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.

Sightseeing

Vera's school has beautiful wall murals, and she got to see them up close today. There was no swimming due to rain, so she went onto the stander and I wheeled her on a tour around the school.

The last time we borrowed it home, she could stand in it for 10 minutes. Today she could tolerate 20 minutes!

She is most definitely improving.

Heartening News

Vera had a cardio appointment today.

Her last echocardiogram was when she was one and a half.

Now that she's 2 and a half, I thought it would be good to get a yearly update.

No new news - which is good news. There seems to be at least two ASD, but they are very small, about 2-3mm. Dr T explained that intervention is only considered if holes are like 10mm.

Vera's are not causing any problems at this point.

There is increased heart beat pressure, but to be expected because she is a biPAP patient.

We go back to the hospital in 2 days' time for her GI appointment.

Interacting More

As Daen grows, he's starting to interact more with Vera. He looks forward to seeing her in the morning, and looks for her when he comes home.

He observes what we do with Vera, and tries to do the same.

He can even mimic her head-shaking. I am so proud of my 'twins'.

A Good Swim

Of all the school days, Fridays are my favourite.

It's when Vera has Hydrotherapy.

I get to dip in the heated pool with her, run her through her exercises and feel her kicking.

There is none of the initial tensing up. She is relaxed and co-operative, and I feel we're dancing in water.

She used to fuss after 20 minutes. Now, she can last up to an hour.

Unfortunately I'm in the pool, so I couldn't take any pictures!

School Seating

I'm happy that we've got Vera's seating sorted out in school as well.

This chair is bigger than the Rifton toddler chair. The best thing about it is the big slide-in table, which does not have any slots so it stops wherever to avoid her PEG. And because it is heavy, Vera can't shift it.

So I feed her in her pram and then she goes into this chair for activity.

Our National Day is coming up, so Vera learns how to make the flag.

We are having more good days in school now, and I hope the falling sick dry spell continues. I enjoy bringing her to school so much.

Canetons Chair

The newly-throned Queen

We got lucky in our search for Vera's new chair.

Upon the recommendation of Rae who uses the same Canetons chair for her special needs gal, I found out where to buy it online. It was selling at S$159.

Then, I chanced upon a mummy selling a second-hand one online for S$40! And she lived just 10 minutes from us.

Now Vera has a higher-up view, a roomier seat and a wider tray. Her legs are at the correct 90 degrees now. And the backrest is reclinable when she wants to rest. Best of all, the chair is lightweight unlike the Rifton one.

It would be great to have her use this in school too.

Back To School

Finally, Vera and her friend XY are reunited again. These two have been buddies since her mummy and I were both newly pregnant back in 2009.

Vera is also back on the Rifton K110 Mini Dynamic Stander.

She rolls up to the board for some "painting".

Thanks for checking in on Vera, and Cathy thanks for the reminder to keep up on my posts!

Rifton Chair

We're trying out this Rifton Chair for Vera in school. Her current feeder chair, which she has been using since she was a baby, is getting too small for her already, especially at the crotch area.

Problem is the tray table can't fit her, as her stomach protrudes out too much. It will rub against her PEG button.

Hope to get a permanent chair solution for her soon.

Daen's First Hike

The morning before Vera fell sick, we brought Daen to Bukit Timah Nature Reserve. Mornings are usually spent with him, as Vera is still sleeping. The Papoose was given to us by a friend, and it is meant for hiking with baby. Perhaps we can relive our hiking days (Nepal, Kinabalu, etc) with Daen in the future. Or maybe I'll be too unfit by then!

Blood

It's all my fault.

I went to clean her teeth with too much Biotene liquid. She swallowed some of it, and probably aspirated. That very night, there were increased secretions, and now runny nose and a fever.

Don't know why there's fresh bleeding from the nose too. That's stopped, thankfully.

Sometimes, mom doesn't always know best.

Detecting Trisomy 18

This article is way too high-brow for me. But in a nutshell, it seems that someone's found a way to detect Trisomy 13 and 18 in utero to a high 98 per cent certainty. 

New Diagnostic Test for Trisomy 13 and 18

With more cases being seen today ( I understand that a Singapore doctor saw 5 Trisomy 18 cases in the past 1 year), and given that the current practice, at least in the US, is moving towards with-holding life support from very sick babies, I hope these tests get made mandatory soon and offered to mothers from age 30, not age 35.

I was 32 when I had Vera. A Nuchal Translucency Test show "low risk" of Trisomy 18. When I asked about it, the reason was that it was a "false negative". Well, we've got to get better, more accurate tests then!

Another Vera

About a month ago, the father of another Trisomy 18 baby contacted me.

I was surprised to hear they lived in Singapore.

Even more so to learn that their baby girl was also named Vera.

It is just mind-boggling to consider the odds of that. (When you live with Trisomy 18, you start to take probability predictions like "high risk/low risk, high chance/minimal chance" with a pinch of salt.)

The mother Laura learnt about Vera from this blog. We met up, together with baby Ruth's parents, and talked. I never would have thought it were possible to find other parents in Singapore when Vera was born.

Hopefully we will be a source of hope and support for one another.

Sand-sory Time

Vera enjoyed playing with sand at school today. It ran through her fingers and she waded in the 'pool'. It was about the only time she wasn't acting up (due to lack of sleep). So far, the journey to and fro has been mostly with her complaining away.

Stand in the Corner

This is how we've been standing with Vera on a daily basis. It is not the correct position - as you can see, her butt juts out and she is hanging onto our hands like they were crutches.

This is a better position for Vera. Her teacher Jo gave me the idea to put her up against the wall to stand. This way she can learn to bear weight on her legs correctly.

I feel we need a stander for Vera, and will be seeking some advice from her physiotherapist.

I'm also trying out sitting her against the wall. It helps her tuck her chin in and keep her head down.

Back To School

After a relatively long hiatus, Vera went back to school today. Good thing she did not wake up last night, which guarantees a fairly good day ahead.


She was extremely alert, and excited, probably too excited, so she got tired out and cranky. But overall, she enjoyed the session - I can tell from her roving eyes.

She sat unassisted on the mat for the first time in class. I am so proud of her.

Babysitter

My 90-year-old granny tires easily nowadays and visits us less frequently. She's stayed over the past few days, and it's so wonderful seeing her with her great grandchildren. I think playing with them tires her out more than usual, in a happy way though. Oh how I wish she could be with us for much much longer.

Pushing Up

Vera's hands have become stronger. She is now about to push her body up until they are fully straightened.

Through weight management, we have kept her weight the same while she grows in length. She was off the charts for a while, but now she is currently at 100th percentile on the Trisomy 18 weight chart - 25lbs at 3yrs 3mths. I believe this has enabled her to grow out nicely, and also helped her remain active and bear her own weight more comfortably.

Vera at her smiley best.

Encounters At The Playground

I can tell how society views children like Vera just by bringing her to the playground.

Some kids can be mean.

A 5-year-old boy comes right up and laughs in her face.

"No laughing," I chided him defensively. "If you want to laugh, don't come near here."

He does the same to another special needs boy with cross-eyes, about his age, who also happened to be at the playground.

Two other bigger children, both sisters, come up to Vera and said, "She looks so special". Seeing that they were friendly, I proceeded to tell them about the miracles and obstacles Vera had overcome.

They were filled with awe.

One of them asked their mother to come see.

The mother took one look at Vera and said, "Aiyoh, why like that?" Then hurried her girls along.

Her daughter looked at me and said, "Sorry, auntie."

The girl actually apologised to me on her mother's behalf.

We may be a so-called first-world economy, but alas, no way are we near first-world standards in our attitudes towards those who are different from the norm.

Where I live, some people hurry into lifts and close the doors like they are hitting the panic button. They don't have time to wait for others.

Able-bodied people jostle for the lift with those in prams and wheelchairs, instead of taking the stairs.

It saddens me sometimes.

Beautiful Baby Ruth

Look at those eyes. So wide and alert.

This is baby Ruth. Another Singaporean baby born with Trisomy 18.

Another fighter who, despite a hole in her heart, and numerous hospital admissions and surgery, has survived for 7 months now.

Her parents are even more amazing. They learnt about her condition at 21 weeks in utero, and bravely chose to give her a shot at life, and let HER decide how long SHE wanted to live. It is the ultimate respect for life. And truly unconditional love.

From a birthweight of 2.1kg (Vera was 1.9kg), baby Ruth is now 5kg. It is the work of the wonderful invention of tube-feeding, impeccable nursing care, doctors and surgeons who go the extra mile, lots of LOVE and a higher power. And of course, Ruth's will to live.

As of now, she is still fighting for her life, awaiting heart surgery.

Please pray for this little baby.