Thursday, July 5, 2012

First 48


Cecilia's Heart:



 Two days ago my daughter was having open heart surgery, which means right now she has made it through the first 48.  That is a huge leap in the right direction to her recovery.  Daddy and I are back on shifts as of today.  I'll skip back in time to explain the experience.

I went to sleep after 3 and woke up at 5:30 surgery day.  We stayed with her until 8:30 am when they rolled her away.  I cant even begin to explain how that felt for Karl and I.  I went to visit a friend, Karen,  that was admitted for pre-term labor.  Her unborn daughter has HLHS too, and it was nice to talk to each other, both going through a scary moment, and she was in the same room I gave birth in.  They were able to stop labor.  It is far too soon for her daughter to be born so I will keep praying for them.  At 10:20 got the call that first incision was made.  As I was writing a letter to Cecilia, a woman started to play beautiful music on her harp.  It was so peaceful.  I thanked her when she was done.  She blessed me with 40 minutes of relaxation during a pretty impossible moment.  At 12:30 updated that she is on bypass and doing very well.  I think it was around 4:40 we were told her reconstruction is complete, and warming her up.  At 5:30ish, she is off bypass.  Karl and I booked a hotel down the street from the hospital and we drove home to get his inhaler.  We could not stay long, but we told the kids the good news that the doctors helped Cecilia's heart today and that's why we haven't been home.  We spent most of the day prior both of us at the hospital as well.  The girls were crying they missed us and it was hard to leave.  We left to go back to the hospital feeling just a lot of guilt and sadness...the surgeon came to speak to us and he said that this was the most challenging Norwood he has ever done because Cecilia's ascending aorta is about 1mm.  He said despite that, the surgery went perfect, but he had to let us know that studies have shown higher mortality in aortas under 2 mm.  He told us it would be at least a hour that we could enter the room when they transport her back.  So, we headed back to the elevators and as we were back in the main room with our favorite security guard, our baby rolled right next to us with her transport team.  We walked outside of the hospital to get a signal, and I just broke down and cried.  Higher mortality replayed in my head and after the most exhausting day of my life, I reached a huge breaking point.  I texted a woman who is deeply invested in connecting with HLHS families, and asked her if she knew any children thriving with an aorta around Cecilia's size.  If anyone could give me hope, it would not come from the doctors, it would come from warriors.  When we were able to join Cecilia she had a lot of doctors watching over her.    I got information later on and heard testimonies of several heart moms who said their children are doing good!  Now we have to make it through the night and really the first 48 hours.  This is the most critical time.  We stayed with her until the late hours, until we physically had nothing left.  We missed morning rounds, but were happy to hear nothing but positive updates.  Watching Cecilia heal by the minute, and the hour, is the most terrifying, yet amazing and miraculous experience of my life.  In the afternoon we still have not recovered from the exhaustion of yesterday, and so we made our way home for some overdue time with our girls.  It was also the 4th of July.  We had to do something for our other children.  We lit of some cheap fireworks in front of our home.  The consensus was "Boring" from the kids.  Luckily our neighbors get into the 4th, and we could turn around in a circle and see mortars.  Karl made his way back to the hospital to spend a few more hours with Cecilia especially since her night nurse this evening was someone we haven't met yet, and I was trying to get back into a pumping routine.  While I was looking at fireworks on the 4th, I was privately celebrating my fragile daughter making it through the first 24 hours. 

I got to the hospital at around 6:45am, this morning.    I knew there would be a lot of doctors during rounds because it is a teaching hospital.  I triple checked, and counted 17 of them in her room.  That was intense!  The whole time I was wishing I knew what the hell they were talking about.  Towards the end the surgeon said that Cecilia is doing better then expected.  In fact, she is doing so well that her chest could be closed today (yes that's right, her chest is open still but they cover it up so its not exposed).  However, since we are not past the first 48 yet, we will wait until tomorrow.  I know that she is having good kidney function.  I know that she suffered no bleeding in her brain, which happens sometimes because of the blood thinners she was on during bypass.  I know that her sats and blood pressure are on target, but her heart rate is high.  This is not a concern though, this is normal for this time frame (they say).  I watched her heart rate improve by the hour, and it is a relief.  Once her chest is closed they can take her paralytic off, and start to wean sedation.   When she is "breathing above the vent", she will be extubated.  When she is no longer in need of the vent, they will allow her to fully wake up, and we will be able to attempt feeding for the first time.  How soon this process happens to get from chest closed to feeding depends on Cecilia.  A lot of children with severe heart defects have feeding issues, especially post op.  I will be prepared for it if occurs, but I will be hopeful for her to do well.

Daddy is with our babe and she is still doing well.  Tomorrow is a big day for her and one step closer to being bedside to a baby that eats, cries, and moves.  One step closer to our family not being separated.  Sorry no pics this time, maybe tomorrow.