The day we found out that our baby was going to be born with such a severe defect that surgery was necessary to sustain life was a very painful day. We sat in the doctor’s office listening to the next steps of getting an appointment at the Advanced Fetal Center for an echocardiogram that would determine how severe the defect was while trying to process the information we had been given 30 minutes prior. My husband made the call and we had an appointment for the next day at one of the top pediatric cardiology centers in the world. Not just the US…the world.
We met Dr. Levine on March 6 and began one of many trips to BCH. As we went through the pregnancy we would reassure ourselves that we were at one of the top hospitals and that the outcome would be good. Of course, I would have moments of sheer panic when I would think about what this surgery would mean for all of us. We would be separated from our two daughters. How long would I need to be out on leave for? Would I even be able to keep my job? What if something awful happens? Would I be able to get through if something happened?
The road to BCH became more familiar every time we had to go in. First we had the echocardiograms.Then we met the surgeon who was going to save her life. After another appointment we had a tour of the Cardiac Intensive Care Unit where we were to spend her first week of life. Total number of days we stayed at BCH after the first surgery was 22: 7 days in the CICU and 15 days on the floor. We had many more appointments after she was born, starting in Cardiology clinic, moving to gastroentralogy, and landing in Neurology for the cardio-neurology program. We also traveled for minor emergencies and feeding issues. Every time we were inpatient the nurses and medical staff went above and beyond to make our experience as comfortable as possible.
During the holidays last year we were inpatient. Right before Christmas as a matter of fact. We were given a pass to attend a shopping event that would take place at the hospital for families who couldn’t get out to shop. We didn’t have to pay and there was even a gift wrapping station! We were able to attend the Boston Pops Holiday concert that Keith Lockehart conducted in the Family Entertainment Center. Santa came to visit, and the nurses gave us little christmas trees to decorate if we wanted to.
During rounds I would be told by various attendings that Isabelle looked amazing. One doctor even said to me that the repair done on her heart was ‘perfect’, which is why she is doing so well. I can’t imagine if we didn’t have access to the doctors we have or the surgeons who have made her well-being possible. I know when I read other peoples’ posts about the hospitals their children are in, there are times I thank God we are where we are.
I will never forget one day during Isabelle’s stay in the CICU after her first open-heart surgery, and the hospital clowns came by to visit. She was sleeping in the isolate hooked up to a ventilator, monitors and numerous IVs. They played the most beautiful song to her, and even though I can’t remember what the song was, to this day when I think about that moment I have tears in my eyes. At that moment, they were singing softly, playing the ukelele, as if she were just another baby in a crib. I stood by where her head was stroking her hair. It is a moment I will never forget and there were many other moments like that but none have impacted me the way that one has.
After we were discharged after her second surgery a strange lump appeared on her incision. It became angry, red and full of god-only-knows-what. I took a picture with my phone and sent it to the cardiologist who immediately called me. “You need to head to the ER right now.” I am never crazy about the ER. I feel like it takes forever to get out of there. This time was no exception and I was at a breaking point due to being scheduled to fly out for a conference that weekend and knowing that I had to be at the office in 4 hours. I was a mess. The nurse went out of her way to get us a bed. They listened to me rant and handed me a pillow. It was not one of my finer moments but when I did come back, no one said anything other than it was nice to see me.
Perfect repair. Human touch. Beyond excellent medical care. These are some of the reasons why I chose to participate in Miles to Miracles as our official charity this year. I want to raise as much money as possible for the center that saved our daughter’s life and blessed us with such an amazing little girl. I can’t keep her from getting into things like every other toddler. She constantly disappears on me. I usually find her either in the bathroom trying to get into the tub or doing her usual stairs workout. And she is hardly out of breath. Hardly. Out of. Breath. It’s almost like she has no idea that she only has half of a heart.
I owe this all to Boston Children’s. I am so grateful we had access to the best care possible. Chris is grateful they never incarcerated me when I would have my Mama Bear moments. I knew how incredible the hospital was before when Liz was treated for her infected cyst years ago. Seeing what they have done for Isabelle just renders me speechless.