Day 2

Day 2:
What an incredibly busy day it was.  There is so much going on that things are already starting to become a blur, so I definitely need to get them jotted down.  Daddy stayed with Alyssa all night in her room and it was a fairly uneventful night.  He came down to get me the morning of Day 2 and the neonatologist and cardiologist had both already been in to check on Alyssa.  The neonatologist decided to cancel Alyssa's MRI because she decided the weakness by her mouth was very minimal.  Our cardiologist was not happy about this and called in the neurologist to consult on it.  Our cardiologist felt that the slight weakness was enough to outweigh any risks b/c then they could rule out any facial nerve palsy or other brain injury prior to her first open heart surgery.  He felt that with the research CHOP has been doing regarding the correlation between children with CHD's and brain injuries, an MRI would be beneficial in our situation to set a baseline of knowing whether or not Alyssa had a brain injury before or after surgery.  Here is a link to the research that CHOP has been doing.  http://www.chop.edu/service/cardiac-center/cardiac-center-research/brain-injury-newborns-chd.html

After the neurologist came up and spoke with us and did an examination on Alyssa, he decided that he agreed with the cardiologist in this case.  He commented that if it were a heart healthy child coming into the office to see him regarding the slight asymmetry of the mouth, we would not recommend an MRI but would rather suggest just waiting and watching it b/c even if there was a brain injury it would be minor.  But in Alyssa's case, since she is going in for a very complex heart surgery in a couple days he thought it best to rule out any brain injury that may cause problems during the surgery.  So the MRI was back on, we just had to wait on word of whether or not they could get her back on the schedule since they had already filled her 11am time slot.

Alyssa was able to have her MRI done a little after 1:30pm.  It was quite the feat getting all the medications, tubing and equipment down there and switched over so that she could get her MRI done.  Luckily she didn't require any sedation for the MRI b/c after they swaddled her all up, she fell right asleep and didn't move a muscle.  The best news of all came later that evening when the neurologist stopped back in to check on Alyssa and let us know that the MRI came back normal and Alyssa had no facial nerve palsy or other brain injury.  It appears to just be a weak muscle in her face causing the slight asymmetry in her mouth.

We were able to hold Alyssa more on Day 2 which was wonderful.  Nothing better than cuddling your newborn baby.  Her Aunt Jessica also got to hold her.  But with the busy day came some stress.  Alyssa had a few apnea spells and several desats in her oxygen levels.  Later in the evening our nicu nurse informed the neonatologist of all the desats she was having and the neonatologist decided to put Alyssa on a nose cannula with some oxygen to see if that would help with the desats in oxygen.  It seemed to help some, but she did have a couple spells throughout the night.

We also got to meet with Alyssa's cardiothoracic surgeon and his nurse today.  He went over the upcoming surgery with us and all the complications that can go along with it.  He also discussed with us the improvements that have been made since he started doing the Norwood.  We were happy to hear that 15 or so years ago when he and his team started doing the Norwood their survival rate was around 25% and now their teams survival rate on the Norwoods they perform is in the 90-95% range.  That was reassuring to hear even though he made it clear that complications can arise and that although they try their best to save every baby, sometimes that doesn't happen.  So on Monday, October 8th, our little girl will go in to have the most complex heart surgery you can have.  We have lots of faith in our surgeon and know that Alyssa will continue to show her spunk and be a little fighter.  At 7am that Monday our cardiothoracic surgeon will do a consult with a group of other doctors regarding Alyssa's case and surgery prep is set to begin at 7:30am.

All in all, we met with a social worker, neonatologist, cardiologist, neurologist and our cardiothoracic surgeon on Day 2.  It's no wonder Alyssa's oxygen levels were desatting so bad, we had an eventful day.