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.