Friday, June 5, 2015

June 5 - Dear Nicholas Sparks (Guest Blogger Tanya Clemens)

Dear Mr. Sparks,

My son was diagnosed with CDH at 28 weeks gestation. He came 4 weeks early on Feb. 4, 1998. At first he was on the oscillating vent. He was doing pretty good all things considered. But then they kept battling with fetal circulation so they put him on ECMO at 4:00 in the morning. I had seen a baby on ECMO beforehand but I was still unprepared for the sight of my son. He went from 6lbs 6ozs to over 10lbs practically overnight. Still he did really well so on the 10th they did his surgery. After a couple of days he went off ECMO to a normal vent. Dr. Lelton said they were excellent setting and Matthew was doing well. We were so excited. They told me once his chest tube came out I could hold him. I could hardly wait! Then on the 13th he started turning a grayish blue. They discovered he had pulmonary hypertension. So on Valentine's Day he was put back on the oscillating vent on nitric oxide. It was hard for us but the doctors said he was fighting and stable for the moment. After a week on the nitric oxide he was weaned. They put him on a regular vent again.

They were steadily weaning everything. His vent, his drugs, and then to my delight, he went on breast milk. He tolerated it very well. He was getting down to a normal size again. In the next week or so he was doing well enough that they said he was close to weaning the vent. They told us, barring any major complications, that he would live. We were so excited! He'd had set backs but finally it looked like there was an end in sight.

Well, for some reason, Matthew started swelling again. He gained over 470 grams over night. At first they thought it was a blood clot. They tried everything and called in every doctor they could think of. He didn't have a blood clot, he wasn't sick, and his renal functions were fine but still he gained weight. Finally they told us it was not looking good at all. He started having bradycardia. They went as high as they could on vent settings and oxygen. They put him back on the oscillating vent. He was being given all the support he could. We almost lost him on a Thursday night. But they put him on nitroglycerin and he made it through the night. He had a chest tube for drainage, one on the other side where they put a hole in his lung for drainage of air. He wasn't on breast milk and they had turned up all his narcotics. At this point, after much prayer, I figured we would probably lose him. We found a funeral home and we bought a cell phone so that we could be at the hospital at a moment's notice. People all over this country were praying for him. But on Monday, April 6, 1998, we got a phone call from the hospital to come up. Amy, one of his nurses, was there and told us not to scrub but to hurry straight in. You see, we had told them to do nothing else to him. When we got there his heart rate was only 30. His sats were in the 50's and 40's on 100% oxygen. They let me hold him. They had to switch vents. When I finally handed him to my husband his heart rate dropped to 0. It all happened so fast. They let me bathe and dress him. We took lots of pictures and took turns holding him. He was one of the greatest blessings of our lives. I wouldn't give back a single minute.

At his funeral we were blessed with the chance to witness to his unsaved family members. He has changed our lives for the better. Heaven is so much closer now. One more thing, if anyone has to decide to let there little angel go, tell him that it is OK and you understand. Give your child to God for He is the greatest Father. And remember only your child’s body is gone. They live on forever in heaven with no pain, no tears, and no sorrow. The death of our Matthew was not goodbye but until we meet again.


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