Sunday, November 15, 2015

November 15 - Dear Nicholas Sparks (Guest Blogger Tammy Sincavage)

Dear Mr. Sparks,

 This is the story of Trent Montgomery Sincavage. I would like to dedicate this story to all of Trent's doctors and nurses. Trent was born on April 14, 1999 at 6:05pm. I only got to see him for a second and he was taken to the resuscitation table. Next thing I know the NICU team, at the Reading Hospital, was working on him. My husband, Jim and I were told he was very sick and could possibly have a heart condition. An hour went by and the Neonatologist, Dr. Wirth, came into my room and explained that Trent had a Congenital Diaphragmatic Hernia, and that he needed to be treated at the Hershey Medical Center. He told Jim and me that Life Lion would be at Reading within 30 minutes. All I can remember thinking was Trent needed to be baptized. Dr. Wirth did make a point to tell Jim and me that a NICU nurse, Trisha, had diagnosed Trent within minutes of my delivery and that he was very proud of her. I will never forget what Trisha and Dr. Wirth did for me and my husband, not to mention Trent. Trent was baptized before he flew to Hershey. As soon as the baptism was finished the Life Lion staff prepared Trent to leave. Trent was very feisty that night. He kept pulling at his tubes, they finally had to tie his arms down.

I was discharged from the Reading Hospital within 14 hours after delivery and my husband and I drove to Hershey. When we arrived at Hershey, Trent was very stable. His nurses and Doctors spoke to us and told us of things that could possibly happen. I remember staying with Trent the entire day not wanting to leave, but I knew I had to take care of myself to be strong for Trent. My husband and I stayed near the hospital and I was able to sleep that night. I'll never forget the sound of the phone ringing at 7AM on April 16th. I leaped out of bed, answered the phone and it was the NICU unit. Trent had severe pulmonary hypertension, the nitric oxide failed and his only hope was ECMO or he would die. My husband and I raced to the hospital we got to see Trent before his surgery and through my tears a nurse laid her hand on mine and said, "it will be okay". My husband and I then left the NICU unit.

The pastor from our church soon arrived and he kept Jim and I calm. He said to me, "what do you see in Trent's future?" I thought about it and I said, "I see three black belts." (Trent has 2 older brothers Alex, 9 and Harrison, 5. Alex and Harrison take Karate lessons and both are working toward their black belts) I could really see Trent with his black belt! That thought made me smile and somehow I found an inner peace.

After the ECMO procedure was done, Dr. Cilley spoke to Jim and me. He told us Trent made it through and explained what ECMO would do for Trent's lungs. He told us Trent's primary diagnosis was severe pulmonary hypertension and the CDH was secondary. Dr. Cilley gave us the cold hard facts of the battle Trent faced. I needed that, I needed him to be straightforward with us and he was. I felt that inner peace again. Trent was on ECMO for 10 days. He was decannulated on April 26, 1999. Trent was placed back on the ventilator. The next 3 days were very rocky. Jim and I didn't leave his side. I remember the neonatologist, Dr. Marks telling Dr. Dillon, the surgeon "he needs his repair" and Dr. Dillon would say," we will wait to Friday." Indeed the surgeons waited until Friday, they knew what was best for Trent.

Friday, April 30, 1999 Dr. Dillon repaired Trent's hernia. The surgery took a little over 4 hours. I never prayed so hard in all my life. My husband was a wreck and I was strong (totally opposite of when Trent went on ECMO). I knew at this point it was up to God to handle, all I had to do was trust in him. When Dr. Dillon finished the surgery he spoke with Jim and me. He told us that Trent. did well and he was on the ventilator, however he may need to be put on nitric oxide and the oscillator. The repair was made with his own tissue. His left lung is very tiny, because he has two spleens and one of his spleens grew where the lung should have grown.

Later that day Trent went on the oscillator and N.O. He became very ill. The doctors suspected that the pulmonary hypertension was back, so tests were ordered, but there wasn't any pulmonary hypertension. So perhaps he had an infection, so they gave him antibiotics, but it didn't help. Jim and I were standing by Trent when the Neonatologist, Dr. Marks came and told us we were up against a wall----but there was still some room to move. I remember yelling at God that day. I told God that he was wrong and it wasn't Trent's time to go, I was really mad. I did manage to calm down and I did find the inner peace again. I knew yelling and acting like a mad person wasn't going to help anyone. The doctors and nurses were doing all they could and I knew that. On the evening of May 4th we finally left the hospital (after reading Trent "Goodnight Moon" - he was read that book every night). My husband and I went back to the Ronald McDonald House and I thought for sure we would receive a call that night from NICU. I fell asleep and it was the deepest sleep, and during my sleep a miracle happened. I woke at 7am and immediately called NICU, Trent's nurse was delighted to tell me that he had a great night! I couldn't believe it, Jim and I were so happy. I sure do believe in miracles!

On May 10th I held Trent for the first time. He was still intubated so he had to lay on a pillow. Jim was not with me, he was home with Alex and Harrison. I had Trent all to myself, what a day. On May 11th Jim held him for the first time and then he gave Trent to me. While holding him I noticed his tube was really moving around and Trent was gagging, he had managed to partially pull his tube out! Trent was extubated and put on oxygen. Jim and I started going home at this point. We lived an hour from Hershey, so one of us would stay in Hershey and one of us would go home to Alex and Harrison. While I was at home on May 14th, NICU called, it was Trent's nurse, Martina, calling to tell me that Trent was breathing room air. This was another great day.

The next issue for Trent would be learning to eat. He was given an NJ tube, he really didn't like that, he kept pulling it out. (Needed to tie his hands down again!) Trent had a lot of reflux and was put on medication, which did help.

Trent was discharged from Hershey on 5/27/99. Before he was discharged I had everyone who was involved with Trent sign a t-shirt, given to Trent by the Life Lion Crew. The t-shirt has a picture of Life Lion and it reads "I flew on the Lion". The shirt is filled with over 30 signatures and hangs proudly in Trent’s bedroom.

Trent was readmitted to Hershey in June for 3 days, he had a difficult time with drug withdrawal. By the end of July 1999 he was drug free. Trent is now 16 months old. He is currently receiving physical therapy. He is tolerating food and no longer uses a bottle! He is also part of the Children's Miracle Network.

I would like to thank several people: Alex and Harrison for being the best big brothers to Trent. My neighbors, Bob and Nancy Moore, who opened their hearts and home to Alex and Harrison. (they took care of Alex and Harrison for two weeks while Jim and I stayed in Hershey.) Jim's family and my family for all their support. Our church & all of our friends for their support. The NICU staff at the Reading Hospital, especially Trisha and Dr. Wirth. The entire NICU staff and the entire pediatric staff at Hershey, especially Trent's primary nurses Jeanie D. and Larissa, the Neonatologists, Dr. Mallow, Dr. Marks, Dr. Waterberg and the Pediatric Surgeon's, Dr. Dillon and Dr. Cilley. Donna and Tammy for making Jim and me laugh! Most of all God for giving us Trent.

Even though there were really difficult days, there were also great days, something good did come out of all this, Jim and I did make a lot of new friends and I was able to find courage and inner peace in myself that I didn't know I had. God Bless us all.

Trent's mom, Tammy Sincavage (Pennsylvania)

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