1st Sleep Study

Vera had her first sleep study last night. It was actually called off because we didn't go for a prior doctor's visit. But thankfully, we got it back on. After she fell asleep at about 8pm, it took the dexterious technologist about 1 and a half hours to hook her up with all the sensors - 8 on her head, some on her body and legs. The strip under her nose measures her exhalation from nose and mouth. Doesn't she look like something from a sci-fi movie? The little girl slept through it all, and when she woke the next morning at 8am, they were already all removed. Again, like in the movies, you're not supposed to remember what they did to you! hahaha...

On a more serious note, her O2 saturation dropped to the 60s for quite a stretch in the night. In 2 weeks' time, we will be able to know if she has Obstructive Sleep Apnea, Central Sleep Apnea, or a combination of both. The sleep doctor will also recommend if she needs any Oxygen help via a mask when she sleeps.

They sell Oxygen shots at some clubs in Singapore. Maybe I'll get the chance to try at home!

Hang In There, Annabel

We can't feel the pain you're going through
but we're doing all we can to ease it
Hang in there, Annabel.

We don't know how it feels to have our heart in overdrive
but we're doing all we can to put the brakes on
Hang in there, Annabel.

We can't tell you when there'll be room at the inn
but we're doing all we can to get one
Hang in there, Annabel.

We don't know how it feels to be you
but we're doing all we can to be here for you
Hang in there, Annabel.

Happy 14th Month

Dear Vera,

You are 14 months old. Today, you are happier, stronger, more responsive, more inquisitive and more aware - than ever before. You now have Mommy as your personal assistant by day - no, actually your grandma, greatgrandma and grandaunt as well. Your beloved daddy is all yours at night.

With the turn of the weather, you are feeling better and have been working hard on your movement. You turn left-right-left all day long, trying, still unsuccessfully, to get up on your tummy. You will get there. You are captivated by your own hands - you constantly put them in front of your face - turning them this-way-and-that to check out how they move. You are 'talking' more than ever. We love listening to you mutter to yourself.

Best of all, you have learnt to 'sayang' (Malay for 'be affectionate with') whoever is carrying you. Your previously clenched fists now open to stroke our arms and pat our shoulders! Not forgetting, the way you constantly stare at our besotted faces - intrigued by our moving mouths and the sounds they make. You cannot say a word, but your expressions and gestures speak volumes. You cannot crawl to me, but you've climbed all over my heart.

You continue to defy your death-sentence diagnosis. You continue to thrive, though you are not supposed to. You continue to show that you are far from 'incompatible with life'. You are more than we ever imagined you'd be. You are a miracle to me, every ordinary day.

Love,
Mommy

Button Care Part 2

I've been preparing myself for a future of cleaning reddish, oft-bleeding stoma but now there is hope. A friend of mine showed me her little girl's button site. Check this out: NO GRANULATION! The abdominal skin has completely closed around the button, such that no new granulation tissue is able to form out of the area. Now, if your child is g-tube fed, you will as impressed as I am about this.

The trick is to make sure the layer of gauze between the button and the skin is thick as shown. This fills up the space and keeps the button from moving too much when baby moves. This can cause it to rub against the raw area and thus doesn't give the skin a chance to heal and close in around the button. Lots of antacid powder around the site also helps to neutralize any milk leakage.

I'm trying it out on Vera right now. Let's see if there will be the same magical effect!

Patch Work

"What's this? Where did everybody go? Why is it so dark all of a sudden?"

We've starting patching Vera's good eye to make her bad eye work a little harder. So far, she's able to tolerate it for about half an hour, provided there's lots of entertainment. I don't know how much good it'll do though. There seems to be little reaction or movement from the bad eye. Only time will tell I guess.

Also, I was mistaken, Vera IS cross-eyed. Irises usually move either inwards or outwards when eyesight is poor.

The other issue is that Vera is far-sighted. Can you believe it? I thought that's something I would get when I get older. They thought she had Glaucoma at birth as well, but thankfully that's turned out to be untrue (you have to watch what medical professional tell you about what they "suspect" before tests are done...or else it can freak you out!)

As for her photosensitivity, she seems to not be as affected by bright lights as before. Maybe everything just takes time to improve.

So as of now at 13 months, Vera is still on saline drops that will help clear the haze (don't know if this is really effective but we just do it anyway) and anti-glaucoma drops called Timabak (prevents pressure from building up).

Far-sightedness, glaucoma prevention...sounds like a l'il old lady, doesn't she?

Having A Ball

Put her on the ground and she struggles to lift her head. Put her on a ball and she does it with ease. Vera has a great session with her physio teacher in school yesterday. Mommy and grandma learnt a lot too:
1) We must pick Vera up by turning her to her right side first. This will prevent her head from constantly arching backwards;
2) Let Vera sit on one lap with feet touching the ground, to get her used to the idea of feet on the floor;
3) Let Vera practise head-raising on a firm gym mat, instead of the bed which is too soft;
4) How to help her get from lying down to sitting position;

5) Pelvic raise - Lifting her hips off the ground
6) How to use the exercise ball - rolling her back and forth slowly, facing downwards and upwards;
7) Stretching - not to force the stretch when she resists, but wait a while, then continue when she relaxes

I love it that Vera has such a gentle, dedicated and effective physiotherapist at school. This is far from the crying sessions at the hospital rehab. They'd force the stretch and basically made Vera very unhappy.

At Rainbow Centre, Vera will get help from an Occupational Therapist (improve her seating) and Speech Therapist (improve her feeding) as well. I'm so thankful we managed to get her into the programme without too much of a wait. It's a great environment for her to be in, to experience new sights, new sounds and new people. And now I can be there with her!

Chin Up Part 2

Goal for 2009: Getting Vera's neck muscles to strengthen enough so she can hold her head up like this unassisted.

Since I've been home, tummy time has become a priority. Vera used to be able to hold this position for almost 45 seconds. Now, with the many bouts of illness and surgery, she's set back quite a bit and can only do this for about 5 seconds before her hands give way and her head droops down to the bed.

If her neck muscles do not strengthen, she'll not be able to support her head. Its weight will bear down on her spine and worsen her scoliosis. A misaligned spine can lead to lots of other problems, like interfere with breathing.

Here we help Vera by putting her on a bed that's already inclined about 20 degrees. It makes the herculean task a little easier for her. She's so tired out by the exercise she slept at 5pm!

Thinking of Lily

These few days I have been thinking of a soon-to-be born baby named Lily. Like Vera, she has Trisomy 18. Reading her mother's blog, memories of my own pregnancy, similarly fraught with 'bad news' towards the end, came flooding back to me.

I am thankful that I was spared from knowing about Vera's 'death sentence'. Vera 'hid' her Trisomy 18 abnormalities well - the ultrasounds only picked up her enlarged cisterna magna, and my single-artery umbilical cord (normal ones have two) in the 7th month. It was too late for an amniocentesis.

The medical profession is founded on the basis of 'knowing'. Let's do this, this and that, so we will know. And if we know, we can do something about it.

Well, in Vera's case, am I glad we DID NOT KNOW. I glad all the scans failed to pick up Trisomy 18. Because at least I was able to give her 6 months of a happy pregnancy. Once I knew there were problems (ie severe mental and physical disabilities) in the 7th month, it was a daily struggle to keep myself from falling apart. And I'm a believer that babies can feel your thoughts and emotions.

The truth is, whether you know, or do not know, about anything really, it is already written. Ignorance sometimes, is bliss.

Time Out

When you're a parent of a child that falls sick often, going out becomes a luxury. Vera's chest congestion took a turn for the better 2 days ago... and mommy and daddy were out of the house in double quick time. There's a huge IKEA hypermart just a 10-minute drive from our home. It is the perfect walkout for families wanting some cool respite from the heat and claustrophobia of their little 4-room flats. And of course, when you get tired of carrying your little ones, there's lots of places to leave them!

A Lesson In Kindness

Truth be told, I've never really experience true kindness, or fully understood it, until Vera came along. Since then, our lives have been filled with so much of it that it has made me fully aware of it.

Sisters, aunties, grandmas offer unconditional help. Mothers offer liquid love, in the form of breastmilk. Others offer much-needed advice, or equipment. Bosses find ways to accommodate us. This outpouring of kindness is something that I am not used to. I was always brought up to be independent, to rely on myself, to minimise reliance on others. Now I've realized, that may not be what life is about.

Vera comes from the word 'verite', with means 'real'. Through her, I've learnt about real, unconditional kindness - the most amazing thing in the world.

Making Her Smile

Is Vera better? Nope. Mr Mucus continues to stuff her chest up; we continue suctioning with a little manual bulb through the night. A machine may have to become a standard feature at home now. But we won't dwell on that for now.

The little girl still wants to have fun despite her congestion - that tells us that she is managing it somewhat. Here's how we try to cheer Vera up, by rubbing the sides of her head. This is guaranteed to make her smile - and us as well.

Diffusing A Bomb

This is the bomb. And I am diffusing it. If I am not absolutely careful, it will go off. The collateral damage: non-stop crying in the wee hours of the morning.

You see, Vera is having a bad bout of congestion. It's so bad she can't breathe properly and keeps getting rudely awakened in the night. The sleep deprivation drives her crazy (and us as well). She cried, for the first time, for 5 hours non-stop last night from 3-7am.

Tonight, mommy is on a mission to prevent a repeat of last night. The task:

1) Manually suction Vera every 5 minutes or when necessary. The challenge: Suctioning may wake her up; Not suctioning leads to blockage and she will wake up.

2) Wipe Vera's sweat. The challenge: Touching her in any way may wake her up. Not wiping makes her uncomfortable and she may wake up.

3) Feed Vera before she gets hungry and wakes up. The challenge: If the timing is wrong and she's not in deep sleep, feeding may wake her up. Feeding also tends to cause increased secretions, which will increase the need to suction.

The bomb diffuser sneaks up on the bomb with rubbery bulb in hand. The aim has to be just right. Straight into the nostril and out with green snot in tow in no more than a split second. The light is dim; my eyes strain as I hone in on the target. At which point Vera starts to turn left-right-left, trying to clear her blocked nose. Follow the moving target. Aim...bingo.

It's 3am and I've been on suction duty for 4 hours. Another 4 more hours to go. If you ask me, this beats 4 hours of crying anytime.

Feeding Toy

Vera loves her spoon. It's her favourite teething toy, next to the ark probe, which continues to give her tonnes of relief from itchy gums. She's learnt to grip the spoon between her gums and by biting and letting go, create some visual self-entertainment.

The little girl is starting to learn about cause-and-effect now. If I move my jaw, the thing-I-don't-yet-know-called-a-spoon moves up and down. If I move my hand to and fro, it brings water into my mouth.

I hold her hand lightly because her grip is weak. But other than that, the movement is her own. One of my goals of being at home is to keep up her feeding therapy. Nothing would make me happier than having her overcome her dysphagia and be able to eat all the wonderful things nature has to offer. Well, at least she loves sky juice. It's a good start.

Button Care Part 1

The feeding is easy, the maintenance a chore. Now, here's the flip side of g-tube feeding. See the red growth (it's called granulation) around the button?

That has to be kept dry as much as possible. Problem is, the button leaks. (This is the downside of the BARD button). Milk dribbles out after a feed and the gauze has to be changed after every feed. Milk and wetness can cause bacteria to grow around the area. It has to be thoroughly cleaned and antacid powder (grounded anti-gas pills) dabbed around it. According to her surgeon, this reddish growth is normal and actually pretty minimal. It's the body's way of reacting to a foreign body. (Sorry body, it's not gonna go away, so you might as well get used to it.) Hopefully it doesn't grow any bigger. If it grows out of proportion, they actually have to 'burn' it away with silver nitrate. And we don't want another hospital visit do we, Vera?

So, gauze days are here to stay. Cut gauze, change gauze, cut more gauze, change gauze again...you get the picture. This is where I take my hat off to nurses.

G-tube Feeding 101

How do you feed Vera? People ask me.

'I pour milk into her tummy' I reply. You should see their expression.

Well, here's how it actually works. Quite ingenious really.

This is where the feeding 'hole' is on Vera's tummy:


Made of silicone, it's soft and rubbery and has a simple open/close flap.

When it's time to feed, we open the flap, insert a tubing to vent her (meaning let the air out of her tummy so milk can go in). Then we attach this other tubing (after priming it with milk) into the hole.

Milk is poured into a syringe and voila! It flows into Vera's tummy due to gravity.

We take about 20 minutes to feed 120ml. This is half the time it took on the ng tube. Mommy is very very happy with the improved timing! I remember those long feed days... a real test of patience. This new way of feeding seems to make for a less cranky Vera as well. Before she was aware of something going on near her face. Now she's unaware that we're feeding and continues busy sucking her fingers.

When we're done, this simple clamp does the job to stop the milk flow, so we can remove the tube.

Got it? Now, any volunteers to come help me feed Vera?