Updates

Connor is obviously still at MUSC.  We were originally told we would be able to leave Friday the 8th.  We were SO excited...the end was near.  They came Thursday to do a routine follow up echo (ultrasound) of his heart, since his first two didn't show a huge difference.  Connor had been off oxygen and was doing great, so they didn't think there would be anything too concerning.

We were at lunch when we got the call that the echo showed pulmonary hypertension...basically he was having to work too hard to get oxygen out.  It was a surprise to everyone because he had been doing SO well.  They decided to place Connor under an oxygen hood for an hour and do a repeat echo to see if there was a change.

Connor under his oxygen hood

Matt and I were with Connor when the ultrasound tech arrived.  She got everything set up and Dr. Atz, the cardiologist, came in to observe the ultrasound.  He watched and begin muttering to the resident who joined him and Matt and I had no idea what to think.  He came over and said that the echo looked great and was the best that we could hope for.  Basically the oxygen allowed the muscles to relax and we were able to kind of "trick them" into relaxing.  The goal is obviously for him to not go home on oxygen, especially considering he's already going home on an apnea monitor.  So, they gave him some medicine and he continues to be on medicine to help the hypertension.  The plan is for him to be under the oxygen hood as much as possible this weekend.  Monday, we will remove the oxygen hood for about an hour and do a repeat echo to see if it has improved even more.  If so, we likely won't have to go home on oxygen, but if not, we will.  Everyone seems to think we will definitely be going home Monday, but Matt and I have heard that before and it is absolutely crushing to find out you won't be going home that day.  So Matt and I are trying not to get too excited about a possible homecoming on Monday.  Especially considering we were less than 24 hours from taking him home when we found out about this.  

Connor is continuing to do really well and man can this boy eat!  The past two days he has gained 3 oz. each day!  He is now 5 pounds 13 ounces, just 1 ounce away from being a whole pound heavier!  Matt and I are so excited to begin our journey with him at home and appreciate everyone's thoughts and prayers during this time.  Here are some recent pictures of our little snuggle bug:

This kid can move his head!

Someone may have been a little fussy during this picture...