First Step To Freedom

After months of throwing up due to the tube irritating her throat, it's now OUT OF HER MOUTH. Finally, she can suck her hands and fingers all she wants. Finally, no more constant tape changing each time saliva soaks it up.

We have her Speech Therapist Vasu to thank. He took one look at her and urged us to get her onto NG (nasal gastrostomy) tube without delay. The tube had already caused a ridge to form in her upper palate, like an inverted canyon! That would cause further problems further down the line, like stunt teeth growth.

It was traumatic to watch though. Vera cried her eyes out. Of course, who likes something thrusted up their noses and without warning? With time, she should get more used to it. We hope.

For those who know about my initial aversion to tube insertion, well, here it goes again. Another mental challenge to overcome!

Go Nasal

"Get her onto a nasal feeding tube," was the first thing Vera's Speech Therapist said to us.

Suddenly, it dawned on us. We'd become so used to the oral tube after months that we'd forgotten why it was there in the first place: only because her nostrils were too small at birth. Certainly they must be big enough by now for the feeding tube.

Imagine what that would mean: No more Vera gagging on the tube, no more vomiting, no more cleaning, washing clothes and sheets every day. Just Vera sucking away at her hands with relish.

Can't wait to get her 'nose job' done.

Normal vs Special

The irony of these two words have always intrigued me.

For kids that are born so perfect, so wonderfully made, they say they are just 'Normal'. How can that be? They are way way beyond special, because so much has to go right for them to be born that way.

And for kids whom are mentally or physically handicapped, people are embarrassed to call them as such. So they use words like 'Special' as an euphemism. But the truth is, these kids ARE special, in every sense of the word. Firstly, something is special when it is rare - and such kids are rare. Secondly, these kids are special because they fight harder than any other to do 'normal' things.

So there. To all the parents with 'Normal' kids. Please treat them extra extra special.

She’s A Great Grandma

…literally. She’s great at calming Vera and even putting her to sleep. After all, she’s raised 5 children herself, and has lots of experience with grandkids. When she speaks, Vera pays rapt attention. I believe it’s because this grand 88-year-old dame stayed with me for the last two months of my pregnancy, so Vera heard her voice everyday before she was even born. These things cannot be scientifically proven. You just know them with your heart.

Walk In The Park Pt 3

Vera has park-crazy parents. This is her third park – Changi Beach Park. A quaint, laid-back coastal beach where old bumboats dock. This used to be mommy and daddy’s frequent hangout. Now, it’s with baby in tow!

The Sun Shines

…when Vera smiles. She made our day with a whole lot of it yesterday. There’s just something about a toothless grin that really melts my heart. Every smile says ‘I’m happy to be here with you. I like that thing you do, it tickles me.” No wonder people have more kids. They just can’t get enough of these utterly magical moments.

Enough Sleep

When Vera gets enough sleep, so do we.

That’s what we’ve learnt after months of trial and error. We thought that keeping her from sleeping in the day would tire her out and make her sleep longer in the night. Wrong. She gets more cranky and cries all the way to bedtime.

Now, we try to make sure she gets at least 2-3 naps in the day. It seems that letting her sleep enough in the day, makes falling asleep at night less of a trying affair. She also cries less and smiles more when she’s well rested.

Best of all, she’s slept for 8 straight hours through the night for the last 4 nights! Our first all-night rest since birth. It’s cause for celebration.

The problem is: I still wake up in the middle of the night, like clockwork!

Favourite Pasttime

Finally, finger sucking has begun. From being able to aiming her thumb into her mouth, Vera has progressed to sucking on her fingers whenever she's lying on her side. It's a good sign: it shows that she's exploring her own hands, and able to pacify herself with them.

However, the downside is that the movement shifts the feeding tube, it irritates her throat, and causes her to vomit her milk out. It's painful for me to watch - the little girl is just doing what babies do, and has to put up with the consequences.

Boy, do I hate this feeding tube.

Hold Your Head Up Part II

It's clear she still doesn't like it. We were taught to put a rolled towel underneath, and push her elbows in to help her practice pushing herself up. Clearly, her hands don't have the muscle tone for this yet. She can raise her head once or twice, and then tires. But it's a start. Hopefully, with time, and practice, this gets easier for her.

Vera Has Torticollis

According to the Physical Therapist (PT), Vera has Congenital Muscular Torticollis. This refers to a tightness in one side of her neck muscles. It causes her head to tilt to one side. It's something that can be corrected with lots of daily stretching of the neck muscles, on the tight side. This condition will take up to a year to resolve. If no therapy is done, surgery may be needed to release the pressure on the muscles.

Vera's thigh muscles are also very tight. We were given a set of stretching exercises for her.

She enjoyed the music therapy. It's funny how she looks like she's learning to play the piano!

The Way I See It

Never thought I'd say this, but yes. We're in a good place now with Vera. She's responding more to us than ever. Not anywhere near normal babies, but she's showing us new abilities, here and there, like sucking her hands, sucking on my finger, responding at times with big smiles.

Everything she does I see as a bonus. Because they really are. And it's a great feeling you know? Not expecting anything from your child. Other people stress over whether their kids do well in pre-school, college, university, in their career, in their love life...all through their lifetime. We're not on that yellow brick road.

For me, it's entirely different. It's 'Hey Vera. Let's see what you can do. What you can't is ok, it's already much more than we hope for.'

For others, if their child passes on prematurely, it is a life cut short. For Vera, she's already outlived her expectancy. When I realised this reality, it really put things into perspective. It gives me a great feeling of release, a freeing of the heart and mind from fear of the future.

What about Quality of Life? Some ask. She'll have so many medical problems. Well, don't we all come to that stage at some point in our lives? When we're old, tired, weary and unwell. It's the same life process isn't it? Delayed for us so we don't have to deal with it just yet; Accelerated for babies like Vera.

One mother once told me, 'This journey is an intense one'. It sure is. Because you can ever feel, joy, pain, peace, frustration...all come together in every moment.

I hope I survive the ride.

The Haze is Clearing

More about Vera's eyes. Over the last weekend, it seems that the hazy film over her left better eye has cleared much more than before. We'd stopped monitoring (and got lazy with putting the eye drops) because we don't really see any change day to day. Then suddenly one day, I noticed that her left eye looked darker. It also coincided with her starting to follow our faces. And strangely, over the last few days, she's been a lot calmer for longer. It's really a miracle.

For all those who are rooting for this little girl, thank you so much for your thoughts and prayers. One thing is clear: Vera wants to be here!

She Follows

A repeat of the photo of the month...because finally, Vera can follow our faces with her eyes!

This is a milestone for her. At last, we know she can at least focus. Although we don't yet know what is the quality of her vision. The little girl must be seeing better than before though, because she keeps awake a lot more now, as if there's more to see. She loves the 'light show' when we're out for a drive at night as well.

Look here Vera! It's Mama and Papa!

Walk in the Park II

Today we brought Vera to West Coast Park in the evening. It was a first for us as well. We spend too much time in the house, so it was nice to just get out in the open.

The little girl however doesn't seem to like being awake in the day. It's possible her hazy corneas scatter the light and therefore makes overly bright environments uncomfortable for her eyes. So might as well sleep. Next time, I'll post a pix of how big her eyes open at night!

High Brow

I don't know who Vera got them from - her flaming, pointy eyebrows. See the way they sharpen upwards? In Asia, this brow shape is commonly associated with fierce people. Let's just say they're her 'fighter brows'.

It Takes a Man

When you see someone every day, it's easy to take the person for granted. But at the end of the day, I always remind myself how lucky I am to have Ian caring for Vera in these early months.

You should see him...how he cajoles her no matter how exhausted he is; how he carries her, no matter how his back is aching; how he stays with her, no matter many hours she's been crying. How he handles the difficult feeds singlehandedly without letting frustration get to him. It's Patience with a capital P.

In contrast, I pass Vera on when my back is aching, when I get tired, when she's cried way too much. So much for the woman being the best for the job, right?

All I can say is that I'm really really fortunate. I've got the right man.

Hold Your Head Up

"They put me on my tummy again!"

Vera used to love laying in the prone position. Not anymore. This is how she protests: by doing the head raising thing. Up 1 second. Down to rest. Up again. Down to rest. It's tough for her, but this is how high she's been able to raise it to.

Mummy hopes that one day she'll be able to hold her head up.