Out of ICU!

Ava is doing very well. They moved us to Moderate Care this morning. She is no longer in ICU, hooray! We continue to hope and pray for continued progress and no more steps backward. Things have been very busy as they have moved very quickly in the last 24 hours. Ava is now being fed 60 ccs every three hours by bottle and she seems to be tolerating it well. The Moderate Care nurse says she is “amazing” with her feeds. She is now on a regular flow oxygen cannula and has been weaned down to one-sixteenth of a liter. That’s almost nothing.

Yesterday was another emotional day as Ava was taken to the Cath lab to have a PICC line put in. This is a type of IV from her arm that can stay in for up to 3 months. She has an infection in the incision area from her heart surgery and will need to be on antibiotics for six weeks. They have taken out all of her other IV tubes. This PICC line will probably stay in when we come home and I will have to learn how to put her medication in through the IV.

Anyways, before they took her for the procedure they told me that they would also check out her left pulmonary artery which they originally believed would need a catheterization/ballooning in the next few weeks. The MRI showed that it was extremely narrow. Right before they took Ava one of the Cardiologists said that depending on the results of the catheterization she may actually need another bypass surgery to repair the narrow artery. In fact, he said they were leaning towards this type of surgery in the next few months. I, of course, was a mess thinking about going through this all over again so soon. I couldn’t even imagine it. Long story short, after 3 hours in the Cath lab, they were thrilled with the results. Her left pulmonary artery is not near as narrow as they believed it to be! There was also some moderate leaking of the aortic valve but they didn’t seem surprised by this. They seem very pleased with the results. In fact, Dr. Hirsh (Ava’s surgeon) believes she won’t need anything done to either of these problems until she comes back for a conduit replacement in 2 to 5 years. (The conduit is the artificial part that will need to be replaced as she grows.)

So, we are settling in to our new room. It made me very uneasy to be out of the ICU unit at first. However, I am much more involved with her care here. I can hold Ava whenever I want! This is such a thrill! I also feed her with a bottle every three hours and change all of her diapers (except at night because I still can’t stay the night in her room). I’ll probably even be able to bathe her daily. It’s awesome to do all of these things for her myself!

Brayden and Jamie will be here this evening and I’m so excited to see them! Thank you, Linda Timm, for sending books that Brayden and I can read together each night. Thank you second and fourth grade students at Howard for your cards and letters. Thank you so much to the PCTU unit (POD A) for all of the fabulous care you have given to Ava these last 5 weeks. Cheryl and daughters, thank you for the gift to Ava that she can look at when she is alert. Erin, thanks for the U of M shoes, they now fit great. Brenda Brown, call me next weekend when you’re here. I’d love for you to stop by and meet my sweet baby girl. Thank you Heather, Granny and Aunt Kathy for feeding my boys this week.

Troy Meek and family, you continue to be in my thoughts and prayers. I hope all went well at your IU consultation. Continue praying for Ava's health and healing, your prayers are working!