30 June 2008

A Word on Cliches

We've heard them all before. I used to rattle them off by heart as a young schoolgirl, phrases memorised to 'add colour' to one's English composition. Cliche they may be, but they hold so much more meaning to me now.

Don't cry over spilt milk
One night after expressing into the wee hours of the morning, I actually toppled the bottle. All the milk was lost, and I burst out crying. There goes what little precious I could give to Vera. There and then, I learnt the true meaning of this phrase.

Time heals all wounds
The wound to my heart of Vera's diagnosis is slowly healing with time, as we come to accept and embrace her for who she is.

Love is blind
Truly. Vera has little imperfections here and there, but I've realised I just don't see them anymore. Like her lateral cleft lip, her overlapping fingers, her cloudy eyes. To me, they are just Vera's lips, Vera's fingers, and Vera's eyes. As long as they smile, they are beautiful lips. As long as they grab my finger, they are beautiful hands. As long as they continue looking around, the most charming eyes.

Every cloud has a silver lining
For the first time, I actually visualise this phrase. Ah, so they are talking about the sun, peeping out from the edges of gloom! Isn't it beautiful? The cloud may be there, but the sun is there too, just hiding behind.

What old phrase will I see anew tomorrow? Only time will tell.

26 June 2008

Down Days

Some days can be hard. Yes, I've learnt to look on the bright side - you know, Vera is here, she is growing, she is starting to smile etc. but the "dark side" is definitely somewhere at the back of my consciousness, a place fraught with fear of the future, uncertainty and despair.

It would be a lie to say that everyday is a song now. Something someone says can awaken the "dark side" and it rears its ugly head.

"How old is your baby? 4 months? Should be able to crawl already right? Not yet?"
"Better raise the railing, she may turn over. Are you sure she can't turn over?"
"My son is so talkative now, he knows so many words!"
"When they greet you when you come home, it's a great feeling"

Comments like these serve as reminders of the what lies ahead for Vera. T18 infants may not be able to sit upright, let alone crawl or learn to walk. Most do not learn to speak, or at most can say a few words.

It's so easy to crumble when I start thinking of all these. The fact that Vera had no idea she'll be this way. My heart aches (yes have you really felt that before, literally an aching feeling where your heart is) and I cry uncontrollably. But it passes. I just let it out and carry on.

I guess we'll just have to put aside all "normal" developmental parameters and focus on Vera's own, as they reveal themselves to us.

As Stephen Hawking said, "When your expectations are zero, every little thing becomes a reason to celebrate."

Every minute improvement becomes a milestone.

Singing Again

Little Vera has brought song into my life again.

Somehow, along the way, I had stopped singing. It used to be so part of my DNA - I'd sing in the bathroom, in school, in competitions, in musicals...then the passion sort of waned with working life, married life.

Now, I have reason to sing again. Because little Vera likes it. She cocks her ear to the side where she can hear. I'd place her on my lap and start a melody of songs - children songs, 'made up' songs and some I've composed just for her, like "Good morning Vera".

Seeing her happy and calm is incentive enough for me to keep singing. I know that this is the best way I can possibly communicate with her now - through sound and voice, given her poor vision.

To lend a slice of Elton John's refrain:

"You can tell everybody, this is your song
It may be quite simple but now that it's done
I hope you don't mind, that I put down in words
How wonderful life is, when you're in the world."

23 June 2008

Happy 4th Month

4th Month developments:

1) Vera starts to smile

2) Vera enjoys morning exercise

3) Vera's eyes continue to clear

4) Vera's fingers are more relaxed now, less tightly clenched

5) Vera's cradle cap is clearing

The New Mom

...is a dad.
Ian has taken 3 months no pay leave to care for Vera. And he's settled into his role much, much better than me. He has a natural flair for pacifying Vera, and tons of patience. I have returned to work, after spending 5 months at home. It felt good to be back at work. A change of environment is always good.

At one point during my pregnancy, we'd ponder over who'd look after our baby after she was born. Well, I guess when you come to it, the answer unfolds itself.

Feeding Vera is the main challenge. Because she's tube fed, she doesn't get the immediate satiated feeling of feeding through mouth. So if she's hungry and starts to cry, she won't stop till she gets the "full" feeling, which only occurs towards the end of the feed. The problem is, the milk won't go down if she's crying. Hence the catch-22.

During a "crying feed", pacifying her and hold the syringe, pouring the milk, plunging, can be quite an acrobatic task, if you're alone. But Ian, being the engineer that he is, has found an ingenious way to get around this. He hangs the syringe from a clothes hanger.

We've also settled into our roles better now. It's a far cry from the initial days, when I was constantly feeling the strain being the main caregiver while Ian was at work.
Now, knowing how busy it can be at home, I try to rush home after work and help out as much as I can. And Ian, knowing how tiring it can be to go to work the next day, tries to cover at least one night feed.
It's tiring, but I'm really happy with this arrangement. I'm glad to say I'm actually starting to enjoy Vera together with Ian. There are much more happy moments now. It's also great to see that she has started to smile, and respond to us when we play with her. At least one of my wishes has been granted!

16 June 2008

A Whole New Ballgame

No one told me post-partum was going to be so hard.

Having Vera in SCN was easy; the nurses took care of her, and I could rest between expressing milk every 3 hourly. Suddenly with Vera home, I had to wake up every night to feed her AND express milk. It was like going from the fire into the frying pan.

Thankfully, Ian's sister came to stay with us to help for 2 months. She did the 2am feed, while I did the 5am feed. Throughout the day, she helped with the cooking, feeding and playing with Vera. She was a godsend. I don't know how I could have gone through it without her.

Dealing with lack of sleep was one thing. Grappling with the blues was another.

Before delivery, I was pretty confident that I wouldn't get it. Wrong. Gripped with a sense of incompetency in handling a newborn and anxiety over coping with her crying, I succumbed to The Blues.

For no reason, I would start to cry. I'd feel really sorry for myself. I'd rant away at Ian. Then cry some more. I'd freak out when Vera's tube came out, partly because I hadn't mastered inserting it. "Why didn't you change her tube? See, now it's come out!" I'd belt out at Ian who was at work, even though he couldn't do a thing to help.

It reached a point when I knew I had to get some help. At least I knew there was a problem. I went to a gynae, expecting to get some medication to alleviate my constantly rapid heartbeat.

"I'm sorry," he said. "Any medication would affect your breastmilk, so I can't give it to you."

I had no choice but to deal with it. Turns out, having Ian's sis around was the best medication. I had someone to talk to about how to care for Vera, someone to show me how to pacify Vera (yes I was learning from her instead!), someone to keep a tab on my emotions.

In two months, I got better. I stopped crying spontaneously. I also got better at the tasks - especially tube insertion. Today, I've stopped feeling fearful and anxious about it. And that's a BIG improvement.

I can't say however that I'm all pro at pacifying her though. Patience has never been my strongest points. When Vera cries non-stop, it gets to me. And when I'm tired, it frustrates me even more. I still have a long way to go...

But all in all, the three of us must have done something right. Because Vera went from 1.8kg to 3kg at home! Doctors had told us it'd be months for her to even reach 2kg.

Vera has proven them wrong.

With lots of love and affection, even the frailest flower can bloom.

13 June 2008

Very Special Care

"Vera's been transferred out of ICU!"

After just 12 days, and a day after receiving her diagnosis, Vera was moved to the Special Care Nursery (SCN).

What would have initially been a moment of rejoicing was now tempered by the news of her diagnosis. Instead of celebrating, we wished she could stay in ICU a little longer. We were afraid that the "intensity" of care for her would drop if she were 'downgraded'.

We needn't have worried. There were apparatus to monitor her heartbeat. Overhead warmers when the ward got too cold. Oxygen "boxes" for placing over her head in the event she had a bout of desaturation (low oxygen intake).

Most importantly, visiting was no longer restricted to lunch and dinner time. We could spend the whole day there if we wanted. Now, we could get near Vera long enough to start getting to know her.
The first thing I did was give her Kangaroo Care. What a sweet term, right? It means carrying your baby skin-to-skin, under your clothes. Just like how a mother Kangaroo carries her baby in a pouch. Even Ian 'kangarooed' Vera. Kangaroo care has been known to help preemies grow better. Newborns get to listen to their mother's reassuring heartbeat and feel the body warmth.

During the 2 weeks in Special Care, we learnt what we needed to know to care for Vera at home. Tube feeding, diapering, bathing. Whenever we were there, we'd take over from the nurses. Slowly, we got the hang of the basics.

The most challenging however, was Tube Insertion. I watched as the nurse inserted the tube into Vera's mouth and into her throat, causing her to choke. I was petrified. You mean I have to do this? I never quite mastered it before we took Vera home. "Ian knows how to do it, I'll leave it to him" I thought.

In Special Care, the care was indeed special. The nurses called each baby by name, and treated them with love and gentleness. Also, Vera had 'friends' here, next to her cot.

There was 'Inspector Brian', a preemie who had spent months in SCN and had grown into a big, chubby toddler. He was always propped upright in bed, surveying everyone, hence his nickname.

Then there was fair, slitty-eyed Shernice, another long-staying preemie, 5 months now in hospital, and about to go home too. She was a chubby toddler too, with characteristic overabundant cheeks of preemies pumped with lots of formula milk.

I will never forget those 2 weeks. Walking down the long aisle towards SCN, bringing expressed milk to Vera, washing our hands with anti-bacterial soap because of MRSA, expressing milk in SCN, watching her oxygen levels on the monitor, worrying whenever it went down.

Looking back, it was a miracle that Vera was even transferred out of ICU. Many T18 babies do not make it out of Intensive Care. Even if they do, they have to be on C-PAP (oxygen breathing aid inserting through the nose). Vera left ICU without any wires or apparatus attached to her.

Finally, a few days before her 1st month, we checked Vera out of hospital. She was coming home.

Home to another brand of Special Care.

Breast is Best

Was I going to breastfeed my baby? Of course.

But when the time came, my baby wasn't with me to breastfeed. She was in ICU.

Recovering in the ward, I watched as nurses pushed babies in cots to their mothers to be breastfed. There I was, still with a big tummy (it doesn't recede so quickly), no baby beside me, you wouldn't be able to tell if I had given birth or not.

On Day 3, I woke up in the middle of the night. Hmmm...I should be producing milk for Vera right? Suddenly, I recalled reading about how important giving newborns colostrum was. Now, how am I going to do that? Alone in bed, I was totally clueless. I called in the night duty nurse and asked her how to do it. There, at 5am in the morning, I somehow managed to produce 5ml of colostrum! My first drops of milk...I was overcome with an immense sense of achievement. Finally, there was something positive that I could do to help my baby.

The initial euphoria didn't last long. Hours later, engorgement set in. A Lactation Consultant came by to help. She massaged, pressed, squeezed, kneaded my breasts. It was an excruciating ordeal which brought me to tears. "No pain no gain" she said.

Sitting in bed cupped with cabbage, I felt like a battle-worn soldier. "There MUST be another way," I thought to myself. There was. A gentler, more effective way.

On Day 4, I visited B's Lactatation Consultation Doris. She showed me how to coax the milk out. Minus the pain.

From that day on began a rigorous schedule of expressing milk every 3 hours. That's all I remember doing during my 1-month confinement. Eating, expressing, sleeping.

Ian would shuttle to and from the hospital, bringing what little I could produce to Vera in ICU. Without a baby to stimulate my breasts, they would produce milk, but not in the copious amounts of breastfeeding mothers.

During those first weeks post-partum, still feeling weak and constantly exhausted, getting up every night to express milk wasn't easy. But I had a very supportive husband. When my hands ached from wrestling with the stubborn clogged ducts and I could massage no more, he lent his strength. I realised then how much I loved Ian.

Today, Vera feeds from a tube inserted through her mouth to her stomach. Babies with T18 have a weak suck and swallowing problems so breastfeeding even bottle feeding is not advisable.
I never got to breastfeed Vera. Do I miss having that experience? Not really. Because what mattered was that she got to drink my milk. And that I gave her all that I had.

12 June 2008

A Grim Diagnosis

A piece of news can change your life forever.

Or perhaps, it already did the day I found out I was pregnant.

Vera's diagnosis came like bolt out of nowhere. We were on yet another visit to the ICU; it was her 12th day there. By then, I was almost getting used to her being there.

Two days ago, she had opened her sleepy eyes momentarily for Mummy and Daddy. We also heard her hiccup! She was on bililights for jaundice, her eyes were still cloudy, and her weight had dropped 300g to 1.6kg. Yet I was in relatively good spirits, knowing that babies can lose their birthweight but majority regain their it in a few weeks. Doctors had flagged us about a few abnomalities, but said that they were not yet able to piece the various signs of the puzzle together.

Upon reaching the ICU, I was surprised to see that Ian's dad and elder sis were there. Why the sudden gathering? "The doctors have some update for us" Ian said.

We were ushered into a room, like a tutorial room. I took out my trusty record book, ready to pen down what the doctors were about to say.

"Vera has Trisomy 18," they said. "This is a very serious condition. 50% live a few months. 90% do not make it past their first year. The less than 10% that do live suffer severe developmental delays. Most do not live past their teens."

The doctors went on to explain how it is caused by faulty cell division, a random act of nature. Instead of making 2 copies of the 18th chromosome, 3 copies were made in every cell in Vera's body. Hence "Tri"somy. This is the 2nd most common Trisomy after Trisomy 21, Down's Syndrome. However, you don't hear or know of it much unlike Downs, because most fetuses do not make it to birth or are stillborn.

A laundry list of the abnormalities she had was described to us. Most importantly of all was a heart defect called PDA, Patent Ductus Arteriosus, meaning "open duct". This heart vessel closes automatically when a healthy baby is born. Vera's hadn't closed. This condition leads to abnormal blood flow between the aorta and pulmonary artery, two major blood vessels surrounding the heart. As Vera's PDA was large, she was at risk of developing heart failure, bleeding in the lungs and problems with lung development.

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.

We were also told to expect very slow weight gain. "It could be months before she even regain her birthweight of 1.9kg." they said.

The doctors went on to describe how they were going to treat Vera's case. Conservative Management they call it, or 'Comfort Care'. What this means is that they will "let nature take its course". They will not perform any surgery, as it would put Vera's life at risk.

It was the worst kind of news in the world. But surprisingly, I managed to remained calm. Calm enough to ask questions and clarify what I was hearing, making sure I understood fully what was being said.

But the minute everyone left the room, I broke down in Ian's arms. Why is this happening to OUR baby? Are they saying our baby is going to DIE??? Why weren't the doctors going to do anything? Why do they have the 'lost cause, nothing else we can do' tone of voice? We hugged each other fiercely. And there and then, we made a pact that we had to be strong and face whatever comes along together, because 'two is better than one'.

It was time again for me to express milk for Vera. I watched it flow from me, drop by drop, like tears from my heart.

10 June 2008


The emotional roller coaster ride started the moment Vera was born.

I was bed-ridden from the operation. 12 hours after it, I still had not seen my baby. Ian and mom would visit her in ICU, and I would get updates from them.

Those first few days were really hard. But for Ian it was even tougher. Shuttling between ICU, getting updates from doctors and visiting me in the ward.

Seeing Vera for the first time from a digital camera picture was hard. It was a shot of her crying...she looked like she was in so much pain. Why did she have all these wires and tubes attached to her?

As we were apart, Ian would record my singing the songs I used to sing to her when she was inside me and try to play it to her in ICU. Somehow, I just had to let her know I was there. From the snug, warm comfort of the womb to the cold, bright world of the ICU, what a rude shock that must be.

On the second day, Ian wheeled me to see Vera. I entered a world only a few ever get to see. Rows of babies, tiny babies, some mere fetuses, loads of equipment, bluish bililights, incubators, constant beeping from monitors. I tried not to be overwhelmed by the fact that my baby was one of these babies.

It's hard to describe seeing Vera for the first time. Something like "So, it was you all this time in my tummy" At 1.9kg, she was so tiny, so fragile. But she looked like Ian! It was pretty obvious. And she had a lot of hair, in a swirling circle. Lots of hair just like her daddy (when he was younger hee).

Just before I was discharged from the hospital, we got to hold Vera for the first time. It was night, and the ICU was empty. A Sister put her into our arms, arranging the wires attached to her. I was overcome with emotion. I was finally holding my baby.

What a strange feeling, leaving the hospital without her. But we knew she was in good hands. The ICU staff worked 12 hour shifts, yet they always had time to update us about her professionally and patiently.

Vera spent 11 days in ICU. Her eyes were mostly closed, not quite aware she's already out of the womb. We stroked her, the only thing we could do, as we waited for doctors to complete a slew of tests on her to confirm her diagnosis.

I was prepared for bad news. But no amount of preparation would have helped for what we were about to hear.

09 June 2008

Having a C-section

Dr T advised that small babies may not survive the trauma of labour, so a Cesarean was the best way to go. Not knowing any better, I went along. Anything for my baby's well-being.

Now I know that there are T18 babies that come into this world the natural way. Given Vera's record so far of fighting to survive, perhaps she could have made it on her own? Who knows.

I remember the operation vividly. I had wanted to undergo General Anaesthesia, but after hearing about the higher risks, chose to go with Dr T's advice of Local Anaesthesia. Well, the result of being entirely awake through the operation is that I now know I don't want to go through it again. Ever.

The operation was scheduled early on the morning of 22nd Feb, 2008. I remember being wheeled into the holding room, where the anaesthecist greeted me. A young man, bit cocky from the tone of his voice. Breezily, he said, "You do know right, your baby's head will be quite big when she comes out, are you sure you want to see her? I thought to myself, what a funny question. Why wouldn't I want to see my own baby? Was he afraid I would be too traumatised by the look of my own baby?

Anyway, he then said that she may need to be whisked to ICU if needed, so I may not get to see her. Thinking back, I should have insisted on seeing her. Yes she needed to be taken straight to ICU, but I'm sure I could have seen her for a few seconds. That was a moment I regret not having: seeing my baby fresh out from my tummy.

Everything happened quickly. They transferred me onto the operating table. A green cloth was pulled across my face. The moment I was asked to turn to the side for the needle to be inserted was when fear flooded over me. Thankfully, mom's friend was there. She held my hand and reassured me that it was going to be ok.

Next thing I knew, my body started going numb, all the way to my chest. What a strange feeling, not being able to move your limbs. Then, Dr T peeped over, said hello, and got to work. It happened so quickly. To calm myself, I imagined I was descending during a dive. I was at the 7 skies, free falling through the deep blue water. It worked. I couldn't feel the incision being made at all. Minutes later, the anaesthecist said, "Your baby is out, they've taken her to ICU". It was so quiet. I remember thinking, why didn't my baby cry? What was wrong? He then told me that it may be because she may still think she's in the womb, and had not yet reacted to being "taken" out.

Now came the horrible part. As the uterus was being pushed out, I could feel breathlessness in my chest. It felt like some thing was sucking the air out of me. It was hard to breathe. Then, when it subsided, I started to shake uncontrollably. I had read that I may shiver from cold, but it wasn't shivering at all. More like fits. I had no control of my body at all. Scary.

Then came the road to recovery. Having to stay motionless for a full 12 hours. Followed by learning to walk the first painful steps the day after.

Today, nearly 4 months later, the area is still tender and slightly raw to the touch.

The scar is 10 cm long. It will stay with me forever. A reminder of what I went through out of love. And a reminder that this beautiful little girl named Vera was once in my tummy.

In The Womb

Yes, what a long time ago that seems. But really, the story starts back then. So that's where I need to start.

It was all smooth sailing, nothing eventful. Up till the 7th month. Yes, baby was a little small, but, as Dr W. assured me, "some babies are small at birth, like 1.8kg, but perfectly healthy". I believed her, and carried on happily in my pregnancy.

Then, in the 7th month, the nightmare started on one of the scan visits. Up until then, all scans showed no irregularities. In this scan however, Vera's Cisterna Magna, a place with fluid in the back of the brain, was found to be enlarged.

What did this mean? Is this going to be a problem? I was still in good spirits, not at all prepared for what Dr W. was going to tell us.

She told us, based on the enlarged CM, our baby was going to have Dandy Walker Syndrome. Then, she told us, she didn't have any experience with such a case. "All I know is from what I've read from textbooks," she said.

I remember being so crushed. If her experience on this is NIL, how can she be so sure of the diagnosis? At that point, I knew I had to get another gynae.

Upon her referral, we then transferred to KK hospital. That was the best decision we could have made towards Vera's care in the first days of her life.

Transferring to KK meant a lot of things. We were pre-empted that there was a high chance that Vera would need to be in Intensive Care once she is born. ICU can cost up to $1000 per day in private hospitals. She may be there up to a month. That would have really drained our finances.
At KK, I could apply for 'C' class, subsidised class.

Gone were the ideal images of me having my own 'A' class room after delivery. I had to stay in a 'C' class ward! Ok, call me pampered and spoilt, but the thought took a little getting used to.

But today, looking back, it was the smartest decision. Because I was 'C' class, Vera is 'C' class now. Given the numerous check ups she needs for different problems, at least financially, the cost is not an issue.

For the next few weeks, it was not easy not to worry. "What is going to happen to my baby?" The uncertainty was unbearable. And yet, I had to keep my spirits up, knowing that if I became emotional, it would affect little Vera.

Further scans at KK in the last few weeks picked up more signs. My umbilical cord had only ONE artery, supplying nutrients to Vera. The norm is 2 arteries and 1 vein.

Imagine, this little girl has struggled to survive on ONE artery over nearly 9 months! (Now we know this is one of the characteristics of T18.) I knew then that in my tummy was a little fighter.

Usually, such babies' heartbeat would weaken towards the end of the pregnancy. Vera's didn't. The several CTGs showed her heart beating steadily, all the way to the end of my pregnancy. Amazing.

Now for the next big news...I was to have a C-section.

Starting the Journal Journey

Yes, finally. After 3 months of wanting to put my thoughts, feelings and emotions on paper (e-paper, that is, I've finally done so.

On this page I shall begin to write about the whole experience of having little Vera come into my life. It's been one hell of a journey. I've not found impetus to write in a very long time. Now, the time has come and I feel compelled to hit the keyboard.

There is so much to say...to pour out. Where do I start? I'll just begin from today i guess.

Vera is 3 and a half months old today.

Looking at her, sleeping sleeping most of the time, you wouldn't be able to tell how hard she has fought to be here.

Everytime I read about the statistics, I think to myself: Why, given the grim figures, is this baby still here? Why has she defied all the odds? What is she trying to tell me?

The figures are indeed grim. Most babies miscarry. 50% don't make it to birth. Of the ones that do, 50% die within a few months. Of the rest that don't, 90% within the 1st year.

But one look at Vera, and all these numbers disappear.

She is one fiesty little girl. Medical literature deems such infants 'feeble'. Yes that's the term used. Feeble? Vera kicks and wails.

Although she probably can't see very well (her hazy corneas have yet to clear completely) she looks around aggressively, especially when we take her out. You can see her, all wide-eyed and alert.

When she first wakes up in the morning, well rested, she is so much fun to play with. ML (Medical literature) says that such babies may not smile. While Vera has yet to smile completely in response to us, it is clear especially in the morning when I play with her, stretching her hands, that she actually looks happy. She enjoys it when we pat her own hands on her chest.

There are 2 things I really wish for, for this little girl. One is that her corneas will clear and she can see Mummy and Daddy. Two, is just for one smile, when the time comes and she can see us. In the meantime, it's good enough that she responds to our touch and our voices and shows that she's happy.

The ML may say one thing. But, as I am slowly coming to realise, my daughter is telling me things too without so much as a single word. As much as reading the books, the website is important, more important is that I have learnt to read my daughter. And to let her show me who and what she is.

There is a quote, from a Christmas card I received from long ago. It says, "And a little child shall lead them."

Vera, Mummy and Daddy are following right behind you.