While Tyson was driving to Salt Lake with my Mom, I was riding with the life flight team. I was told that Elli's heart rate should be watched and should not go too far below 100 BPM. Often on the flight her heart rate was at 90, and then 85 --Then 80. It was a little overwhelming to watch it as she lay in the incubator, and I feared that she may not hold up.
Upon arriving at Primary Children's Medical Center I was told that Ellison had what was called Pulmonary Stenosis and that when a baby is in the womb there is a valve that is open and helps to pass oxygen through out the infants body. When the baby is born, that particular valve closes within 24 hrs to a weeks time. If Ellison's closed she would not be receiving enough oxygen, so she would need to be administered medication to insure that that valve did not close until she has had a procedure and/or a surgery to help her Pulmonary valve work correctly. They then explained that she would not be having surgery until the next day, but that they had chosen to life flight her due to the severity and that she would need to be up there in case things turned south and they needed to do an emergency surgery.
Pulmonary Stenosis for Ellison meant that her valve just wasn't created right. It was more of a tight dome and didn't flap correctly and wasn't passing enough oxygen. A typical person(s) valve flaps back and forth and pushes the blood through to create enough oxygen. Her valve would push the blood through and then the blood would leak and fall backwards which as a result the blood wasn't flowing correctly and she wasn't receiving enough oxygen.
It was a rough night that night and it was tough to wrap my mind around so much information so quickly. Tyson arrived that night late and my mom stayed at my brothers house - an hour drive away.
They sent us to a "sleep room"- which was a tiny room with a twin bed and a chair. We ended up sleeping for a few hours that night. I was beyond exhausted but it was nice to be able to have a private place to cry and pray.
The following day she had her procedure- exactly one hour after she was born. We were blessed because she did not have to have her chest cut into. They sent a catheter up her main artery near her groin and her right leg. There was a balloon that was connected to the catheter. When the catheter reached her pulmonary valve then they blew up the balloon in order to rip open the pulmonary valve in hopes of the valve to be ripped so much that it would heal correctly and flap more normal with less leakage.
When she was done with her surgery they said that it was successful and that they had to use the largest balloon they made because her condition was so severe. I was just grateful that they did not have to cut her open and that she did so great with her anesthesia and everything. It was a huge answer to our prayers. PCMC has some extraordinary doctors and nurses. She still currently has leakage (blood that flows the wrong direction) but it is much less than it was pre-surgery. One Doctor told us that before Elli's procedure her heart murmur was so loud that he was compare it to Niagara Falls, post surgery he said it sounds more like a bathtub running.
We were at PCMC for a total of 3 nights. My mom was was an enormous support in such a difficult time. My brother brought us dinner and visited us, and Tyson's family and my sister stepped up to take care of our boys. Everyone came together to assist us in caring for our family.
Ellison's heart will be watched for the rest of her life. She has doctors appointments with a cardiologist every 6 to 8 weeks for a year and then they will decide what do there after. Eventually we hope that she will only have to see a cardiologist once a year- but thats only if her heart stays stable. If it gets worse and the valve hardens than she will have to have another procedure or a surgery. She will never not be watched. She will have to see a Cardiologist for the rest of her life. We are totally okay with this. I am just happy that she is here and that Medicine and research has come so far that we are able to do a non-intrusive procedure that saves a child's life.
Thanks to everyone's love and support as we went through all of this. I couldn't have asked for better friends and family and I mean that with so much sincerity.