Tuesday, July 28, 2015

July 28 - Dear Nicholas Sparks (Guest Blogger Lori Crisorio-Rivera)

Dear Mr. Sparks,

I was about 28 weeks pregnant with my son Dylan when he was diagnosed with CDH. I was absolutely devastated. He is my first child and my baby shower was 2 weeks away. What was I to tell everyone? Dr. Geis was very informative and compassionate but he warned us that ECMO is a possibility.

Dylan's left-sided hernia was very large. His stomach and intestines were in his chest cavity, pushing his heart over to the right. I had to have many non-stress tests, fluid checks, and level 2 ultrasounds. I started praying everyday, sometimes for 2-3 hours a day and saying the rosary was part of my everyday routine along with novenas to St. Gerard (Patron Saint of Pregnant Mothers) and St. Jude (Patron Saint of Lost Causes). I promised St. Jude my son's middle name would be Jude in honor of this wonderful saint. I also started to attend church every day, realizing the sacred importance of the Eucharist. God helped me get through this very stressful time in my life for I was only 21 and never had to experience anything this traumatic.

My OB-GYN planned a vaginal delivery at 39 weeks by induction. While I was being induced my son's heart rate started to drop, so they had to perform an urgent C-Section. The doctors told me that the first couple of minutes after the birth were critical for Dylan. He was finally born at 5:04pm weighing 7lbs 15ozs. Immediately after he was born the team of neonatalogists whisked him away. My husband and I never got see him until the next day. Dylan was stable that night. In the morning Dr Robinson performed the hernia repair. The doctor informed me that this hernia was worse than they had suspected. The doctor had to patch Dylan's diaphragm with gortex. Even though the surgery was a success my son's lungs were too small to sustain him. Ventilators couldn't do the job so they had to bag him manually. It was then that they told me he had to go on ECMO but he had to be flown by plane to Buffalo Children's Hospital. Because I had a C-Section I wasn't allowed to immediately. I was heartbroken. My husband and mother went the next day to Buffalo to be with him. A few days later, terrified of seeing him on ECMO, I flew to Buffalo. My husband, my mother, and I couldn't stop crying. He looked like a sleeping angel on that machine. I wanted to be with him every second. His first run on ECMO (about 4 days) went ok. They took him off as soon as they could to avoid complication, but after they took him off his health quickly started to deteriorate. He dropped below his birth weight. They tried nitric oxide and an oscillator, but nothing worked. Meanwhile, my husband, my mother, and I stayed at the Ronald McDonald House for the duration in Buffalo.

The doctors had to rush Dylan back on ECMO a second time but they informed me that he could never go on it again. While Dylan was on his second ECMO run (about 9 days), he started to develop pulmonary hypertension, blood clots to his UA/UV line, he had to have several blood transfusions, and he had to be on lasix constantly for fluid retention. Then he developed pneumonia and both of his lungs collapsed. Worst of all Dylan developed seizures due to a cranial hemorrhage caused by the large amounts of heparin administered. We were told that Dylan had to come off ECMO because if the head bleed got any worse he would become a vegetable. They megadosed him with antibiotics hoping to kill the pneumonia so he could breathe with a ventilator when he came off. But Dylan developed a yeast infection in his blood due to all the antibiotics. I prayed to Saint Jude and begged God to let him live. Thank God he came off ECMO successfully. Dylan immediately started to experience withdrawal from all the morphine he was given for ECMO.

Dylan had to get a cat-scan to see the extent of brain damage from the result of being on ECMO. The cat-scan revealed that the bleed was severe on the left-side and moderate on the right side of his brain. We were then introduced to a developmental doctor who told us Dylan would probably have Cerebral Palsy, be blind, and deaf. My husband and I thought the nightmare would never end. We felt like running away. Our son fought so hard to get this for we knew we couldn't give up. We just loved him so much. None the less, he started to do well enough to be flown back to Albany Medical Center. Dylan also had gastric reflux and oral trauma due to the invasiveness of the ventilator so he had to be fed through a NG-tube. At two months Dylan was off of the oxygen but it was a long hard battle to get him to drink from a bottle. He wouldn't drink much so his formula had to be thickened to 36 calories and he had to have MCT oil added to help him gain weight. They weaned him off of the Phenobarbital for the seizures and he seemed to do OK. Finally, at 3 months old Dylan was able to come home. We were so happy. When he turned 6 months old, after his DTP shot, Dylan started to have uncontrollable seizures. Once again my husband and I were in another nightmare. For 9 months Dylan was given many different medications but none of them could control the seizures.

Two weeks before the Christmas of ’96, Dylan refused to eat due to the medication. It was making him so sick. Dylan was back in the hospital. And we were told he might have to have brain surgery to stop the seizures. I was very depressed and started to have anxiety attacks. I just cried all the time. But I didn't stop praying. Miraculously the doctor found the right combination of medicine (Phenobarbital and Lamictal) and his seizures were completely controlled. He got to come home for Christmas. We were thrilled. Two months later Dylan had a Mic-Key feeding tube put in and started to do much better.

Well, the summer of '97 I was pregnant again. I had to have a level 2 ultrasound at 16 weeks to rule out CDH but they said it was too early. I went back at 20 weeks and the doctors noticed the baby was very small for gestation (the 5th percentile). The doctors thought that either it was a genetic abnormality or my placenta wasn't giving the baby enough nutrition. They said if the baby stopped growing they'd have to deliver the baby early. We were devastated again. Thank God this baby didn't have CDH. I started praying the rosary every day and vowed to have this baby's middle name be Mary after the Blessed Mother. I had to have continuous level 2 ultrasounds to monitor the baby's growth and weight gain. Well I am happy to say that on April 29, 1998 I gave birth to a beautiful healthy baby girl named Kayleigh Mary Crisorio-Rivera. I swear it was due to the Rosary.

I am also happy to report that Dylan proved many doctors wrong. He can see, hear, and he is almost walking. He has developmental delays but probably always will. Dylan will start school this September at the Center for the Disabled. Dylan is such a beautiful and loveable child. He loves to be cuddled and sung to. He adores his grandparents. We are truly blessed to have these two children. Dylan is an angel sent by God.

Dylan's mom, Lori Crisorio-Rivera (New York)

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