We lost our sweet boy last week. We knew from day 1 of his little life that he would need an open heart surgery to repair his heart. The cardiologist had planned on waiting until he was two but then decided sooner was better and we scheduled for August 5th. We went in at 6:30am, they took him back around 7:30 and said it would be about 8 hours. We did not hear a word all day until 6:45pm when I got a phone call from the nurse saying they would be moving him to PICU soon. The surgeons came out a little later and told us how great the surgery went and that he is on a temporary pacemaker but they hope within a week or so he won't need it. They said we could go back to see him in about 20 mins. I started calling to go back after the 20 mins and was told every time that he wasn't situated yet. After almost two hours we were getting very upset. Finally someone came out and told us that she couldn't tell us anything but that there were several doctors, nurses and surgeons in his room working on him and they would have someone that could talk to us come out soon. A little while later a nurse came out with a chapin and I don't remember what she said exactly as it's all a blur now but she explained that he flat lined and that they had to reopen his chest and were doing CPR. I know I called my mom, paced the halls, sat in the chair crying for a while and then a doctor came out. He was the on call cardiologist that was called in. He said they did CPR for over an hour and that he is now on an ECMO machine which is a machine that does the work of the heart when the heart can't. A little later the surgeon that performed the surgery came out and said that the good news is he is alive but the bad news is they are very concerned about his brain. She said by doing CPR for so long it is possible he sustained brain damage. At this point it was 12:45am and we just wanted to see him. She took us back. He was just laying there with so many tubes and wires. I cried and cried. His chest was open with just a clear sterile dressing. I slept a little in the chair next to his bed. Over the next few days he was stable. They had to go back in his chest twice, once to put another tube and again to stop some bleeding. He was heavily sedated and had to be while on ECMO. Once off ECMO they would come off the sedation some and he would respond a little. On Sunday afternoon the nurse showed some concern that his pupils were large and not responding to the light. Monday morning they woke me as they were taking him to get a CT scan. It showed some swelling and fluid but they said they were upping his sodium to help pull off the fluid. Throughout the day he didn't respond at all. They turned off the sedation meds off at 6:20pm and said he should respond within a couple hours. Nothing. Hours went by and he wasn't waking at all. They came in and hooked him back up to the EEG and I watched as she put the leads on one by one and on the screen the lines went flat one by one. I knew. The nurses called my friend Meredith who lived near by to come sit with me. Patrick had gone home for the day to take care of a couple things at work. They called him too. The doctor came in and explained that with the CPR and lack of oxygen they were afraid of this but as the week went by he was responding some but now with no response they believe he is brain dead. They said they will re-check in 12 hours and then again to be sure. I watched each test and he didn't respond to anything. During the day on Tuesday we got to hold him. A photographer came and photographed us with him. They came in and took his hand prints and foot prints and made a picture frame, a pillow case, and a canvas. I went numb. I had cried more than I've ever cried before. We had him baptized. Our families came. My Mom, Patrick's parents and Priscila all came in to see him. My Dad and sister couldn't come in. At 9:22pm on Tuesday night, August 12th he was pronounced brain dead. He was gone. We held him one more time and then left the hospital without him.
This is not real. I keep expecting to wake up and realize it was all a terrible dream. I miss him. On Friday, Patrick and I went to Wilmington and planned his funeral, and picked out his grave site. They kept asking questions and our answer was always 'I don't know'. We had never put one thought into funerals for our kids we expected them to bury us. That's how it's supposed to be not this way. On Saturday, 70-80 people showed up to his funeral. People I hadn't seen in years, all of our closest local friends, a lot of Marines, and a handful of our best friends from FL, and my Mom's friends from VA and KY. None of it felt real. Everyone kept hugging me and telling me how sorry they are. I couldn't cry. I was cried out I think and still very numb. I saw him laying there and that made me cry. I stood in one spot the whole visitation. I couldn't move. The service part was very short and then we got in our car and drove to the cemetery. It started storming and pouring rain as we arrived. This part also felt short and then everyone came through and hugged us again and said how sorry they were. I just wanted to leave.
It's been a week in a half since we left the hospital and 5 days since the funeral. I'm still numb but have to keep moving forward with life. We have three beautiful little girls that need a happy Mommy and Daddy. My parents are still here for another few days and we're trying our best to be ourselves and are trying to get back into life. For now I am keeping my mind and self busy with planning and projects. I function best when I'm busy.
This was the last photo we took with our little guy the night before surgery. I took photos throughout the week to document his journey so I could show him later in life. I had no idea at the time these would be the last photos I would have of him. So glad I took them!
I will most likely never understand why he was only with us for 11 months but I'm so glad he was.
A friend found this quote and I love it.
"Not all triplets walk side by side, sometimes one has wings to fly"
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