First Full Day

84 days old 

We spent the morning unpacking the last 12 weeks into our new space. It's amazing how many things you can collect over 12 weeks, and we even took 2 trips home to drop loads off! 

Then we headed to the hospital. RMH Philly has a free shuttle that you can take at any time of the day to get to the hospital. It is also about a 20 minute walk, which we are looking forward to doing when it isn't bitterly cold out. 

The CHOP cafeteria is very impressive. Nikko ordered a Philly cheesesteak and while it wasn't Pat or Gino's, it was pretty good! They also have a great coffee cart. I was super happy about that and had the most delicious caramel macchiato- definitely needed after the last few days! 

Gracie met with all her doctors. Genetics, pulmonology, plastics, neonatology, physical therapy all made their way to see her this morning. We missed them by just a few minutes but we were able to speak with neonatology later in the day. 

CHOP has made a few changes to her care- they have upped her feeds to 70ml over 45 minutes, discontinued one of her diuretics, and increased her flow to 5 liters. She previously was on 2, but they wanted to give her extra flow to hopefully bypass the tongue completely when breathing. We've noticed she is a lot less snorey than she was when breathing. I call her my little piggy because she is so loud when she is breathing.  

The biggest call of the day came from plastics. Dr Taylor, chief of plastic, reconstructive and oral surgery at CHOP, was able to visit Gracie bedside to do an assessment on her tongue. He feels that she is a perfect candidate for tongue reduction surgery and has scheduled her for Wednesday! 

Things are moving fast here, but he believes that most, if not all, of her respiratory struggles will be fixed with her tongue reconstruction. We are not especially looking forward to the surgery, as the recovery is intense and the babies are in a lot of pain, but we are very much looking forward to the results. Having Gracie be comfortable and safe are our top priorities, it just may take quite a while to get there. 

Gracie ended up being moved late in the day to a private room. Previously she was in a pod style room, but this is absolutely an upgrade! The NICU is incredibly large with pod style, private and double rooms. It will definitely be nice for post surgery to be in a private space. 

We are so thankful for the doctors here who deal with BWS babies on a regular basis. It is such a rare disease, but they see it everyday and know exactly what to do for our little girl. 

Yale got us here, and CHOP will get us home!