Day 26

So I had a rush of blood to the brain today, and decided to phone a paediatric neurologist. I really just wanted to see if they could do something at this early stage to see how developed her brain was, and the extent of her damage- if any at all. I was told, via the secretary, that he would first have to do a consultation to establish whether he felt an MRI would be necessary- he would have to have something to look at/ find, in order to justify the MRI. I left the phone-call somewhat deflated. I decided that I would wait until we had Miks' 6-week check up with the paed, and let her look at Miks and we could take it from there. The irony is that a little after I had chatted with the neurologists rooms, my paed actually called me to see how things were.

How are things? How do I answer that question? How is Mikayla? Fine? Well? Breathing? Alive? I don't know how she is. I mean, she is all of those things, but she still has Edward's Syndrome. That's not going to change, unless by a miracle of healing. I am not saying that's not possible... and that I am not hoping for a miracle... I would love a healed daughter... but I also have to live with the reality that that's probably not going to happen. I asked throughout my pregnancy... EVERY SINGLE DAY (often a few times a day).... that God would heal her if she was sick (even when I was told she was "fine"), and she wasn't healed... I am afraid to say that to some degree I believe His purpose for Mikayla involves this disorder... whether I like that or not.

Anyway, the paed and I were chatting and I mentioned the neurologist, and just that I would like to KNOW how her brain is functioning... as I said yesterday, that won't necessarily bring me any kind of comfort either way... but it may give me a little more clarity. Anyway, the long and short of it, is that the paed just said that babies that "survive" T18 (i.e. live longer), are severely mentally handicapped... ALWAYS. Well, deflated doesn't come close to how I feel.

I live on a pendulum, swinging from grasping onto hope, to clinging in despair. And no answers. No goal to work towards. No closure.

While typing this, my boys went outside to chat to the neighbor's son... this is the bit of conversation I heard:

Neighbor: "hows the baby?"
Luke: "She's fine"
Neighbor: "She's cute, hey? I saw her at school today"

I took Miks with me to fetch the boys... the kids (and adults, actually) just love to hold her and touch her. *sigh*

Her sleeping wasn't great tonight. She is really battling to poo... poor little noo-noo.... she isn't constipated... she just seems to store it all in? And she gets grumpier and grumpier, until she gets it all out. I am sure it's just cos her gut is under developed. Although, perhaps it's just because I tend to look for the worst in everything?