Suctioning 201

Suctioning 101 described our first forays into the icky business.

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

First step: Vera is bundled up like a mummy.


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


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

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


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


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

Life Lessons from Trisomy 18

Without weakness,
how do we find strength?

Without darkness
how do we see the light?

Without sorrow
how do we savour joy?

Without silence,
how do we learn to listen?

Without fear,
how do we learn to be brave?

Without death,
how do we treasure life?

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

Back (Home) To Suctioning

Yes Vera is back home.

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

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

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

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

This is my baby at her feisty best.

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

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

The Purpose of Life

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

"What is the purpose of our lives?"

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

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

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

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

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

20 years later, the answer reveals itself.

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

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

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

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

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

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

"I long to accomplish a great and noble task,
but it is my chief duty to accomplish small tasks

as if they were great and noble."

Helen Keller

"Umareru" (To Be Born)

"Umareru" © 2010 "UMARERU" PARTNERS LLP

Director: Tomo Goda Running time: 104 minutes Language: Japanese

Opens Nov. 6, 2010

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

Wish I could watch it...

Home Soon

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

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

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

Out of PICU

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

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

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

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

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

Fingers crossed.

Thanks all for your concern and prayers sent her way.

Out of OT

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

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

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

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

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

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

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

Waiting

It's a Sunday and we've settled Vera into her hospital bed. Her op is tomorrow morning at 830am. Fingers crossed all goes well.

The little girl weighed in at 11.3kg. She's gained 500g per month in the last 2 months. Way too fast.

Well, hopefully she'll lose some during her hospital stay!

"Do Not Resuscitate"

I was filling up the survey Barb sent me regarding hospital care for babies born with Trisomy 18/13.

I went back to take a look at her medical records and this is what I found:

"In the event of cardiac arrest, baby is NOT FOR RESCUSCITATION."

Not for rescuscitation.

In block letters for emphasis.

Even though upon discharge, Vera was in no apparent grave situation.

"Condition on transfer quite stable on room air."

There was no mention of surgery options to address her large PDA. Nor follow-up tests to ascertain if she did indeed have central or obstructive sleep apnea - what would cause the much-feared "turning blue". We were not taught to give CPR if she "turned blue".

We were asked to sign a DNR and we did. We were told that it is valid for 48 hours.

I'm afraid that this is the protocol of most hospitals in the world for Trisomy 18 newborns.

Standy Stand

Yesterday Vera's PT teacher May strapped her in the standy for the first time and wheeled her to the classroom.

I was caught by surprise - to see Vera standing alone albeit with support was simply wonderful.

She looks so strong - was my first thought. She was surveying the surroundings with full concentration from her new vantage point.

We will get to rent this over the school holidays to let her get more standing time at home.

I can't wait to bring her to the park in this. Hopefully, she will recover from her surgery quickly!

Recently Taken

I've been unwell the last few weeks hence the lack of postings.

Getting better now, and just in time to rest and enjoy a few more (precious) uneventful days...before Vera goes for surgery in 5 days' time.

Meanwhile here are some latest pictures of us chilling out with the kids - Vera's hazy eyes have cleared so much more that I'm pretty sure her vision has improved. She's put on quite a bit (on normal milk and not Pediasure) and now sports a paunch. Daen's 7 months now complete with chunky thighs and already pulling himself to standing.

Awake In the Wee Hours

Ever since Vera came back from the hospital, her sleep pattern has changed again.

Past:

Awake: 3-6am
Sleep: 6-10am
Awake: 10-4pm
Sleep: 4-6pm
Awake: 6-12midnight
Sleep: 12-3am

Now:

Awake: 3-6am (this had not changed)
Sleep: 6-10am
Awake: 10am-9pm (at least she doesn't take an afternoon nap)
Sleep: 9pm-3am (at least she goes to bed earlier and gets a few good hours)

Beth (who sleeps with her) reports major nose block at 3am.

Here's my theory:

Our dear friend knows that between 3-6am (when her muscles relax the most) is the time when she has most difficulty in breathing. She has learnt that by being awake, she can breathe better (SpO2 100), and avoid the problem. So she wakes, sometimes happily clapping her hands.

It's her survival instinct at work.

I can't wait for the surgery to take us out of this impasse of her nose obstruction. Seeing her unable to breathe properly is so hard. It stresses me out because I know, much as she is gaining weight and looking healthy, she's not gonna last long breathing the way she does day in day out.

We see the GI surgeon today to see if he can do her fundoplication (to nail the reflux) together with the adenoids & tonsils surgery (by another surgeon) coming Monday November 1st.

At least she gets 2 things done with one GA.

I know I shouldn't be stressing, but what mother will not be worried when her child goes for surgery?

Under Seige

The haze is back.

It was bad when Vera was smaller. This time it's even worse.

We're holed in at home. Vera is cranky from the heat and a blocked nose. Daen is cranky from not being able to go out. I'm coughing for 2 weeks now.

It's no fun.

Please rain.

Deep Suctioning

Vera was hospitalised recently.

Why?

Mainly because I didn't know how to get the phlegm out from her throat. She refused to open her mouth.

I thought the nurses would have better luck.

Also, it's just easier to walk away and spare myself from hearing Vera kicking and crying, then return to comfort her when the job's done.

One time I watched: They struggled with her jaw-clenching too.

So I thought of a solution: Let her bite on a rubbery baby spoon like a spanner - it would leave a gap just wide enough for the catheter to go through.

Also, I realised that I would just have to learn this "deep suctioning" that the nurses do. We can't be spending good money admitting her just for "suctioning service" every time she has a bout of increased secretions.

In my life, I've had to do things I didn't like doing. Like go for piano exams, get a wisdom tooth pulled, drink ginseng. Yeah, trivial stuff right. Most of the time, I do stuff I like to do.

Now, I find myself doing something I absolutely find no pleasure in, up to 3 times a day. Seeing Vera look in fear at the catheter she's already learnt to recognise. Seeing her cough even before I start as she knows what is coming. Switching from 'mummy mode' to 'nurse mode' so that I can get the job done effectively.

After every session, I know I've helped Vera to breathe easier and feel less congested. It feels good to see all that yucky phlegm come out. But I am worn and weary from the effort.

It's not easy to work like a nurse when you feel as a mother.

Sigh. What we have to do to love a child.

That Surgery Feeling

When I play with Vera, I have the 'surgery feeling' now.

It's the 'I know what you're in for but you don't have a clue' feeling.

It's the 'I wish I could pre-empt you but there's no way I can' feeling.

It's the 'I decided on your behalf to put you through a lot of pain and you didn't have a choice' feeling.

It's a suckie feeling.

Sometimes it's so hard being a mother.

Adenoid & Tonsil Removal Surgery

Why is it that with the Bipap, Vera still has laboured breathing when sleeping?

The ENT doctor took a look into her nostrils and guess what: Her adenoids and so swollen they are covering almost 90% of her airway.

Which means the Bipap is only able to work on pushing air through 10% of her airway. Not surprising that it's not effective.

The doctors are recommending surgery to remove her adenoids and tonsils.

This is what I googled:

"The most common reason for tonsillectomy and adenoidectomy is to remove enlarged tonsils and adenoids which block a child's breathing passages. The nose may be so blocked by the adenoid (which is located behind the nose and above the back of the throat) that a child can't smell, has a congested nose, and talks like he has a cold all the time. If the tonsils are too large, a child may not eat well, taking only small, soft foods. The child may also have some choking and mouth breathing. Often, a child snores very loudly, may not breathe well while asleep, and may actually stop breathing for several seconds. If severe and not treated, this can put strain on the heart and lungs. It has been shown that removal of the tonsils and adenoids is effective in treating obstructive sleep apnea in children."

I am so glad that finally, there is firm link between her OSA and her ENT area.

Surgery is slated for November - very soon, yes - I am looking forward to having her breathe better but of course worrying about post-op, her recovery period, the horrendous diarrhea burns that is bound to come with antibiotics, and of course, the stress of hospital runs again.

Hospital Staff

Doctors are a hardworking bunch. So are nurses.

They work shifts. (I for one cannot bear the thought of working shifts. It messes up the body clock.)

They work weekends. (Weekends are for rest, for play, no?)

They work long hours. (My jaw dropped the first time I heard that ICU nurses worked 12 hours at a stretch.)

They are prepared to be recalled for critical cases. (Imagine being interrupted in the middle of your rest day with a 'back-to-work' call.

For the above reasons, I conclude that you must really really want to be doctor or nurse. This ain't some 'close-eyes-and-get-by' kinda job.

URTI No.2

Urti.

It's short for Upper Respiratory Tract Infection.

Vera is in hospital right now nursing one. Her 2nd one this year. (Okay, my bad for speaking too soon about her relative wellness.)

We know what to expect now - suctioning and more suctioning basically. All that gunk just has to get out before she can get out of hospital.

But this time, I'm determined to gain some headway with her sleeping difficulties.

Her caregiver Beth has been waking up every night for the last 4 months.

On a good night she tosses and turns fitfully. The mask shifts and covers her nostrils. (By the light of a lamp, Beth strains to check that it is in place again.

On a bad night, the airway blockage gets so bad she is rudely awakened, howling with sleep deprivation. She stays awake from 3-6am. Then knocks out thereafter till 10am.

I tried helping Beth out one night - staying awake affecting my entire system. My brain was a blur the next day.

So, I'm pinning my hopes on the good doctors at NUH to offer us some options.

She may be given Melatonin (as you mentioned Cathy, am I right?) She will be trying on some new mask that will fit her growing face. She's also having ENT take a look, and we'll see if removing her adenoids surgically is a possible way to go.

Lantern Festival

When Daen goes to sleep, it's Vera time. We brought her to join in the merry-making in the park. Once a year in mid-autumn when the moon is at its roundest, parents traditionally buy lanterns for their kids to carry around the neighborhood. You can see her tapping on the lantern below.

Proper Shoes

After searching loads of shops we finally found a pair of shoes that works for Vera. Once again, thanks to Auntie L.

It is high cut (to stabilise her ankle), has a soft but firm sole, and is velcroed (oh so easy to wear and take off). It is not bulky and heavy so Vera doesn't feel like she's lifting a brick while taking a step.

She wears them each time she stands (dances) now. I call them her 'dancing shoes'.

Reflux Bed Gift

Kay, my university friend and her group of scrapbooking mommy friends bought the Reflux Bed as a gift for Vera. It is such a nice gesture, and humbling to know that people who don't personally know Vera actually care about her.

Auntie Kay has been following Vera's blog faithfully. Although she is a mother of 3, she still finds the time and energy for her online nursingwear shop and various charitable causes.

Vera is settling into her new bed. We can tell she is more comfortable in it than in the makeshift one below.


She arches and turns less. Probably because it is softer.

We did a Barium study and X-rays found that Vera does indeed have reflux. Milk goes back up her oeseophagus during feeding. The drastic measure will be surgery (a repeat fundoplication to tighten up the stomach opening) or management of the reflux through positioning - hence the usefulness of the bed.

Now we are able to safely tubefeed her lying down (which has become more often) when she is tired and cranky. And we can let her rest (or let us rest rather) instead of holding her for up to an hour after feeds till the milk digests.


Thank you Auntie Kay and your kind mommy friends!

P.S. Another benefit of the bed...she seems to find it easier to pass motion when lying in it!

At Her Best

This is Vera at her best.

After coming into 2010 dealing with bouts of respiratory illness and then constipation, diarrhea, button issues...we approach the end of the year (oh so quickly) with Vera enjoying a period of relative 'wellness'. She is less tired, happier and er, chubbier. Executing turns with panache. Clapping her hands with glee. Dancing in our arms with joy. This is the Vera I want to remember forever.

Big Girl Now

She's a baby no more. With this hairstyle especially. She's grown tall too.

It's just so amazing to look back and see that she once looked so different.

I miss the 'little' Vera!

Baby Steps

Shoes. Check.
Rolly therapy stool. Check.
Pictures on the wall. Check.

We're all set to let Vera experience walking.

Besides standing, she's recently shown an inclination to put one foot in front of the other. So mommy quickly sourced for a therapy stool (thanks, Teacher May for the supplier) and got one custom made pronto.

She's gone on her first 'sightseeing tour' around the house. She's started looking at the pictures on the wall along the walkway.

It's such a great tool. It allows us to wheel her around, sitting in our lap. It's easier to move her from chair to mat and back as well.

A Career Switch

Just read this news about Mieko's mum leaving the broadcasting world and venturing into Special Education.

Mieko was an absolutely adorable girl with Trisomy 18 whose achievements really inspired me and drove me to do my best for Vera in the earlier days.

The news prompts me think about what I should do with the rest of my life. Should I continue in Advertising? Or should I too start from scratch again and delve into the world of Special Education? I've always loved to work with children...I taught briefly in a kindergarten and secondary school before. But is Vera the sign that I should be working in Special Needs? ...

She's Seeing OK

Orthoptic Test

Vera visited the eye doctor today. It's been almost a year since her last appointment.

She had an Orthoptic Test - they show her placards and note the response of the eye.

There's good news: Her bad eye is showing signs of more movement than at the previous visit. Her good eye is tracking well.

I was also impressed with new equipment to test her eye pressure.

Previously, it was a fat pen-like stick with a rounded tip that had to touch her eyeball to get a reading. (Who likes a pen touching their eyeball, right.)

Now, it's a gun-like thingie with a minute tip that shoots out in a split second to get a reading. Amazing.

Result: Pressure is normal. She is longsighted, but not short-sighted. So no need for glasses. Yey! Vera will probably yank them off anyway.

Surgery can correct her cross-eyes, but we won't be pursuing that as the change will be purely cosmetic.

And her eyes are beautiful the way they are, just because they are able to express what she feels and because they smile.

Hello Friend

Now that Vera's bout of secretions has sort of cleared, we're letting the munchkins have more together time.

They both seem more aware of each other's presence now.

Times like these are so wonderful...not busying with baby or medical care, just watching them do their thing.

Such moments make me think of how "it's all worth it." My days may be filled with Vera-&-Daen Things-To-Do, but that makes my life full. There is none of the emptiness I had experienced during my earlier career days.

Will Vera Walk?

I don't know.

We don't think so far. For us, it's one step at a time. Literally.

Does it matter if she does or doesn't? Actually, not really.

What matters is if it makes her happy. And boy, does standing make her happy. Taking a few shaky steps forward, also makes her happy.

Because it does, I'm gonna do what it takes to help her along.

First, we have to get Vera to stand on her own. And our little friend has always loved to stand.

From us supporting her at the armpits, she can now do it with us holding just her hands. It is the one activity that brings her much joy in her waking hours.

She enjoys shifting her weight around and seems particularly proud of herself when she tries to be more upright.

Alas, some of the characteristics of Trisomy 18 children are Club Feet and Rocker Bottom Feet.

Rocker bottom feet

As you can see in the picture above, Vera has a bit of the latter. The bottom is curved like a rocking chair. It prevents the lift-and-push forward, which is needed for walking.

This malformation result in the uneven distribution of weight, and thus causes inner pronation when she stands. But because the little girl enjoys standing so much (and we love to let her stand) the inner bone of her feet has started to protrude (pix below) to bear her weight.

Protruding bone

Her feet are a really strange shape as well. Longer that usual for her age.


To prevent her feet from continuing to develop in an abnormal manner, we have to get an AFO (Ankle-Foot Orthosis) custom made for her. This is something she will wear that moulds to her feet and is intended to control position and motion of the ankle, compensate for weakness, or correct deformities.

We are currently waiting for something like this to be brought in to the Singapore Foot Care & Limb Design Centre from the US, so that it can be custom fitted for young children like Vera.


It is made of softer plastic by Cascade Dafo, unlike the standard AFOs which are made of a harder, stiffer material.


We hope to get it done soon, so we can give Vera all the support she needs to begin standing on her own two feet.

Follow Me

Vera is better and has resumed her secret training, with Daen watching intently at times.

She continues to have to be suctioned. I try to do it as fast yet gently as possible, before she reaches her threshold to avoid her crying. Her nose is pretty clear now, but green gooey stuff is still stuck in her throat. It's still there because she clenches her teeth and refuses to let me suction from the mouth.

She poops everyday now easily and her button granulation is under control.

Life is slowly getting back to normal.

Propped Up

Thanks Serene, for the tip on propping up.

This is giving her some relief from her reflux/apnea/congestion, but it is a temporary solution.

By morning, the girl has torn through the plastered barricades.


The doctors can't yet figure out why she's unable to sleep, but I can't wait any longer for answers. I need to find a solution for Vera myself.

This is what I found after trawling the web: The Comfy Lift Bed™.


It seems to be the answer to my prayers. Reading the testimonial of the parents, it seems like we are not alone in dealing with sleepless reflux/apnea kids and there is hope.

It's made specially for toddlers up to 5 years old (for Vera that will be till she's 8-9) when baby wedges are too small.

Again, it's available only in the US (made by a man who had reflux himself and started a company making reflux sleeping beds in Texas) and it's quite pricey.

But this could be the long term solution to Vera's sleeping woes.

Advice Needed

Vera is having a bout of bad secretions for the last 2 days.
Very thick, suctioning needed every 3 hours.
Vomiting her feeds.
Able to sleep only 1 hour max at a stretch at night.
Very tired out.
No fever.

So far giving Fluimucil 1/4 pack, once a day.
Zyrtec 2.5ml 2x a day.

Only relief she gets is if I prop her up with an adult pillow. But she tends to slide off when she turns. I have to stay up and reposition her all night through.

Anyone knows whether there's some sort of a "wedge pillow" specially for kids to recline?

Short of buying a hospital bed that can crank up and down.

She's got humidifier thru her bipap, already on saline every few hours, and on machine suctioning every 3 hours. And she's pretty strong now and struggles past any rolled towels we install. So we're needed some heavy duty solutions I'm afraid. : (

Back to the struggling girl...

One of Those Days

There are days when I still break down and cry over Vera.

It pains me to see her still unable to sleep after all that we've done.

After all the expensive machines, giving medications, seen doctors, done sleep study, keeping her full for a good sleep...nothing has made a difference. She is still struggling to sleep, writhing in bed through the night, sometimes crying out in frustration and tiredness.

Beth looks after her in the night. I cannot bear to. I would be depressed by now if I did.

No amount of love that I shower on her will help her sleep through the night. And when tiredness gets to me, I experience a grief that I'm sure every mother of a special child knows - a sense of helplessness in watching their children suffer, and feeling the suffering as their own.

It was 5am and I couldn't sleep as well. How to, when your child can't?

That is why now I close the door. So I don't hear her waking up. I have Daen to look after and I need to stay sane.

Who Do I Love More?

The truth is, I do not love Vera and Daen equally.

I love them differently.

With Vera, it's a fierce, protective, constantly pre-occupying kind of love.

With Daen, it's a calm, relaxed, joyful kind of love.

I get a fuzzy feeling when stuff like this dawns upon me. It feels like my 'understanding' has expanded. Perhaps this is the invisible gift parents receive from their children.

Milk Change

Bye bye Pediasure.

We've switched Vera to Nan H.A. upon advice from her GI doc and another mummy who used it to combat her baby's constipation.

So far, the results have been good. Softer, yellow-green poop. Of course she's still on the stool softener Lactolose daily. What a great product. It doesn't get absorbed by the body, so no side effects.

Nan H.A. is supposedly easier to digest because the proteins have been broken down already. Not sure what that means but as long as it's easy to digest! It must be, because Vera doesn't not arch uncomfortably in her seat (as with Pediasure) towards the end of a feed.

We continue with more water, prune juice, Vitamin C and am thinking of Cod Liver Oil. But dunno if it will oil up the inside g-button.

Just so glad that we don't have to resort to suppositories on a regular basis.


Meanwhile, I've gotten her back on track for her feeding therapy (with a vengeance)! Maybe making up for not doing it the last 5 months.

To my surprise, she seems to be picking up where we left off. She even shows signs of improvement, which totally delights me.

The drill:
Step 1: Massage her face. This stimulates the oral cavity.
Step 2: 'Brush' lips with oral sponge swab. 'Brush' inside mouth as well. This primes her that it's time for 'stuff' to go in her mouth.
Step 3: Chew on Ark Probe. This gives her the cue that she has to bite down on something.
Step 4: Introduce spoon with brown rice.


She doesn't open her mouth wide to take the spoon. But if I place it at her front teeth, she sips it in, bit by bit, complete with clucking sounds that tells me she is tasting it. I listen carefully for her swallowing before the next spoonful.

She has a long way to go towards oral feeding. We may even cause another aspiration episode with this. But hopefully, if I'm very careful, we can inch forward safely, one morsel at a time.

She's Just Hungry

What d'ya know. The little girl can't sleep - not because of the bipap setting, not because of the mask, but simply because she's hungry.

We've been so cautious about watching her weight and her reflux that we've not increased her milk volume in a while. And as all children grow, they need more milk.

Problem is, Vera doesn't cry when hungry. So we never really know if or when she's hungry. She doesn't cry when she's not had enough for a feed either. So we never really know if she wants more.

Well, we do know when she's too full, she'll be uncomfortable and squirmish. At least that's a sign of her limit.

And now that we've changed her milk from Pediasure to a lower-caloric, easily digestible one, mummy has forgotten to up the amount to meet her energy requirement.

Duh.

Previously when she tossed and turned in her sleep, we would feed her water, thinking she was thirsty. She would toss 2 hours later; we'll give her half a feed. 2 hours later she'll be tossing again.

Tonight, I thought, 'heck, let's go with a full feed'. And voila, she yawned and went straight back to sleep.

I'm so glad we've figured this out.

So sorry Vera (and Beth) for your many sleepless nights!

Busy Busy

July was a busy month.

For one, Vera started school after a 4-month hiatus due to Daen's birth and mummy's recovery. She goes 3 times a week, for 2 hours each time. During this time, my mom comes to look after Daen while I send Vera to school with Beth accompanying her.

She's taking a while to get used to school again. She used to enjoy swimming. She didn't like the water the first time last week. Perhaps her tummy was bloated from the backup of poop.


Then her mask started to sport hairline cracks on the edges, because we cut it wider to accommodate her bigger nose. There is no "next size up" for this mask from MaskMedic. So we'll soon have to find another mask solution for her.


Then her button started to leak and we got her a new button. We're dealing with over granulation now, but that's easily sorted. We'll just burn it off with some silver nitrate sticks.

We're still sorting out her constipation - adding new stuff to her diet - thanks for all the tips! - and hope to see good results soon.

Meanwhile, we're trying to spend time with Daen as well - making sure he gets out and about to see the world. Usually this is when Vera is sleeping and has to be home (cos of the bipap). Our little friend is the exact opposite of Vera.

She sleeps after 11pm. He sleeps before 830pm.

She wakes after 830am. He wakes by 630am or earlier.

Hence the early morning stroll at Changi Beach one weekend. It reminded us of our outing here with Vera when she was small.




Having Daen has added a kind of balance to our lives. While I busy over Vera's various issues big and small, his easy-going nature and ready smiles give us some perspective, so the challenges we face with Vera don't becoming all-consuming.

Poo N Button Update

Okay. Turns out the button was just blocked with some I don't know what. I shouldn't have jumped to conclusions so fast. As advised by a friend, we now know how to troubleshoot it, flushing with some coke or fizzy water.

It's just a big relief that the button's A-okay. The surgeon used the stick to stretch the BARD peg upon insertion, so I think insertion isn't that painful. It's the pulling out that wasn't with the stick, just bare hands. But given that it's so soft, I guess it's less painful than it looks. It would have been better if a nurse had held Vera down. Then I wouldn't have to see the blood oozing out from The Hole few centimetres from my face.

Anyway, that's all over.

The poo - it's still not regular.

We don't have Pediasure with Fibre here in Singapore. I could ask the local supplier if they could ship it in, but thing is, I'm just not very keen on Pediasure anymore. I know it's for tubefeeding it's complete nutrition, but my gut feel is that it is too potent (rich, thick, sweet) for her system. Another reason is our house has become an ant-haven. They LOVE Pediasure! So once the poop gets regular, I might try out another non-sweet milk.

With the constipation : I've tried adding really smooth banana puree to her milk, and giving pear juice. She's on Vitamin C and lactulose, and lacto GG. I've upped her water intake by a lot. More than her daily requirement. So far, we're not seeing the smooth passing of stools on these.

Thanks for all the suggestions. Keep them coming!

Time's Up for Button

Before we've resolved Vera's constipation, her button conks.

It's lasted 13 months. It's not expected to last more than a year.

Luckily mommy had anticipated this and got a replacement button ready.

The surgeon pulls the button out and surveys it, commenting on how well-kept it is. Some are completely black by this time. Hers has just a spot of black. Bacteria I guess.


This time is better than the last, with no inner stomach lining being visibly pulled out.

Constipation Week

After 3 days of no poo poo, no passing gas, no trying to poo despite papaya juice, prune juice and brown rice water, we brought Vera to the doctor.

She got a suppository and after 10 minutes, she passed out a lump of the precious cargo. It was relatively hard. I've had to push her anus (ouch!) twice this past week to get the rocky gems out, and it caused bleeding around the periphery. The doctor explained that the pain causes her to have an aversion to pushing. And so the loot builds up further. It's a vicious cycle.

Hopefully with Lactulose, things will return to normal in a few days' time. Hoping to get a whiff of her smelly gas soon. You have no idea how much I love poo.

Update: Sleep n Poo

These are the two main issues we're dealing with at the moment.

Sleep:
Each night I pray that she sleeps through the night. She's been doing a couple of waking-at-3am-sleeping-at-6am. Which really messes up her sleep routine. It's always due to a blocked nose. We saw her ENT doc and a scope revealed that the adenoids in her nasal area are swollen. This reduces the space for air intake. She's now on Nasonex - a nasal spray with steroids. It's meant to shrink the adenoids. So far, it seems to give her relief enough to remain asleep. Hopefully it works long-term, else we'll have to resort to surgery to remove the adenoids. Anyone out there have experience on this? Surgery I mean.

Poo:
It was going to happen sooner or later. On a 100% milk diet, Vera has become constipated. She needs fibre. But we're advised to only put milk or liquids through the tube. So how? Anyone have "fibre" solutions to share for tube-fed kids that won't clog up the button?

Another Family

We've just heard from a friend who knows of a Singaporean couple expecting a Trisomy 18 baby.

When Vera was born, we found no one else in our shoes. We asked the hospital, they told us there was one case but the baby had passed away. Another was not prepared to talk to us. We felt so alone. All we need was some idea of the possible directions in the road head - good or bad.

I was desperate to find someone in Singapore who had a living Trisomy 18 child. On the Internet, I came across a child named Annalisa, born to parents who were pastors. I looked up the mother. When I asked her, "Your daughter lived 3 years right?" she corrected me, "3 years 9 months". That's how precious every day was to her mother. Her eyes brimmed with tears as she told me smiling "Treasure your child, she is special. Just like Annalisa." With that I found the courage to go on.

I'm really keen to get in touch with this couple. After all, who else can truly emphathise with what we've been through? Please do contact us. Ian and I would love to get to know you and share in your journey.

Shoo Fly!

When Vera is excited, she swots flies.

Get in the way and you may experience a few slaps!

Trisomy 18 kids are often described by family members as really happy children. It's true for Vera. As long as she's not medically uncomfortable, she's cheerful. No attitudes, no tantrums. Just megawatt smiles for those who love her.

The Difference

Raising his head already

Just 3 months and Daen can already do what took Vera 2 and a half years to master.

Having him has given us a whole new experience.

We realise how much strength a normal baby is born with.

Equally amazing is how easily a baby can fall asleep. A short stroll is all it takes. After dealing with Vera's sleep difficulties for so long, it almost seems like magic.

After a feed, we are able to put him down immediately after burping, and get on with other things. We always had to hold Vera upright for up to an hour when she was small, due to her reflux. And then there was always vomit to clear, meds to give, tubes to insert.

I'm not comparing them, but rather comparing the difference in our experience of caring for a special needs baby vs a regular one.

Daen's record book

Vera's record book

I totally understand why people with normal babies want to have more of them. And those with a special child choose to stop there.

To Bed To Bed

I'm determined to get Vera out of her late night sleep cycle.

For the past few months, she's been sleeping around 12 midnight. She still struggles with breathing even with Bi-pap (perhaps it's beginning to lose its effect), and doesn't sleep well from 2-5am. The result: She wakes up really late (930am) and takes her afternoon nap at close to 5pm. We're always having to force her to wake up from deep sleep in the day because she's so tired out from not sleeping well at night.

In the past, knowing that she sleeps late, we'll entertain and play with her in the living room till 10 plus.

Now, we're gonna enforce putting her in bed by 9pm. And leaving her to wind down and settle. Hopefully, once she gets used to nobody playing with her, she'll think 'oh well, I might as well sleep'.

Last night was the first night we tried it out.

We peeked and saw Vera still doing her secret training in bed while catching up with Tinny. This girl.

Hopefully it works, and we're able to shift her sleep/wake times earlier.

It's good for her and good for us.

Vera Laughs Again

The last time Vera laughed was 1 year ago. That precious moment was caught on video, the first time since birth that she had ever laughed. I'd not expected her to do it again.

But guess what - she surprised us all. I was telling my mom about the different kinds of nursers - the different breastfeeding styles of babies, and Vera started to laugh!

I couldn't help but laugh with her. I've waited one year for this moment.

Retail Therapy

I went on a shopping spree today.

Checklist:
1) Omeprazole
2) Pediasure
3) Bard button
4) Feeding Tube

While women my age are out in full force grabbing the best buys on shoes, clothes, jewellery and the such at the Great Singapore Sale, I get my retail therapy from buying medical supplies.

Over the last 2 years, I've become quite a 'pharmanista'. I know where the best deal is - for non-sterile gauze and oral swabs. Where 50ml and 10ml syringes are cheaper - not necessarily at the same shop. How to get a discount with a er...borrowed privileged card (worked for a while, till they became more viligant). I'd walk down the aisle and names of medical items roll off my tongue - Duoderm, Tegaderm, Durapore, Micropore, Hyperfix etc. Just like how you would go "Gucci, Prada, Dolce & Gabbana" as you walk down a mall.

The amounts I fork out are not small. The Omeprazole at $82 felt like buying a nice pair of Levi's jeans. The ever-elusive BARD button at $227, felt like a pair of sturdy, long-wearing Camper shoes.

When you're a mother, shopping for your kids becomes just as satisfying as shopping for yourself. Perhaps more so.