30 July 2010

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!

24 July 2010

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.

18 July 2010

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!

13 July 2010

Leaking New Button!

I am so pissed off.

Seriously.

Barely a day after changing her button, the new one is leaking! After all the trouble - hunting for it, getting a doc to change it, dealing with the bleeding, preventing her from turning and pressing on it - we are back to square one.

Either BARD has sold us a poor quality button, or it has been damaged upon insertion. But I'm not surprised. We had a new one leak after a month in the past.

Whatever it is, the little girl now most likely has to undergo ANOTHER button change - and the pain she's got to go through for NOTHING just hurts me to the core.

It doesn't help that she's still not pooing. And more cranky than happy most of the day.

I'm walking a tightrope trying to manage Vera's well-being/school/appointments and caring for Daen. It's possible, but it's issues like this that just tips the balance and throws me off kilter.

I know there'll always be some medical issue to deal with for Vera, but this is so unnecessary. You can bet I'm gonna insist on a free replacement.

11 July 2010

Time's Up for Button


Leaking because the valve is gone


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.

09 July 2010

Constipation Week

Waiting for her suppository

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.

08 July 2010

Lollipop



Vera's tickled by mommy's antics once again - this time with a toothette. Therapy is fun!

06 July 2010

Update: Sleep n Poo

When she hasn't slept well or enough, it's big yawns in the day.


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?

05 July 2010

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.