Sick Post Study

One day after the ph Impedance Study, Vera has increased secretions.

It could be that she aspirated on some of the milk she vomitted while lying down. Or that she picked up a bug in the ward (guy in the next bed coughing, student nurse with a runny nose).

I"m hoping it doesn't develop into 2 weeks of suctioning or fever.

Ph Impedance Study

We're back home after the 24-hour study. All went smoothly. Just a little vomitting of milk, which I'm sure is due to the tube irritating her throat.

Here is a close look. You can see the measuring "frets" I call them. I'm just happy it turned out to be a really thin tube and not too difficult to insert. I think it's probably a 06 size ng tube size or slightly smaller.

It was good that it was portable, so we could still bring her to the playground. NUH has a lovely open space next to the kids' ward. Here, Vera actually holds a smile until Daddy got the shot : )

Results in 2 weeks' time.

Silent Reflux?

After dallying for a few months, we're finally going to put Vera through the PH Impedance Test tomorrow.

She will be warded for the 24-hour study at NUH.

Vera has been taking Omeprazole for reflux for nearly 2 years now. The dosage costs us about S$150 (USD$117) each month.

In this time, she has hardly ever vomitted. But then again, there's something called 'silent reflux'.

So I'm hoping, once and for all, we'll have answers to the mystery of whether she really has acid backing up or not, at any point in a day.

With the results, we can then either wean down the Omeprazole, or increase it. I'm hoping for the former of course.

Let's see.

Vera Meets Vera

Some moments in life you never thought could ever happen. For me, this is one of them.

You're looking at two Trisomy 18 babes, both named Vera, living in Singapore, on the same bed.

Vera's parents contacted me some time after little Vera was born. It was unbelievable that we live just 20 minutes from each other.

I remember when our Vera was small too, and we took pictures like there was no tomorrow. Marking every month with cake and candles. Seeing other families cherish their fragile ones the same way brings back bittersweet memories.

I Remember

I've been thinking long and hard about writing this post, and postponing it in the process.

Because the subject is one that 'haunts' every Trisomy parent, even if their child is stable and 'doing well'.

In the past 2 years, four of the children whose lives I have been following through blogs, have died.

Some of their mothers have been a source of comfort and support in our journey with Vera, some I know less well.

It doesn't matter that I have never met them, or that most live on the other side of the earth. Because of the intimacy of the internet, I feel their pain and heartache through their words.

Over time, I'd gotten into the habit of looking forward to posts from them, just to know how the kids are doing, if things are going alright.

And now, posts are few and far between. It is inevitable and I completely understand.

I sometimes wonder too, if I will lose the will to write, or need to write, without Vera around.

I cannot bear to take the blogs off my list. So I've created a new list, 'I Remember'.

For how can I ever forget following their journeys of fighting against frailty, hoping against hope and most of all, loving their child completely, tubes, IV lines and all.

Courage

People tell me I am strong for surviving the after-birth ordeal of having a special child.

But I can tell you that the truly brave are the women who choose to continue with their pregnancy, knowing full well they are carrying a special child, at an early point where they have the chance to abort.

It is a quiet courage that has nothing to do with bravado, and everything to do with sheer faith and belief in the sanctity of life.

It is a mother fighting against all the voices telling her "abort! abort! don't let your baby suffer!" and her own uncertainties about every step ahead, knowing deep inside that she needs to give that grain of life at least the chance to decide it's own path - however long or short it may be. It is total respect for life.

While the world around her - doctors, concerned friends and relatives, medical statistics - may point to the dire prognosis and make her feel as though she is making a grave mistake, she has to, despite her own fears, soldier on blind into the unknown with the life inside her, because God has made her, by nature, protector of that life. It is a role entrenched into the DNA of a mother.

So to all the mothers who chose or choose to carry a sick baby, especially a Trisomy 18 baby, to term, this is my humble salute to you. Jill. Christine. And many other women among us.

It is courage more worthy of celebration than any battle fought and won.

Daen's Friends

Friends. That's what he calls them. All the children in this library book have Down Syndrome, and he absolutely adores them.

This girl here never fails to make him break into a smile.

I'm thinking, libraries should have much more of such books, so children learn from a young age about kids who are different from them and need extra help with everyday living. It should not be a rare book find.

I will try buy some of these books from Amazon to keep, they can help to educate Daen and kids who visit us.

I don't remember ever learning or hearing about special needs kids in my young, formative years. I didn't even know they existed.

Changes in societal attitudes stand the best chance of being changed through the very young.

Sightseeing

Vera's school has beautiful wall murals, and she got to see them up close today. There was no swimming due to rain, so she went onto the stander and I wheeled her on a tour around the school.

The last time we borrowed it home, she could stand in it for 10 minutes. Today she could tolerate 20 minutes!

She is most definitely improving.

Heartening News

Vera had a cardio appointment today.

Her last echocardiogram was when she was one and a half.

Now that she's 2 and a half, I thought it would be good to get a yearly update.

No new news - which is good news. There seems to be at least two ASD, but they are very small, about 2-3mm. Dr T explained that intervention is only considered if holes are like 10mm.

Vera's are not causing any problems at this point.

There is increased heart beat pressure, but to be expected because she is a biPAP patient.

We go back to the hospital in 2 days' time for her GI appointment.

Interacting More

As Daen grows, he's starting to interact more with Vera. He looks forward to seeing her in the morning, and looks for her when he comes home.

He observes what we do with Vera, and tries to do the same.

He can even mimic her head-shaking. I am so proud of my 'twins'.

A Good Swim

Of all the school days, Fridays are my favourite.

It's when Vera has Hydrotherapy.

I get to dip in the heated pool with her, run her through her exercises and feel her kicking.

There is none of the initial tensing up. She is relaxed and co-operative, and I feel we're dancing in water.

She used to fuss after 20 minutes. Now, she can last up to an hour.

Unfortunately I'm in the pool, so I couldn't take any pictures!

School Seating

I'm happy that we've got Vera's seating sorted out in school as well.

This chair is bigger than the Rifton toddler chair. The best thing about it is the big slide-in table, which does not have any slots so it stops wherever to avoid her PEG. And because it is heavy, Vera can't shift it.

So I feed her in her pram and then she goes into this chair for activity.

Our National Day is coming up, so Vera learns how to make the flag.

We are having more good days in school now, and I hope the falling sick dry spell continues. I enjoy bringing her to school so much.

Canetons Chair

The newly-throned Queen

We got lucky in our search for Vera's new chair.

Upon the recommendation of Rae who uses the same Canetons chair for her special needs gal, I found out where to buy it online. It was selling at S$159.

Then, I chanced upon a mummy selling a second-hand one online for S$40! And she lived just 10 minutes from us.

Now Vera has a higher-up view, a roomier seat and a wider tray. Her legs are at the correct 90 degrees now. And the backrest is reclinable when she wants to rest. Best of all, the chair is lightweight unlike the Rifton one.

It would be great to have her use this in school too.

Back To School

Finally, Vera and her friend XY are reunited again. These two have been buddies since her mummy and I were both newly pregnant back in 2009.

Vera is also back on the Rifton K110 Mini Dynamic Stander.

She rolls up to the board for some "painting".

Thanks for checking in on Vera, and Cathy thanks for the reminder to keep up on my posts!

Rifton Chair

We're trying out this Rifton Chair for Vera in school. Her current feeder chair, which she has been using since she was a baby, is getting too small for her already, especially at the crotch area.

Problem is the tray table can't fit her, as her stomach protrudes out too much. It will rub against her PEG button.

Hope to get a permanent chair solution for her soon.

Daen's First Hike

The morning before Vera fell sick, we brought Daen to Bukit Timah Nature Reserve. Mornings are usually spent with him, as Vera is still sleeping. The Papoose was given to us by a friend, and it is meant for hiking with baby. Perhaps we can relive our hiking days (Nepal, Kinabalu, etc) with Daen in the future. Or maybe I'll be too unfit by then!

Blood

It's all my fault.

I went to clean her teeth with too much Biotene liquid. She swallowed some of it, and probably aspirated. That very night, there were increased secretions, and now runny nose and a fever.

Don't know why there's fresh bleeding from the nose too. That's stopped, thankfully.

Sometimes, mom doesn't always know best.

Detecting Trisomy 18

This article is way too high-brow for me. But in a nutshell, it seems that someone's found a way to detect Trisomy 13 and 18 in utero to a high 98 per cent certainty. 

New Diagnostic Test for Trisomy 13 and 18

With more cases being seen today ( I understand that a Singapore doctor saw 5 Trisomy 18 cases in the past 1 year), and given that the current practice, at least in the US, is moving towards with-holding life support from very sick babies, I hope these tests get made mandatory soon and offered to mothers from age 30, not age 35.

I was 32 when I had Vera. A Nuchal Translucency Test show "low risk" of Trisomy 18. When I asked about it, the reason was that it was a "false negative". Well, we've got to get better, more accurate tests then!

Another Vera

About a month ago, the father of another Trisomy 18 baby contacted me.

I was surprised to hear they lived in Singapore.

Even more so to learn that their baby girl was also named Vera.

It is just mind-boggling to consider the odds of that. (When you live with Trisomy 18, you start to take probability predictions like "high risk/low risk, high chance/minimal chance" with a pinch of salt.)

The mother Laura learnt about Vera from this blog. We met up, together with baby Ruth's parents, and talked. I never would have thought it were possible to find other parents in Singapore when Vera was born.

Hopefully we will be a source of hope and support for one another.

Sand-sory Time

Vera enjoyed playing with sand at school today. It ran through her fingers and she waded in the 'pool'. It was about the only time she wasn't acting up (due to lack of sleep). So far, the journey to and fro has been mostly with her complaining away.

Stand in the Corner

This is how we've been standing with Vera on a daily basis. It is not the correct position - as you can see, her butt juts out and she is hanging onto our hands like they were crutches.

This is a better position for Vera. Her teacher Jo gave me the idea to put her up against the wall to stand. This way she can learn to bear weight on her legs correctly.

I feel we need a stander for Vera, and will be seeking some advice from her physiotherapist.

I'm also trying out sitting her against the wall. It helps her tuck her chin in and keep her head down.

Back To School

After a relatively long hiatus, Vera went back to school today. Good thing she did not wake up last night, which guarantees a fairly good day ahead.


She was extremely alert, and excited, probably too excited, so she got tired out and cranky. But overall, she enjoyed the session - I can tell from her roving eyes.

She sat unassisted on the mat for the first time in class. I am so proud of her.

Babysitter

My 90-year-old granny tires easily nowadays and visits us less frequently. She's stayed over the past few days, and it's so wonderful seeing her with her great grandchildren. I think playing with them tires her out more than usual, in a happy way though. Oh how I wish she could be with us for much much longer.

Pushing Up

Vera's hands have become stronger. She is now about to push her body up until they are fully straightened.

Through weight management, we have kept her weight the same while she grows in length. She was off the charts for a while, but now she is currently at 100th percentile on the Trisomy 18 weight chart - 25lbs at 3yrs 3mths. I believe this has enabled her to grow out nicely, and also helped her remain active and bear her own weight more comfortably.

Vera at her smiley best.

Encounters At The Playground

I can tell how society views children like Vera just by bringing her to the playground.

Some kids can be mean.

A 5-year-old boy comes right up and laughs in her face.

"No laughing," I chided him defensively. "If you want to laugh, don't come near here."

He does the same to another special needs boy with cross-eyes, about his age, who also happened to be at the playground.

Two other bigger children, both sisters, come up to Vera and said, "She looks so special". Seeing that they were friendly, I proceeded to tell them about the miracles and obstacles Vera had overcome.

They were filled with awe.

One of them asked their mother to come see.

The mother took one look at Vera and said, "Aiyoh, why like that?" Then hurried her girls along.

Her daughter looked at me and said, "Sorry, auntie."

The girl actually apologised to me on her mother's behalf.

We may be a so-called first-world economy, but alas, no way are we near first-world standards in our attitudes towards those who are different from the norm.

Where I live, some people hurry into lifts and close the doors like they are hitting the panic button. They don't have time to wait for others.

Able-bodied people jostle for the lift with those in prams and wheelchairs, instead of taking the stairs.

It saddens me sometimes.

Beautiful Baby Ruth

Look at those eyes. So wide and alert.

This is baby Ruth. Another Singaporean baby born with Trisomy 18.

Another fighter who, despite a hole in her heart, and numerous hospital admissions and surgery, has survived for 7 months now.

Her parents are even more amazing. They learnt about her condition at 21 weeks in utero, and bravely chose to give her a shot at life, and let HER decide how long SHE wanted to live. It is the ultimate respect for life. And truly unconditional love.

From a birthweight of 2.1kg (Vera was 1.9kg), baby Ruth is now 5kg. It is the work of the wonderful invention of tube-feeding, impeccable nursing care, doctors and surgeons who go the extra mile, lots of LOVE and a higher power. And of course, Ruth's will to live.

As of now, she is still fighting for her life, awaiting heart surgery.

Please pray for this little baby.

Survival Statistics

When Vera was about 6 months old, I came across this piece of research findings on survival of Trisomy 18 cases in Japan.

The sentence in bold was what we hung on to:

Abstract

"The prognosis of trisomy 18 is lethal, but recently some long-term survival cases have been recognized. We report here the mortality rate of trisomy 18 based on our hospital data and sporadically published reports in Japan. We collected the 7 previously published reports of mortality and 31 cases from our hospital data with trisomy 18. Our data pool comprised a total of 179 cases of trisomy 18 from 8 institutions. The mortality rates within 24 hours, 7, 28, 60, 180, and 365 days from birth were 14.84% (19/128), 31.01% (40/129), 56.25% (72/128), 64.08% (66/103), 82.17% (106/129), and 90.90% (140/154), respectively. Fourteen of the 154 patients (9.09%) survived for more than 1 year. The Kaplan-Meier survival curves from 78 patients of 5 institutes suggest that trisomy 18 children who have survived over 7 months after birth may have a high probability of long-term survival. We should recognize not only that about 50% of infants with trisomy 18 die within 1 month after birth, but also that about 10% of patients survive over 1 year in Japan. These findings comprise Asia's first clinical statistics concerning trisomy 18, in which the data were collected from multiple institutions. This evidence is valuable in order to perform genetic counseling concerning the natural history of trisomy 18 not only in Japan but also in other countries."

Crew Cut

Vera perspires a lot when she sleeps. This is because she takes more effort to breathe.

The mask headgear adds to the heat. There's usually a pool of sweat on the sheets where her head is.

So I had her hair cut really short this time. Summer is upon us, and the heat will just get worse.

I hesitated about her looking like a boy, and people in the park now ask if I have two boys. But you know, Vera's comfort over-rides everything.

Lazy

I'm sorry I've been lazy with the blogging.

I figured that whenever I post that Vera is doing well, our lives "get interesting" again. So I thought I'd lie low and enjoy the peace for a while. It's June, and for the first time in 2011, we're back to "walking" mode. We'd been "running" for 6 months.

Because of that, every day Vera wakes up well fills me with such joy. It is enough just for her to BE well! She doesn't need to do anything more, really.

The little girl thinks otherwise.

She is intent on crunching her stomach muscles to get her back off the backrest as shown.


She's a determined little one.

Thanks for checking in on us. More to share soon.

P.S. The good news is that she's recovered from the mucus such that Dr D says she doesn't have to be put on Glycopyrrolate. We are so thankful.

Yoga Babe

Our little friend has been practising bringing her right leg up to her chest by herself. We helped her with the other leg to get her into this pose.

Doing our best to keep her flexible!

Visit to Grandma's

We hardly go out as a family nowadays as Vera is difficult to manage outside for long. But my grandma wanted to see her and so we brought her to visit.

Age is surely catching up with her - and she complains of tiredness and giddyness more often now. She is 90 years old.

I think we have to bring the kids to visit more often.

A Tender Touch

It's been a while since I've posted, simply because Vera continues to struggle with mucus and test our endurance in managing it.

As long as this continues, she'll be less than happy and fusses most of the time.

Yet draggy days still hold some special moments.

On one of my park walks with Vera, we encountered a young Burmese woman, working in Singapore as a domestic helper.

When she saw Vera, she automatically held her hand in hers and started stroking it with such tenderness. I was taken aback at the show of love from a complete stranger. In Singapore, such openness in affection between strangers is rare. We have lots to learn from our friends from lesser developed countries about compassion.

She Continues To Improve

Step by step, she improves. First, 2 hands on the table. Now, 2 hands on her lap. I believe she'll raise those hands one day.

Mickey Feedback 1

Five months after we've been on the Mickey and I must say I'm so glad we made the switch.

The cons of the Mickey proved to be unfounded:

1) The protrusion does not interfere with Vera rolling onto her tummy;

2) It hasn't popped out on us, but we got a new one at 4 months, because some suspension medication caused some leakage (but nothing as flowing as the Bard)

3) The length of the tubing is alright for feeding, we just watch for her hands.

Changing it was such a breeze - Vera didn't even feel a thing. Mickey wins hands down!

How To Live

Some time ago I watched a documentary about the separation of a pair of 3-year-old conjoined twins - joined at the head.

Doctors had initially predicted at birth they would only live for weeks, but they defied the odds. Learning even to walk, one in front of the other.

Their mother told the interviewer:

"They want to live. They want to show us...how to live."

Back Home

Turns out it's a viral infection and not, thank goodness, Pneumonia.

Sick of lying down all the time, Vera tries to
get some workout done in the hospital bed.

After admitting her last Thursday upon a fever spike and much suctioning and breathing treatment, we're home on Day 6.

The good news:

1) She's finally got her flu jab - I'm so looking forward to a break from infection!
2) Doctors have finally ordered mucus medication for her - it has to be imported specially from the States and will take two weeks to arrive. (It's called Glycopyrrolate - anyone has used this before?)
3) She's finally strong enough to pull herself up just gripping onto our fingers!

Looking forward to sunny days ahead : )

Sick Again

Even before her secretions have a chance to fully go away, they're back in full force again. Yet another bout of infection is upon her.

I feel defeated. Ready to give up.

I was so looking forward to a suctioning break (I have been suctioning since February.)

There goes my plans to (finally) start some work, or take up a course. Maybe those have to be shelved for good.

We're on standby for fever now. I feel like a boxer, knocked down before I can stand up again.

This Trisomy journey is so so trying.

3 Years Old: Developmental Update

When Vera turned three, she emerged from her cocoon and became a butterfly.

We thought her long-running illnesses would set her back in her development. But the girl has proven us wrong and miraculously made strides in various areas, which really baffles us!

Here's what she's been up to:

1) Improved grip - Her fingers have gotten stronger. Previously, she would hold the Ark Probe to her mouth only if I held it in her hand. Now, she refuses to let go of it, and 'brushes' her teeth rigorously with it for up to 10 minutes. In fact, she will resist if I try to pry the Ark Probe from her fingers!

2) Sitting - She is now able to support herself with her hands and sit independently for about 5 minutes. Her head tilts back less now.

3) Tripod Sitting - She is now very steady in tripod position and can do it for about 10-15 minutes. (Longer if she's entertained.)

4) Pulling up - This really amazes me. Her forearms have gotten stronger. Nowadays, she pulls herself up into a sitting position once you hold her hands! She's so determined to get up, and so pleased when she's done it. We've been doing this with her every day now, and I bet soon she'll be able to pull up just by gripping our fingers.

5) Extremely 'Talkative' - She turned three and found her voice. Nowadays, she will complain throughout the evening non-stop. More if her nose is stuffed with mucus.

It is said that the first 3 years are when they make the most progress. We are seeing the rewards of our consistent efforts at therapy, and I'm happy she's improved this much during this time.

I look at my chubby, cheesy smiley pumpkin and feel so thankful to have her as she is.

Healing

The medication seems to have controlled the outbreak. What a relief. Vera is bored from being quarantined in her room, so we brought her to the newly-opened Punggol Riverside Promenade for some fresh air.

Daen goes home (from his park visit) for dinner, and it's Vera's turn.

How she loves being outdoors now. None of the incessant complaining noises (oh yes she makes A LOT of noise now when no one keeps her company).

And how I love bringing her here. It's great to have a river with grassland and birds just minutes' walk from where we live.

Chicken Pox

The pus-filled blister on her face appeared overnight. We thought it was caused by her mask. But the next day, more rash spots appeared on her back.


We happened to have a planned visit to the pediatrician, and she felt it may be early chicken pox. In normal kids, she would have let them fight the virus without medication. But as Vera's immune system is weak, she gave her anti-viral medication to limit the severity of the outbreak.

We should have given Vera the vaccination at 15months, but again, we dropped the ball and now she's caught it.

As pox is contagious, she may have spread it to Daen, as the incubation period is 3 weeks' prior to the appearance of spots. And yes, they have been playing together and he's been touching her mouth and face.

Vera's now quarantined in her room. Daen will not see his sister in the next 2 weeks. Separating them is the only thing we can do at this point.

Another setback, just when we were planning to get her back to school.

Daen Is One

Vera's still dealing with a runny nose, but we decided she couldn't miss her brother's first birthday. So she made a quick special appearance. Daen was dressed in the tiger suit bought by his Godma.

Grandma shows him the jungle animals.

He got a safari-themed cake, and a jungle-themed party courtesy of his Mai Mai, our very own David Tutera.

Daen is born in the year of the Tiger.

In keeping with Chinese tradition, he was asked to crawl towards and pick one of four items. The one he chooses will reveal what he is likely to be in the future (supposedly)

1) Ruler - Engineer
2) Book - Academic
3) Abacus - Accountant
4) Chicken wing - Chef
He chose the abacus. (A-hah, a future CFO!)

We had a special pre-birthday visit from his Godma and kids as well, and he thoroughly enjoyed his new airplane car.

It's been a blast staying home with Daen - he's been such a good, easy baby that it's so much fun looking after him. Hopefully that continues!