Did you know it's not uncommon for parents of CHD children to suffer PTSD? I often believe that is something that has affected me lately. I don't believe I allowed myself to "feel" too much at the beginning of Raygen's life because everyday was so overwhelming I don't think I could have made it through. I lived minute to minute and that is all I could handle. I was a complete mess during the first year. I hardly spoke to anyone besides my husband and parents, never left Raygen's side, and the rare moments we were home hardly left the confinement of my four walls. This was mostly by choice, but made a lot out of fear. Fear of something happening if I looked away, went to the store, or even took a nap? I would never forgive myself if I wasn't there.
I look at this picture with a huge feeling of love. Nothing warms my heart more then my Dad holding my children, but look closely. Raygen was barely a month old. She's weak, slightly purple and hours away from almost poisoning herself to death. This picture shoots fear through my entire body. I tense and feel like breaking down because this is the day I almost lost her. She had survived the hardest open heart surgery that anyone could ever have and yet came out with paralyzed vocal cords. Her poor body could not blow off the CO2 her body was producing and she was almost literally killing herself with each breathe. If you could hear her during this time she sounded like a little humming bird. If you think that is a good sound? You'd be wrong.
Hours after this picture was taken we were watching 10 or more doctors try to save Raygen's life. First they stressed her out because they couldn't get an iv and being poked so many times and screaming she lost all of her reserve. Before I knew it she was purple and being bagged and I was screaming. I cry now. Typing this. I don't like to relive these moments, but they are part of her life and part of what makes her so special. I thought I lost her. Seeing your daughter bagged is a sight no parent should ever witness and if you do, you will never forget. I had to leave. I couldn't watch. I couldn't. I ran out and got my Dad. My Dad and Randy watched as I cried in my Mom's lap. Begging, pleading with God not to let her go.
She didn't go. She fought. She fought hard. That baby had way more strength and courage then her Mom did. Raygen has not had an easy road. After this night she spent weeks on a ventilator to see if her paralyzed vocal cords would start to work again. Unfortunately, for her, they didn't. The doctors gave us two choices. One: We continue letting her live on a ventilator or Two: We do a tracheostomy. This was a very painful decision for Randy and I. Living on a ventilator was not living. I couldn't hold her. She had to be on higher doses of medicine so she could handle the discomfort of a tube down her throat and the chances of her getting an infection on a ventilator was higher the longer she was on it. But, there are a lot of negatives when it came to a tracheostomy too. We moved forward with the trach. So the early part of May my daughter received her tracheostomy. By June we were able to spend some time at home. We went through trach training, choosing home care nursing, getting all of our supplies, setting up our home, getting special equipment to travel and so much more. These were hard days, but at the same time amazing days. My daughter is a survivor.
This is only part of her story. I hope it makes you realize that there are so many scars that go unseen and each child and parent has to find a way to deal and embrace them. Part of what helps me get through the hard times is sharing her story and hoping that someday it will help another child or mother that is going down a similar path.