29 August 2008
Back with Tinny
After a long hiatus, I caught Vera smiling at Tinny in her sleep again! Must be on the rebound...
28 August 2008
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.
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.
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.
24 August 2008
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!
23 August 2008
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!
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!
19 August 2008
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.
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.
16 August 2008
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!
14 August 2008
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.
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.
12 August 2008
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.
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.
07 August 2008
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"?
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"?
06 August 2008
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.
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.
04 August 2008
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.
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.
03 August 2008
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!
02 August 2008
Cliffhanger II
Cliffhanger II : Escape from Cradle Island
Like all great movies, there's always a sequel.
Starring Vera, living dangerously once again.
01 August 2008
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.
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.
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.
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