On October 7th at 5 in the morning, we left for the hospital. Paul’s dad and step mom came to visit and were able to stay with us the entire time. It was so great having family there for support 🙂 At around 6:30 AM, Lilly was called into pre-op and Paul and I were able to go back with her while they took vitals. At 7:30 AM they took her away from us.
Lilly’s surgery was to fix two problems: The first was her Ventricular Septal Defect (VSD) and then she also had the aorta coarctation. The aorta coarctation (or “coarc”, as the doctors and nurses called it) was the first thing that was fixed because the surgeon did not need Lilly’s heart to be stopped to fix it.
To fix the coarctation, the surgeon cut out the thin part of Lilly’s aorta and then sewed the two sides back together. Since the aorta is so high in Lilly’s chest, the incision that was made had to start higher than it normally would have to accommodate this. I was assured, however, that they would do a plastic surgery closure at the end and the scare would be nice and thin.
It is very common for babies with aorta coarctations to also have a bicuspid aortic valve. This means that two of the three leaves of her valve are fused together. Luckily, this doesn’t usually cause any problems and, if it does, it won’t be until Lilly is well into her 40s or 50s. This is just something that we will have to watch out for, but we don’t need to stress.
Once the aorta was sewed back together, it was time for the VSD repair. Lilly was placed on a heart and lung machine to continue blood circulation and then she was given a potassium and electrolyte solution through her IV that stunned her heart to stop it from beating.
To fix the VSD, the surgeon sewed in a patch made of bovine pericardium to cover the hole. I joked with Lilly during her pre-op appointment that she was going to have a piece of cow in her :p While the surgeon was in there, he noticed that Lilly’s PFO (a flap that all babies have that normally closes soon after birth) was still open so he threw a stitch in it to close it up.
My emotions this week have been all over the place. I went from feeling completely normal to crying to flying into a rage because the nurse practitioner wouldn’t check her airway when Lilly was breathing perfectly normally. I felt like I needed to be fine for everyone else and that only made me feel crazy. Luckily, my husband has been a rock through all of this. I don’t know how I would have gotten through this week without him.
Lilly was such a little rockstar through everything. She was supposed to be in the ICU for 4-5 days and was able to move into a regular room in just 18 hours. I’m so proud of her! She is now at home and back to her regular, adorable self. She’s smiling and kicking as if nothing even happened.
The only issue that we are having to deal with from her surgery is that, Lilly’s left vocal cord isn’t moving. Fortunately the right one is making up the difference (the human body is amazing) and she is eating normally but, the sound and the tone of her voice has changed. Her voice is softer and a little hoarse. There is a very big chance that her left vocal cord will heal on its own but, if it is still an issue by the time she’s one, she’ll need intervention. I’m choosing to remain positive about this. Lilly will be just fine 🙂
My little girl is such a trooper! She’s a fighter just like her mama and I am so proud of my angel. My husband, who is watching as I type this, would like me to add how proud he is of his little girl.