The Journey of our Superman, Christian Matthew: February 14: MY HEART BABY: Christian Matthew's story

Meet Superman Christian

I was due December 4, 2012. I was my mommy and daddy's first baby and a complete surprise! When mommy took the test she took 5 before she realized I was really in there!!!! She cried to my daddy because she was so happy! I felt my mommy and daddy's love from day 1! Mommy use to let me listen to music in her belly while she would work on her research papers and exams. I loved the music and would kick her belly when I heard it and then fall into a deep sleep dreaming about how I would get to meet her and daddy soon. I liked when mommy and daddy would talk to me too and read stories. I was their little nugget they said and they loved me with their whole hearts.

Mommy had a few scares because she found out she was O- and I could be O+ so they just would give her a few shots throughout her pregnancy with me so that her body know that I was something good. All my doctor's appointments came back normal; I was a healthy baby boy or so everyone thought up until 37 weeks. The doctor sent mommy to see how big I was and see if they could induce her at 40 weeks if I had not come yet. Mommy and daddy wanted to be induced because my daddy was being sent to go fight for our country in Afghanistan a couple weeks after my due date. At the ultrasound I was squirming and the tech was having problems measuring my heart so she sent in another tech that was suppose to be a pro at getting squirmy baby's heart measurements. She didn't talk the whole time she was in taking pictures of my heart and she started to worry my mommy and daddy. She said she would go get the doctor. Mommy knew something was wrong, but nothing could prepare her and daddy for what the doctors were going to reveal to them.

The doctor came in with a genetics counselor and mommy just cried. They explained that my little heart did not look like it had fully developed on the left side. Mommy asked if it was something she did, she couldn't understand what had happened and why at 37 weeks this was just now being figured out, when the 20 week complete body scan of me had come back normal. I hurt for my mommy because it was not her fault, my cells had just died during my development. I knew she would blame herself even though she did everything right. They sent my parents up to the children's hospital, A. I. Dupont, in Wilmington, DE to a specialist the very next day. My parents called all my grandmas and grandpas to tell them to pray and ask for the scan to be wrong. My mommy didn't sleep very much that night. She cried a lot and told me how sorry she was she wasn't able to protect me like she thought she should have she rubbed her belly all night and told me she loved me and that I needed to stay strong.

My mommy and daddy's worst fears were confirmed by Dr. Bhat the next day.  I suffered from Hypoplastic Left Heart Syndrome and that my pumping function was not what it should be. Dr. Bhat brought in who would be my surgeon, Dr. Pizarro, and mommy asked a lot of questions. She hurt for me when heart transplant came out of Dr. P's mouth as a possibility. My parents were devastated. They held each other close as they cried. Never in a million years did they think they would have a child that was "broken." They didn't know it yet, but I would bring them the most joy they ever felt along with the most heart ache.

My mommy was now a high risk pregnancy and would deliver closer to A. I. Dupont in case I would need to be rushed their immediately. They went to the hospital, Christiana, to discuss what the delivery plan was. I would be here in 2 weeks they said by inducing mommy so that they could be prepared for me. Mommy cried and prayed a lot the next 2 weeks. My grandparents, mommy's parents and daddy's dad, came up to be here when I arrived. I had a lot of people praying for me all around the WHOLE world. I was born exactly 39 weeks on November 27, 2012 at 8:13 pm weighing in at 7 lbs 12 oz. and 21 in. long with a full head of dark hair. Mommy only got to hold me a minute before they went to check me over. I remained stable and was transported up to A. I. Dupont shortly after I arrived. I did get to meet and spend some time with my grandparents and Daddy before I left. Daddy and my grandpa Terry joined me that night and mommy and my grandma Lisa and grandpa Rolla came the next day. The military had also taken my daddy off his deployment so he could spend time with me.
                   I was diagnosed with Hypoplastic Left Heart Syndrome with mitral valve atesia and aortic valve atresia. Mommy and daddy had to look at me through a plastic bubble because I needed regulated oxygen.  Dr. Pizarro and Dr. McCulloch explained to my parents that my pumping function was still not what it should be and I could not get the Norwood (the first heart procedure of an HLHS baby) until it increased. At just 4 days old, I underwent my first heart surgery that would hopefully help my heart pump better. They put bands around my pulmonary arteries. When my mommy and daddy sent me off to the O.R. it was the hardest day thus far. They kissed me and snuggled me for just a short bit before I had to go. When I came back I would no longer be the smooth skinned baby, but a bruised and swollen baby with a huge incision on my chest and wires and tubes coming out everywhere. I made it through the surgery with no complications.

I then started to have blocked premature arterial contractions and some bradycardia (slow heart beats). I had pacing wires inserted to help with this. The Dr. Pizarro broke my parent's hearts when he explained I would not survive the Norwood and would have to get a complete heart transplant. He said all the issues I was having with my heart he had never seen in a HLHS baby and my case was about 1 in 700,000. Mommy and Daddy didn't realize how strong I was just yet because they cried and started to prepare for the worst. A heart transplant was something that they had never expected. I was listed as a 1A on 12/3/12 at 5:12pm. My mommy cried a lot in the next week. She apologized every time she saw me. She told me she wished she could take my place. Everyone in my family told me that.

                   I had thousands of people praying for me. The news of my story had gone around many churches and was being shared. My mommy pleaded with God and finally gave me and my situation completely to Him, she let go of what she couldn't change. God was listening because my parents got the news on 12/10/12 that my surgeon would be doing the Norwood procedure the next day because my heart had miraculously gotten better. Silly doctors didn't realize my God was bigger than my defect. 12/11/12 I had open heart surgery, where they actually had to stop my heart and put me on bypass, the Stage I Norwood procedure with 5 mm right ventricle to pulmonary artery conduit shunt they also removed my banding around my PA. It was the longest 7 hours of my parent's life. I sailed through and was released to the recovery floor a week after. Guess what else; they put me inactive on the transplant list.

                   I was never able to breast feed, but my mommy pumped for me for 10 weeks to get the nutrients. I worked with a speach therapist to try and get me to bottle feed, but it was a slow process. They were not very consistent and mommy and daddy got frustrated and refused to have me get a gastronomy tube because the lady just never worked with me. They conducted a few studies to see how I swallowed and such. I did not pass the swallow test and aspirated into my lungs due to the paralyzed left vocal cord I had (this was due to my breathing tube and should correct itself eventually) so the G-tube was the best option. I also had reflux, so the doctors did what is called a Nissen fundopliction (tightening around the esophagus) so that I was not able to spit up and it go back down causing me again to aspirate into my lungs.

                   It was a long hard road, but on my 7 week birthday I was discharged! I finally got to go home and meet my puppies and spend time with my mommy and daddy. They hold me all the time and I am always happy. Mommy tells me I am her little superman and God has big plans for me. I was also completely removed from the transplant list because of how awesome I am doing. My surgeon even calls me his miracle baby, because he doesn't understand how I am doing so well, but I do; it is purely by God.

Since my discharge I have had to switch from breast milk to straight formula that is already pre digested. It is because they believe I have developed a milk protein allergy because I was having bloody stools. My mommy pumped for 10 weeks total.

                  I have 2 more surgeries to help with my HLHS. Please follow my story and continue to pray for me and my family. I am proof that God still preforms miracles.

http://www.facebook.com/#!/groups/Christianmatthewssupermanheart/

hunterandashlyssupermanchristian.blogspot.com

*please do not copy and post these pictures, we are sharing very sensitive pictures and do not want them shared except from us and our page*