Friday, December 31, 2010

we have every reason to celebrate

Well, they were right.  Her face and head are tremendously swollen.  Her eyes are so swollen shut that her long eyelashes are hidden between the lids.  The right eye started swelling shut last night, and she woke up not being able to see out of either matter how hard she tried.  She was scared at first, moving her head back and forth, not knowing why she couldn't see the world around her.  We held her and comforted her and sang to her and fed her, and then she went back to sleep.  I expected her to be much more irritated with the situation, but she handled it very well. She slept for most of the day...something she never does.  I suppose she figured if she couldn't see what was going on she might as well sleep the time away.

Dr.Miller came in this morning and took her bandages off.  It's really a clean incision.  Small stitches in a large zig-zag line across the top of her head from one ear to the other.  So now I am grateful that he spends most of his work day doing nose jobs and boob jobs...he knows how to make things look good.  He said that we will see many lumps and indentations once the swelling goes down...and not to be alarmed when we do. Her little body will fill them in over time.   Aaron asked how he decides what her head should look like.  Dr. Miller said that he basically makes every sagittal stenosis head the same shape.  It works best with the bones that he has to work with, it accommodates brain growth, and it looks good.  So some day she might run into another craniokid that has exactly the same "Miller" model skull.  Her head is HUGE right now.  It looks like it weighs 10 pounds.  Judging from how hard it seems to be for Adeline to hold it up, it must be very heavy.  And uncomfortable. And itchy.  But she still looks soooo beautiful to me!  Our little sumo wrestler! I am sooooo grateful that I took the picture of her right when she got out of the O.R, before the swelling and bruising started.  Because I know that over time she will return to that comfortable, beautiful, sweet baby.

She doesn't babble really loud like usual, but instead makes little puppy noises that just melt your heart. She shakes and chews on her toys, even if she can't see them. She hasn't smiled yet, but I know it will come. I can't wait! 
A mommy of another "craniokid" that I met on an on-line support group stopped by to visit.  It is really neat that we have found someone so close going through the same thing at the same time.  Her son's surgery is scheduled for this Tuesday with Dr. Miller and Dr. Puccioni.  She was very anxious to get his surgery done sooner (they have been waiting since September), but I kid her that Adeline's surgery was just one more that the doctors have under their belt before they perform her son's.  It was great to meet her in person, she has been very kind and helpful to me, so I hope that I can return the favor.  She was telling me how it was hard to read my recent blog posts.  I don't know what would be better...being pretty much clueless (and not as worried) about what we were getting ourselves into post-op like we were, or knowing everything that could go wrong and being somewhat prepared.  I should have written a disclaimer before publishing those posts.

What a difference a day makes.  She had her last dose of I.V. antibiotics at 4:15 this afternoon.  They are keeping the I.V. in just in case, but besides that the lines that she hadn't already discontinued herself have been removed.  Other than a little fever and eating much less than what she normally does (she's keeping most of it down), from a medical standpoint she is in really good condition.  If the swelling starts to go down and no problems arise over night, she may be discharged TOMORROW!  YIKES! I was just getting used to labeling breast milk, weighing diapers, explaining what each poop looks like. I have been comforted by being able to look up at a monitor to make sure everything is O.K. and having someone come in when something doesn't look perfect or if I have a question.
I was talking to the nurse about how crazy it is that they would discharge Adeline so early and she told me that she would feel the same way if she was in the same situation. But there is nothing else that they need to do that we couldn't do at home.  She will be sent home with oral pain medication and oral antibiotics.  She just needs a clean, safe place to heal. And time and patience and and lots and lots of love.  I have that.  I just wish I also had a nurse call button.

Adeline gave the night shift staff a bottle of sparkling grape juice to help ring in the new year.  They certainly deserve it.  Everyone continues to be amazing.

We probably won't be awake at midnight this year...unless she wakes up to eat or needs more pain meds.  But we have every reason to celebrate.  When I look over at her sleeping comfortably in the middle of that big hospital crib, squeezing her blankie against her beautiful round face, the feeling I get is better than anything watching fireworks or drinking champagne can give me. It's gonna be a happy new year.

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