Thursday, November 26, 2015

November 26 - Dear Nicholas Sparks (Guest Blogger Shyra Houghton)

My name is Shyra Houghton and I was 21 weeks pregnant when my husband, Chris and I found out our baby boy was going to be born with a CDH. I had gotten a routine ultrasound at my OB's office. When they thought they saw the CDH, they sent us to a perinatal center at a large hospital in Atlanta. It of course turned out to be what they had expected. That was the day that Dr. Stone, the radiologist, informed us of what a CDH was and what to expect. We thought our lives had ended. We were so heartbroken. I will never forget that day as long as I live. I had an amniocentesis done to check for other abnormalities that day in the office which was a Thursday. I had to wait until Monday for the results. It was the longest weekend of my life. We prayed and cried until we were numb. Monday came and the amnio was fine. We were then told that I would have routine ultrasounds done every three weeks, and to get in touch with the neonatologist at Egleston Children's Hospital so that we could learn all that we possibly could. We did and Dr. Reese Clark, who now is at Duke University Hospital, gave us wonderful information and told us that he would be the neonatologist on rotation the month Mattson was to be born. We were shown a ECMO machine and how it works. We were taken to the NICU where he would be. We later toured the hospital where I was told that I needed to deliver. We meet a neonatologist from there who informed us of what they will be doing in order to save our son's life. We were also put in contact with a family whose son was a survivor of a CDH and was a ECMO baby. That was the best thing that happened to us. We learned more from that family than any doctor. From that point on we waited, got the nursery ready, had showers and prayed for the best. I was induced a week early, because they did not want to be surprised. This way the neonatal team was ready. I delivered 12 hours after I arrived at the hospital. Mattson was born and let out a small cry and then immediately put on the table and intubated. We watched in disbelieve and waited to hear what was going on. They worked on him for about 20 minutes and then the neonatologist told us that they would take him upstairs and do some more evaluations, but it did not look good. They took him up to they NICU and came down about and hour later and said they he would be transferred out to Egleston ASAP because he only had about a 20% chance. Chris went with Mattson at about 10 p.m that night and had to make some major decisions by himself and was told so many things to expect. At 7:30 the next morning. They called and told Chris that they were putting Mattson on ECMO and to get the hospital. Chris came to get me and took me to Egleston Children's Hospital at around 3 P.M. I handled it really well. I felt so empty though and so helpless because just 24 hours prior Mattson was a lively and active baby and now he lay there paralyzed with tubes stuck in every part of his body. He remained on ECMO for 7 ½ days and finally was taken off. He did fine and had his surgery on the 12th day. These days were filled with so many questions and answers and God only knows how you have the strength and the sanity to absorb all of it. I stayed at the hospital during the day, in which I pumped and stored my milk there. Everyone makes you feel so welcome and they are so helpful. Everyday when I walked in the NICU I was so relieved that I did not receive the dreaded phone call in the middle of the night. Mattson's surgery went really well, no patch was needed. Every day after that was filled with waiting. Ventilators were changed to high frequency and then back. He started feeding him and of course he began refluxing. Steroids were given. New tubes were put in. New IV's in his head. Lots and lots of bald spots. It was 16 days after he was born that I held my son. It was such a good feeling. Finally after 5 weeks Mattson was finally taken off the of the ventilator, after 3 or 4 attempts a few days prior. He was put on the oxygen and we finally were able to hold our baby and give him the love and affection that I know he was craving. We finally knew Mattson would be fine. We went to the step down unit in which I was able to stay in the room with him at all times. That's when I learned how to put the NG tube in and how to administer medicines and how to work all the equipment that we would be taking home. We finally took Mattson home when he turned 6 weeks old. I think I stood by his bed for the next 2 days, because he looked so good laying in his very on crib with his very on clothes on and his very on blankets and toys. He came home on oxygen, a feeding tube, and a heart monitor. I got Mattson to take a bottle after 4 days in which he did fine. I took the tube out after 6 days and put him on the bottle. When he turned 8 weeks old his intestines became blocked and we had to rush him to Egleston because he could not stop vomiting. We were admitted for 5 days and it did not require surgery, the blockage worked its way out. We went back home without the oxygen and he did fine. When he turned 4 months old he started have really bad vomiting spells where he would have something similar to a seizure. I started out with the pulmonologist and then went to the gastroenterologist - who recommend a head ultrasound. She thought Mattson's head was too big. I went straight to Egleston for an ultrasound which showed a great deal of fluid on Mattson's brain. He was Hydrocephalous. I was told by his pediatrician to go straight to the Neurologists office. I did and Mattson was admitted that afternoon and was scheduled for surgery the next day. A VP shunt was place into Mattson's head and we were told he would be every bit as normal as anyone else's child. He would live a normal life. The shunt will be permanent and need for his lifetime. At 6 months Mattson got RSV which put him in the hospital the day after Christmas for 6 days. This was horrible. He did not eat, wake up, or hardly move for days. It took him a good month to recover from the RSV and of course set him back in his development of his lungs. When Mattson was 21 months old his reflux flared back up to the point where he could not even laugh without vomiting. He had a hiatal hernia that had gotten bigger and could only be repaired with surgery. At 23 months old he had a fundoplication done and it was a great success, a hard stay in the hospital because it was very painful to him, but a great success. He is 35 months old and has been reflux free for almost a year and is a very healthy, normal and lively child. He has to have breathing treatment occasionally and go on steroids when he gets a bad cold or URI. We now have our second child, Anna, who is a very healthy 5 month old who adores her special brother and lights up when she sees him like everyone else does. We thank God everyday for giving us the special child and giving us all the strength that we needed. My mother was there every day with us and who thinks Mattson hung the moon. Our first two years with Mattson was filled with lots of doctor visits, cleaning up throw up, going to the emergency room (once by ambulance because his pulse ox was 70) crying and sleepless nights, but we all made it. When I found cherubs 3 months ago I was so relieved that this horrible birth defect was finally being recognized. I wished I had been able to read the stories of these cherubs, who are truly Gods little angels, so that I may have been able to get some advise or help when I so needed it. Dawn, you are a remarkable woman to have done this special thing for all these families. God bless you and your cherub. Good luck everyone and please do not hesitate to contact me for any advice that we may offer.

Written by Mattson's mom, Shyra Houghton (Georgia)

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