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.

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.

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.

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.

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.

Day Out

Today, for the first time, I dared to take time out, leaving Vera solely to my new helper and my old grandma.

What did I do? What the typical Singaporean woman does - head for some retail therapy at Orchard Road.

It seemed like such a luxury just to be in town - to not be working on a weekday, and to have someone trained to do the works - feeding, bathing, rocking Vera to sleep.

I saw many "tai tais" - well-heeled, well-dressed, well-made up middle-aged women of leisure at a Bobbi Brown make-up workshop. I thought to myself, they must be so free. It seemed like looking good was probably what occupied them on a daily basis.

Unlike them, I was dowdily dressed in yoga pants and broad brown sandals, my hair flat and bodiless...hardly the do for strutting down the famed shopping street. I had "Stay-Home Mom" written all over me!

Years ago, I would have been aghast at my own sloppiness. But motherhood changes your self-image. When there's so much else on your plate, what people think of the way you dress just falls to the bottom of the pile.

Nonetheless, anyone out there keen to sponsor a make-over for this frumpy mom?

Give Her a Handicapped Child

This poem describes me to a T. It made me feel like I have been chosen to have Vera.

THESE MOMS SHARE SPECIAL GIFTS
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecelia. Rudledge, Carrie, twins, patron saint...give her Gerard. He's used to profanity."

Finally he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious, "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world, and that's not going to be easy."

"But, Lord, I don't think that she even believes in you."

God smiles, "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods, "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says Momma for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised in midair.

God smiles, "A mirror will suffice."

Reality Hits Home

Vera turned 1 and a half years yesterday. But I am filled with sadness today.

Because little Brianna was doing so well, and now she's suddenly having blue spells and going in and out of hospital.

The reality hits home for me - that for Trisomy 18 babies or children, no matter how 'well' they might seem, there is just no guarantee. (Come to think of it, nothing in life does right?)

And as a Trisomy 18 mom, I live with a 'disclaimer' every day. That no matter how happy and thankful I am with Vera's current state, I know I need to be prepared to give it all up someday, perhaps even suddenly. Perhaps it is my defence mechanism - the need to preserve my sanity. That's why ever so often, especially in wee hours of the night, I play over Vera deterioriating in my head, and play over myself letting go. I know this may sound like really negative thinking, but it's just my way of coping with the uncertainty of the future.

I was just happily singing this song to Vera the other day, and burst out in tears without warning.

"You are my friend,
Though we're miles apart
I am still with you
For always you will be in my heart.

You are my friend,
And I call your name,
Though it's not the same,
Forever you will stay in my heart.

Wherever you go, I want you to know
There will always be, a you and me cos
You are my friend, till the end."

Of course I experience the immense joy of Vera, but sadness is always looming somewhere in the back. It's just a reality Trisomy 18 parents have to live with.

Joy, sadness. So opposite yet so much the same thing.

Forever Young

Vera has an immense effect on my 88-year-old grandma.

Somehow, she makes her younger. When granny cajoles her, she sounds like a little girl with a high-pitched voice. She gets down on all fours to play with Vera on her mat. She smiles a lot too.

I sometimes wonder who will outlive the other. It's just a fleeting thought. Both of them, so precious to me, to be treasured more, for time is not on their side.

Walk in the Park 8

With the H1N1 flu going around, the safest place to bring Vera is the beach. Here we are at Pasir Ris beach, just a 7 minute drive from our home. Yet another quiet, peaceful outing with Vera.

The Haze is Back

The dreaded haze is back to haunt us.

Every year at about this time, smoke from primitive slash-and-burn activities in Sumatra, Indonesia blows over to Singapore, and it's hell on our respiratory systems. I'm exaggerating, but hey, we're losing the basic need for fresh air and breathing normally! My nose is stuffed up, it's hotter than usual, and we put up with the smell of a burning fire the whole day.

Vera's not taken well to it either, as I had expected.

She was up from 2-5am, struggling to breathe through her blockage. Daddy had the unenviable task of carrying her in the wee hours. Being more upright helps.

Arrgh! Some things (well, actually most things) are just beyond your control.

Be Strong Brianna

Our friend with a lovely little girl named Brianna has been experiencing the much-feared 'blue spells' that all doctors tell parents about when they first break new of the Trisomy 18 diagnosis.

At the time of Vera's birth this was what we were told:
In time to come, babies with T18 would have frequent apnea spells. This happens because the brain sends faulty messages to different bodily functions. Hence, she may "forget to breathe" and have more and more frequent "blue spells". "When you open up her blanket and don't see the rise and fall of her heart after 20 seconds, it's not a good sign," they added.

No parent should have to watch their baby turn blue. Please send your thoughts and prayers to this beautiful little girl who has been giving such hope to all of us with Trisomy 18 babies.

Ms Triathlete

"Here comes participant Vera fresh out of the swim leg in record time,
let's give her a big ROUND OF APPLAUSE!"

Vera tried 'walking' on the floor of the pool in school for the first time today, with the help of her teacher. Mummy got the chance to fantasize about her future.

Phlegm 911

Phlegm builds up in Vera every day and she is uncomfortable until she vomits it out. This now happens at least twice a day, once in the morning and once before she sleeps. We are so thankful she has learnt to cough it out.

Phlegm calls for an emergency response. When you've had enough of changing clothes, bedsheets and pillowcases laced with thick, gooey puke, you learn to 'catch the moment' before it happens. We now have these white plastic bowls placed all around the house. At the first sounds of retching, I bolt like a deer to her side and place the bowl by her mouth. Speed is of the essence. So far, there have been so many 'saves' that I probably could make quite a good goalkeeper.

Happy 17th Month

Dear Vera,

You turn 17 months today. This past month, you've become skinnier and lighter. You've lost some weight because you had the runs for nearly 10 days. Probably because mommy tried to change you to another formula milk too quickly and your system could not adjust to it. In getting you onto a milk that would help you gain, it made you lose weight instead. We'll have to treat your body more gently from now.

This month you became more 'knowing'. You seem to know - yes it's not just being aware. You seem to know mummy is trying to make you laugh, and you smile with anticipation. You seem to know when mummy scolds you (yes, I do) for fussing non-stop at night, and you stop (for a while). You seem to know when it's physio time, and you try to play along (for a while). You know certain songs when you hear them, because you'd break into a smile. How much do you know? I think you know our love - and that is all the language we need.

Happy One-More-Month, Vera. What a fun-filled, poop-filled month it was.

You Light Up My Life

Daddy loves to show Vera the lights at IKEA.

The Power of Touch

When Vera was born, her fists were tightly clenched, her second fingers overlapping the third. These are characteristic of Trisomy 18 babies.

We refused to believe her hands would remain closed for good.

After 16 months of therapy - lots of hand-holding, massaging, clapping, stroking - Vera is able to keep her palm open and clap with us for a little while. We look forward to the day she can clap on her own.

All Lives Intersect

One of my favourite authors is Mitch Albom of Tuesdays with Morrie fame. I had a rare chance to re-read his latest book The Five People You Meet In Heaven while Vera was asleep, and came across this poignantly perceptive passage:

"Did you ever wonder? Why people gather when others die? Why people feel they should?
It's because the human spirit knows, deep down, that all lives intersect. That death doesn't just take someone, it misses someone else, and in the small distance between being taken and being missed, lives are changed."

The Value of Existence

The value of existence varies.

When existence is threatened, our perception of its value changes.

An animal that's endangered or close to extinction attracts far more attention than one that is not. Similarly, a person who is dying receives a lot more time from dear ones compared to when hale and hearty.

Same goes with Vera. Before she was born, we had intended to put her with a nanny while both of us continued to work. Now, given her expected shortened life span, time with her seems to take on far greater value. Also, by being the rare 10% to survive beyond infancy, she is giving us time. How can we not do the same? I often remind myself that while others have a lifetime in the 'country' of their children, Vera is but visiting us on a holiday. She deserves to have the time of her life.

I Can Sit Up

Hey, hey, hey...now this is a different view.

Finally, Vera is able to sit up on her own. Not for long, maybe 15 seconds but it's already wonderful enough a sight for mommy and daddy to behold. Here she is doing 'tripod sitting' - supporting her weight with her hands in front. Looks stable, right? Until the little girl arches backwards or tips to the sides. Although the new view is interesting, she knows lying down is still far more relaxing.

Getting a Helper

It's been 3 months since I've been home looking after Vera full time. Even with some part-time help from my mom, aunt and grandma, and Ian's complete support, it's been rather overwhelming for me. It's quite a strain on them as well.

As a copywriter, what I'd been doing on a daily basis for 10 years was sit at Starbucks and think of ideas, sketch stick figures then move the mouse. I enjoy looking after Vera, doing her therapy, taking her to school, helping her improve. But I'm not used to the monotony of routine chores. Perhaps my brain has been wired by now to seek change and new ideas on a daily basis.

So now, we're looking for a helper. Perhaps I'll be able to do some part-time work from home to help finance it. Hopefully, that will be a better balance.

One of a Kind

Serene, Jonathan's mom, made this T-shirt specially for Vera. Thank you so much for this unique gift. It really brightened up my day, and Vera's wardrobe as well!

Here's Looking At You

When you have a child that doesn't talk, you learn to read her every expression.

This is Vera's "intrigued" look - she's anticipating some cuddle, or tickling coming her way. It's also the look I get only when I sing the song I wrote for her "Good morning Vera". "I know that one" she's saying. I've been singing it to her for months, ever since she was still in my tummy. Finally she can recognise it. It's an amazing feeling.

This is Vera's cheesy smile. It says I really like what you just did. She hasn't laughed ever since that rare moment caught on video, but this smile is good enough.

New Button

Vera had her button changed today, 3 months after it was inserted. It had been leaking because the valve stopping the milk from flowing out had become faulty. In less than 3 minutes it was yanked out, and a new one stuffed in. There was bleeding, a little of gooey insides outside, and a howling baby. But she was such a trooper. She remained motionless for the procedure and stopped crying soon after.

She's vomited quite a bit after the change. Some bleeding on the insides of the lining can irritate the stomach. Hopefully it settles.

Less wet tissue-wet clothes-wet gauze days are up ahead. Hooray!

It's Scoliosis Alright

The X-ray says it all. Vera's does have Scoliosis and it's worse than I thought it would be. Her curvature is 18 degrees. The pediatric surgeon said they'll likely recommend a brace when it's between 20-25 degrees. As for now, all we can do is "monitor".

Now, this word "monitor". Do you know how a parent reads it? It like saying 'sit back and wait and watch it get worse'. Is there anything we can do to stop it from getting worse? "No, there isn't. All you can do now is monitor."

Seeing Vera's insides up close for the first time brought me face to face with the workings of Trisomy 18 once again. This genetic condition has given my baby an imperfect spine from birth. And there was nothing I could do about it. Somehow, this hit me pretty hard. Maybe because I have spinal misalignment issues myself, and know the effect it can have on my breathing and the aches and pains I sometimes feel. Oh, she's just a baby!

It will take some time (it'll happen don't worry) for me to accept the stark reality of her spinal condition.

Welcome to Holland

WELCOME TO HOLLAND

by Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

A Good Day Out

Over the weekend, we took Vera to Singapore's newest attraction - the Marina Barrage. It's a new dam that locks in a reservoir of water at the mouth of the Singapore River leading out to the sea. It has a spectacular view of the Singapore skyline - you can see the Flyer, like the London Eye, from here. The sun was setting, the breeze was blowing. It was one of the best outings we've had with her.

Cigar Anyone?

Our recent visit to speech therapist Vasu brought good news. He saw how Vera was drinking water by the spoon and was clearly impressed. That's a skill that is supposed to be more advanced than bottle sucking. On top of that, kids usually start off therapy with thicker textures before moving on to liquids which is supposedly more difficult. So Vera's gone the other way around! She doesn't take well to puree. In fact, he went as far as to say that she probably has mild to moderate oral dysphagia, and not pharyngeal (further down the throat) dysphagia. This is a therapist with nearly 15 years of experience so I was really happy with his words. I just felt like, all the effort with therapy every day for the last 10 months...the toothette, the face massage, the spooning, it paid off! It seems it all clicked for her after her lateral cleft was repaired.

So now, we're going backwards and starting Vera on food. They must be high-taste, such as salty or sweet crackers. The aim of this is more to awaken her different tastebuds, rather than to get her to ingest something. Sour is not recommended though, such as orange juice. She tends to choke on citrus juices.

The strips of crackers seem to do the trick. She plays with little bite-offs with her tongue. We're taking it slow though. Cigars are best enjoyed that way anyway.

Special Child

A friend of mine posted a really special poem on their blog. And it reminded me of one that I'd come across in the earlier days. Just thought I'd share it again.

I Am The Child

I am the child who cannot talk. You often pity me. I see it in your eyes. You wonder how much I am aware of...I see that as well. I am aware of much...whether you are happy or sad or fearful, patient or impatient, full of love and desire, or are just doing your duty by me.

I marvel at your frustration, knowing mine to be far greater for I cannot express myself nor my needs as you do. You cannot conceive my isolation, so complete it is at times.

I do not gift you with clever conversation, cute remarks to be laughed over and repeated, I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world around me. I do not give you rewards as defined by the world's standards...great strides in developments that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable...I give you instead opportunities.

Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible.I drive you further than you would ever go on your own, working harder, seeking answers to your many questions, creating questions with no answers.

I am the child who cannot talk. I am the child who cannot walk. The world sometimes seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, Oh I've dropped my spoon again. I am dependent on you in these ways.

My gift to you is to make you aware of your fortune - our healthy back and legs, your ability to do things for yourself. Sometimes people appear not to notice me, I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.

I am the child who cannot walk. I am the child who is mentally impaired. I don't learn as easily, if you judge me by the world's measuring stick.

What I do know is the infinite joy in the simple things. I am not burdened as you are with the strife's and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love.

I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you, I teach you of respect for others and their uniqueness. I teach you about how very precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you about giving. Most of all I teach you hope and faith. I am the disabled child.

Cheek to Cheek

When Vera is well-rested and in a good mood, it's grins galore. Here you can see her one big front teeth and 2 little bottom ones. Plus a double chin that's steadily growing. She smiles so readily nowadays, and is really so much more enjoyable. Mommy picked the right time to stay home!

Back Breaking Work

It's been two months now that I've been home with Vera. It's back-breaking work, literally. Because of their low muscle tone, kids like Vera are like 'dead weight' when being carried, so all the weight rests on your spine. My mom has over-strained her spine helping out with all the bending over, carrying and physiotherapy. My back feels it too, it's too used to a life of office work and lack of exercise. This in comparison, is the most exercise I've had on a daily basis!

Some bad habits:
1) Bouncing Vera in my arms sitting on the bed like a 'yao lan' to get her to sleep.
2) Bending over during diaper change with back curved.
3) Hunching while carrying Vera

Now, I try to do these:
1) Vera on floor: Carry her pressed to my body first, then standing up with back straight.
2) Vera in cot: Bend over during diaper change keeping back straight.
3) Less bouncing
4) See a chiropractor!

Hopefully, Vera gets more tone in her back muscles. So we can give ours a break.

Vera 1 Us O

It's been 2 weeks and Vera's still not on the CPAP at night. My initial enthusiasm in getting her onto it waned by the 1st week. The result of rejection! haha. With us so sleep-deprived, the first thing we want do when she falls asleep at 11.30pm, is to sleep ourselves, and disturbing her with the mask just risks waking her up, and we so don't want that!

We've tried a smaller, nasal mask. But even so, it's having something covering her face that gets her flailing her arms vehemently in her sleep. So, yeah, we've chickened out for now, giving in to Vera's adamant refusal of the contraption. Soon, we'll have to return the CPAP machine which was loaned for trial for a month.

So I guess that's the situation for CPAP for now. Vera 1 - Mummy and Daddy 0.

Button Care Part 3

We're into our 3rd month of button care and I must say, I'm very happy that my fears of an oft-bleeding over-granulating stoma have been unfounded. In fact, the granulation (reddish tissue) has shrunk in size, such that we can now actually see the stem of the button.

A lot of work goes into this tiny contraption - copious amounts of tissue and sterile gauze changed over and over after every feed to soak up the leaking milk and greenish discharge. Now that we've gone from 3-hourly feeds to 2-and-a-half-hour feeds, it sometimes seems my day is an endless cycle of feed Vera, change tissue, change gauze. But it's worth it if Vera's granulation stays like this. Many thanks to the kind mother who gave so much gauze to us...this is the happy result!

Rollin' Good Times

Introducing the RollerBabeTM. Can roll off pavements and into ditches. Performs best in the morning.

Princess Boppy

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.

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.

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.

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!

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.

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.

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.

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!

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!

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!

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."

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?