First Heart Procedure

It’s Saturday morning and I am sitting here in Baby Lilly’s hospital room. We had a very eventful and emotional day yesterday. Grandma, Grandpa, and Auntie Jeri and I arrived at the hospital at 6am Friday morning. I was very anxious to hold Lilly before she went into her procedure. It was the hardest thing when they came into the room and told me it was time to go downstairs. I struggled letting them take Lilly but knew this is what we needed to do to help her. We were able to walk with Lilly up into Cath Lab doors. When they told us where to go to wait my heart sank as I walked away from my baby. Josh joined me at the hospital about 3 hours into the waiting process. The procedure was to take 3 hours but ended up taking 5 hours. The good news is they got some pictures of Lilly’s heart and ballooned her aorta valve. We spoke with the doctor and he said everything went pretty well. Unfortunately they had to put her on a ventilator to help her breathing during the procedure. Although I knew she would come out of surgery with a breathing tube actually seeing her with it was enough to break my heart. Lilly did wonderful all day Friday and they began to wean her off of the ventilator. They told us she probably would not wake up till Saturday afternoon but she was squirming around by late afternoon. Unfortunately towards the evening she struggled to keep her blood pressure stable. After a review of her blood gases they decided we need to give her blood to help stabilize her blood pressure. Lilly also got an ecco cardiogram where they check to see if there was any fluid on the heart and to see if the valve was staying open. They said everything looked great and hopefully the valve would stay open once she started moving around more. It just another wait and see game.

When I arrived this morning Lilly’s blood gases looked great and they have started to wean her off the ventilator again. They have removed the belly button line and also the PIK line. She is receiving her meds through a line that they have put in her leg. Right now she is sleeping with her ant eater beanie baby. So cute.

On Tuesday the medical team will discuss the pictures and measurements they took during the Cath Lab. We are hoping that they will tell us our next step either sometime Tuesday or Wednesday.

Thank you so much for all the support we have received. We are so grateful for everything everybody has done for our family. Thank you for the prayers and fasting that many people have done for our family.