Prior to her birth, she was diagnosed with a rare congenital heart defect called Truncus Arteriosus. Throughout the entire pregnancy, Charlie was carefully observed by a high risk ob and a cardiologist. We were assured that although she would need surgery shortly after birth, there was a minimal (3%) chance that things could go awry.
The day prior to Charlie's birth we also found out that Charlie had another defect but this time in her brain. She had Agenesis of the Corpos Collosum, which could have meant many things for Charlie if she would have survived. She could have led a perfectly normal life or could have been mentally handicapped. We choose to believe she would have been a normal girl because of the fact that she was a perfectly normal baby before her surgeries.
Charlie Elizabeth was born on December 5, 2008 at Brigham and Women's Hospital in Boston, Ma at 3:58 PM. Her daddy cut her umbilical cord and her mommy had to wait a few minutes to hold her because she was having difficulty breathing. This was the happiest day of both of our lives. Our sweet little girl was finally here, looking beautiful and already showing some of her spunky personality.
Charlie was tranferred to Children's Hospital Boston (right next door) and from that point on we spent every possible moment with her. Besides the fact that Charlie was in the hospital and the looming surgery ahead, the first five days of her life were wonderful. She loved snuggling her, feeding her, taking her picture and video. We were just fully intoxicated by this sweet little girl. Our sweet angel.
At the end of the fifth day of her life, Charlie suffered a major set back. She had to have an emergency surgery to tie her pulmanary arteries because her heart was pumping too much blood into her lungs. That night we almost lost her.
After this point, Charlie underwent several surgeries, procedures, and catherizations. The doctors attempted to close her chest twice with no success. In the end, they opted to gradually close her chest which worked. Our Charlie withstood and suffered more than most people will in their lives. She was a strong and brave little girl who had the spirit to live.
On the day of February 16th, we left Charlie's room in order for the doctors to perform a procedure. As we waited, we prayed that everything would work out well. Midway, Charlie's nurse informed us that the doctors were still working and would notify us when they have successfully placed a new arterial line. After the procedure was over, Charlie's surgeon came to speak with us and told us that although Charlie has had many setbacks he still believed she had an opportunity to fully recover. As we returned to her bedside, we knew something was horribly wrong by the somber look on the doctors face. She informed us that Charlie's dialysis machine had feces running through the tube. At this point, we knew our baby had reached the end.
We opted to have the opportunity to hold Charlie in her final moments. As we held her, we told Charlie how proud we were of her and how much we loved her. We told her how much we were going to miss her and that she will always be a part of our lives. At 4:44 PM we felt Charlie's heartbeat for the last time.
During Charlie's stay at the hospital, we updated daily a website for Charlie. If you would like to read more about our angels life please visit: www.carepages.com/charlieelizabeth
Today makes 2 months since you have passed away Charlie. We love you so much and we miss you every moment of our day. At this time two months ago, we would have been waiting for the doctors to come around for rounds to talk about the plan for the day or week. We would be giving you kisses, rubbing your head, and hopefully seeing your beautiful eyes. When we think of you now, we choose to see you before all of the surgeries and all of your suffering. We see you swaddled in your blankets; we hear your cries to be held; we smell your sweet smell.
We love you sweet girl.
Hey Charlie-Bear,
Today you should be turning 24 weeks. I wonder just how big and chunky you would be right now:) Yesterday, Daddy and I had to each read a letter that we have written to you in our group class. I know that if you heard them you would know that we love you very much and struggle to live everyday without you. I can only hope you are happy and looking down at us. I just wish that you were happy and looking up at us from our arms! Baby girl, you are my world, my sunsine, my love and I miss you with every beat of my heart. Every waking moment is just a reminder that you are not here and that we are never going to get you back. Just thinking that we'll never see you again or hold you again is almost unbearable and so unbelievable to me. Sweet love, watch over us and take care of us. I know that is a big job for a sweet little baby like you, but we need you more than anyone will ever know. I will try and post our letters for you baby. I love you!!!!!-Mommy
Sweet Girl, today you should be turning 6 months. So Happy 6 Month Birthday Charlie-Bear!! Your daddy and I miss you so much. Today we started talking about what life is going to be like without you in the future. I guess it will be much like right now, but I wonder how different it will be if you have brothers or sisters. The one thing we do know, Charlie, is that we are never going to exclude you from anything. Everything from your place on our family signature to our Christmas card you will be included. You are our first baby and we are going to love you forever and ever.
We miss you so much Charlie that sometimes we do not know how we are going to go on without you. Some days are such a struggle to even get out of bed knowing that you are not here. I imagine this is the way it is always going to be regardless of how our life has progressed. You are always going to be loved Charlie and I hope you know that. We believe that you were able to feel the love we had for you at the hospital and that is why you kept holding on. We believe that you can still feel our love for you.
Stay close to us sweet baby. We love you:)