Day 83

Well,the last 3 days haven't been great. Really, to put it quite bluntly, I've been a complete basket case!! :-) Have just been so emotional. I think it stems from the fact that Miks has been seemingly uncomfortable all the time. The pooing issue isn't resolving itself- and she either sleeps, or is UNHAPPY awake.

It's just soul-destroying loving her so much, but not being able to help her.

I got so over it all, that I ended up phoning another pediatrician (well known and older pediatrician, who I know has had years of experience, and by process of elimination, would definately have seen more cases than most of T18 babies). Anyway, after many tears, and going via my GP, I managed to get an appointment with him today.

I don't really know what I expected. It's not like her condition is fixable. And it's not like his knowledge will change anything. Really unlike me, I had a complete meltdown the minute he walked in the door. He was lovely. I am starting to cry just thinking about it. *sigh* I just sometimes wonder what the point of all of this is. It seems so cruel for Mikayla. And it's certainly not wonderful for me.... the prognosis is ultimately death. I guess that is all of our prognosis anyway, and at least I know where she will go, and that one day I will see her again- and then she'll be healthy, whole, happy. But for now- it just seems so, well, pointless. Don't take that the wrong way. I love Mikayla. Nothing changes that. But as she gets older, and is more alert, so her neurological functioning, or rather inability to function, causes her muscles and her little body in general to react more to it.This is what her irritability is caused by. He also said that the pooing (or her seeming discomfort from lack of) is again a neurological thing. Basically it causes her muscles to contract, and they working against each other causing little spasms- and when I give her a suppository, it basically causes these muscles to relax, which is why she will calm down almost instantly after a suppository. (I have probably explained it REALLY badly... but anyway!).

Lately, I just feel... I dunno... sad. Angry. Disappointed. Tired. For me. But mostly mostly for Mikayla. It's just wrong that she has to go through this. I don't want this for her. I NEVER would have wanted this for her had I known she had this condition. We went through my pregnancy in ignorant bliss, and therefore weren't able to make an informed decision when she was born. I want her to have quality of life. I mostly want to scream now. I am just.... I don't have words.... I ....

*sigh*...

Mikayla, I'm sorry my darling. I am so very very sorry. I am sorry I couldn't protect you. It was my job, and I failed you. I know this isn't my fault. I know I had no hand in this... and yet, somehow I failed you. I'm sorry. I am so very sorry.