does, potentially it could give her a few more months or years.'

I guess the difference lies in where the surgeon stands on the concept of Futility and Hope.

Both lie on opposite ends of the spectrum.

Where does one end and the other begin?

Are surgeons in a position to decide?

If the risks are too high are they still worth taking, to buy time for love?

How do they reconcile with failed attempts? Do they 'just move on' or break down and cry too?

Such a heavy responsibility - holding the fate of someone's child in your hands.

Toddler Time

Daen's officially a toddler.

We take him out whenever Vera is sleeping, so he can expend his energy.

Here he spends some quality time with daddy. It is going to get lesser now, as daddy has been working late almost every day recently.

Spending the last 18 months with Daen has been a real privilege. He is active, sociable, observant and loves nature. He greets anyone and everyone. He loves sticks and snails. He dutifully picks litter and disposes it in bins.

I couldn't have asked for a better little boy.

Sengkang Wetland Park - Tranquillity a 5-minute drive away

Silent Reflux Confirmed

Results from the PH Impedance study are in.

Vera definitely has Silent Reflux. That means although she doesn't vomit, fluids are going up and down her oesophagus all day. 147 times/day to be exact.

About 50 times, it goes up as high as 9cm about the stomach. Which is quite near the lungs. Not good.

Solution?

Well, there is no long-term solution. Reflux is something that cannot be cured once and for all.

We could put Vera through surgery for a re-fundoplication - tightening the band leading out of the stomach - preventing fluids from going back up, but that commonly lasts for 5 years. In Vera's case, the first fundoplication when she was 1 year old lasted only a year. So we're not too convinced of its durability in her case.

Plus, we're told by the surgeon that the re-fundo needs to be done via a cut on the stomach, which sound a little drastic. The first time round was using keyhole surgery. If anyone has had a re-fundo via keyhole, do let me know!

My other greater worry is intubation. Vera has had surgery twice, and both times, intubation was difficult and quite a challenge for the team. Basically that means lots of trial and error, in and out, and scarring and swelling of her oesophagus.

The plan now is to wait until something happens. Meaning, if some fluids go into her lungs and causes Aspiration Pneumonia, that will be the time we seriously consider the surgery.

Meanwhile, we continue the costly medicine Omeprazole, which makes the hyperactive fluids un-acidic. Liquid going into the lungs is bad, but acidic liquid is worse.

Let's hope the fluids behave themselves and don't stray too much.

Stackable Stools

Face rash has cleared. Mucus is almost gone. Vera's getting back to her sit-stand routine.

These stools from IKEA are just great. Its stackability allows for height change as Vera grows. I tried two, and she wasn't too happy. Three and she's sitting relaxed and happy to pull up to standing.

This is what they use for the kids in class too. So we practice every day at home. Getting her used to having no arm rests.

It would be a milestone to have her sit and balance on a stool without any backing for the length of Circle Time. I know she can do it.

Every Day

Oh how ordinary it may seem

that we're living a miracle every day.

3 years 7 months 2 weeks with our noisy girl.

Tegaderm Rash

The Tegaderm (transparent tape) used to fix the ph probe has left a rash on Vera's cheek. Although thin, it is not as soft as an ng tube, leaving a reddish pressure point at the corner of her nostril as well.

She's developed a low grade fever as well, but for now, we're still managing at home.

Sick Post Study

One day after the ph Impedance Study, Vera has increased secretions.

It could be that she aspirated on some of the milk she vomitted while lying down. Or that she picked up a bug in the ward (guy in the next bed coughing, student nurse with a runny nose).

I"m hoping it doesn't develop into 2 weeks of suctioning or fever.

Ph Impedance Study

We're back home after the 24-hour study. All went smoothly. Just a little vomitting of milk, which I'm sure is due to the tube irritating her throat.

Here is a close look. You can see the measuring "frets" I call them. I'm just happy it turned out to be a really thin tube and not too difficult to insert. I think it's probably a 06 size ng tube size or slightly smaller.

It was good that it was portable, so we could still bring her to the playground. NUH has a lovely open space next to the kids' ward. Here, Vera actually holds a smile until Daddy got the shot : )

Results in 2 weeks' time.

Silent Reflux?

After dallying for a few months, we're finally going to put Vera through the PH Impedance Test tomorrow.

She will be warded for the 24-hour study at NUH.

Vera has been taking Omeprazole for reflux for nearly 2 years now. The dosage costs us about S$150 (USD$117) each month.

In this time, she has hardly ever vomitted. But then again, there's something called 'silent reflux'.

So I'm hoping, once and for all, we'll have answers to the mystery of whether she really has acid backing up or not, at any point in a day.

With the results, we can then either wean down the Omeprazole, or increase it. I'm hoping for the former of course.

Let's see.

Vera Meets Vera

Some moments in life you never thought could ever happen. For me, this is one of them.

You're looking at two Trisomy 18 babes, both named Vera, living in Singapore, on the same bed.

Vera's parents contacted me some time after little Vera was born. It was unbelievable that we live just 20 minutes from each other.

I remember when our Vera was small too, and we took pictures like there was no tomorrow. Marking every month with cake and candles. Seeing other families cherish their fragile ones the same way brings back bittersweet memories.

I Remember

I've been thinking long and hard about writing this post, and postponing it in the process.

Because the subject is one that 'haunts' every Trisomy parent, even if their child is stable and 'doing well'.

In the past 2 years, four of the children whose lives I have been following through blogs, have died.

Some of their mothers have been a source of comfort and support in our journey with Vera, some I know less well.

It doesn't matter that I have never met them, or that most live on the other side of the earth. Because of the intimacy of the internet, I feel their pain and heartache through their words.

Over time, I'd gotten into the habit of looking forward to posts from them, just to know how the kids are doing, if things are going alright.

And now, posts are few and far between. It is inevitable and I completely understand.

I sometimes wonder too, if I will lose the will to write, or need to write, without Vera around.

I cannot bear to take the blogs off my list. So I've created a new list, 'I Remember'.

For how can I ever forget following their journeys of fighting against frailty, hoping against hope and most of all, loving their child completely, tubes, IV lines and all.

Courage

People tell me I am strong for surviving the after-birth ordeal of having a special child.

But I can tell you that the truly brave are the women who choose to continue with their pregnancy, knowing full well they are carrying a special child, at an early point where they have the chance to abort.

It is a quiet courage that has nothing to do with bravado, and everything to do with sheer faith and belief in the sanctity of life.

It is a mother fighting against all the voices telling her "abort! abort! don't let your baby suffer!" and her own uncertainties about every step ahead, knowing deep inside that she needs to give that grain of life at least the chance to decide it's own path - however long or short it may be. It is total respect for life.

While the world around her - doctors, concerned friends and relatives, medical statistics - may point to the dire prognosis and make her feel as though she is making a grave mistake, she has to, despite her own fears, soldier on blind into the unknown with the life inside her, because God has made her, by nature, protector of that life. It is a role entrenched into the DNA of a mother.

So to all the mothers who chose or choose to carry a sick baby, especially a Trisomy 18 baby, to term, this is my humble salute to you. Jill. Christine. And many other women among us.

It is courage more worthy of celebration than any battle fought and won.

Daen's Friends

Friends. That's what he calls them. All the children in this library book have Down Syndrome, and he absolutely adores them.

This girl here never fails to make him break into a smile.

I'm thinking, libraries should have much more of such books, so children learn from a young age about kids who are different from them and need extra help with everyday living. It should not be a rare book find.

I will try buy some of these books from Amazon to keep, they can help to educate Daen and kids who visit us.

I don't remember ever learning or hearing about special needs kids in my young, formative years. I didn't even know they existed.

Changes in societal attitudes stand the best chance of being changed through the very young.