October 9th should have been a day of celebration. It was our 8 year wedding anniversary and we had hoped to be celebrating a successful Norwood operation and the start of a road to recovery for our little girl. Instead we were faced with the worst outcome any parent could ever imagine. We were faced with having to give the doctors the okay to shut off the ECMO life support for our sweet Alyssa.
Thinking back:
October 8th was supposed to be Alyssa's Norwood day. The first of three open heart surgeries that she needed in order to live. The Norwood is the most complex and highest risk procedure in
the series of staged reconstruction for Hypoplastic Left Heart
Syndrome. We hoped and prayed for a successful surgery and to be able to hold our baby again and keep her healthy as she worked her way towards surgery number 2. If she could make it to her second surgery, we knew the chances of survival increased greatly. Sadly our baby girl was meant for bigger things. God had a different plan for our little peanut.
It is so hard to think that our baby girl should be 4 months old today. We continue to deal with our emotions regarding her diagnosis and death on a daily basis. Each day is different, a range of emotions so big that sometimes you don't know which one to focus on. With each new fact we learn about our daughter's diagnosis and her care, comes more questions. Questions that more than likely we will never have an answer to.
On the morning of October 9th, we had avoided going down the the ECMO procedure room early in the morning. We hoped and prayed that during the night there would have been a miracle that could bring our baby back to us with all her organs working. We were in denial and feared the reality of what the day would bring. We never got a call in the middle of the night, so we knew she was still alive, but we had heavy hearts of what we would walk into that morning. When we left her at 11pm the night before, the nurse working on her had such sadness in her eyes.
My mother in law works at the hospital and has worked with some of the doctors and nurses that were caring for Alyssa. When she got to work that day, she went straight to the ECMO procedure room to see if there had been any progress. She was still in denial as well even after seeing that Alyssa had made no progress throughout the night. After speaking with the doctors, she came up to our Ronald McDonald house room and shared with us the news that we had been dreading. She said that she asked the surgeon that if a miracle happened and her organs started responding, could he fix her heart. And our surgeon, one that she has worked with in the past and has always known that he never gives up and will try anything before he says there is no more hope....he looked at her and said "We aren't going to get that chance." (referring to her heart) They knew that morning that there was nothing more that they could do for our sweet Alyssa, they were just waiting for my husband and I to come back to the procedure room to discuss Alyssa's condition with us and suggest to us the removal of life support.
Before my mother in law came to our room, I had just gotten done pumping. I already had so much milk coming in and with each pumping session, all I could do was wonder whether or not my baby would every be able to taste her mother's milk. And then my mother in law came into the room and confirmed my worst fear, our baby was slipping away. All the doctors and nurses were to the point that they were just pumping Alyssa full of fluids to basically keep her alive long enough for us to see her once more and say our goodbyes. My world crumbled around me as I fell to the floor in sobs. How does one function with the knowledge that they will have to say goodbye to one of their children. It's not natural and feels so cruel. I felt like I was on autopilot. Nothing made sense, this could not be happening, but it was. My mother in law had already called my mom and she was on her way to the hospital. Our oldest daughter was on a school field trip and our son was at our house with grandpa. The world was still going on around us, but our world was crumbling. Once my mom arrived, Chris and I went to see Alyssa with our moms. We both clung to our own moms in despair as we looked at our little girl lifeless hooked up to what felt like hundreds of wires, tubes and machines. All the doctors were giving us tidbits of information about the lack of progress that had been made. It's hard to remember what each person said, I just remember hearing certain phrases: No urine output, kidneys aren't working, liver enlarged, pupils fixed and dilated, no brain activity, mottled limbs, couldn't get pressures where they needed to be, not sure what caused her to vasodilate, cause of cardiac arrest unknown but possible allergic reaction to dye used in the cath. So many things were thrown at us, but the one that hurts the worst is all the doctors saying to us that there is nothing more they can do for our sweet baby. Her body is no longer showing any signs of life and they suggest the removal of life support. Even knowing that our daughter's condition was critical from the very beginning, even knowing that there was a fairly large risk of death prior to the completion of all 3 surgeries, still NOTHING prepares you for a doctor telling you that your child is going to die. NOTHING! One of the cardiologists even asked when we thought we'd unhook the ECMO. I told them I needed time for family to arrive. I still find it strange that they wanted a time frame and when we told them about an hour he made it seems like that was to long. I don't know if it was b/c Alyssa's body was letting go quickly, even on ECMO, or b/c he just didn't see the point in having the medical staff continue to work on her when they knew the outcome was not life. I choose to believe that it was the first reason.
In those moments after the doctors gave us the dreaded news, I remember crying to my mom that I needed Joe. Joe is my oldest brother. I wasn't crying for him just b/c I wanted his support, I was crying for him b/c he's a funeral director. And I knew that if I had to let my baby go that I only wanted one person taking care of her and that was my brother. We are blessed to be from a small town and we know the family that runs the funeral home where are daughter would have her service. My brother does not work for their funeral home, but they still let him help as much as possible b/c that was my wishes. I didn't realize at the time how hard this task was going to be on my brother, all I could think about was my baby girl and how in all of her final moments spent here on Earth, I wanted them to be with family. My brother was the one that picked our sweet baby up from the hospital after her autopsy (more on that later). I found out later that my mom also went with my brother to pick up our sweet Alyssa. Our precious baby rode all the way to the funeral home in grandma's arms. I can't thank them enough for what they did for me and the piece of mind it gave me to have them with her in those moments.
Now backtracking to when we said good-bye. Some of the moments I'll keep to myself, as they are precious to me. Chris and I walked the dreaded hallway to the ECMO procedure room where our sweet baby lay a little after 1pm. We had decided that Alyssa would be placed in my arms after being removed from ECMO and we could hold her as long as we wanted. The staff got us chairs and spoke briefly with us prior to starting the process of removing ECMO. There were so many wires and tubes that had to be cut and clamped prior to them placing her in our arms. They were working quickly as her blood pressure was dropping fast and they wanted to get her into our arms as soon as possible. These are the moments I'll keep to myself. Our sweet Alyssa passed away in my arms at the same hour and minute of her birth. 1:40pm. She was exactly 5 days old.
After she was gone, we decided to have the nurses clean her up and bring her into another room where are family was waiting. So many people never got to meet our sweet baby girl b/c of the fear of her getting sick prior to her Norwood, so we wanted to give them a chance to see her. When Chris and I got to the room, I was overwhelmed to see that all 8 of my brothers and sisters were there. Also there were my mom, dad and step dad and Chris's mom, one of his sisters and my OB. Those last moments with Alyssa shared with loved ones is something I'll never forget. I had my computer with me and played Matt Hammitt's song "All of Me". He also has a child with HLHS and he wrote the song for his son. As I sat there loving on my baby and saying my last goodbyes, my breasts were hard as a rock and hurt so bad. I hadn't pumped since 7 that morning. It was a painful reminder that even though my heart knows that my baby is no longer with us, my body does not and it continues to provide for our newborn baby despite her departure from this Earth.
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