All About Audrey: Some Test Results

Yesterday was finally a day with some test results after much poking and prodding of our poor little girl. So far, Audrey has had a CT angiogram, a renal ultrasound, and another scan of her brain done. All these tests are somewhat standard tests which are done for babies with heart conditions, although the CT scan was a bit more involved as the procedure required anesthesia- always scary. The CT scan gives a very detailed, 3D image of her heart, and the other two scans are looking for potential issues with her kidneys and brain. The head scan and renal scan came back normal, so it appears all issues seem to be just with her heart.

The CT scan gave the cardiologists a good look at the structure and blood flow of her heart. Audrey has all of the typical conditions associated with Tetralogy of Fallot and then some. The narrowing of her pulmonary artery is pretty significant, however she is on a drug called Prostin right now which keeps blood being circulated to her lungs. After the CT scan, they also found another narrowing in her left pulmonary trunk along with an issue with one of the veins leading from her lungs to her heart; it is "structured" the wrong way and will need to be re-routed to the correct location. These two additional findings don't necessarily change what the doctors want to do as far as timing of surgeries go, but they are two additional things which will need to be fixed which the surgeon will have to think about.

We are fairly certain she will have her first surgery sometime next week. We are praying they won't have to use a bypass machine in this surgery, but is now a possibility due to the discovery of the narrowing in her left pulmonary trunk. We wont know any details until the surgeon talks with us though. I should mention a welcome victory that we had yesterday though- after 3 painful attempts, Audrey now has her PICC line in!! It is basically a more permanent line in which she in given her Prostin, and now her umbilical line has been removed. Now her little umbilical cord stump can continue to heal and leave her with a cute little belly button :)

Audrey, in the meantime, is enjoying her constant visitors between all 4 of her grandparents and her mom and dad. She is able to be held and fed (even breast fed-yay!!) by us which is something we weren't sure would be a possibility. She keeps eating more and more each day which means she is getting as strong as she can leading up to her first surgery. All of the RNs in the NICU have been absolutely amazing. They are teaching us so much as far has handling Audrey (and her many cords) in the NICU and have answered every question we've had about her. Sometimes I wonder how we would have taken care of her had we been able to take her home after the standard 3 days! I think we could figure it out though. As promised, we have some pictures to share, although we mostly just stare at her perfection and often forget to document her with photos and videos. We will try to be better about that!

We also just wanted to thank you all again for everyone's outpouring of support- it is absolutely amazing and extremely comforting during this time.

Much love,
Christie and Charlie

Audrey in her usual sleep mode :)