It was a couple of days ago when we got the dreaded call from CHB ICU telling us that we should come into the hospital right away because Macaylah was not doing well. My heart sank. I knew she was not doing well from her last bought of pneumonia, but I never expected to go through what we did that evening.
My husband and I walk into her room to find her struggling for breath. Her O2 sats were lower than we had seen in weeks. Another tube was placed in her nose because she was collecting so much air in her belly. Her blood pressure was plummeting by the second..I was panic stricken. I didn't care how sick she was all I wanted to do was hold her. The nurses were wonderful, and with all the wires and machines in tow, I held her into the wee hours of the morning.
Everything was in such a fog that night..I do remember one of the doctors coming in and saying something to me that made me feel as though all hope has been lost for our little Caylah bear. He told me in a kind and gentle manner that "it's okay to let her rest now" I didn't know how to react. all that I could say over and over again was "I don't know what to do." "I don't know what to do" He respectfully said "you don't have to do anything" He saw it in my face..I still wanted to fight for my little girl. She was then put on an epinephrine drip to support her heart.
Macaylah has made some improvements with the epinephrine but the doctors say that she cannot be on it forever and it is only a temporary measure to help her survive. She is slowly being weaned off the epinephrine..I'm scared. That night was the first night I realized that our little girl was tired.
A few days later was Thanksgiving..what a wonderful day we had. She gave us a beautiful smile that day. I was Thankful to have another beautiful moment with her.
Today we had the most gorgeous and intimate photo session with our little love. She was so wide eyed and interactive. I cried through almost the whole session. The photographer we had was so wonderful..she cried with us and she laughed with us. It was an amazing moment with our daughter.
Macaylah was photographed by an company called NILMDTS (Now I Lay Me Down To Sleep) It is a non-profit volunteer organization that gives families of critically ill children the opportunity to capture the most precious moments in their lives together. Please take the time to look at this website. "nowilaymedowntosleep.org" It is a beautiful and amazing organization that utilize their expertise in such a selfless manner. If you know of anyone who is a photographer and would like to donate their time to this organization, please be so kind to let them know about this wonderful program. I am so thankful that Children's Hospital gave us the opportunity to have this done for our little Macaylah. We will cherish these memories forever.
