30 May 2009

Princess Boppy

Here I sit (or lie rather) in my throne.

This position brings Vera's feet up for her hands to explore. She can try this now as her hip muscles are stronger. There is also less pressure on her spine compared to doing the same thing while she sits in her feeding chair.

The Princess is relaxing. Do not disturb.

24 May 2009

Laughter is Infectious

video

It's so rare to hear Vera laugh, but mommy found a way today. I put her on my tummy and I laughed. The vibrations from my tummy tickled hers and voila! A joyous outburst from the little one. Then, it was mommy who couldn't stop laughing!

Waterbaby

Ahh... this is nice. I can get used to this. It's like my bath tub...just that I still can't feel the walls with my hands, legs or bum yet.

21 May 2009

Happy 15th Month

Dear Vera,

Happy 15th Month to you. In the past month, you've really come into your own.

You've started to respond to tickling and love us playing with your face.

You've discovered that legs are good for patting - we love to see your hand and leg making friends.

You can now aim a spoon accurately into your mouth, even though you don't yet have the strength to raise your hand on your own.

You love looking at faces, they could be anyone's, you still prefer them to toys.

You can roll off your floor mattress now...we know when you do, because you'll be perfectly still and quiet.

You used to pat us, now it's more like hitting! You must be getting stronger.

You've grown 2cm taller. I wish you'd put on some weight though, you haven't in the last 8 months.

You're more aware than ever. So aware we can't fix your face mask on you in your sleep.

You've gone swimming for the 3rd time now, and you're taking to the water, slowly but surely.

You're smiling more and more now, we're delighted by your cheesy smile.

We celebrate the little miracle that you are, today and every day.

Mask Madness

Four unsuccessful nights and I am close to giving up.

I knew Vera wasn't going to take the mask lying down, no pun intended. She co-operated for the first night, and that was it. From then on, the moment the air starts blowing, she does her kungfu fighting moves and I haven't even cupped the mask.

One problem is that she needs a mask that covers her face and mouth. So we've gotten her an adult nasal mask, which obviously wouldn't be a good fit (it's made for an adult-sized nose and Vera's face are so small the mask juts out her jaw). The headgear is also free size, meaning, for adults. Why? Because the company recommended by the hospital only had this one option to choose from. And because we had to purchase the mask in order to get the CPAP machine on free trial for a month, we did. Mistake.

We went on the Internet and there were so many mask options there. The problem is, we need a pediatric full face mask. I still have no luck finding one.

If she can't accept the mask, we can't get a sleep study done to find out her levels needed.

If we give up, we'd be knowingly allowing the chance of hypertension and heart issues to come into the picture.

You should hear what goes on in my head every night: "I give up! No, one more time, just be gentle. But she doesn't want it! No, it's good for her! Okay, okay one more time."

Someone give me a mask expert because I'm running out of ideas.

p.s. I'm secretly impressed by Vera's nocturnal defence instincts.

20 May 2009

A Little Help

A kind mother gave Vera this nursing pillow for her physiotherapy. She fits right well into the opening, and this is how we help her with her spine strengthening. Hopefully we can achieve the goal for 2009!

18 May 2009

Security Guard

4am again: The mask is on, faster tonight. She's panicked and pushed it off once so far.

Mask duty is from 2-8am, so I blog to pass the hours. I'm a Security Guard - I make sure the mask stays secure.

I wonder how long I'll be working this shift till Vera gets used to wearing it through the night. Then again, there's no point in wondering. Because the answer is - as long as it takes.

To all the parents who sacrifice sleep for their children: what you give is more precious than all the riches in the world.

17 May 2009

Try To Mask It

After the scuffle at the hospital with the mask, we did two things: Firstly, get a smaller, less intimidating one for Vera. Second, play pretend that this was a cool new toy.

This is the IQ 3-point headgear Nasal Mask from US company SleepNet. This free size mask is meant for adult noses, but because Vera's mouth stays open when she sleeps, she needs one big enough to cover her nose and mouth. This little contraption set us back by $250 (USD170). Ouch.

When sleeping time neared, we tried blowing the jet of air from the mask at her face. "See Vera, aircon!" "What a fun toy! Touch here, nice right?" ...and then slowly covering it over her. She tolerates it for a while, then struggles. Something new always takes time.

After she'd fallen asleep, the challenge began. I cover her with the mask as gently as I possibly can. Doesn't wake. Okay, let's figure out the straps now. By the dim light, I try different tightness to keep it securely fastened. Oops. Girl is disturbed, turns the other side, mask goes out of place. Start over. It took me 1 hour to get to the picture above. Hooray! 30 minutes later, girl turns again, mask shifts, air leaks, girl pushes mask away, remove mask, start over. Fixing it the second time was easier though. Everything gets easier with practice.

4am: Vera awakens with a panicked cry. I pull the mask off. I repeat the drill a while later.

5am: So far so good: Regular breathing, no air leaking, no sweating. Hmm...My stomach is growling.

14 May 2009

She Hates It

Vera went for a mask fitting for her CPAP today and she hated it. Who wouldn't? She probably thinks someone is suffocating her instead of helping her to breathe! We're supposed to get her "used" to this by next Monday, because that's when she's going to be admitted for her 2nd sleep study, to ascertain the levels of air pressure (it's called titration). Yup, she'll be hooked up to all those wires again, but this time with this giant mask on her face. I know this little girl. She's not going to go down without a fight on this one. Even in her sleep.

All It Takes

I laugh you smile
I laugh you smile
I laugh you smile
10 seconds make
this whole journey worthwhile.

13 May 2009

Vera Has Apnea

Having a good night's sleep isn't possible for Vera. And now we know why.

The little piglet has severe Obstructive Sleep Apnea. This is the finding coming out of the sleep study that she went through recently.

The signs were all there that there was something wrong with her breathing when she sleeps: snoring, stridor, heaving in a laboured way, irregular in out breaths - fast ones followed by a pause, profuse sweating, tossing and turning, occasional choking, and of course, eye bags and lethargy the next day.

How bad is it? Well, her oxygen saturation falls below 85% for 1/3 of her sleep; normal is 100%. At its lowest, it is 52%. Now that's low. I can imagine how it's like for her - sometimes when a pillow covers my face during sleep and I can feel myself getting drowsy on the CO2, perhaps that's what she's going through.

From now on, Vera will have to be on CPAP. She will have to wear a face mask when she sleeps. This means we'll have our first "machine" for Vera. (I know more will come later, but just not now.) The news has been a little depressing for me. Just when we'd settle into g-tube feeding, there's this. It's like I try to get a grip on the situation, and once you're more or less settled, you've got to adapt to something else again. Change seems to be the only constant. Yet another hump to handle on this bumpy Trisomy 18 journey!

06 May 2009

Seating Solution

Finally, we found a feeding chair that works for Vera. She doesn't quite like being in the car seat for long because the sides envelop her and it can get quite warm. Being a car seat, it's probably made for the air-con comfort of a car.

This seat however, The First Year's 4-stage feeder is more open at the sides, so ventilation and view is improved. It also comes with a tray table, which lets us "bring the world to Vera". Now, she can prop her arms up on it and start to learn to play with toys. With the adjustable reclining positions, we hope to tilt her forward to an upright position as her head and neck control improves. Currently, they are still pretty weak, so a too upright position will put too much strain on her curvy spine. Thank you for the recommendation, Laura!

04 May 2009

Ms Smiley

When Vera smiles, I forget all the issues that she is faced with. And smile she does without fail when you push the right buttons. She loves Daddy blowing by her cheeks, and standing her up. She smiles when she's tickled, when you clap your hands, when you pat her cheeks, when you dry her hair after a bath, when you massage her thighs. When she was born, I was prepared that the mental disability that came with T18 meant that I might have a baby that would not know how to smile. I am so, so glad that that is not the case. Because a smile from a baby can do wonders - at least for me, it makes all the babywork easier to bear!

03 May 2009

Staying Home

The price of staying home is:

1) Bearing with the heat and humidity all day. No more air con comfort of the workplace. Instead I go through up to 4 T-shirts a day plus no less than 2 showers.

2) Monotony of the routine. The thought usually flashes by my mind when I'm rinsing Vera's feeding tubes for the nth time: "I'm doing this over and over again!" Back at the office, no two days are the same because there's always a different project on.

3) Eating healthy food. Don't get me wrong, this is totally good for me and the food my mom and grandma cook is delicious. But I miss the days at the office where I'd plan to satisfy my culinary fancy for the day - mmm...Japanese Tempura Bento, Malay Nasi Padang, Thai Green Curry, a fat, oily BLT, followed by a Starbucks coffee (ooh Caramel Macchiato, Hazelnut Latte)...lunch was always the highlight of my day.

The rewards of staying home are:

1) Staying home. Waking up at an un-pre-determined hour every day is a luxury. Of course, this is usually earlier rather than later than when I was working. Vera is now my alarm clock. Sleeping in the day, is also a luxury. With block-out curtains and the air-con, afternoon naps are pretty satisfying.

2) Enjoying Vera. There's nothing like being with your baby in the day. And Vera is so much easier to care for now, which makes her much more enjoyable. Perhaps this really is the right time for me and her to bond - through therapy, through school. I am better at this while Ian is better at handling a difficult baby. Perhaps it is all planned - who's best for Vera at what stage.

3) Getting the house in order. Being the organised nut that I am, I love to IKEA my home. I'm a huge believer in simplifying life by clearing the clutter. I can already hear Ian saying "don't throw anything away without asking me." Okay.

I guess everything has its pros and cons.

Like Ian says, "It's all part of the package."

02 May 2009

Swimsuit Shopping


Vera went swimming for the first time last Friday. Her school has a heated pool. To get her ready, we went shopping for her first swimsuit. Guess which one Mommy bought?