Wednesday, July 22, 2015

July 22 - Dear Nicholas Sparks (Guest Blogger Jill Coon)

Dear Mr. Sparks,

At 28 weeks of my second pregnancy, I went for a routine sonogram to rule out placenta previa. My first sonogram at 20 weeks showed the placenta a bit low but baby was just fine. During this second sonogram the technician became very quiet and was focusing quite a bit of attention on one area. Her smile was gone and I could feel my heart in my throat. After talking to the radiologist and my OB we learned that the baby's heart was displaced to the right and there was a large mass in the left side of the chest. They told us this was most likely one of two possible defects. One was CDH and the other was CAML(cystic adenomatoid malformation of the lung). We were sent to a group of perinatal specialists two hours from our home.

Our lives were turned upside down in a matter of minutes. I was in shock. If it wasn't for my then one and a half year old son Travis, I don't know how I would have made it through the last ten weeks of my pregnancy. It was a rollercoaster ride. We went to the perinatal specialists once a week for level 2 sonograms. Each time they thought the diaphragm was intact and focused their thoughts on the baby having the condition called CAML. The prognosis wasn't good in either case. The good news was that his right lung seemed unaffected and he had no other obvious defects.

We planned to induce at 39 weeks since the hospital I was to deliver at was two hours away. This hospital was equipped with ECMO in case he needed it. We had met with the pediatric surgeons ahead of time and they were prepared for Troy's needs.

Of course Troy made up his own mind and I went into labor 3 days before we were to induce. The two hour drive to the hospital was the longest of my life. Troy was born that afternoon on 8/27/94 without any complications. He was breathing on his own! I will never forget the sweet sound of his cries. I was so afraid that I wouldn't hear them. They let me hold him very briefly. That was the most wonderful moment. I kissed his head and told him that I loved him. The nurse scooped him up quickly and took him into another room to assess him and start him on some oxygen. That's when I lost it. That first separation, and still not knowing much at all about his condition. I was a mess. I felt better later when they wheeled me into the NICU so I could see him. He looked very content although he was covered with tubes and wires. I wanted to hold him so badly, it hurt.

Later that evening his surgeon came to my room to tell us that they had confirmed that Troy had CDH. The mass in his chest was his intestines and the hole in his diaphragm was relatively small. He told us that Troy was stable and that they had scheduled surgery for the next day.

Amazingly, Troy was breathing on his own with some oxygen right up until the surgery. The surgery went well and took a few hours. We paced the halls and waited for my parents to arrive with our son Travis. I felt so much better when they got there and I was able to hug and kiss one of my children! It hurt so much not to be able to be close to Troy. Soon the surgeon came in and told us that the surgery went well and Troy remained stable. He also told us that they removed his appendix during the surgery. They said he had a small amount of left lung tissue which was good. It could expand.

They got him situated in the NICU, and there I stayed for the next two weeks. Leaving only to sleep (ha)! and eat. He was on the vent for only a few days. After a while it seemed to cause problems for him. He was having frequent "black attacks." They extubated him and he did well after that. They inserted a chest tube to help his lung expand. It was a slow process. He also had jaundice and needed to be under the lights for what seemed like forever. I was able to feed him after a week! I was pumping breast milk for him and I was able to give him a bottle. He seemed to love it! Troy made wonderful progress each day, and after only 2 weeks in the hospital, (must be some kind of record for a CDH baby)! we were able to bring him home!

His homecoming was filled with mixed emotions. I was thrilled to have him home with the family, but I was scared to death! I slept with the lights on and one eye open counting his respiration's! I was so worried that something would happen. It was hard to wean myself off of the monitors used at the hospital!

After 3 weeks at home, my worst fears came true. Troy began throwing up each feeding and crying very painful cries. I called his surgeon who told us to get an x-ray at our local hospital. It didn't show any major problems but to be on the safe side he told us to come down and stay the night while they ran some tests. After 24 hours in the hospital they found out that he had a bowel obstruction. He was rushed in for emergency surgery in the middle of the night. A six inch piece of bowel had been cut off by adhesions and had died inside of him. He was very sick. His whole body was toxic. They removed the piece of bowel and pumped his body with many antibiotics. He was critical. The doctors were very worried about him. They told me that he was as sick as anyone can get. We almost lost him. He was on many medications and back on the vent. His condition was much worse this time around. I stayed by him and got as close as I could to him in that little bed. I wanted to crawl right in their with him! Soon he was starting to show signs of improvement. He is such a strong little solider and he fought hard! He was on the vent much longer this time and the settings were up and down each day. Finally he was extubated and breathing on his own. He remained in the hospital another two weeks. We brought him home healthy again and we haven't looked back since! He has had one other surgery for an undescended testicle at age 2.

Today Troy is a happy and healthy 4 year old that loves to swim, ride his bike, snow ski, x country ski, and go for boat rides! He has had virtually no complications at all from the CDH. He does have a slight pectus deformity, but it is barely noticeable. We are so blessed to have such a healthy and wonderful little boy after such a hard start. I never let a day go by without telling myself that. It's hard to believe that this is the same little baby that was once so sick. I am only reminded by the many scars on his belly and the few on my heart. We thank god for what we have, and never take it for granted.

Troy's mom, Jill Coon (California)

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