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.