Wednesday, December 29, 2010


So last night's exhausted doesn't even compare to tonight's exhausted. But now I'm up, watching her every move, listening to her every breath, flinching with every sound the monitors make. I just laughed at the thought of a hidden camera in the room...they'd probably pull me out in a straight jacket.  My eyes keep darting back and forth and my head moves to look over at her at least every two seconds. She kicks her legs and yells every few minutes, just to make sure I'm paying attention. I think I may have all night to write.

Adeline started the day with the biggest bottle she has ever drank in her little life. It was like she knew she had to guzzle it down!  And really, she did wonderfully all morning. She was in a really good mood.  Of course, she was showered with attention.  We did anything and everything to keep her smiling.  I almost bought her a pony but Aaron wouldn't let me.
We arrived at Children's around noon. And were in the C.A.R.E.S. (surgery) unit by 12:30.  We had visits from many of the staff members that were going to be involved in the surgery.  They were all very reassuring and glad that Adeline was so healthy.  She gave us a little scare over the weekend - she had a low grade fever and sinus congestion.  But it was gone by Sunday evening, I think it was just teething.  I spent the entire past 4 days praying. Hard. And it worked.
We spent most of our time in pre-op waiting for the blood type and cross results to come back.  We spent a little time playing in the toy room, but things moved along pretty quickly.  She hated the needlestick, but the phlebotomist did an awesome job, and Adeline forgave her quickly. Dr. Puccioni came in and held her for a little while - she looked him over really good and then gave him a biiiig smile to let him know he was o.k.  Dr. Miller's resident came in and wrote his initials on the side of her forehead to let everyone know that she was the "right" baby for the procedure.  The anesthesiologist explained how she would give Adeline anesthesia through a mask first to put her to sleep before they started the I.V. lines and arterial line.  Then she would receive general anesthesia before they would intubate her and place her on her tummy with her chin in a special form that would allow the surgeons to have access to her entire skull.
It was hard to let her go when it was time for her to make the trip to the operating room.  But when the nurse defied hospital policy and carried her instead of making her ride on the gurney I was able to let go a little.  They took her to the O.R. at 2:30 and Aaron and I kissed that little oval head good bye with tears running down our cheeks.  We walked out into the waiting room and sat and held each other for a while.  It was completely out of our hands.  I held onto the rosary that Uncle Tim had given me the night before so tight that I broke it. A nurse came out to talk to us at about 3:30 to tell us that the procedure had begun and things were going well.  She came back at 4 to say they were still removing the skull, but everything was progressing nicely.  She came back again at 4:30 and things were still going smoothly.  They thought they had about an hour to go.  At about 5:10 I looked towards the O.R. and saw Dr. Puccioni and Dr. Miller walking towards us.  They both smiled and said they were finished.  Everything went great!  Dr. Puccioni said that they were surprised at how much pressure there was on her brain.  But he was able to remove her skull easily, so there were no complications, no transfusion was needed (except they did recycle her own blood), and the surgery went fairly quickly. Dr. Miller said that she does have a large opening where the sagittal suture was, but it will fill in on its own in time. I cried with relief and gave them both a big hug.  I thanked them for arranging surgery so quickly, and for doing such an extraordinary job.  I wonder if they really know how much something that they do routinely has influenced our lives.
Adeline was transferred up to the PICU around 6:00.  The nurses record her vitals at least once an hour and check on her frequently. Her hemoglobin is down to 7, but the PICU doc thinks she can handle it and doesn't want to give her a blood transfusion quite yet.  She looks like a porcelain doll - Except for the fact that she has lines coming of every limb - some have 2 or 3, she has monitors on her chest, a nasal cannula, and her head is wrapped in pink gauze and has a drain coming out of it.  Her O2 sats have been dropping into the 70s so she is on oxygen.  Her urine is a little cloudy and dark, but they have her on I.V. antibiotics anyway, so the doc isn't too concerned.  She gets morphine every two hours and Tylenol every four.  She is becoming increasingly aggitated as the night progresses, but that is normal.  The brain doesn't like to move.  Even though the pressure on her brain has decreased,  is very painful as it relaxes into its natural shape.  They just gave her an extra dose of morphine.  They are also going to give her some anti-nausea mediciation and then pedialyte.Her face is beginning to swell.  She is opening her eyes now but they are already pretty swollen. We are told they will probably be swollen shut by tomorrow.  But that is also normal and will go away on its own.
But God has given me the ability to look past all of the gauze and tape and nasal canula and I.V.s and tubes and see my beautiful ,sweet Adeline!
I just can't wait to hold her and cuddle her and kiss that perfectly round head!

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