Fixing a Broken Heart

Gavin is fifteen days old today.  And we were told today that he will have to go in for open heart surgery in three days.

He has done well with his stomach surgery.  The GI contrast study showed everything is now functioning as it should, and Gavin is doing well with receiving milk through a feeding tube.  However, since surgery, he has really been having a tough time maintaining healthy oxygen saturation levels.  This is directly related to his Tetralogy of Fallot, and the fact that his heart is not able to efficiently pump oxygen to his lungs or the rest of his body.  Ideally, his saturation levels would stay in the 80s or 90s.  Initially, Gavin would drop into the 60s when he was agitated.  Now, the norm for him is more the 50s and 40s, and he is still dropping that low while on 100% oxygen.  A few days ago, Gavin hit the 20s and stayed between the 20s and 30s for more than 15 minutes even with aggressive intervention.  Usually, babies with TOF turn blue when their oxygen levels drop, but Gavin hasn't really turned blue except for when he hit the 20s.  He does, however, become extremely unresponsive.  His heart rate dropped into the 80s, his oxygen levels were in the 20s, he wasn't coming up with an oxygen mask on and a team of doctors and nurses spent more than two hours trying to get him back to stable levels.  Chris and I were allowed to remain in the room the entire time.  We are so grateful for the team at Duke and we have great confidence in the care that they provide.  But that was the single most terrifying moment of my life.  Since that episode, Gavin has been on sedation medication off and on, because when he gets agitated, his vitals drop to critical levels.  He gets agitated every time he is unbundled and every time his diaper is changed.  He just like to be swaddled up and left alone.  He does much better when he's being held though.  He is such a cuddler.

The doctors have also been keeping Gavin on 100% oxygen as well as a medication that is forcing a valve in his heart to stay open until he has surgery.  They tried to put him on a beta blocker today that would slow down his heart rate and allow his heart to fill longer with the oxygen rich blood in an attempt to reduce the amount of times his oxygen levels drop so that he could come off of the sedation medication.  That was started around noon today.  We were told that if that worked well, his heart surgery may be in two weeks, possibly longer if he could be stabilized.  They didn't want to do the surgery any sooner, because he's only one week out from his stomach surgery, he has only been taking milk for two days so he hasn't really had a lot of time to absorb that nutrition, and he's only 5 lbs 7 oz. 

We still aren't sure whether or not Chris has to leave Monday as originally scheduled.  Hopefully, we'll have an answer that he can stay by Sunday. 

We will update as we find out more, but this weekend our focus will be spending time with Gavin and as a family before his surgery so please forgive us if we don't return texts or calls for a few days.  Please continue to lift our little warrior in prayer and thank you all for your love and support.