September 11th brings so many memories to our country because of what happened 11 years ago but for me I have more than 1 bad memory of September 11th. 5 years ago on September 11th, our lives were forever changed when the NICU doctor walked into our room at 3:40 am to tell us that he thought our son may die. We knew he was in the NICU and needed a little help breathing because he was early and a boy but we had no idea that anything else was going on. We said goodnight to him around 11:30 pm and went to our room to get a little rest. I pumped around midnight and then we went to sleep. We were awoken by our door opening, light coming in from the hallway, a man we had never seen or met asking if he could turn on the light and at that minute, that very minute, I knew that my life was forever changed. I knew that the man walking in with disheveled hair, a wrinkled doctor coat, and a coffee in his hand was coming to tell me bad news. He proceeded to tell us, "I am Dr. so and so and I am afraid your son may die." That was it....those words will stay with me forever. I will never forget those words, my tears, and the way the breath was knocked straight out of me. I know after that he said words like Group B Strep, Life Flight, Le Bonheur, ECMO, very sick, but I can't remember a lot else except David crawling into the hospital bed with me and just holding me. The doctor said he had some other specialists coming in to check on his heart, brain, etc. but he was pretty confident that it was Group B Strep and if we didn't get him to Le Bonheur right away and on this special machine (ECMO) than we would lose him. He asked us to sign all these papers and that he would be back very soon. It felt like an eternity until he returned but really I don't think it was very long. At some point we called our parents and told them and then we went and stayed by his side as the Pedi Flight nurses worked to get him stable enough to transfer to Le Bonheur. We had to say our goodbyes because we weren't sure if we would ever see him again.
David went with Forrest and his parents followed closely behind. My parents went with me back to the hospital room to wait for my OB. I was leaving the hospital immediately whether my OB was ready for me to go or not. I look back and think how crazy it was that I left the hospital 14 hours after giving birth but I knew there was no where I was going to be but with my son. Thankfully my OB agreed and gave me medical permission to leave. My parents drove me to Le Bonheur and we had to call David to even know how to get there. I had no idea where the children's hospital was in Memphis because I never imagined I would need it. David gave me the news that they had gotten him on ECMO and that at the moment he was stable and thought he would still be alive when I got there.
My parents dropped me at the front entrance and found a wheelchair and my mom and I proceeded to get lost in the maze of the old hospital to get to the PICU. I remember the smell, the look, the semi darkness that the PICU lived in. I remember being hit with immediately that I wasn't supposed to be there. My son wasn't supposed to be there. I was supposed to be back at Germantown Methodist in newborn bliss, staring at my son in disbelief that he was here and napping when he napped. Not being wheeled next to my son who was on more than 15 different things being pumped into his body to keep him alive.
I was wheeled next to him and all I could do was hold his hand and stroke his head. Can you imagine...you are a brand new parent and you can't even hold your newborn. I could barely touch him because it was so much stress on his body for him to be touched. I remember asking what I could do and they said sing, read, and talk to him. So I started to do all 3 of these things as often as I could. One of the precious Child Life Specialists reminded me that he was a newborn though and if he was home with us he would be napping all the time and the last thing we would be doing is going in his room to sing and read to him while he was napping. Her telling me this was a great reminder and allowed me to realize that he needed his sleep more than anything else so his body could fight this infection. For hours upon hours we just sat by his side, watching him and praying.
That first day and the following 5 days were touch in go every minute...truly every minute and only by the grace of God did we survive. Everyone kept telling me to "lean on God" and all I could think is "I am falling on God and He is the only reason I am still standing".
September 11th brings back so many painful memories but memories I don't want to forget. September 11th and the next 54 days are what makes the Forrest Spence Fund and Parent Mentor Program at Le Bonheur what they are today. Our experience during those 55 days have helped mold us into the doctor and mentor we are and are constantly on our minds. I know without a doubt that my husband is a better doctor because of his experience with Forrest. He has a way with children and their parents and remembers all to well when we were given good news and bad news. I am so proud of the man and doctor he has become and am confident that all of this was part of God's ultimate plan.
I am also reminded every Thursday when I am sitting and talking with parents at Le Bonheur that our time at Le Bonheur was a painful but sweet time and with the help of God, family, friends, and staff at Le Bonheur, we survived it. I pray and hope that our lives and our children's lives will continue to be impacted and in turn impact others by the story of our son.