29 November 2010

Interacting With Toys

Vera loves interacting with people. She'll tap your face when you're near, and stare into your eyes with full concentration.

She's less interested in toys.

So I was pleasantly surprised to see her initiate tapping on this playgym. She even seemed to enjoy it.

26 November 2010

Pre-natal Ultrasounds

I read a blog link that Lily's mom posted to share and it broke my heart.

It is about a Trisomy 18 baby named Jedidiah who has recently passed away.

You can read the struggles of his parents at http://trisomyjourney.blogspot.com/2010/11/medical-mindset-you-are-your-childs.html

It always brings me to think back on the double edge sword of pre-natal ultrasounds, the cornerstone of Obstetrics and Gynaecology.

Is "knowing" always good? Does "knowing" help parents who have a poor prenatal diagnosis, or work against them? Does "knowing" help doctors prepare to save the baby or prepare not to?

In the old days, people just popped their babies out on the day itself, not even knowing the sex beforehand. Babies had the "protection" of anonymity till they arrived in the flesh. No one, could make any comment or judgement on them till they made their presence felt.

I'm thinking, how did we get to this day and age of always "wanting to know the future"?

If ultrasounds had showed up Vera's Trisomy 18 early in the pregnancy...she would not be here today. That is a fact. We would most likely have been strongly encouraged to abort her. And we most likely would have.

We've been conditioned by modern medicine to think the world of pre-natal ultrasounds.

Sometimes even when we think we know, we don't. Medicine doesn't always have all the answers.

Some things are good just knowing in our hearts.

25 November 2010

Bench Press

Vera has improved on her sitting as well. We continue to let her practise at home with this height adjustable bench. Of course she does this for less than 3 minutes, but it's already an achievement for her.

Someone else has found use for the bench as well...

"Ah ha!...now I can climb onto the sofa!"

22 November 2010

To The Mall

I suddenly had the drive to take both kids out to the mall.

I've been unwell for so long and with surgery and weaning there just wasn't much "outing time".

Nearly 8 months old... after his 1st hair-cut

3 years old in 3 months' time!

We had lunch at KFC. It was Vera's first time visiting The Colonel, and she marked the occasion with a "big job" there and then. So did Daen.

We had poop smeared all over - their clothes, our clothes, carrier, pram.

It was quite an experience.

But it's a good thing we got out - Vera and Daen need the stimulation. It just happened that their feedings coincided and we went on the spur of the moment.

Thank goodness we did the "Finger Lickin' Good" BEFORE we had to clear the poop!

21 November 2010

School's Out Stander's In

It's the holidays but Vera's got homework.

Her head and trunk control has improved enough for her to be put in the stander, on loan from school.

Yesterday, she toured around the house for the first time. Today she checked out the corridor outside our apartment.

You can see the cogs in her brain working. She knits her brow in concentration and turns left and right to survey her surroundings. She makes an extra effort to hold her head forward.

I am so proud of her!

20 November 2010

Silence is Golden

It's been 14 days since Vera's discharge from her adenoids and tonsils removal surgery.

After the 9th day, the secretions that seemed endless suddenly stopped.

Since then, we've observed a clear difference (literally) to her breathing.

It's quiet. Okay, some stuffy sounds on and off, but generally quiet.

We've lived with Vera's noisy breathing for so long, the silence is so refreshing.

It is a far cry from the Vera just prior to the surgery - writhing, fussing, arching, tiring easily - because she just couldn't breathe with the adenoids blocking nearly 90% of her airway.

Oh how grateful I am to the doctor who did this for her! You've given her a new lease of life.

How long will the silence last? We don't know.

Will her reflux (supposedly severe) cause the adenoids to swell back? Don't know.

But we're not wasting any time. We're getting our newly energised pumpkin onto the stander pronto!

16 November 2010

Goodbye Bard, Hello Mickey

This is Vera's new button.

After nearly 2 years of dealing with the Bard and its various issues, we finally made the switch to a Mickey.

Here's a low-down of the pros and cons.

What we like about the Bard:

1) It is flat and flushed with the tummy. Good for tummy time.

What we don't like about the Bard:

1) There is a one-way valve inside that loosens with wear and tear. It can also be damaged by over-venting over time. Alas, Vera needs frequent venting because the bi-pap blows air into her tummy.

2) Particles (powdery suspension medicines, milk that's not dissolved properly, fibrous fluids, can clog up the holes if water flushing is not done thoroughly.

I believe this is what happened this time round.

Medications that Vera was on post-op clogged up the button and forced the valve shut. It because almost impossible to syringe more medication through. The more force we used, the more damage it was causing to the valve.

After I did some trouble-shooting with Coke, the blockage cleared, and we were able to feed medication without resistance. But by then the valve was probably gone.

Once the feeding tip was removed, the button would leak.

I had hoped the problem would resolve by itself back home. Afterall, it was a relatively new button, just 3 months old.

But today, fluid started to pour out when the flap was opened. From experience, I had a feeling it was a goner. So to hospital we went.

3) Each time the Bard is replaced, we have to deal with over-granulation for at least 2 weeks. Burning with silver nitrate, sloughing it off, watching it bleed...yucks. We've done it for 3 rounds. Today I just thought: No more.

What we like about the Mickey:

1) No more valve problems - there isn't one!

2) No more clogging - I don't have to freak out over medications causing blockage (my sanity back!)

3) No pain for Vera during replacement.

What we don't like about the Mickey:

1) It protrudes more than the Bard. We'll have to wait and see if this will interfere with Vera's tummy rolls, which she does quite a bit when left on her own.

2) The water-filled balloon can burst or deflate. When that happens, the button will pop out. Milk will be EVERYWHERE. Bed, car seat, wherever. However, I will be able to learn how to replace it on my own. Or we can tape it down bring her to the hospital to get it changed.

3) The feeding tube is short. Vera's hand can easily swipe the syringe and causing spillage.

Well, I guess it was a case of "give me something, anything!" because the stress of dealing with Bard problems was just getting too much for me.

It's Vera's lifeline - she takes nothing by mouth - so I do freak out a bit when there are problems with it.

I'm under no illusions that there won't be problems with the Mickey. But fingers crossed we have a better experience with it.

14 November 2010

Vera's Teacher Visits

Vera gets a visit from her school teacher, Siti, during her recovery post-op.

She is so lucky to be in Rainbow Centre, a special school that where the teachers are passionate and committed to helping special children like her.

When I first brought Vera to school when she was 12 months old, I found it was just as therapeutic for us as for her.

Bringing Vera to school made me feel that she was ACCEPTED, more than that, that she was LOVED wholeheartedly.

Here, I felt more 'normal', that there were other families in the same shoes, struggling like I was, coping like I was. And that there were people just as keen to help Vera as I was. Suddenly, her problems seemed shared. And anything shared is always good. Joy especially.

Which is why I still bring her to school instead of let her go by schoolbus with her caregiver Beth. And because I can't leave Daen at home, he tags along too and soaks in all the positivity.

A special school indeed don't you think?

12 November 2010

The Gift of Trisomy 18

Trisomy 18 takes away so much from parents.

But it has given me one thing, and it is this:

Each night, I look at my girl and love her as if each day is her last. It is a wide, wonderful, full-force gush of lurrrve. (It is something I do not experience with Daen.)

C'mon, she's doing well, don't have to be so drama, some say.

Well, I'm afraid that's what life with Trisomy 18 is like. Intense highs and lows. Emotions magnified to their extremities.

Suctioning 201

Suctioning 101 described our first forays into the icky business.

Suctioning 201 details how we've modified our technique to the "challenge" from Vera.

First step: Vera is bundled up like a mummy.

Vera looks at me with poisonous eyes. I don't like getting this,
she looks like she hates me! But there's no choice.
I wear a mask to hide my face.
Maybe I need funny glasses as well...

She takes one look at the apparatus and sticks her tongue out in defence. Clever girl.

Vera grits her teeth. Mummy tries using a spoon like a spanner.
It's a split second manoeuver, waiting for her to open just wide enough
for me to slip the spoon through.

Then comes the tricky part: Curving the catheter down her throat and down deep,
as GENTLY as I can, by waiting for moments when she relaxes her trach.

Finally, letting her rest with O2 in between tries.
She's tired, but all ready to put up a fight in the next round.

08 November 2010

Life Lessons from Trisomy 18

Without weakness,
how do we find strength?

Without darkness
how do we see the light?

Without sorrow
how do we savour joy?

Without silence,
how do we learn to listen?

Without fear,
how do we learn to be brave?

Without death,
how do we treasure life?

Without loss,
how would we know what we have gained?

07 November 2010

Back (Home) To Suctioning

Yes Vera is back home.

And we're back to lots of suctioning. Apparently it is the body's reaction to the wound sites. The copious amounts of secretions are expected to last at least 14 days. We're at Day 6 (only!)

You've heard all about how we and Vera dislike suctioning so I won't elaborate further.

Just to say that I'm glad I've reached a proficiency level to be able to do it as "productively" as possible.

There is however, a satisfaction that comes from seeing Vera struggle. She used to cry. She doesn't anymore. Instead, like a trapped crab, she uses all her strength to fend us off, clenches her teeth like a crocodile, and stares at Me The Catheter with poisonous eyes.

This is my baby at her feisty best.

"This one ain't going down without a fight," I smile to myself.

At this point, it is premature to say that her breathing has improved. We'll have to wait till the secretions clear.

The Purpose of Life

When I was in high school during a Moral Education lesson, I remember the teacher asking us:

"What is the purpose of our lives?"

In Chinese: "Wo men huo ze gan she mo?"

I remember it distinctly because no one had an answer. Neither did the teacher provide one.

'Isn't the teacher supposed to give us an answer when no one knows it?' I wondered then.

The question stuck in my head. I mulled over it along the way.

Was it to earn lots of money?
Was it to win lots of awards?
Was it to see the world?
Was it simply to be happy?

20 years later, the answer reveals itself.

The purpose of my life is to help two little people who need me.

To be Vera's care manager. To be her voice. To show naysayers the day-to-day reality of this happy (and unhappy), responsive child behind the Trisomy.

To teach Daen how to eat, poo, talk and grow into a good person.

To perhaps also help others who are on the same path we've trodden...mothers longing for a VBAC, parents of a T18 child.

And what's the purpose of Vera's life?

For a start, she's shown me the answer to the purpose of mine.

"I long to accomplish a great and noble task,
but it is my chief duty to accomplish small tasks
as if they were great and noble."
Helen Keller

05 November 2010

"Umareru" (To Be Born)

"Umareru" © 2010 "UMARERU" PARTNERS LLP

Director: Tomo Goda
Running time: 104 minutes
Language: Japanese
Opens Nov. 6, 2010

Finally a documentary that features among others a couple with a Trisomy 18 baby. It is showing in theatres in Japan starting tomorrow. It's small steps like these that will shape public perception/awareness of babies and families with the condition.

Wish I could watch it...

04 November 2010

Home Soon

Vera was weaned off Morphine last night (and her neck IV!) and seems to be managing the pain pretty well with Ibuprofen and Paracetamol.

She was in a good mood after 2 knock-out naps in the morning. Clapping her hands, tapping my face, even doing her secret training a couple of times. She managed to cough out her phlegm. Her sats were around 95% most of the time, and was thus spared from her "much-hated" suctioning.

No signs of blood from her adenoids and tonsil sites, a sign that they are healing well. If her bowel movement is good tomorrow, we will be heading home!

03 November 2010

Out of PICU

Just to say that Vera is out of intensive care this evening, 2 days after the operation.

On hindsight, it was a blessing in disguise only the adenoids surgery was done, as doing the fundo as well might have put her in more discomfort than she can handle - (imagine pain in your nose and throat and tummy). The fundo is KIV for now.

Yesterday she experienced quite a long period of desaturation even on the mask and with oxygen support. This was due to copious amounts of secretions.

Today her sats are better, which is why they have transferred her out.

It remains to be seen how much of a difference the surgery will make to her breathing.

Fingers crossed.

Thanks all for your concern and prayers sent her way.

01 November 2010

Out of OT

Just to say that Vera is out of the OT and has been transferred to the PICU.

The team experienced some difficulty in intubating her. This is not surprising, as the team at KK Hospital reported the same during her PEG/fundoplication op at 13 months.

The surgeon decided not to go ahead with the re-fundoplication, and to proceed with just the adenoid and tonsils removal.

We had hoped to have both done so as to save her yet another round of needle-poking. Well, perhaps it's a blessing in disguise, as we were not too keen to have open surgery on her tummy for the re-fundo.

(With her tummy untouched, it means she can get onto the stander sooner yey!)

The team will reassess her reflux again down the road and then decide then on whether a fundo is really required. Perhaps with more tests done.

I am so looking forward to her breathing improving once she recovers.