Days 266-273

So on Tuesday we went to see the surgeon regarding the g-tube op. He recommends doing a laparascopic gastrostomy. Basically meaning that they cut a small incision through the belly button, then then go into the stomach, and create a small hole through the stomach, and out the abdomen wall. To avoid "leakage", they then suture the stomach directly to the abdomen wall. He said that, as opposed to doing the procedure through the oesophagus, it's a slightly longer operation, but not too invasive (there are more invasive procedures). We will then have a mic-Key tube inserted immediately (how ironic is that?!), which is a flat little button like attachment, which lies quite flat on her stomach, and would be the entry for the feeding directly into her gut. He says it's very comfortable, and she can move freely without there being a risk of the tube coming out etc. Because we're going directly into her stomach, he also says we can pretty much feed her anything through the tube (provided, obviously, it is pureed/ liquid form).

What are the risks?

Well, firstly, there is quite a high risk of infection directly at the source of the wound... in fact, he said this is fairly common, and obviously quite treatable, provided we keep an eye on it. In some cases, the wound site develops quite nasty sores... (I forget what he called them)... which will obviously need treatment.
There is also the risk of there being a leakage from the stomach into the abdomenal cavity... obviously this can cause quite bad infection... but he seemed to say it was fairly unlikely because of the fact that they actually suture the stomach to the abdomen.
Then there are the other risks, such as her reaction to the anesthetic, her ability (or non) to come off the ventilator. Also, interestingly, he said with "these" babies (meaning T18 babies), between the ages of 9-12 months, they start to gain weight, and the added pressure of her gaining weight, puts pressure on the heart to work harder, and could equate to the heart giving out.

It's such a catch-22... we want her to put on weight, bearing in mind that she has remained at aroung 4kgs for over 3 months; but the risk of that is that it could actually cause her heart to give up. Am I killing my child?

*sigh*

You know, this is my take on it: I can't live for tomorrow. It's too much to think of tomorrow. And as I was explaining to Miks' nanny, in everything in life, there is RISK. I risk being in a car accident everytime I drive on the road with my children. But we can't live scared of every risk. OBVIOUSLY there is unnecessary risk- but for Mikayla: well, she's not a smiley, content little baby. She is uncomfortable a lot... and I would be too if I was always just a little bit hungry, always just a little bit sore. Even my mum pointed out: with her being so thin, it must be horrible being passed around, and moving against things... is it fair to expect her to suffer like that, in the hope that I will extend the number of days, months or years I have with her.

Like all of us, her days were decided long before she was born. And I have little control over that. And you know what? I don't WANT to feel responsible for her life or her death. All I know is that I have to think about how she is TODAY, and what I can do for HER... TODAY. As the scripture goes: "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own" (Matt 6:34)

I love Mikayla so very much, and there isn't a day that goes by that I don't wish I could change all of this. That I don't hope. That I don't dream. But all of this is what it is. And as a family, we have to keep on living... for today... and making the most of today. Because I know that no matter how long, or short, Mikayla is with us, there will be a time when she will no longer be... and I don't want to feel like it was my fault. I have enough to bear on my shoulders already.

So we booked the procedure for next Thursday (the 10th). The doctor tells us that there is a possibility that she is in for a couple of days- I suppose it just depends on how well she copes with everything.

I am scared. I am anxious. But I am also hopeful at the prospect of the good it may bring. And THAT'S what I am choosing to focus on.

The irony is, that we may have to delay the op, because she had been really unhappy the last few days, pulling her legs up like she's cramping, and she's had a very runny tummy. We took her stool in for a test, and she has "giardiasis", which caused by a parasite in her tummy. Very easy to catch. So as of yesterday, she's been on an antibiotic. Her runny tummy ceased almost immediately... but then last night... shew... what a VERY unhappy little girl. She was sort of grumpy in the evening, but not TOO bad... although we had resorted to giving her paracetemol (so bad enough, I guess)... but she wouldn't feed. She had probably only half of what she should be having.

At her 2:30am feed she drank almost her whole bottle, which was fantastic, but at 4:30am she woke up sobbing. I could barely console her.... but NOT cos of her tummy... she seemed to have a blocked nose, and was coughing and choking and spluttering.... it was really quite frantic! I tried everything to clear her nasal passage, and eventually the only way she would settle, was on my chest. I was up for probably an hour trying to calm her, and everytime I tried to put her down, she would cry.... Eventually she let me put her down, and then didn't wake again until 8:30am!!

Anyway, so the surgeon may postpone her surgery... I am waiting now to find out.

She's also been quite... I dunno... distant lately? I don't really know how to describe it... it's wierd. I am hoping that it's just cos of the infection.... but who knows?

Sometimes I have this uncontrollable urge to wrap my arms around her, and just squeeze her, as if somehow I could protect her from the harshness of the world.... a reality she has been so subjected to, and is so undeserving of. It's scares me, when I see how MANY children have had to suffer and continue to suffer at the hands of a fallen world... I like to think that there is an extra special place in Heaven JUST for these innocent beautiful little boys and girls who got the raw deal here on earth.