Beautiful Disaster

Before my update on Callie, I'd like to ask everyone to keep a family in their prayers... Today my heart is broken for a friend of mine. We've never met. But her little girl has had more influence on me and many others in her short life than anyone else I know, and for that, we give thanks. This mommy and baby had the same surgery as we did, but her little one ended up being born at 25 weeks. She went against all the odds and fought so hard. She defied everything her doctors said. Again, this newborn little lady showed me that anything is possible. It was such sad news to hear this morning that she had given in to her respiratory complications and went to dance in heaven. So although I don't know her mommy personally, I love her and her family so much, and I know that I and all the other mothers and fathers on the fetal surgery facebook thank you for sharing such an awesome inspirational human being with us. Please know that you've got more prayers coming your way than ever before. Be at peace little angel.


Now...

I am a bad mom... Actually I know I'm a good mom, but I feel like a bad one today. Callista had her g-tube surgery today. And I hate it... It's ugly. It's much larger than the example they showed me. My baby's poor little belly has a gigantic tube sticking out of it. And they told me it was easily hidden under clothes. That's a lie unless something massive changes. I know, it's shallow, but this is my pretty baby.. And this is not pretty. It just makes me sad because she's been through more than enough already. After six weeks they'll consider putting a "button" in place of the tube. Maybe then I'll feel better about it, but right now I just don't even want to look at it. So yes, I feel like a bad mom.

The tube will be worth it though if we get to come home. It'll be eight weeks Sunday. And that's eight weeks too long. We've been told that as long as she's medically able, as soon as our medicaid waiver is in place and she handles the g-tube well, we will get to come home. The bad news about all this is that a medicaid waiver could take two weeks... or six weeks.. or however long it takes. So they've prepped us by the fact that she may be medically ready to go home long before she is actually allowed to go home. The medicaid waiver would give us a nurse to stay with her during the evening so we can sleep while they watch the monitor to make sure she doesn't need suctioned. Otherwise you know I'd be there staring at her, afraid to go to sleep.

One of these days I'll find the time or the energy or both to finish her room and give the upstairs a thorough cleaning. Until then, we just keep the door closed so I don't have to look at it! There is a crib in there, and it is painted, but wow it's a disaster. That is life, a beautiful disaster.  But we're making it.