Day 4

Mikayla has all the pipes out! No feeding pipes! No oxygen pipes! Nothing!! Such a very clever clever girl!!
We went in about 8h30 this morning, and spent the morning in NICU with Mikayla. We fed her her bottle. Finished the whole thing- really slurked it down! She is such a calm little baby.... but I have to confess that I love hearing her cry. It somehow makes her more normal. The paed has said that she is happy that we simply feed Miks formula, as it's important I keep my strength up. I sometimes wonder why. I mean, whats the point.... ? I feel like just quitting most of all. It's all too exhausting!
They did a scan of Miks' spine today. The paed was worried that one of her vertebra was fused. But it looks fine, apparently. They were also concerned that she was perhaps jaundice- but her levels were fine when tested.... clever little girl!!
They have moved her into a crib, instead of under the lights.... and she even has her first little outfit on. It is completely huge on her.... but it's the first outfit I ever bought for her- it says "Sweet Little Girl" on the front... which is exactly what she is.
I look at her: she has the most beautiful little sweet face. Tiny perfect nose, with rosy little lips. She is like a little pixie... all perfect. And yet... it's there... the reality that she is not quite normal. That she isn't exactly like other newborns.
Everyone keeps telling me that there is a plan for her. That God has a purpose in giving her to us. That she was pre-destined. And while I appreciate the kind words, I also find it terribly cruel that she would be given only half a chance. That she would have to be the baby that would have to fight for everything. Why Mikayla? What did SHE deserve to be the child to fight this? And fight, she does! I love her so very very much. And I just cannot understand why this happened to her. Why this happened to us. I keep thinking that we've put the wrong dvd in the slot. I keep wanting to hit the stop button. The eject button, and put in the right dvd. The dvd of my life. The dvd that plays with the little girl with pigtails running in my garden. the perfect baby girl that her brothers will dote over. The teenager whos brothers will make sure no boy ever hurts her. The little girl who will throw her arms around her daddy's neck and tell him how much she loves him- right up until the day he walks her down the aisle on her wedding day.
Will Mikayla even experience one of those realities???
There are, of course, so many unknown variables at this stage. The first of which is whether or not she does actually have Trisomy 18. The abnormalities point in that direction, but we will only know once the genetic probe comes back... hopefully on Thursday. The waiting game is killing me. I like to know the facts. I like to know details of whats going to happen and when. This time we have with Mikayla is not like that though. It's a "one moment at a time" game. And its frustrating.
How am I feeling?
Still very very raw.
I can literally, PHYSICALLY feel my heart breaking... 10.... 20 times a day. I feel like a failure. I have failed Mikayla. I have failed Russell. I have failed Luke. I have failed Josh. I HAVE FAILED MIKAYLA!! Was it my selfishness that made her this way? I so desired a baby girl.... I have longed for her for all my life. Is this so that I learn my lesson to not WANT so much??
And the boys.... I am a wreck. I am not functioning well. They need a strong stable mother.... and I am not giving them that. The boys deserve more than that!
I keep thinking... no... hoping.... that I will wake up, and this will all be a dream. That she'll be fine. Just like we had hoped.
It's not right. This isn't RIGHT! I am feeling so helpless! I am her mother. I should have protected her.
I am so very very sorry, Miks. You deserve so much more. You are beautiful. I am madly in love with you. But you deserved a better chance that this! I am so very very very very very very sorry!