Along with Charlotte's change in breathing assistance, Saturday also brought my discharge. I was able to spend a hour with her while she was getting the hang of the CPAP, but had to leave before the doctors were able to test her on it. While I was gone, Sam & his mom stayed with Charlotte. My discharge felt like it took forever because all I wanted to do was get back to hold my little girl's hand, but when I finally got back up to the NICU, I felt like I was living my worst nightmare. In short, Charlotte had stopped breathing on the CPAP and had to be intibated again after turning blue and hearing her heart monitor drop to almost nothing. It felt like eternity before we saw life come back to her, but once it did, we all could breathe again ourselves, even though we knew this didn't mean good news for Charlotte.
The neonatologist explained to us what had happened with Charlotte and said they would continue to try anything we wanted, but that Charlotte's breathing troubles appeared to be mechanical and wouldn't improve over time, due to her diagnosis. Our world came crashing down in an instant, but we decided to take some time to think about things and shower our little girl with all the love we had. And that night, Sam got his first chance to hold Charlotte and I fell in love with him all over again.
For the next several days, we took every opportunity to hold & love on Charlotte that we were given. We also had a couple more meetings with different doctors and staff who work in the NICU, but we were still trying to process our own thoughts and the only thing we knew was that we needed to have all of our family & close friends come meet Charlotte before it was too late. And almost immediately, everyone dropped everything they had going on and came to be with us.
December 19th was not only our original due date and Charlotte's one week birthday, but it was also the day we came to a decision regarding next steps for Charlotte. The neonatologist told us about another breathing assistance measure, which we decided that we would try on Friday. But along with this decision, we also made the hardest decision of our lives - we would not re-intibate her if this breathing measure was to fail. Some may think we were giving up hope, but Charlotte had spent her whole (short) life being poked, prodded, and with tubes down her throat, all while being one of the most content babies I've ever seen, but when she cried and we couldn't hear a sound, that's when we knew her quality of life would never be what it should be and it wasn't fair to keep making her suffer.
There are no words to describe our feelings surrounding this decision. Not only were we sad & angry that our baby girl was most likely being taken from us way too soon, but Charlotte also brought us so much joy & happiness in only a short time. Praying was all we could do and ask of people. Of course we asked for a miracle, as we had been doing for the previous five months, but we knew that God already knew her future and if He had others plans, He would make them happen.
Friday seemed to arrive before we knew it. We spent the morning talking to Charlotte as we usually did and told her the same things we had been telling her her whole life - how much we love her and how much God loves her. Then the neonatologist, nurse, and respiratory therapist came to switch Charlotte's breathing measure and we finally were able to see our beautiful baby girl's entire face without all the tubes we had become used to. In preparation that this might be our last day with Charlotte, my SIL arranged for a photographer from Now I Lay Me Down To Sleep to come take some family photos for us. Shortly after the photographer left, we realized that Charlotte's breath wasn't as strong as it once was and the neonatologist confirmed that the breathing measure wasn't working as we had hoped. The next hour we took turns holding and rocking our precious child and praying God would take her peacefully to be with Him. And around 11:30am on December 21, 2012, Charlotte René went to be with Jesus and she was finally safe & perfect in His arms.
There hasn't been a moment in the last week that we haven't thought of our baby girl. People are praying and reaching out to help us and for that we are very thankful, but to be honest, the only thing I really want is to be holding my beautiful Charlotte again and unfortunately no one can give that to us. We do have peace knowing she is finally pain-free and dancing up in Heaven with the one who created her, but being without her still hurts more than words can say. This pain we are feeling is one I wouldn't wish on anyone and I pray that with time, God's plan & reason for Charlotte's short, but love-filled life will be revealed and we will rejoice in the fact that we were lucky enough to be around her for her life here on earth.
Thank you again to those who have prayed for us from our first diagnosis until now and will continue to lift us up in your prayers. I feel blessed by the outpouring of love & support we have felt from family, friends, and even those who never had a chance to meet our precious little girl. Thank you all!
Charlotte René Grable
December 12, 2012 - December 21, 2012