I was told in June 2012 at 9:30pm at a pediatrician visit~Morgan had croup and her Dr met me at the office instead of sending me to the ER. It was then she suggested to me that she thought Morgan has what is called “craniosynostosis”. “Mom to a mom, her head looks oddly shaped”…. I was shocked and scared. But deep inside- I knew already. My husband and I kept thinking at 5 months old, I don’t remember my other daughter’s head shape looking like this. I had stated that we had our 6 month check up and I was going to say something then… She gave me a number to call and asked for me to keep her informed.
I cried the whole way home. I went on the internet to research what I could and Cranio Care Bears was the first link I went to. I felt a little bit better but was devastated at the same time. All the triumph and fear I had was all mixed into my emotions, as I was dealing with my uncle’s death at the same time.
It was not even two weeks later, we had Morgan’s 3D ultrasound done to confirm the diagnosis and then the unexpected…. I had another family member pass away. It was an emotional roller coaster going through all of this.
It was a few days later, we went to Children’s Hospital of King’s Daughter to meet our surgeon and that was when we were confronted with our fears. Even as a nurse, I felt overwhelmed and was trying to be strong for the family. The plastic surgeon confirmed the diagnosis and gave us a possible surgery date and another appt to
meet the Neurosurgeon. All I kept thinking was ****Now surgery~ Six hours of craniofacial reconstructive surgery.****
As a nurse, all I could think about was complications from anesthesia, brain swelling, etc.. STOP! Is what I had to tell myself. I was terrified and confused what to do. The Dr’s suggested that we did not have to fix it but it was either fix it now or not fix it. After the skull begins to harden the harder it is to reconstruct the bone and give the new manipulated soft spots time to fuse. I went home and
looked into support groups. I filled out the care package form from Cranio Care Bears web site. I was not sure what we would be receiving but was thankful for everything we did get. I have to say, that day I came home and a package was on the door step, a bright smile came over on my face. After two death’ s in my family and going to all these appt’s for Morgan was emotionally draining and
opening up that package was a small sense that I knew I was not alone and it made me feel like there is hope and there is someone out there that understands as a mother how I felt alone and saddened. Why Me? Why Us? Why Morgan? Then an answer came to me, why not Morgan, maybe there is a plan for Morgan, maybe there is an answer to this whole ordeal and the answer was not plain to see. Or there did not have to be an answer. I have to say while I was getting things ready for Morgan’s surgery we had another family death. I was emotionally done. I had to laugh at this point and think there must be a plan for us!!!
Aug 20th came and we went through 6hrs. and 22 mins of WAITING~~
Passing her off to the OR nurse was devastating and something a mother can never describe to someone. All I could say was my heart was broken and fear set in. Will I get this beautiful little girl back to hold in my arms again and will she come back to me the same with no severe complications. I had to continue my prayers. All I knew to ask of God was “will you allow me to continue raising this precious little child of yours?” I stated that I knew we were all God’s children and I stated that it would be a privilege…. I asked that he guide the surgeons hand and bless the staff in the OR. Morgan is now in your hands being guided by these wonderful doctors.
We got word that Morgan, (my trooper) was doing well and was in recovery. I could breathe now. It was the next step to moving forward. No going back! The days became long and tiresome. All I could do was feel so happy to have Morgan back and on day three a wonderful SMILE came over this little soul. Morgan still could not even open her eyes but she was giving us a contagious smile!!! I knew then everything was going to be ok. After all the sad news and deaths we went through, this little person and that one little smile was just the beginning! It made sense to me, we have to look for the future and have faith. We never know what it will bring but we have to take it on and push past it together as a family!!! This whole experience has changed “ME” and my family and not to take anything for granted. Morgan is healing well and getting better everyday. I have to thank GOD for my little trooper and she will never know how brave she was and how brave she had to make her mommy.