Back with Tinny

After a long hiatus, I caught Vera smiling at Tinny in her sleep again! Must be on the rebound...

A Magic Moment

I’m sure every mom has one: A moment in which they feel truly connected to their baby.

For me, this is when Vera finally calms down after a bout of wailing. After I’ve bounced her enough on my pocket-spring bed (to the detriment of my spine). Her body becomes lax, her face presses against my chest and she’ll have this faraway look in her eyes. From my top-down view, I see her long eye-lashes and beautiful left eye. In the warm glow of the incandescent bedroom lamp, the view is almost mesmerizing.

“She feels me, and is content” I’d think to myself. Then, I consciously register the moment into my collection of Vera-memories. No diagnosis, prognosis, nor final analysis can take these away from me.

Kidneys & Hypertension

Vera went for a renal ultrasound yesterday. There's good and bad news. The good news is, her kidneys are normal! She had a duplex kidney and a cyst in one of them but somehow they seem undetectable at this 6th month scan. We don't really know what to make of it, but are happy there are no issues there.

However, this means that her high blood pressure is not brought about by renal issues. According to one Tri18 mom, there are two types of hypertension:

Essential Hypertension: brought on by issues with the kidney, can be treated with medication.

Pulmonary Hypertension: If Primary - there's no known cause, no treatment and eventually fatal. If secondary to respiratory or apnea issues, if these issues are treated it can be managed.

We'll have to find out what Vera has.

Happy 6th Month

It was a gathering of all the people who loved her. Great grandmother, grandparents, aunties, uncles, cousins, newphews...the people who've been coming quite regularly to see the little girl and to help Ian during the day. Vera cooperated for the photo op and was on her best behaviour. Too bad she couldn't taste the delicious Coffee Macademia Cheesecake made by my auntie!

The Half Year Mark

Here we are today, 6 months since Vera was born.

It's a milestone mark for her. From a frail, skinny newborn, she's now a chubby little infant with folds in her thighs and a double chin. She almost looks like a different baby.

Seeing her grow beyond our expectations has been a humbling experience. We do not expect anything anymore, because the word 'expectation' holds no water. Instead we take her as she is. And are thankful for each day she's with us. We know that it's these happy times that we'll remember at the end of the day.

It's a milestone mark for me as well. I never really bonded with Vera from birth as much as Ian did. Perhaps because I never saw her coming from me, perhaps because I didn't breastfeed her, perhaps because of my post natal blues. But over the past few months, I've been working on our bond, and it's much stronger now. I can tell she likes me to sing to her, bring her down for walks, and rock her to sleep at night.

It's been a roller coaster ride, with highs and lows, ups and downs. Times of pure joy, times of pure frustration and despair. But here we are today. And here she is today.

Nothing else really matters.

Heart Update

Vera saw the cardiologist yesterday. Her PDA has fully closed! It's a miracle, isn't it? It was a large one at birth, became a small one at 3 months and now fully closed at 6 months.

This little girl is a fighter with a heart that wants to beat on.

However, our joy was tempered by some not so good news. Vera's blood pressure is higher than normal for babies. They took it once when she was crying and it was close to the levels of an adult. I've read that hypertension is one of the issues for T18 children, and medication must be taken to control it. It can also be a sign of problems with the kidney (renal function).

We're going for ultrasound scans for her kidney next week, before the doctors decide on further course of action. Fingers crossed!

How Are Her Eyes?

Vera saw her Eye Doctor today. Her corneas have been cloudy since birth, but have been gradually clearing. The good news is, the clear portions are much clearer now. However, the thick, cloudy portions aren't really clearing, or very slowly.

That means she probably can see partially, but not with the clarity that we enjoy. I guess it's more of blurry shapes, outlines and movement for now.

Aside from her feeding issue, having her vision improve is the main thing for Vera. If only she can see! I believe she would be more easily entertained, and less easily insecure.

Having said that, it's a blessing that she can hear. With our voice and our touch, we still can cheer her up, calm her down and reach out to her. In my eyes, that's good enough for now.

Flowers for Vera

I've never received such a huge bouquet in my life. It was almost as heavy as Vera, close to 5kg I believe. But the flowers weren't just for me. They were for the little girl. All the way from friends in Japan. Looks like she's got some big fans!

Sucking Her Thumb

Most babies do this since birth, but for Vera, it's a milestone. Most T18 babies do not learn this skill.

She's been practicing for a while now, always in slow-mo fashion. Sometimes she gets the aiming right, sometimes it misses the target. But she's getting there.

Last night, she aimed perfectly and it was a home run! She then continued to suck her thumb happily.

Let's see what new stunts she'll surprise us with as she grows!

Finding My Voice

Another little miracle has happened since Vera came into my life: I've found my voice again.

No, not the one you hear, but the Inner Voice that runs through your head like a continuous stream of consciousness.

I used to have it with me. But with the pre-occupation of working life, it somehow disappeared. The irony was, I was a copywriter, a crafter of words, yet I had no words running through me. I tried to egg my thoughts onto paper, but failed always.

Now, the words flow like water. Almost as if the floodgates in my brain have been opened. Even my copywriting comes much more naturally and insightfully now. (Yes, Vera's helped me improve in my work!)

Perhaps this is the gift she's given me. The gift of finding my self.

She Can Wear Them

New clothes. They came in a flurry with Vera's arrival. Friends and well-wishers from far and wide gifted us with them. 0-3 months, 0-6 months...the labels said.

Back then, I felt nothing receiving them. In fact, each time I saw them, especially the bigger-sized ones, I'd think to myself, 'What's the use? Vera would probably not get to wear them," So I stashed them away in the storeroom.

As the weeks passed and we were into her 3rd month, we found that Vera was indeed outgrowing her 6 sets of Mothercare newborn vests. They had been the only thing small enough for her wear since birth.

Vera was actually outgrowing her clothes! The realisation filled me with such joy.

Now, I relish the very act of packing away clothing that no longer fits her. I'd find every excuse to relegate them to the "Outdated Pile". "This one's a little tight at the arms...that one's exposing her tummy..." Somehow, seeing the "Outdated Pile" grow fills me with an inexplicable feeling of pride.

I'm not the only one who's excited by Vera's outgrowth. The clothes lying dormant in the storeroom are probably stirring too. Especially the ones that once adorned another little baby girl named Jorryn. One by one, they're being hoisted out of darkness, and given new life again.

So keep growing alright little Vera? There are still so many clothes, waiting for you to wear them.

Ordinary Miracles

What a beautiful oxymoron!

And how true. That it's the most unspectacular, taken-for-granted things in life that are the ones that are the most awe-inspiring.

Like our eyes. They open for us every day, asking only for a blink now and then to keep going.

Like our heart. Pumping since the day we were born, never once stopping to rest or skip a beat.

Like our legs. Taking us wherever we wish to go. Scaling mountains, to the depths of the oceans, to explore faraways lands.

Like our fingers. Running tiring on a keyboard, churning out words to earn our keep, drumming on a piano to create sounds to soothe our souls.

There's so much more to cherish in the very ordinary. The things we look at but often do not see.

Do you see the "i" in "miracles"?

Divorce Rates

According to literature on the subject, the divorce rate among couples with a disabled child is an alarming 75%.

I can imagine why.

The stress of coping with the demise of a lifelong dream of having a normal baby; the struggles of dealing with everyday challenges that come with the special needs of such children; the complete end to any semblance of a previous carefree life...they can all collide and cause conflict.

What of the other 25%? Their marriages change too, I believe. Becoming stronger, deeper, welded together by a common cause.

Whichever way it is, keeping it together is hard work. Which is why these days, I try my best not to sweat the small stuff.

Months ago, I'd flip if let's say Ian doesn't change Vera's diapers and the sheets get wet.

Now, I just let it go. So one person oversleeps and misses her feed, another packs the wrong size of diapers, or spills the milk, or forgets this or that...it's really not such a big deal. What matters is that both parties are doing their very best already.

Will my marriage belong to the 75% or 25%?

Vera has shown us she's beaten the odds 90% to 10% to be here today. We ought to follow in her footsteps.

Inconsolable

My patience has been wearing thin recently. Vera seems to be getting more and more inconsolable. Last evening, she woke up from deep sleep howling, as if something had frightened her. She cried for the next 5 hours.

There was nothing we could do to pacify her. No amount of patting, carrying, cuddling or singing. And when we started to feed her, it just got progressively worse.

Of course, as with every crying feed, it takes FOREVER to go down the syringe, and after you’ve finally got the last ml done after 1 hour, vomiting is the end result. She swallows too much air and it just has to come out.

The persistent crying really gets to me. I experience it maybe once a day and already I’m on the end of my tether. Imagine Ian, handling such feeds 3 times on one day last week, (Disaster Day he calls it), all alone.

I’ve been asking myself, “How long more can I do this? This tube feeding thing? This tape replacement thing? This vomiting/cleaning/washing thing?”

Ian’s answer? “Just do it.”

Sorry, but I’m so far from attaining that mentality. I feel like giving up more often these days, feeling like just having a BREAK from this endless cycle. Yet I know I’m in no position to complain because Ian goes through it 24/7. And he’s not once lost his temper.

Sigh….this bringing-up-baby role. The toughest thing I’ve ever had to undertake in my life.

A Walk in the Park

Given Vera's adventure-spirited dad, it's no wonder Vera's getting her hiking training early.

Last weekend, we went to check out a section of the South Ridges Walk, a new trail through the foresty south-western part of Singapore.

Carrying all 5kg of her for nearly 2 hours, even with a sling, my back was aching and I had to see a chiropractor the next day. A walk in the park for her, but definitely not for me!

Cliffhanger II

Cliffhanger II : Escape from Cradle Island

Like all great movies, there's always a sequel.

Starring Vera, living dangerously once again.

S.O.F.T Conference

The S.O.F.T (Support Organisation for Trisomy 13 and 18) conference in Denver has just ended. Of course I had known about it a month or so before. But didn't know how important it would be for us to attend.

Now I wished we hadn't missed it. Basically, once every year, doctors, parents and children with Trisomy come together to share new information, support, care and treatment issues. According to one mom, the doctors who take part voluntarily to help the kids. Also we could have met other parents and learnt a lot from them. Of course, also to see how other kids like Vera.

Most importantly, we'd be among people who know exactly what we're going through. And we'd feel like we're not alone at all.

Well, next year ok, Vera? You can go on your first plane ride.

Vera's Playmates

For a person who's just a few months old, Vera's has got quite a following of friends.

There's the great grandmother who, at 88 years of age, comes to sing Teochew songs to her.

The grandaunt who comes and takes her down for walks in the park.

The granduncle and aunt who come and keep her entertained.

The auntie who comes weeknights to calm her during her most colicky time of the day.

The auntie who rushes by for a quick visit during her lunchtime.

And of course, her regular, biggest fan, Papa Penguin, whom she can always count on for some entertainment.

Lucky girl.

Hurricane of Hair

Vera's abundant newborn tuft of hair has almost completely shed off, revealing new strands perfectly formed in a cyclone. It's just a strange thought, that something so tiny shares the exact shape with a weather phenomenon of such mega proportions.

So what is big and what is small? Perhaps they are one and the same.

Sleep Smiling

At 5am this morning, I caught Vera smiling at Tiny 3 times in her sleep. Must be dreaming about him...

A Small Scare

Last night, we had to change Vera's tube. Problem was, she was sound asleep and we didn't want to wake her.

I could do this easy, I thought. I'd done it before when she was sleeping and she didn't feel a thing.

This time however, it went awfully wrong.

Once I'd inserted the tube, she choked. That's normal. But then, her whole body suddenly became stiff, hands straight like rods, her eyes opened wide and staring.

Ian! Come quick! I called. The thought flashed through my mind: Is she having fits? Is she going to die?

Immediately, we pulled the tube out, and shook her. (Should we be shaking her?)

Ian carried her and thankfully, she started to cry. What a relief.

When she stopped, I started to cry uncontrollably. The shock and the thought that I caused it was too much to bear.

"Just do what's needed," Ian said. Meaning to reinsert the tube. Because it was time for her next feed.

So, much as I didn't want to, I regained my composure and did it.

I thought to myself, if I can't handle one small scare like this, how am I going to handle much worse?

Happy 5th Month

This is 'Tiny' (pro-nounced Tinny), Vera's boyfriend. Look at how happy she is when she sees him. Guess she'll be celebrating her 5th month with him. So fast forget us already.

My Weakness

...is my tiredness.

Months of waking up in the middle of the night have finally reached burnout point.

Initially, it was still manageable. I could do it, wake up and sleep on demand.

As the weeks go by, it's getting harder and harder. Tiredness sets in earlier and for longer.

I get ugly when I'm tired. I get cranky, grouchy, my body shuts down. I don't feel like picking a crying baby up.

Ian picks up when I drop the ball. And it's a lot of the time now. So he gets really...you guessed it, Tired.

Life now is just one big Rush.

Rush to work. Rush to finish work. Rush home from work. Rush to finish dinner. Rush to bathe. Rush to feed Vera. Rush to prepare milk.

Just so that I can work in enough sleep to wake up in the middle of the night not feeling like a zombie.

Is there light at the end of the tunnel?

To Know or Not to Know?

Reading the views of T18 mothers on pre-natal diagnosis has led me to form my own opinion on this:

If I could do it all over again, would I have done an amnio and terminated my pregnancy upon learning of the diagnosis?

One year ago, the answer was yes. I had gone for the NT test to look for Downs. If that had been positive, I was prepared to terminate the pregnancy.

Today, my perspective has changed totally.

Thank goodness I wasn't "old" enough to be offered an amnio (Usually for women 35 & above).
Thank goodness I didn't have to find out about Vera's diagnosis prenatally.
Thank goodness I didn't have to be under pressure from whoever to terminate the pregnancy. Thank goodness I didn't have to live with 6 months of trauma, worry and uncertainty.

You see, from what Vera has shown us, I've learnt that even the most "hopeless" diagnosis does not give anyone the prerogative to pass a death sentence on life.

Life, once formed, must decide for itself how long it wishes to sustain itself.

Sometimes I think to myself, now wouldn't Vera be mightily upset and indignant if we had known prenatally and toyed with the idea of terminating the pregnancy?

"What? You doubt my fighting spirit?" she'd probably say. "I struggled to sustain on just one artery for nutrients in your umbilical cord while my peers have two, and managed to come out looking not too bad, don't you think?"

"Look at me, I'm still here. Luckily you did not pull the plug on me. Otherwise you would have really regretted not knowing a charming babe like me ha ha ha. (Of course, I know I can be quite a ruckus most of the time.)"

Bottom line is: So what if you know prenatally? Would you know whether it's really a lost cause? For sure?

Vera has spoken: No.

I'm glad she got the benefit of the doubt.

It's Playtime!

Vera loves playtime. Just look at her.

Sometimes she'll smile, but even if she doesn't, she has this perpetual happy look.

Somehow, raising her hands all the way up, and tapping them on her body seem to illicit this look of joy on her face.

Each session doesn't last long however, maybe 10 minutes, and usually it's in the earlier part of the day.

If you wanna catch Vera in a good mood, mornings are best!

Hand Raising

"Teacher, I have a question. Er....forget what it was.

Lemme think."

A Mother's Instinct

This morning, sitting at my desk at work, I suddenly caught a whiff of Vera's sour-smelling poo.

"Is she poo-ing?" I sms-ed Ian. "I can smell it."

"Yes big one," he replied.

Unbelievable, isn't it? A mother is so tuned to her baby's channel.

Life is Life

I reproduce here a quote from Mother Teresa:

"Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is bliss, taste it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it."

Tube Insertion 101

Vera hates this. And we hate to do it.

Everytime we touch her chin, she knows what's coming. She uses her hands to fight it off and starts wailing.

She chokes as the tube goes down her throat. It's painful to watch, but it's something that has to be done. So we do it.

You'd think it's over once the tube is nicely in place. Wrong.

Vera keeps pushing the tube with her tongue and it gets wet with saliva.

The tape comes loose, the tube shifts to the side of her tongue, tickles her throat and she throws up.

Clean up milky mess. Change her clothes. Change the sheets. Change the tape (which irritates her throat again).

New tape gets wet with saliva. And the whole process repeats itself.

What's the alternative? Putting a button in her tummy or, training her slowly to swallow. It may be a long shot, but hey, I know of one mother who has succeeded in getting her T18 infant to take milk by mouth after 6 months on the tube.

There is hope yet.

We may know what Vera cannot do now. But you never know what she can .

Milk Angel

4.5kg at 4.5 months - that's where Vera's at right now. There's a pink glow in her chubby cheeks, not to mention her buttcheeks. She's even developed a double chin.

She's a really lucky girl. A milk angel has been giving her breastmilk to Vera for over 3 months now. It is the best gift Vera can receive, because it gives her much needed immunity against common infections.

Milk angel, thank you for making such a big difference to a little life.

Learning from Penguins

The heart-wrenching film 'March of the Penguins' aired on TV last night and I caught it a second time.

It's a movie that will move any parent because you're in the penguins' shoes.

For 2 bitter winter months, Papa Penguin holds a fragile little egg between his feet, protecting it from the arctic ice storms, while Momma penguin journeys to find food.

Of course, my day job is nowhere as treacherous, and bringing food home is more like getting "takeaway".

But my focus here is on Papa Penguin.

He doesn't eat for 2 months. He stands motionless for 2 months lest he drops the egg. When the chick hatches and Momma isn't back in time, he regurgitates an emergency morsel of food he's been storing for 2 months for his chick. And when Momma comes home fully fed, then he begins HIS long journey to find food for his starving body.

Watching Papa Penguin, I couldn't help but develop a new awe for the animal race.

And a deep respect for my husband.

Little by Little

When Vera is sleeping, feeding her gives me lots of time to stare at the milk going down.

And there's so much you can learn from the exercise.

Like the fact that when you're in no particular hurry to have it go down (because she's sleeping), and don't pay attention, it goes down really fast!

But when she's fussing and you're desperate for it to disappear so you can put an end to her misery (and yours), you can stare all you want and it seems to take forever to move down a notch.

It's a lot like life, isn't it? The more badly you want something, the more you focus on it, the more it doesn't seem to move in the way you want. Let it go, forget about it, do something else, and when you come back, chances are, things are going the way you want.

Also, when I'm tired, the milk is akin to my patience level: Going down. But when Vera is sweetly sleeping like an angel, I look at it and see it as time with her, slowly running out.

At other times, I see how the amount of effort that goes into bringing up a baby...and what a slow process it is.

Diaper by diaper, bath by bath, syringe by syringe.

Do It Anyway

If my baby cannot see
I'll smile at her anyway.

If my baby cannot hear
I'll sing to her anyway.

If my baby cannot understand
I'll explain to her anyway.

If my baby cannot hug me
I'll cuddle her anyway.

If my baby cannot call me mummy
I'll be her mother anyway.

If my baby should one day leave
She'll be with me anyway.

Ways of Seeing

If there's one thing that Vera has taught me, it is this: A lot of things in life depend on how you choose to see it.

Do you see Vera's right eye that cannot see, or Vera's left eye that can almost see?

Do you see Vera's tag on her cheek as a blemish or a really big dimple?

Do you see Vera's clenched fists or fingers that hold your hand and won't let go?

Do you see Vera's left ear that cannot hear or her right that can?

Do you see Vera smaller than any baby her age or growing amazingly well for an Edwards baby?

Do you see a child that won't be here for a lifetime, or a child that's here now in your life?

I choose to see the latter in all the above.

88 Years Apart

...together forever in one photo.

Vera is 4th in a line of first daughters - my grandma, my mother and me.

This is one of those photos you keep in your heart forever.

Biggest Smile Yet

Vera is a morning person. Wanna see her flash her pearlies...err, I mean soon-to-be pearlies? Wake up at 7am!

Cliffhanger

Our little friend like to live dangerously.

Cool cucumber

Last Sunday, we brought Vera to Pasir Ris park. She was shielding the sun from her eyes.

Daddy lent her his shades.

I Am The Child

I reproduce this article here by an unknown author because it moved me to tears.

I Am The Child

I am the child who cannot talk. You often pity me. I see it in your eyes. You wonder how much I am aware of...I see that as well. I am aware of much...whether you are happy or sad or fearful, patient or impatient, full of love and desire, or are just doing your duty by me.

I marvel at your frustration, knowing mine to be far greater for I cannot express myself nor my needs as you do. You cannot conceive my isolation, so complete it is at times.

I do not gift you with clever conversation, cute remarks to be laughed over and repeated, I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world around me. I do not give you rewards as defined by the world's standards...great strides in developments that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable...I give you instead opportunities.

Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible.I drive you further than you would ever go on your own, working harder, seeking answers to your many questions, creating questions with no answers.

I am the child who cannot talk. I am the child who cannot walk. The world sometimes seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, Oh I've dropped my spoon again. I am dependent on you in these ways.

My gift to you is to make you aware of your fortune - our healthy back and legs, your ability to do things for yourself. Sometimes people appear not to notice me, I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.

I am the child who cannot walk. I am the child who is mentally impaired. I don't learn as easily, if you judge me by the world's measuring stick.

What I do know is the infinite joy in the simple things. I am not burdened as you are with the strife's and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love.

I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you, I teach you of respect for others and their uniqueness. I teach you about how very precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you about giving. Most of all I teach you hope and faith. I am the disabled child.

That Baby Smell

No perfume in the world can match it. A baby's head has a scent that can melt your heart. A full milk diet, sweat and flaky cradle cap combine to create a heady musky smell that gives this mommy a real high.

Who needs heroin? I've got Vera.

A Word on Cliches

We've heard them all before. I used to rattle them off by heart as a young schoolgirl, phrases memorised to 'add colour' to one's English composition. Cliche they may be, but they hold so much more meaning to me now.

Don't cry over spilt milk
One night after expressing into the wee hours of the morning, I actually toppled the bottle. All the milk was lost, and I burst out crying. There goes what little precious I could give to Vera. There and then, I learnt the true meaning of this phrase.

Time heals all wounds
The wound to my heart of Vera's diagnosis is slowly healing with time, as we come to accept and embrace her for who she is.

Love is blind
Truly. Vera has little imperfections here and there, but I've realised I just don't see them anymore. Like her lateral cleft lip, her overlapping fingers, her cloudy eyes. To me, they are just Vera's lips, Vera's fingers, and Vera's eyes. As long as they smile, they are beautiful lips. As long as they grab my finger, they are beautiful hands. As long as they continue looking around, the most charming eyes.

Every cloud has a silver lining
For the first time, I actually visualise this phrase. Ah, so they are talking about the sun, peeping out from the edges of gloom! Isn't it beautiful? The cloud may be there, but the sun is there too, just hiding behind.

What old phrase will I see anew tomorrow? Only time will tell.

Down Days

Some days can be hard. Yes, I've learnt to look on the bright side - you know, Vera is here, she is growing, she is starting to smile etc. but the "dark side" is definitely somewhere at the back of my consciousness, a place fraught with fear of the future, uncertainty and despair.

It would be a lie to say that everyday is a song now. Something someone says can awaken the "dark side" and it rears its ugly head.

"How old is your baby? 4 months? Should be able to crawl already right? Not yet?"
"Better raise the railing, she may turn over. Are you sure she can't turn over?"
"My son is so talkative now, he knows so many words!"
"When they greet you when you come home, it's a great feeling"

Comments like these serve as reminders of the what lies ahead for Vera. T18 infants may not be able to sit upright, let alone crawl or learn to walk. Most do not learn to speak, or at most can say a few words.

It's so easy to crumble when I start thinking of all these. The fact that Vera had no idea she'll be this way. My heart aches (yes have you really felt that before, literally an aching feeling where your heart is) and I cry uncontrollably. But it passes. I just let it out and carry on.

I guess we'll just have to put aside all "normal" developmental parameters and focus on Vera's own, as they reveal themselves to us.

As Stephen Hawking said, "When your expectations are zero, every little thing becomes a reason to celebrate."

Every minute improvement becomes a milestone.

Singing Again

Little Vera has brought song into my life again.

Somehow, along the way, I had stopped singing. It used to be so part of my DNA - I'd sing in the bathroom, in school, in competitions, in musicals...then the passion sort of waned with working life, married life.

Now, I have reason to sing again. Because little Vera likes it. She cocks her ear to the side where she can hear. I'd place her on my lap and start a melody of songs - children songs, 'made up' songs and some I've composed just for her, like "Good morning Vera".

Seeing her happy and calm is incentive enough for me to keep singing. I know that this is the best way I can possibly communicate with her now - through sound and voice, given her poor vision.

To lend a slice of Elton John's refrain:

"You can tell everybody, this is your song
It may be quite simple but now that it's done
I hope you don't mind, that I put down in words
How wonderful life is, when you're in the world."

Happy 4th Month

4th Month developments:

1) Vera starts to smile

2) Vera enjoys morning exercise

3) Vera's eyes continue to clear

4) Vera's fingers are more relaxed now, less tightly clenched

5) Vera's cradle cap is clearing

The New Mom

...is a dad.

Ian has taken 3 months no pay leave to care for Vera. And he's settled into his role much, much better than me. He has a natural flair for pacifying Vera, and tons of patience. I have returned to work, after spending 5 months at home. It felt good to be back at work. A change of environment is always good.

At one point during my pregnancy, we'd ponder over who'd look after our baby after she was born. Well, I guess when you come to it, the answer unfolds itself.

Feeding Vera is the main challenge. Because she's tube fed, she doesn't get the immediate satiated feeling of feeding through mouth. So if she's hungry and starts to cry, she won't stop till she gets the "full" feeling, which only occurs towards the end of the feed. The problem is, the milk won't go down if she's crying. Hence the catch-22.

During a "crying feed", pacifying her and hold the syringe, pouring the milk, plunging, can be quite an acrobatic task, if you're alone. But Ian, being the engineer that he is, has found an ingenious way to get around this. He hangs the syringe from a clothes hanger.

We've also settled into our roles better now. It's a far cry from the initial days, when I was constantly feeling the strain being the main caregiver while Ian was at work.

Now, knowing how busy it can be at home, I try to rush home after work and help out as much as I can. And Ian, knowing how tiring it can be to go to work the next day, tries to cover at least one night feed.

It's tiring, but I'm really happy with this arrangement. I'm glad to say I'm actually starting to enjoy Vera together with Ian. There are much more happy moments now. It's also great to see that she has started to smile, and respond to us when we play with her. At least one of my wishes has been granted!

A Whole New Ballgame

No one told me post-partum was going to be so hard.


Having Vera in SCN was easy; the nurses took care of her, and I could rest between expressing milk every 3 hourly. Suddenly with Vera home, I had to wake up every night to feed her AND express milk. It was like going from the fire into the frying pan.

Thankfully, Ian's sister came to stay with us to help for 2 months. She did the 2am feed, while I did the 5am feed. Throughout the day, she helped with the cooking, feeding and playing with Vera. She was a godsend. I don't know how I could have gone through it without her.

Dealing with lack of sleep was one thing. Grappling with the blues was another.

Before delivery, I was pretty confident that I wouldn't get it. Wrong. Gripped with a sense of incompetency in handling a newborn and anxiety over coping with her crying, I succumbed to The Blues.

For no reason, I would start to cry. I'd feel really sorry for myself. I'd rant away at Ian. Then cry some more. I'd freak out when Vera's tube came out, partly because I hadn't mastered inserting it. "Why didn't you change her tube? See, now it's come out!" I'd belt out at Ian who was at work, even though he couldn't do a thing to help.

It reached a point when I knew I had to get some help. At least I knew there was a problem. I went to a gynae, expecting to get some medication to alleviate my constantly rapid heartbeat.

"I'm sorry," he said. "Any medication would affect your breastmilk, so I can't give it to you."

I had no choice but to deal with it. Turns out, having Ian's sis around was the best medication. I had someone to talk to about how to care for Vera, someone to show me how to pacify Vera (yes I was learning from her instead!), someone to keep a tab on my emotions.

In two months, I got better. I stopped crying spontaneously. I also got better at the tasks - especially tube insertion. Today, I've stopped feeling fearful and anxious about it. And that's a BIG improvement.

I can't say however that I'm all pro at pacifying her though. Patience has never been my strongest points. When Vera cries non-stop, it gets to me. And when I'm tired, it frustrates me even more. I still have a long way to go...

But all in all, the three of us must have done something right. Because Vera went from 1.8kg to 3kg at home! Doctors had told us it'd be months for her to even reach 2kg.

Vera has proven them wrong.

With lots of love and affection, even the frailest flower can bloom.

Very Special Care

"Vera's been transferred out of ICU!"

After just 12 days, and a day after receiving her diagnosis, Vera was moved to the Special Care Nursery (SCN).

What would have initially been a moment of rejoicing was now tempered by the news of her diagnosis. Instead of celebrating, we wished she could stay in ICU a little longer. We were afraid that the "intensity" of care for her would drop if she were 'downgraded'.

We needn't have worried. There were apparatus to monitor her heartbeat. Overhead warmers when the ward got too cold. Oxygen "boxes" for placing over her head in the event she had a bout of desaturation (low oxygen intake).

Most importantly, visiting was no longer restricted to lunch and dinner time. We could spend the whole day there if we wanted. Now, we could get near Vera long enough to start getting to know her.
The first thing I did was give her Kangaroo Care. What a sweet term, right? It means carrying your baby skin-to-skin, under your clothes. Just like how a mother Kangaroo carries her baby in a pouch. Even Ian 'kangarooed' Vera. Kangaroo care has been known to help preemies grow better. Newborns get to listen to their mother's reassuring heartbeat and feel the body warmth.

During the 2 weeks in Special Care, we learnt what we needed to know to care for Vera at home. Tube feeding, diapering, bathing. Whenever we were there, we'd take over from the nurses. Slowly, we got the hang of the basics.

The most challenging however, was Tube Insertion. I watched as the nurse inserted the tube into Vera's mouth and into her throat, causing her to choke. I was petrified. You mean I have to do this? I never quite mastered it before we took Vera home. "Ian knows how to do it, I'll leave it to him" I thought.

In Special Care, the care was indeed special. The nurses called each baby by name, and treated them with love and gentleness. Also, Vera had 'friends' here, next to her cot.

There was 'Inspector Brian', a preemie who had spent months in SCN and had grown into a big, chubby toddler. He was always propped upright in bed, surveying everyone, hence his nickname.

Then there was fair, slitty-eyed Shernice, another long-staying preemie, 5 months now in hospital, and about to go home too. She was a chubby toddler too, with characteristic overabundant cheeks of preemies pumped with lots of formula milk.

I will never forget those 2 weeks. Walking down the long aisle towards SCN, bringing expressed milk to Vera, washing our hands with anti-bacterial soap because of MRSA, expressing milk in SCN, watching her oxygen levels on the monitor, worrying whenever it went down.

Looking back, it was a miracle that Vera was even transferred out of ICU. Many T18 babies do not make it out of Intensive Care. Even if they do, they have to be on C-PAP (oxygen breathing aid inserting through the nose). Vera left ICU without any wires or apparatus attached to her.

Finally, a few days before her 1st month, we checked Vera out of hospital. She was coming home.

Home to another brand of Special Care.

Breast is Best

Was I going to breastfeed my baby? Of course.

But when the time came, my baby wasn't with me to breastfeed. She was in ICU.

Recovering in the ward, I watched as nurses pushed babies in cots to their mothers to be breastfed. There I was, still with a big tummy (it doesn't recede so quickly), no baby beside me, you wouldn't be able to tell if I had given birth or not.

On Day 3, I woke up in the middle of the night. Hmmm...I should be producing milk for Vera right? Suddenly, I recalled reading about how important giving newborns colostrum was. Now, how am I going to do that? Alone in bed, I was totally clueless. I called in the night duty nurse and asked her how to do it. There, at 5am in the morning, I somehow managed to produce 5ml of colostrum! My first drops of milk...I was overcome with an immense sense of achievement. Finally, there was something positive that I could do to help my baby.


The initial euphoria didn't last long. Hours later, engorgement set in. A Lactation Consultant came by to help. She massaged, pressed, squeezed, kneaded my breasts. It was an excruciating ordeal which brought me to tears. "No pain no gain" she said.

Sitting in bed cupped with cabbage, I felt like a battle-worn soldier. "There MUST be another way," I thought to myself. There was. A gentler, more effective way.

On Day 4, I visited B's Lactatation Consultation Doris. She showed me how to coax the milk out. Minus the pain.

From that day on began a rigorous schedule of expressing milk every 3 hours. That's all I remember doing during my 1-month confinement. Eating, expressing, sleeping.

Ian would shuttle to and from the hospital, bringing what little I could produce to Vera in ICU. Without a baby to stimulate my breasts, they would produce milk, but not in the copious amounts of breastfeeding mothers.

During those first weeks post-partum, still feeling weak and constantly exhausted, getting up every night to express milk wasn't easy. But I had a very supportive husband. When my hands ached from wrestling with the stubborn clogged ducts and I could massage no more, he lent his strength. I realised then how much I loved Ian.

Today, Vera feeds from a tube inserted through her mouth to her stomach. Babies with T18 have a weak suck and swallowing problems so breastfeeding even bottle feeding is not advisable.
I never got to breastfeed Vera. Do I miss having that experience? Not really. Because what mattered was that she got to drink my milk. And that I gave her all that I had.

A Grim Diagnosis

A piece of news can change your life forever.

Or perhaps, it already did the day I found out I was pregnant.

Vera's diagnosis came like bolt out of nowhere. We were on yet another visit to the ICU; it was her 12th day there. By then, I was almost getting used to her being there.

Two days ago, she had opened her sleepy eyes momentarily for Mummy and Daddy. We also heard her hiccup! She was on bililights for jaundice, her eyes were still cloudy, and her weight had dropped 300g to 1.6kg. Yet I was in relatively good spirits, knowing that babies can lose their birthweight but majority regain their it in a few weeks. Doctors had flagged us about a few abnomalities, but said that they were not yet able to piece the various signs of the puzzle together.

Upon reaching the ICU, I was surprised to see that Ian's dad and elder sis were there. Why the sudden gathering? "The doctors have some update for us" Ian said.

We were ushered into a room, like a tutorial room. I took out my trusty record book, ready to pen down what the doctors were about to say.

"Vera has Trisomy 18," they said. "This is a very serious condition. 50% live a few months. 90% do not make it past their first year. The less than 10% that do live suffer severe developmental delays. Most do not live past their teens."

The doctors went on to explain how it is caused by faulty cell division, a random act of nature. Instead of making 2 copies of the 18th chromosome, 3 copies were made in every cell in Vera's body. Hence "Tri"somy. This is the 2nd most common Trisomy after Trisomy 21, Down's Syndrome. However, you don't hear or know of it much unlike Downs, because most fetuses do not make it to birth or are stillborn.

A laundry list of the abnormalities she had was described to us. Most importantly of all was a heart defect called PDA, Patent Ductus Arteriosus, meaning "open duct". This heart vessel closes automatically when a healthy baby is born. Vera's hadn't closed. This condition leads to abnormal blood flow between the aorta and pulmonary artery, two major blood vessels surrounding the heart. As Vera's PDA was large, she was at risk of developing heart failure, bleeding in the lungs and problems with lung development.

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.

We were also told to expect very slow weight gain. "It could be months before she even regain her birthweight of 1.9kg." they said.

The doctors went on to describe how they were going to treat Vera's case. Conservative Management they call it, or 'Comfort Care'. What this means is that they will "let nature take its course". They will not perform any surgery, as it would put Vera's life at risk.

It was the worst kind of news in the world. But surprisingly, I managed to remained calm. Calm enough to ask questions and clarify what I was hearing, making sure I understood fully what was being said.

But the minute everyone left the room, I broke down in Ian's arms. Why is this happening to OUR baby? Are they saying our baby is going to DIE??? Why weren't the doctors going to do anything? Why do they have the 'lost cause, nothing else we can do' tone of voice? We hugged each other fiercely. And there and then, we made a pact that we had to be strong and face whatever comes along together, because 'two is better than one'.

It was time again for me to express milk for Vera. I watched it flow from me, drop by drop, like tears from my heart.

NICU Days

The emotional roller coaster ride started the moment Vera was born.

I was bed-ridden from the operation. 12 hours after it, I still had not seen my baby. Ian and mom would visit her in ICU, and I would get updates from them.

Those first few days were really hard. But for Ian it was even tougher. Shuttling between ICU, getting updates from doctors and visiting me in the ward.

Seeing Vera for the first time from a digital camera picture was hard. It was a shot of her crying...she looked like she was in so much pain. Why did she have all these wires and tubes attached to her?

As we were apart, Ian would record my singing the songs I used to sing to her when she was inside me and try to play it to her in ICU. Somehow, I just had to let her know I was there. From the snug, warm comfort of the womb to the cold, bright world of the ICU, what a rude shock that must be.

On the second day, Ian wheeled me to see Vera. I entered a world only a few ever get to see. Rows of babies, tiny babies, some mere fetuses, loads of equipment, bluish bililights, incubators, constant beeping from monitors. I tried not to be overwhelmed by the fact that my baby was one of these babies.


It's hard to describe seeing Vera for the first time. Something like "So, it was you all this time in my tummy" At 1.9kg, she was so tiny, so fragile. But she looked like Ian! It was pretty obvious. And she had a lot of hair, in a swirling circle. Lots of hair just like her daddy (when he was younger hee).

Just before I was discharged from the hospital, we got to hold Vera for the first time. It was night, and the ICU was empty. A Sister put her into our arms, arranging the wires attached to her. I was overcome with emotion. I was finally holding my baby.


What a strange feeling, leaving the hospital without her. But we knew she was in good hands. The ICU staff worked 12 hour shifts, yet they always had time to update us about her professionally and patiently.

Vera spent 11 days in ICU. Her eyes were mostly closed, not quite aware she's already out of the womb. We stroked her, the only thing we could do, as we waited for doctors to complete a slew of tests on her to confirm her diagnosis.

I was prepared for bad news. But no amount of preparation would have helped for what we were about to hear.