Parent Blog: Andrew Knapp
In their words
Hometown: Cedar Falls, Iowa
My wife’s water broke at home in Cedar Falls and we rushed to our local hospital and were then rushed to Iowa City to deliver. At 9:35 a.m. on May 11, our beautiful little peanut made her entrance. She was taken to the neonatal intensive care unit (NICU) about 10 minutes after being born. I followed her to the NICU where she would spend her first six hours of life until we were transferred to the pediatric cardiac intensive care unit (PCICU).
Kaeli was born with Tetralogy of Fallot and pulmonary atresia. Our daughter grew in the PCICU, and at 13 days old she had her first open heart surgery. She was about 2.7 kilos, so she wasn't quite big enough for her surgery but they had to do it. The surgical team reassured us that this was a routine Blalock-Taussig (BT) shunt surgery to help with getting blood flow to the lungs, so we didn't really expect any complications from this. She went to the operating room at 9 a.m. and we received updates for the first few hours but we didn't receive any around lunch time so we figured no news is good news.
We walked down the hallway to her room where we saw several people rushing in and out of her room. The pediatric fellow saw the distressed look on my face and rushed out to tell us that someone will be out to tell us what’s happening. Seconds later, one of the nurses came and told us the news that no parent wants to hear about their child: Somewhere between the operating room and her room, Kaeli developed a blood clot in her shunt and her condition deteriorated. Her care team was in the middle of opening her back up to take that shunt out and put in a more centralized shunt. The next sentences were a blur for me and my wife and hard to grasp: She told us that they don't know if Kaeli would make it and that they were doing everything they could to save her.
I lost all feeling in my body and just collapsed to my knees crying as my wife left to go tell our family what was happening. Soon after, a nurse practitioner pulled me and my wife into a vacant room and explained what happened and what was happening. Again, they said they didn’t know if she would survive.
They used lifesaving measures, including putting her on extracorporeal membrane oxygenation (ECMO). Finally, after hours passed, our daughter stabilized and we went to see her. I went back and what I saw looked like a war zone. I saw a tiny little girl fighting for her life and there was nothing I could do but watch and pray. Two hours later she started to deteriorate again, I looked at my wife and said we need to go. The same nurse practitioner came and took us back to where our family was and told us what was happening. Her cardio surgeons came and told us that they put her back on ECMO and basically said she's very sick.
Our daughter developed a small brain bleed and four seizures while on ECMO. She fought for four days and came off ECMO after which we began the slow recovery process.
Over the next few weeks she made strides to where they discharged us on June 29, 2018, and we went home to hopefully begin a normal life with our miracle. Unfortunately, we turned right back around on June 30, and Kaeli was readmitted to UI Stead Family Children’s Hospital where we would be until July 3.
We enjoyed the 4th of July morning at home but later that morning she started showing signs her shunt was closing off. We rushed her to our local hospital, and she was then rushed back to Iowa City where we were to stay until she underwent her next surgery. On August 14 my daughter had her full repair surgery which took 8.5 hours; we had flashbacks to her last surgery and were scared. This surgery was successful. They discovered two superior vena cava veins, which is rare. We spent the next weeks in recovery, which was complicated by difficulty coming off the ventilator and removing the medication that was keeping her temporarily paralyzed. She also developed an abnormally fast heart rhythm, supraventricular tachycardia, while being in the hospital.
We spent 123 days in the PCICU. When she was no longer critical, we got to move to the inpatient floor. The next few weeks she got better and 136 days after being born, we finally got to take her home. Kaeli will need three or four more open heart surgeries as she grows because the connection between her heart and lungs doesn't grow with her. Hopefully she'll be 2 to 4 years old before her next surgery.
I want to thank everyone who was a part of our care. Our daughter wouldn't be here without this hospital. From the nursing staff that comforted us in our moment of crisis to her doctors who saved her life and didn't give up on her, everyone made sure we were okay and explained everything that was happening. They celebrated milestones with us and we built relationships with the staff. It’s a family you don't want to be a part of but you can't imagine life without them. From being told our daughter will most likely not survive ECMO to telling us that you get to take her home, we can't thank each one of our nurses and doctors enough.