Baby Steps (Literally and Figuratively)

Today we had a follow-up appointment at Children’s Hospital. Both Matt and I feel sick to our stomachs every time we have to go back there. There is just so much unknown, plus the fact that twice in 2013 we went to a Doctor appointment and were admitted to the hospital for over 5 weeks… so I have a feeling we will be forever traumatized. Nevertheless, despite our fears… today’s appointment went really well!

Isla had an Echo and an EKG. Compared to her last appointment, her heart looks better… and the Doctor even said that it looks almost normal! He gave the okay to go from 24/7 Oxygen to night time only!!! That will make life so much easier… we won’t have to worry about this anymore:


He also said that we can stop one of her (many!) daily medications. It isn’t a PH med, but still, one less med works for us! He isn’t increasing her SubQ pump meds which essentially means he is decreasing the dosage since she is growing. He is hoping that she will be able to get off of the pump completely by the end of the year. Oh how amazing that would be! We are overjoyed with the news. We are holding onto hope that all of this will have a positive outcome. It just has to! Please continue to send well wishes Isla’s way. She isn’t out of the woods yet, but she is definitely heading in the right direction.

Here is Isla right after we took off her oxygen. She had an imprint from wearing a nasal cannula for the last 7 months and she even has a slight tan line. We are so used to seeing her with a nasal cannula, it’s like looking at someone who normally wears glasses that got contacts.



4 thoughts on “Baby Steps (Literally and Figuratively)

  1. Bill and I are so happy to hear this news. I have to be honest, he shed a tear or two. She is our miracle baby, and it’s thanks to all the loving care you and Matt provide that she is doing so well. You both should be very proud! Love you…..

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