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.

The More We Are Together

Daen is 2 months old now. He's become more aware of his surroundings, watches faces intently, and smiles socially now. Vera and he are not exactly playing with each other yet...but we look forward to the day.


Here, you can see clearly their relative sizes. I like that he's 'looking up' to his chea chea (big sister).

Here, he's watching intently as Vera claps her hands.

Of course there'll come the day when he overtakes her on all fronts. But for now, he's got some catching up to do!

Rudeness

On a recent visit to Vera's hospital NUH, I witnessed behaviour of some mainland Chinese (from China) that really cheesed me off.

Okay. It is known fact that there are now more and more foreigners living in Singapore than ever before, due in part to the very open policy that encourages them to come here to work (bringing their families along with them.)

Sure we don't mind sharing our city, but please, behave with a little decorum and civility!

There was this couple bringing their about 5-year-old daughter for what seems like a routine visit. Well, she doesn't seem like she's in pain or sick.

First the woman barged up to the counter staff and demanded in Chinese:

"Where is there Internet access?"

Staff replied: "There is no internet access for the public."

"You mean there is no internet access in the ENTIRE hospital?" She raised her voice.

Staff replied calmly: "There isn't."

"How can that be possible? What about in the doctor's room? No internet access??" She pressed on, sounding all high and mighty.

Staff, not reacting to her impatience: "No it is not for the public."

I was thinking in response: "Lady, in Singapore, if you want internet access, you have your own laptop or mobile phone."

I thought I had seen the last of her, but then her husband started shouting indignantly to a nurse:

"What do you mean we have to wait so long? This is ridiculous!"

Well, it is a government hospital and you pay subsidised rates, so don't expect the sky.

Next thing you know, both parents barged into Vera's doctor's room (we had just finished our consultation with sweet unassuming Dr S) with their daughter without even knocking on the door and shouted at Dr S. And guess what? They were seen to immediately.

Totally uncouth behaviour. So much for the gracious society that we've been trying so hard to cultivate!

Look At Me!

I've been so pre-occupied with Daen that I feel like I'm short-changing Vera on quality time.

I love that I caught this split second shot. Here, she looks as if she's trying to get my attention by 'performing' Mommy's favourite act. She's by no means recovered from her congestion - Mr. Mucus seems to be hanging around for a longgggg time, even though we're shooing him off with the suction machine.

To be honest, the only time I spend with Vera these days is when I suction her 3 times a day. The rest of the time I'm attending to Daen, eating, or catching some sleep. Time to blog is rare nowadays, or I'm mostly too tired!

Trisomy 18 Miracles

When a Trisomy 18 baby is born alive, it is already a miracle. Those that survive past their first birthdays - more than their families could ever hope for. Those who make it into their teens, a definite rarity.

This is a touching collection of Trisomy 18 miracles by a fellow mom to a beautiful baby named Lily who just turned One. Each and every one treasured each day of their lives no matter how long or short. You'll catch Vera right at the end.

Trisomy 18 Miracles

Sick So Easily

Vera falls sick so easily. With her, a common cold is exactly that - it's really common.

Already she's having to deal with assisted breathing with the BiPAP. Add a blocked/runny nose to the mix and breathing gets so tough for the little girl.

Our helper Beth is having to carry her (all 9 kilos) for hours in the night to get her to sleep.

And then she only sleeps for a short while - before she is awoken by blockage and is so upset that she has not slept enough.

To add to it, I tried Vera on another milk powder, as she doesn't really need Pediasure anymore cos she's putting on weight too fast. She reacted really badly after just 2 feeds. She started vomitting and having diarrhea. Just like a few weeks ago.

This time, I'm NOT gonna start her on antibiotics. It would just make the diarrhea worse and upset the tummy even more. We'll just have to let the cold run it's course.

One little change in anything has such a big impact on her. I am so scared to change her milk anymore.

Before, I could just focus on Vera. The difference is now, I have to be handling Daen as well.

The current situation is such:

I get up every night for the middle-of-the-night feeds for Daen. This is anything from 1am-5am.

Beth gets up every night because Vera needs water and milk feeds. This is anytime from 2am-5am. She seems to get thirsty with the biPAP blowing air continuously through her airway.

I get to sleep when Daen sleeps in the day (which is quite a lot).

She gets to sleep about an hour (chores/cooking need to be done).

I took over Vera last night from 2-5am (giving Beth a little sleep break), but the spillover is that Ian had to wake up for Daen.

Conclusion: You need 3 to take care of 2.

Thank goodness my mom has been coming in the daytime to keep that equation.

Hospital Visit

I brought Vera to see the GI doctor last week. What a patient, unassuming lady Dr M was!

She recommended that Vera see the ENT doc again to assess if she still has swelling in the throat area (a sign of reflux), now that she's been on Omeprazole (acid reduction meds) for quite a while now.

If there is still Laryngomalacia, then we'll consider doing a PH impedence study. Not very sure exactly what's that yet - I guess we will when we come to it.

After that, I had two chance encounters at the hospital that left me feeling really happy.

I had wanted to get an oximeter from the Respi team but had not managed to contact Dr D in time.

But walking down the hospital aisle, I bumped into him and he arranged it on the spot!

I also had to get a copy of Vera's milk intake calculation but hadn't arranged to meet the Dietician who didn't know when I would be coming. When I arrived at the Dietetics department, no one was at the counter as it was lunchtime. Just then, the dietician walks in, back from her rounds in the ward. She sat down and explained it to me.

Nothing was planned. But yet, it seemed like everything was planned.

Two ordinary miracles make for one special day!

Lion Dance

Latest development: Our little friend is into showing off her head control.

She is so funny these days.

That's My Girl

Despite her tummy woes, Vera is still determined to do her rolls. Today she surprised me with 4 head raises while I was talking on the phone! As if saying ' Look Mummy, I can do it by myself!" Nothing thrills me more than seeing those head raises done happily.

I spend so little time with her these days. But I love her all the more.

Vomitting Again

Vera's not been well the last few days. In fact, she missed her Didi's (little brother's) 1st month celebration.

She came down with a low grade fever last Saturday. I admit I panicked at the first sign of it and headed straight for the doctor and insisted on antibiotics.

On hindsight I should have waited and monitored. Now her tummy's not taken well to the antibiotics (again) - it damages the gut flora - and she's not been able to hold down her milk. Even the Omeprazole she's on, which is supposed to reduce acid production, is not helping.

This is what comes up when we vent (take out the air from) her stomach. Really wondering what this means.


The good thing is that the fever is gone. Hoping to get some answers from the visit to the GI doctor next week.

Daen is a month old

We celebrated his 1st month last Sunday. Might have a post for it when we've time to settle down to sort out the photos.

Before the earlier photos become too 'outdated', here are some pix of our little baby at a couple of days old.

Don't be deceived by his seemingly calm looks. He is surely more vocal than Vera .... :P

Wings

I have just received news of the passing of an 8-year-old Trisomy 18 girl. Her name is Annette. According to her mother, she died peacefully in her sleep.

Much as we enjoy each day with Vera almost as normal now, such news always serves to bring her diagnosis to the fore, and remind us to treasure each moment with her even more.

I'm going to play with her now.

Sayang

No words needed here.

I doubt Vera is really sayang-ing (caressing) her little brother (more like 'Is this a toy?'), but as parents we'd like to believe so!

Where is Vera?

Some of you might be wondering too. I'm guilty of literally asking that just the other day.

We were occupied with our new member and our helper had left Vera briefly on the the mat to attend to some household chores. When I came back from the bedroom to check on her, I found her rolled almost under the coffee table. She was as quiet as a mouse (... well, she is born in the year of the Rat according to the Chinese Zodiac), and it looked as if she was exploring its underside.

She seems to know that we're busy recently and has been quite contented to spend quiet and happy moments on her own - clapping her hands, tapping on her musical toys, rolling around, smiling to herself, etc.

We usually flank her with some toys or bulky objects to prevent her head from knocking onto the hard floor if she rolls off the mat. Thanks to all the 'secret training' she's been putting in while we were not looking, her rolls are faster now and she sometimes can turn in multi-directions. Which explains why she ended up under the table.

Looks like we've got a car mechanic in the making.

Confinement Daddy

Most Asian women engage a confinement nanny during their baby's 1st month.

I've got a confinement daddy instead.

Ian has taken leave to do the honours. Changing diapers, bathing baby Daen, bottle-feeding and burping him in the wee hours of the morning.

During the first few days when I was having difficulty walking, he was literally at my beck and call - can you get this, get that, do this, do that.

He's able to spend much more time with Vera as well, just like back in the days when he was a Stay-Home Dad.

It's nice to have him step in during this time when I'm totally out-of-action. I guess that's what team mates are for.

Vera Meets Daen

Here's the pix everyone's been waiting for: a little belated, but oh well.

Not much reaction from Vera to her little brother's presence, or to his angry cries. She seems too contented in her own world to bother.

I may be home but the last week has been so crazy I hardly had time to even look at Vera.

I miss her so much.

I have not been carrying her for the past 2 months (too heavy myself) and I was surprised to feel the difference in her size and weight.

Hey, when did her head get bigger? When did she get that double chin? When did her hands and legs become so tough? I had missed all of that.

Hopefully, I'll get back into the swing of things soon and start exercising her stronger limbs.

Overwhelmed

The first week post-partum overwhelmed me.

Changing gears from an easy-going existence just eating, sleeping and playing with Vera during pregnancy, to a manic 24-hour feeding frenzy is no joke.

At the same time, the body is weak from the hard work of labour, the birth passage wound is sore like crazy and sitting is painful.

Top it up with the discomfort of profuse sweating, no fan allowed (for fear of rheumatism).

Not forgetting a marked drop in hormonal levels that sets you up for teariness ie the baby blues.

Pack it all together and give it to a mother.

You think I'm strong? You're wrong. There's only so much I can take at one go.

Daen's 1st week

Over his 1st week, we've discovered that little Daen is a snacker, i.e. he suckles a bit, naps a while, then suckles again, etc. May has been trying hard to meet his demands almost hourly. This is very different from the tube-feeding with Vera that we're very accustomed to & has taken quite a toll on her. We've started bottle-feeding with formula as a supplement in order to give her time to 'recover'. Meanwhile, I guess she will be too exhausted to blog for a while.

In addition, he has developed a bit of jaundice, possibly due to limited number of poo. Hope some stomach massages & sun-tanning sessions in the early morning will help.