Better Today

After 2 days of intensive care from my mom, Vera is better today. She stayed over and was a great help - a non-stop wailing baby that's inconsolable round-the-clock can REALLY get to you. It reached a point where I just said "I give up", handed her to my mom and went to sleep. At 6am in the morning.

The worst seems to be over. She smiled a little today. And started to stand in our arms. She's only vomitted once. Looks like she's on her way back to the Vera we know. Hooray for Mamas who come to the rescue!

Falling Off The Bed

Vera fell off her cot 2 nights ago. And mommy has every reason to be blamed for it. How did it happen? Aren't we supposed to pull up the railing when she sleeps? How could we be so careless?

Mommy's guilty as charged.

A couple of factors all added up. Usually, I'm the one who gets up intermittently through the night each time Vera sounds off that she needs to be turned. Either because she's heated up on one side, or because of nose blockage. That night, for some reason, I went to sleep in another room. Vera seldom moves like she did months ago, turning 90 degrees in her cot, so it really never occurred to us to pull up the railing. Also, to help keep her milk down during night feedings, her cot is slightly elevated, slanting towards the movable railing of the cot.

The little girl must have wriggled to be turned, all the way until her legs were hanging off the bed. And all this while, Daddy didn't hear a thing. He's not a light sleeper like me.

At 330am, I was awakened by The Thud. It was so loud I heard it from the room down the hallway. It was every parent's worst nightmare. In the dark, I fumbled to see what happened. "She fell off her cot," Ian said. He had already picked her up from the floor. By then, she was wailing. In the dark, I saw blood on Ian's T-shirt. I panicked. "Oh no, she's bleeding...what have we done?" I call Dr B. It was 4am. She told me to put cold compress on her mouth to stop the bleeding before bringing her to the hospital. In a blur, we packed her bag and sped down.

Please God, don't let her head be injured, please, please. Vera finally calmed down in the car, or finally awakened momentarily from the shock. In the bright light at the A&E, we saw that her upper lip frenulum - the soft tissue linking gum to upper lip - was torn. She must have fell head down and the upper jaw took the fall. We fed her and soon she was asleep. In the car ride home, she recoiled several times as if in aftershock.

The past two days have been pretty stressful. She's vomitted 5 times in a day, probably because she's been crying too much. Her upper lip is bruised and blue-black as she's experiences real pain for the first time. Mr. Mucus is back with a vengeance (or did he even go away) and she sleeps fitfully because she can barely breathe through the blockage.

She's stopped standing like she used to in our arms, stopped smiling, and stopped touching her lips with her fingers (her favourite pasttime).

Although there may be no head injury, what I'm afraid of is that there could have been some impact on her spine. We'll be bringing her to a Chiropractor to find out. Fingers doubly crossed.

Mucus Madness

It's crazy. Vera's nose has been flowing with mucus for 13 days now. Sometimes it's green and thick, sometimes thin and stringy. Whatever it is, stuffs her up, cakes up and makes her nostril opening smaller, blocks her airway and causes bouts of gagging when she sleeps, and has to be turned left-right-left through the night. She hates us dabbing it away.

I had a hunch that having the tube through her nose was aggravating the situation, so we switched it to the other nostril. Voila! The former nostril stopped dripping! (at least for now) I'm getting real tired of this tube...

But having recently seen the amount of maintenance and cost that goes into g-tube feeding...cleaning the tubes and sterilising all the apparatus parts after every feed, have also made me think twice. Maybe we'll let Vera decide. The day she can dexteriously pull out the tube, we'll get the message.

Meanwhile, please give Vera a break Mr Mucus. It's Christmas, go on holiday.

Falling Sick

Vera has caught a bug from none other than her momma. I caught it from the office and was down with a bad runny nose and sore throat. Vera caught it soon after. The bout is into its 6th day now. She’s been so stuffed up with mucus and unable to clear it, she sounds raspy with the sore throat, and it interrupts her sleep at night every few minutes because she can’t breathe properly. Ian and I are up through the night, rocking her back to sleep every time she gets choked on the mucus. I’ve tried Illadin nose drops but it doesn’t really help and she hates it. We try sucking the mucus out manually with a nose cleaner but it’s so slow and doesn’t have strong suction power. I’m really tempted to rent one of those industrial ones they use in hospitals…like a vacuum machine! Anything to make Vera feel less congested.

Daily PT and speech therapy is completely on hold and I worry she’ll regress. Already her neck stiffness has gotten worse.

Babies falling sick are so stressful.

Fingers Are Fun

Our dear little friend's best friends: Her fingers. Initially stubbornly clenched, they can now open up at times quite fully, although just for seconds - a feat for Trisomy 18 babies I believe.

And from thumb sucking, Vera has moved on to her index finger...helping to do her own therapy to straighten it.

Her First Christmas

This is the closest Vera will get to snowmen. I wonder if she'll ever get to experience snow. Come to think of it, neither have I. Maybe next winter, just maybe.

Christmastime always makes me realise how quickly the year has flown by. It has been a life-changing year for Ian and I. It started as one hell of a roller coaster ride and has turned out so, so different from what we were told to expect. Vera shouldn't be seeing her first Christmas, but she is.

Here's to many more Christmases with you, little girl.

Overworked

If you're wondering why posts have been few and far between, that's because Vera's momma has been working crazy hours the last 2 weeks. 10pm, 1am, and tonight, well, let's just say the night is still young.

You see, I am the writer on an advertising pitch. And winning, is the aim here. I love the challenge of the work but the hours working up to the presentation are punishing. (Once, I worked till 6am in the morning.)

But now, I'm not the only one who's affected. When mommy works late, daddy has no respite all day with Vera. That's one too many single-handed-tube-feeds-leading-up-to-vomitting in a day. Daddy doesn't complain, but mommy feels bad.

But most of all, mommy misses Vera. Last night, she slept at 1am, and still I couldn't catch her.

Should mommy continue working this hard?

Losing Weight

Vera's been losing weight over the past month. 7.6kg, 7.5kg, 7.4kg (16pounds). I wonder if this is average for 10 month old Trisomy babies? We're definitely underfeeding her. But the girl isn't able to take very much at one go. 120ml (4 oz) every 3 hourly is what she's on now. We don't feed her at night though in case it disrupts her sleep. Hopefully, it doesn't continue to slide.

Music Please

This is Vera's all-time favourite toy. When we make her press the buttons, they light up, and so does her face as well (or at least she'll stop fussing). In fact, her clenched fist will sometimes open up even, in preparation for pressing the buttons. She's definitely getting the hang of it.
We know it's not just the lights, but more the nursery rhyme music. Other musical toys seem to work as well. So, can Vera hear some? We don't need a test to tell us that.

Another Big Sister

An old school friend brought her daughter to visit Vera recently. I think her daughter can babysit Vera for us.

9th Month Update

Here's the low-down on Vera at 9 months:

1) Blood pressure: was moderately high, no change. According to her paediatrician, it's systemic and not pulmonary. Latest reading last week was 102/51 and 90/63.

2) Eyes: Right eye still lagging behind left eye in clearing of the haze, but both eyes move much faster now (almost immediately) in following objects and faces. Both eyes seem to move in unison.

3) Ears: Although Vera failed the hearing test at 8 months, we're pretty positive she has some hearing. She turns to sound, and responds to musical toys. So much for costly tests.

4) Breathing: Still a noisy breather when sleeping, but we've noticed some nights where she's pretty silent for a period of time. Definitely not the congestion during the initial period of switching to nasal feeding tube.

5) Teething: Definitely, although no signs of any teeth yet. She keeps gnawing at her fingers and hand, and can get pretty upset when she can't cos we're holding her by her armpits like a pair of crutches. Some drooling has begun.

6) Feeding: Therapy continues post VFSS. We're getting her used to spoon feeding. Water is well-received in tiny spoon sips, puree too, but not if the consistence is too thick. However, liquids still flow too fast down (it's like how we take a gulp) and choking occurs. She does not like more than 1 teaspoon of puree though (what a long way to go...)

7) Nasal Tube: Vera's face has been marred by rash caused by the sticky tape. It is aggravated in hot environments (triggered by our over-ambitious Big Walk) and by her constant face-scratching. We alternate the tube position from cheek to cheek to allow the opposite side to heal.

8) Raised chest: Vera's chest protrudes on the heart side i.e. her left. We think this is linked to the thickening of some of the muscles surrounding the heart. It is probable that she is using extra effort to breathe and this causes her heart to work much hard (hence developing muscles!) This is not a cause for concern now (but maybe in future it may).

9) Flab: Double chin and tummy have excess blubber hee.

10) Neck Control: Vera is still weak in this area. On her tummy, she can turn her head from side to side. However, she still cannot hold her head up, nor tuck her arms to her chest to push herself up. As she gets heavier, this will get harder.

11) Fingers: We've seen marked improvement in her fingers. No longer are her fingers clenched. After months of intensive daily massage and holding, they have relaxed so much you can almost hold them to a flat palm (almost). In fact, now we're having the opposite problem of getting her to grip things! But a few days ago, she did hold up a pencil for a few seconds so we'll continue gripping therapy. Her thumbs however, have developed a life of their own. They are her most responsive fingers. When she's held in the position shown below, (standing is her favourite thing), she'll proceed to 'play the guitar' with her thumb! Imagine strumming a guitar, up and down with just your thumb. Daddy says she even did it with both thumbs today. Thumbs up!

12) Legs and feet: These are much more relaxed now. Kudos to her Physical Trainer Ian. They are pushing against the ground more now in a prone position. Far from any crawling though.

13) Hypertonicity: This means arching back frequently, especially while being carried. This is still present, but much less frequently than in the first 6 months.

14) Immunization: We will start her first in 1 months' time. So fingers crossed she'll not succumb to any viruses till then!

15) Kidneys: Scanned for Wilm's Tumour at 6 months - negative.

16) Spine: Scoliosis has been detected and has to be monitored. Mommy will be sussing out an Chiropractor that specialises in infants so that we can hopefully slow or manage the rate of misalignment.

17) Early Intervention Programme: There are none whereby therapists come to your house (wish we lived in the United States!) The waiting list for a place in the school is up to 6 months. We've just signed up. Hopefully, a school environment stimulates her more, but it also opens her up to a whole world of infection. We'll probably have to get all her immunizations done before that.

Whew. What a laundry list. But there are so many other Trisomy babies with even longer, more medically complicated ones. That makes each item here, a blessing.

Happy 9th Month

A Piglet for the little Piglet! (Yes yes, this mommy fell for the over-priced Disney cake marketing gimmick)

Then & Now

Vera has reached the 3/4 year mark. The 1st picture shows her at 2 months. Looking at it brings back memories. I recall the feel of her, light as a feather. Like a marsupial. Today, she's put on the pounds - from being below the 3rd percentile of normal babies' weight at birth, she's now at the 25th percentile. In fact, we have to watch her weight gain, as it could affect her mobility and activity.

To all who have helped us get Vera to where she is today, THANK YOU from the bottom of my heart. Vera's milk mothers, T18 mothers who give endless support, Vasu her feeding therapist, grandparents, great grandmother, aunties, uncles, friends - you know who you are. And of course to the man who has given of himself so selflessly 24/7 to care for Vera...I could not have found a better man to marry.

Vera baby, happy 9th month to you!

Why Is She Still Here?

This was the thought running through my head on the way to work today.

Why is Vera still here? Why is she getting better by the day? Why hasn't she had any apnea spells? Any seizures? Why is she responding to our attempts in feeding therapy? Why is she seeming to be part of the 10% and not the 90% of the statistics?

I can't speak for others, but I believe she's still here because I haven't learnt all the lessons I have to learn from her. But in these 9 months, she's already taught me tonnes. So much that I haven't actually got time to put them into practice.

She's taught me about compassion for others less able.

Before, I'd walk past people begging in the streets, usually out of some physical disability. Today, I do not hesitate to put a penny in the tin.

She's taught me about not holding grudges.

Ian and I differ at times on her care, but in the end we always let it slide, (he uses humour most effectively in dealing with me), because we know our focus is on her, not us.

She's taught me about the power of love.

That nothing is more endearing that hearing the "conversations" Daddy has with Vera. That love can make a man change the very way he speaks. Ian used to speak pretty soft and without much varying of tone. Ha, now check out the sing-song highs and lows! Porky Vera (as he calls her) responds sometimes with grunts and sighs.

But what's really heart-warming is seeing the effect she's had on my Grandmother. I've NEVER heard granny laugh. Nowadays, it's a common affair when she stays over. Vera has brought simple joy to her. I love the sound of her grand old dame laughter. She actually sounds younger.

Vera has a lot more lessons for me I'm sure. Will share them in time to come.

She Swallows

Vera had her first VFSS today. For Mommy and Daddy, it was like she was going to take an exam. We told her "Do your best ok? Don't panic, stay calm. Remember mommy taught you to umm mum mum?"

We knew Vera's record for sitting still on her own: 5 minutes. So the challenge was keeping her still long enough for the study. We knew that once she cranks up, it'd be over.

It was quite an experience. Mommy had to wear a full-bodied radiation vest and was the only one allowed to be with Vera. Barium was put into her milk, water and vege puree so it'd show us the stuff as it travels down her airway. Vera was strapped into a chair and you could see an imaging of her mouth as shown here.

The first few teaspoons of puree were well-received by the little tubby. Then Vera started to act up. Mommy played her music toy, did her favourite light touch massage, and she calmed down enough for milk testing. It must have been the strange taste of the barium or the strapping down, for she was struggling to be free in no time.

We did not get to stress her enough to test her threshold (before aspiration takes effect). This is usually done so we know how much to push when doing therapy. But we got enough down to arrive at the following conclusions:

1) Vera can swallow. But it takes several tongue movements before 1 swallow.
2) There's a lot of tongue extrusion still (sliding tongue out instead of inwards). Something we need to work on.
3) The spoon works better than the syringe for giving her liquids. It stimulates more tongue movement as it pre-empts her that something is coming through. With the syringe, liquids pool in her throat which is dangerous.

Bottom line, Chu-chu did much better than I had hoped. We'll certainly have a happy 9 month celebration this weekend. Thanks for all your thoughts and prayers for her continued improvement!

Sleep Woes

Vera is a night bird. We've all heard of babies that sleep at 8pm, wake up in the night for a quick feed and go back to bed and then rise early at 7am.

Why can't she do that? The girl sleeps at 6pm, wakes up at 9pm (when other babies are drifting off to dream land) and sometimes sleeps at 2am! The average sleep time is 12 midnight.

Mommy can't outlast her, so daddy takes over. But the little girl is pretty smart: "Hey, this is not the same ROCKER!!! I'm gonna fuss until I get my regular rocker!!!" Mommy has no choice but to wake up (extremely grumpy) to do the honours.

Last night, for the 3rd time only on record, she slept at 8pm! Our joy was shortlived. She woke at 2am then kept Daddy awake till 5am, before groggy Mommy had to wake up to be the rocker.

Zzzz...Starbuck coffee has been getting a lot of my business lately.

Morning Glory

This is Vera when she wakes up in the morning. Minutes from opening her eyes, she'll smile and smile if you tap her hands to her thighs. That toothless grin, spreading from chubby cheek to chubby cheek. Moments like these I forget what she was born with, what she cannot do, what lies ahead. My baby is happy and that's all that matters.

Big Sister

Over the weekend, Vera met some of her bigger friends. This mature young lady here said, "I can look after 2 babies," Spoken just like a big sister. Looking at her made me wish Vera had one.

Swallow Study Soon

All the hard work with feeding therapy is paying off. We had a session with the speech therapist at the hospital, and Vera showed her what she could do with the array of tools - there's the Toothette, the Chewy Tube, the Gum Drop pacifier and the latest addition, a spoon!

Verdict: Vera IS swallowing (they listen to it with a stethescope to the jaw), BUT a little too fast for comfort. Meaning, she can choke. But it's not going into her lungs. Plus, she's begun to show signs of closing her lips around the spoon, instead of rejecting it. However, she can only deal with very small amounts. We've given her apple sauce, pear sauce, peach sauce, and carrot puree so far. Already she seems to like or dislike them.

Bottom line, she's been given the OK for a swallow study (VFSS) in 2 weeks' time. This is a big step towards our aim of oral feeding. We'll find out exactly how liquids are going down into her system. The outcome is we'll be able to determine what textures and consistencies best suit her, so we can continue practising them with her for better results.

We have Vasu to thank for where she's gotten to. He said we must all give special children the benefit of the doubt. He's working towards speech for her, treating her just like a normal child.

Big Walk

This morning we brought Vera to the Big Walk. It turned out to be a Little Walk, because the heat was just too much for her to bear and she cried all the way. We managed just 500 metres of the 5km route. Mommy's too ambitious...

Well, at least she calmed down enough for this shot with the dragonboats on the Kallang River. Hmmm...wonder if our "Tour de Parks" will be shortlived with her intolerance of heat.

New Mat

Choo choo...Thomas the Train come to our house. I thought a proper mat would be good to get her practising turning and sitting on firm ground. Plus the colours should be good for her eyes. If you like this mat, go to this website - there's lots more where this comes from.

A Day More

Every day is a day more
To see your smiling face

Every day is a day more
To hold you in my embrace

Every day is a day more
To hear your winsome sigh

Every day is a day more
To feel your heart heave next to mine

Every day is a day more
To enjoy you as you are

Every day is a day more than I've ever asked for.

Can She Hear?

Vera failed the hearing test at the ENT clinic today. On both ears.

"How can that be?" was my first reaction. We knew she has never responded to sound on her left ear, but she's been responding on her right.

It was explained to us that the test was a very stringent one - even if there's mild hearing loss, you'd fail the test. So there's still a possibility that she CAN hear in her right ear, just not perfect hearing.

The ENT doctor suggested we go for a detailed hearing test, which would clear the matter accurately once and for all, but it requires GA and intubation, which we're not keen to subject Vera to at this point in time. So for now, we won't know for sure HOW MUCH she can actually hear us.

No matter what, it doesn't change things. We'll still continue talking and singing to her.

What's The Point?

I've been meaning to write about the notion of Futility for a long time.

We first heard this word when we received Vera's diagnosis. It's not an oft-heard word you'd agree. Somehow, it belongs to the realm of other similarly little-said words, like Failure and Feeble.

'Futility of Care' - that's the term they use. Meaning, whatever you do is not gonna make much difference to the end result, which is death. This medical term has been inextricably linked to Trisomy 18. I believe it forms the basis for the point of view of some doctors.

"What's the point?"

Well, the point is, that surviving Trisomy 18 babies are human. They are capable of feeling joy, irritation, contentment. The point is, that progress, although very very slow is possible and a reality. And the point is, that Trisomy 18 babies come in different levels of severity. One futile case is no reason for treating all cases as such.

And for those who give their utmost to these miracle babies at home, the result of care, is far from futile.

Happy 8th Month

I can't even wait till tomorrow to post this. Chubby chubs is 8 months old and as you can see, happier than she's ever been.

Medically, here's the low-down. Her PDA is fully closed, there is however a thicken wall in her heart. Her kidneys are normal. She has started to see through her right eye some. Her blood pressure, which is systemic according to the doc, is higher than usual but borderline high.

Physically, she's not raising her head as much as before, hates sitting on her own, but loves people to play with her. Feeding therapy continues to teach her how to suckle and someday ingest food orally.

Looks like Vera's inching closer to the 1-year mark now. Thanks to all of you - family, friends, wellwishers - all cheering her on on her mini marathon.

Nightmare

Last night, I dreamt that Vera died. I know I shouldn't be talking about such stuff, but this is an honest blog of the good, the bad and the ugly, so.

It was so real. She was like she looked at about 2 months old, still thin and small. We were at the hospital for a routine check and it just happened. I cried like crazy in the dream. I remember regaining composure, then breaking down again. Crying in your dream is very tiring. You can't control or stop it. The only way to get out of a nightmare is if something jolts you out of sleep.

And that was Vera making noise. You can imagine my relief upon seeing her sleeping next to me. Things may be going well for her now, but you know, the dark dreams are never far away.

Walk in the Park 4

We have many parks to cover so here's Punggol Park, a picturesque suburban park with a big pond. Vera however was too sleepy and trying to shield her eyes from the sunlight.

Getting A Manicure

Personalised in-house service available. Comfortable seats. No charges.

One Pull

...and it's out! We found the ng tube, next to the little girl. I think she's going to get much better at this with daily practice.

A “Better” Diagnosis

Someone remarked that she was relieved that Vera has Trisomy 18, rather than something else like Golden Har Syndrome. Relieved because the infant would live much shorter and that would spare us her parents from a long-term burden. Incidentally, I did a check on survivors of Golden Har, and some are well into their 40s.

She also suggested then that if I needed to stop expressing milk, (in case Vera passed away) she could prescribe medication for me to reduce milk production. Now, my baby is still alive. It seemed then that people were helping me plan for when she was not.

At that point of time, I really couldn’t understand the logic behind those statements. Of course, now it’s becoming clear to me that some doctors are really on the other end of the spectrum in their viewpoint.

We’ve just got to find the ones that are on our side.

Low IQ Girl

A harsh title on purpose. Because that's how insensitive a comment from a particular doctor was.

We'd gone to see this doctor to understand if Vera's kidney function could be causing her hypertension.

It was a first visit and she had no background, so I started by saying that Vera was on active management and what's important is that her PDA had closed, her corneas are clearing, she's responding to therapy...and she interrupts by saying:

"What's important is that she will have low IQ. Dr X has gone through this with you so I don't have to explain further."

What??? I couldn't believe my ears. I was on the verge of giving her a piece of my mind, but decided it was not worth my effort. After all, you can tell a 'holier-than-thou' face when you see one and boy, did she have it.

So much for someone like her, who apparently has 'high' IQ. Pity, what poor EQ.

So little Vera, this is what you're up against in this world in the eyes of some people: You've low IQ and that's all that matters.

I've read horror stories about insensitive doctors of other T18 moms, so I guess everyone gets an experience like this.

Well, we know what really matters: Seeing Vera smile, seeing her grow, seeing her in the morning the next day.

The fact that she still exists, is important reason enough.

A Really Good Day

Yesterday was one of those days when you just can't believe your luck. Vera was such an angel. She did not cry even once the entire day. She enjoyed all her feeding and physical therapy and fell asleep real easily. For the first time, she even watched TV sitting in her rocker! Days like this are few are far between, so I really cherish them. Not because it's easier on me, but because it's great to see her contented all the time. Like Ian says, "What a strange day..."

First taste of "food": Although we haven't yet done a swallow study, we have to get her tastebuds stimulated. She seems to like the fruit gel. It's a good start!

Sweat-it-out: Head raising therapy continues. The little girl is working really hard!

Daddy Still Sick

It seems like Ian's taking rather long to recover. It's a good thing I recovered fast. And Vera, though still congested and breathing very noisily, is not been woken up by it intermittently at night.

It's tough when Ian is sick. I can't just pass her over, whenever I get tired out. But hopefully he should be back to normal in a few more days. Plus we've had my mom and aunties over to help out, when I'm at work.

New Seats

At 7kg, Vera isn't light as a newborn anymore. Explains why we need to start getting her used to sitting on her own. The first six months, she wouldn't sit along for more than 5 minutes. Then suddenly today we put her in the blue, under-utilised rocker and she sat for nearly half an hour, happily watching TV and sucking her thumbs! And I could actually be posting this blog while watching her! This is a very VERY good sign.

She still can't sit up straight though. As you can see, her head is still weak and it flops back when she's in the Bumbo chair. That sitting record: 5 minutes.

Next, I couldn't resist buying a breastfeeding pillow that I thought I could use to get her to learn to sit up. Mummy likes it more than Vera (don't you just love the retro print?)

Once she gets used to her new seats, that's when we can give our arms a rest!

Eye Spy

A spot of good news: We suspect the haze in Vera's bad eye (her smaller right) is actually clearing.

There had been no progress for months. So we were only hopeful about her left eye clearing. Well, let's hope the good news gets even better!

All Three Down

...with the flu bug.

After 7 gruelling months of sleepless nights and 24/7 days, Ian finally falls sick. It's a wonder his immune system as held out for so long.

Problem is, I'm sick as well. And Vera too. Ever since her nasal insertion, mucus started to dribble from her nose, and it's become really congested over the last few days. It obstructs her breathing so badly she keeps waking at night. Crying non stop because she really wants to sleep. Her whole nose/throat cavity sounds like it's rumbling or gurgling.

To add to this, she's been retching again. We thought the nasal tube would put an end to this. Not so. We really don't know why.

It's been really trying these few days. She's on medication for the congestion now, but we've yet to see it's effectiveness. Fingers crossed.

Meantime, it's groggy baby, groggy mummy, groggy daddy.

Back To Usual

Vera is not so lax now. Back to her usual hand-sucking self. She's smiling much more again, so it's a relief. She got me worried for a while. This week, we'll be seeing a dietician to get more clarity on her nutritional needs. Her milk intake has reduced, and she doesn't seem to need as much as before. We hope to find out if this is normal. Plus she can't start on semi-solids, so how's she going grow well?

Some therapy updates:
1) Torticollis - With the stretching exercises we're doing, she's turning more easily towards her right side now, her stiffer side. Lots of work still needed though.

2) Feeding Therapy - We're starting to desensitize her mouth using the toothette and to train her to suck on a pacifier. Naturally, she pushes them out at the moment. It's early days. But least we're actively doing something.

Why So Lax?

Vera has been pretty lax lately. She'll be awake, but her limbs are quite flaccid. When I play with her hands, they'll be quite limp. This seems to have coincided with a drop in her milk intake. It seems like she doesn't need as much as before. We can tell because there'll still be milk drawn up through the tube at feeding times.

Is it because she's not getting enough to eat? Because she's not taking semi solid food? Is it because she's overfed and thus feels lethargic? Or because she can't support her own weight? Or is this the first sign of deterioration?

I really don't know.

Ten More Mls

Vera had some little friends come visit today, Children's Day. She was crying so this little boy held up a musical toy to pacify her. We told him he had to hold it till the milk went all the way down. He obediently did, standing motionless, watching intently at the syringe ("Is it going down???")

Children are just so innocently charming.

First Step To Freedom

After months of throwing up due to the tube irritating her throat, it's now OUT OF HER MOUTH. Finally, she can suck her hands and fingers all she wants. Finally, no more constant tape changing each time saliva soaks it up.

We have her Speech Therapist Vasu to thank. He took one look at her and urged us to get her onto NG (nasal gastrostomy) tube without delay. The tube had already caused a ridge to form in her upper palate, like an inverted canyon! That would cause further problems further down the line, like stunt teeth growth.

It was traumatic to watch though. Vera cried her eyes out. Of course, who likes something thrusted up their noses and without warning? With time, she should get more used to it. We hope.

For those who know about my initial aversion to tube insertion, well, here it goes again. Another mental challenge to overcome!

Go Nasal

"Get her onto a nasal feeding tube," was the first thing Vera's Speech Therapist said to us.

Suddenly, it dawned on us. We'd become so used to the oral tube after months that we'd forgotten why it was there in the first place: only because her nostrils were too small at birth. Certainly they must be big enough by now for the feeding tube.

Imagine what that would mean: No more Vera gagging on the tube, no more vomiting, no more cleaning, washing clothes and sheets every day. Just Vera sucking away at her hands with relish.

Can't wait to get her 'nose job' done.

Normal vs Special

The irony of these two words have always intrigued me.

For kids that are born so perfect, so wonderfully made, they say they are just 'Normal'. How can that be? They are way way beyond special, because so much has to go right for them to be born that way.

And for kids whom are mentally or physically handicapped, people are embarrassed to call them as such. So they use words like 'Special' as an euphemism. But the truth is, these kids ARE special, in every sense of the word. Firstly, something is special when it is rare - and such kids are rare. Secondly, these kids are special because they fight harder than any other to do 'normal' things.

So there. To all the parents with 'Normal' kids. Please treat them extra extra special.

She’s A Great Grandma

…literally. She’s great at calming Vera and even putting her to sleep. After all, she’s raised 5 children herself, and has lots of experience with grandkids. When she speaks, Vera pays rapt attention. I believe it’s because this grand 88-year-old dame stayed with me for the last two months of my pregnancy, so Vera heard her voice everyday before she was even born. These things cannot be scientifically proven. You just know them with your heart.

Walk In The Park Pt 3

Vera has park-crazy parents. This is her third park – Changi Beach Park. A quaint, laid-back coastal beach where old bumboats dock. This used to be mommy and daddy’s frequent hangout. Now, it’s with baby in tow!

The Sun Shines

…when Vera smiles. She made our day with a whole lot of it yesterday. There’s just something about a toothless grin that really melts my heart. Every smile says ‘I’m happy to be here with you. I like that thing you do, it tickles me.” No wonder people have more kids. They just can’t get enough of these utterly magical moments.

Enough Sleep

When Vera gets enough sleep, so do we.

That’s what we’ve learnt after months of trial and error. We thought that keeping her from sleeping in the day would tire her out and make her sleep longer in the night. Wrong. She gets more cranky and cries all the way to bedtime.

Now, we try to make sure she gets at least 2-3 naps in the day. It seems that letting her sleep enough in the day, makes falling asleep at night less of a trying affair. She also cries less and smiles more when she’s well rested.

Best of all, she’s slept for 8 straight hours through the night for the last 4 nights! Our first all-night rest since birth. It’s cause for celebration.

The problem is: I still wake up in the middle of the night, like clockwork!

Favourite Pasttime

Finally, finger sucking has begun. From being able to aiming her thumb into her mouth, Vera has progressed to sucking on her fingers whenever she's lying on her side. It's a good sign: it shows that she's exploring her own hands, and able to pacify herself with them.

However, the downside is that the movement shifts the feeding tube, it irritates her throat, and causes her to vomit her milk out. It's painful for me to watch - the little girl is just doing what babies do, and has to put up with the consequences.

Boy, do I hate this feeding tube.

Hold Your Head Up Part II

It's clear she still doesn't like it. We were taught to put a rolled towel underneath, and push her elbows in to help her practice pushing herself up. Clearly, her hands don't have the muscle tone for this yet. She can raise her head once or twice, and then tires. But it's a start. Hopefully, with time, and practice, this gets easier for her.

Vera Has Torticollis

According to the Physical Therapist (PT), Vera has Congenital Muscular Torticollis. This refers to a tightness in one side of her neck muscles. It causes her head to tilt to one side. It's something that can be corrected with lots of daily stretching of the neck muscles, on the tight side. This condition will take up to a year to resolve. If no therapy is done, surgery may be needed to release the pressure on the muscles.

Vera's thigh muscles are also very tight. We were given a set of stretching exercises for her.

She enjoyed the music therapy. It's funny how she looks like she's learning to play the piano!

The Way I See It

Never thought I'd say this, but yes. We're in a good place now with Vera. She's responding more to us than ever. Not anywhere near normal babies, but she's showing us new abilities, here and there, like sucking her hands, sucking on my finger, responding at times with big smiles.

Everything she does I see as a bonus. Because they really are. And it's a great feeling you know? Not expecting anything from your child. Other people stress over whether their kids do well in pre-school, college, university, in their career, in their love life...all through their lifetime. We're not on that yellow brick road.

For me, it's entirely different. It's 'Hey Vera. Let's see what you can do. What you can't is ok, it's already much more than we hope for.'

For others, if their child passes on prematurely, it is a life cut short. For Vera, she's already outlived her expectancy. When I realised this reality, it really put things into perspective. It gives me a great feeling of release, a freeing of the heart and mind from fear of the future.

What about Quality of Life? Some ask. She'll have so many medical problems. Well, don't we all come to that stage at some point in our lives? When we're old, tired, weary and unwell. It's the same life process isn't it? Delayed for us so we don't have to deal with it just yet; Accelerated for babies like Vera.

One mother once told me, 'This journey is an intense one'. It sure is. Because you can ever feel, joy, pain, peace, frustration...all come together in every moment.

I hope I survive the ride.

The Haze is Clearing

More about Vera's eyes. Over the last weekend, it seems that the hazy film over her left better eye has cleared much more than before. We'd stopped monitoring (and got lazy with putting the eye drops) because we don't really see any change day to day. Then suddenly one day, I noticed that her left eye looked darker. It also coincided with her starting to follow our faces. And strangely, over the last few days, she's been a lot calmer for longer. It's really a miracle.

For all those who are rooting for this little girl, thank you so much for your thoughts and prayers. One thing is clear: Vera wants to be here!

She Follows

A repeat of the photo of the month...because finally, Vera can follow our faces with her eyes!

This is a milestone for her. At last, we know she can at least focus. Although we don't yet know what is the quality of her vision. The little girl must be seeing better than before though, because she keeps awake a lot more now, as if there's more to see. She loves the 'light show' when we're out for a drive at night as well.

Look here Vera! It's Mama and Papa!

Walk in the Park II

Today we brought Vera to West Coast Park in the evening. It was a first for us as well. We spend too much time in the house, so it was nice to just get out in the open.

The little girl however doesn't seem to like being awake in the day. It's possible her hazy corneas scatter the light and therefore makes overly bright environments uncomfortable for her eyes. So might as well sleep. Next time, I'll post a pix of how big her eyes open at night!

High Brow

I don't know who Vera got them from - her flaming, pointy eyebrows. See the way they sharpen upwards? In Asia, this brow shape is commonly associated with fierce people. Let's just say they're her 'fighter brows'.

It Takes a Man

When you see someone every day, it's easy to take the person for granted. But at the end of the day, I always remind myself how lucky I am to have Ian caring for Vera in these early months.

You should see him...how he cajoles her no matter how exhausted he is; how he carries her, no matter how his back is aching; how he stays with her, no matter many hours she's been crying. How he handles the difficult feeds singlehandedly without letting frustration get to him. It's Patience with a capital P.

In contrast, I pass Vera on when my back is aching, when I get tired, when she's cried way too much. So much for the woman being the best for the job, right?

All I can say is that I'm really really fortunate. I've got the right man.

Hold Your Head Up

"They put me on my tummy again!"

Vera used to love laying in the prone position. Not anymore. This is how she protests: by doing the head raising thing. Up 1 second. Down to rest. Up again. Down to rest. It's tough for her, but this is how high she's been able to raise it to.

Mummy hopes that one day she'll be able to hold her head up.

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.