30 September 2009

How To Make Vera Smile

Easy. Just move her arms and sing a song.

Here, Ian sings Vera a traditional Chinese ditty complete with hand action which simply tickles her funny bone. Seeing how effective it is, I've started doing it as well.

Daddy says it's copyright infringement.



P.S. Thank you all for the pregnancy well-wishes and the overwhelming support along our journey with Vera thus far. We hope to share more good news in the coming weeks.

27 September 2009

News To Share

I've been holding this off for some time now - 3 months actually, but am now more comfortable to share the news.

Vera is going to get a little brother or sister.

I am now 13 weeks pregnant, just into my 2nd trimester.

To be honest, we hadn't planned for another baby anytime soon. But as I have come to realise, things to do with life are often times not up to us mere humans to control or decide upon.

While many are over the moon when they learn that they are pregnant, I am all too aware of what could possibly go wrong. Like it or not, having a previous 'scary' pregnancy diagnosis changes things quite a bit. The mind functions on past experience, and the experience leading up to Vera's birth had been fraught with anxiety and uncertainty.

Unknown to many of you as well, is the 8-week miscarriage that I had beginning of this year. Often, fetuses spontaneously abort because of abnormalities that render it incompatible with life.

So it is with tempered joy that I approach this pregnancy. What mother wouldn't want to be overjoyed? I try to be, but it is hard. Instead, I have adopted a quiet optimism.

This baby has already made it past the first trimester where miscarriages usually happen. It's past 12 weeks. It wants to live. It's a good sign. I tell myself.

The extreme fatigue, grumpiness, nausea, and hunger pangs of the 1st three months have also subsided. So these days, I'm in better spirits and less tired. Plus, my helper has come at the right time to help me with Vera's care. Things are looking up.

Given the history, I will be undergoing an amniocentesis sometime next month. We would know if there are any chromosomal abnormalities.

We would also know if Vera will get a baby brother or sister.

25 September 2009

Stoma Care

Thank goodness for home care nurses.

Vera's stoma area had been slightly inflamed for nearly a month. It itches and she keeps scratching at it. We tried everything. Changing gauze regularly to keep the area dry, applying the supposedly 'magic powder' Stomahesive...all to no avail.

It should have occurred to me to call her home care nurse Sister Rachel earlier. She offered some cream for the area - Baneocin - and I must say, THIS is the magic cream. In one day, the redness has subsided to a dull pink.

Thank you, Sister Rachel!

P.S. Vera's GI doc was on Medical Leave so we saw a stand-in. He commented that he was very impressed with my medical knowledge - of stoma care, usage of medical terms. Hmmm...do doctors not expect parents to be actively involved in their children's care? Anyway, I replied matter-of-factly: "My daughter has Trisomy 18. I HAVE to know everything."

Spidergirl


I can't crawl but I sure like to creep.

Vera's legs have strengthened, but her arms are still weak. We do this anyway, as she seems to enjoy the movement of extending her legs.

She's been trying to push herself up, arching her spine - and getting frustrated, and exhausted by the effort. It's a good sign though that she wants to try. You'll get there, little girl. Just keep trying.

24 September 2009

Hydrotherapy at School

Vera has become increasingly comfortable in the water since she was introduced to the pool a few months ago.

Yesterday she had a solo session with the school physiotherapist. For nearly 45 minutes, she was totally relaxed and went through all the exercises without a struggle.

Exercises like trunk rotation, crossleg hold, forward/backward recovery, irritated seaweeding (yes, interesting name) were geared towards improving her stability and mobility. Can't wait to practise the new moves on her in the water!



Happy 19th Month


Vera is now 19 months old. I didn't celebrate her 18th month, so it was time to get them balloons blown up this time. Plus a special one for Brianna from Vera. Mini cake courtesy of Vera's grandma.

19 September 2009

Buttonmare

Last night, I dreamt that Vera's button came out.

We've been having a couple of days of inflammation around her button site, plus leaking that has started again. Both have been bugging me during the daytime.

So I'm not surprised it manifested in my sleep.

I was holding on to the top of the button and it simply came off. I stared into the stoma hole. And saw the lower mushroom-like part falling in two pieces into a dark bottomless pit.

I called the home care nurse. She told me she had a meeting later and I had to come immediately before it. I called Ian, the phone took ages to dial. I tried and tried and tried. Her next feed is coming up and we need to get it done like right now! I called my folks and they magically appeared from another room. What's the matter? they said. I broke down. Vera's button came off and we are still here! My knees buckled and I sat on the floor in tears.

I woke myself up saying that aloud. It was 9am. (Bad idea, sleeping in late.)

I wonder if other parents have such equipment-malfunction mares.

09 September 2009

Hold My Hand

I didn't know what to write but I just felt that this is such a precious photo, so I'm posting it. There's something about the contrast between a new life and an old one that's simply compelling.

07 September 2009

Hands & Knees

Finally, Vera's reached pole position for crawling.

Not that she's doing any of it yet, but at least she lets us put her in this position...happily. Her hands have gained strength gradually but are still not strong enough to support her weight unassisted; they buckle if I take my hands away. But I'm sure that will improve with time.

Meanwhile, she has also shown signs of wanting to walk, can you believe it? When we hold her under the arms in a standing position, she will lift one foot. When we shift her weight and place it down, she'll lift the other. I am so amazed by this little girl.

Slowly surprise us, Vera. The satisfaction is sweeter for the wait.

04 September 2009

Her Heart is OK

Vera has many doctor's appointments.

But the one that I approach with anticipation is always the one with her cardiologist. After all, the heart is her engine room.

Which is why I was relieved to hear from the very experienced pediatric cardiologist Dr W at KKH that Vera's heart is okay.

There were some abnormalities detected though - the 'door' letting blood flow from the heart to the rest of the body had 2 'flaps' instead of the normal 3; plus, there was a tiny hole at the top of her heart (gasp) - BUT (thank goodness for buts) they were not causing any problems at this time. Dr W, however did add that "whether it would later on, we don't know". Well, with Trisomy 18, you get used to living with deviations and disclaimers.

I'll take it.

During the echocardiogram, I stared at the monitor in awe at Vera's beating heart. Drumstick-like flaps danced in perfect synchrony with one another, like pistons in a car. No one there had any idea how precious each beat was to me.

Beat on, little heart!

Brianna

Many miles away
Tri18 takes Brianna today
Without warning
Without hesitation
Without time enough for goodbyes

But nothing can take away
The memory of your beautiful eyes
Your porcelain skin
Your smile a burst of sunshine

Brianna you'll live on forever
Because you now live in our hearts.