Tuesday, August 18, 2015

August 18 - Dear Nicholas Sparks (Guest Blogger Jennifer Doan)

Dear Mr. Sparks,

My son, Bryan, was born on March 7, 1998 with CDH. He was full-termed and never diagnosed in utero. Which was shocking because my last ultrasound was done at 28 weeks to find out the sex of the baby and the obstetrician said, "Everything looked just fine"! So, my husband and I were very excited because the baby was going to be healthy and he was a boy. My daughter was also excited that she was going to have a baby brother. As the due date came near, we registered with Phoenix Children Hospital thinking if something should happened he would be in the right place. Then on March 7 my contractions started and I started having second doubts about driving 25 mins. to Phx. Children's and the closest hospital was only ten mins away from our place. But my husband and I figured since I had already pre-registered that we should go to PCH. By 4am on March 8, I was admitted and by 1:50pm my beautiful son was born. That was one of my happiest moments until they cut the cord, and that's when our lives was turned upside down. The obstetrician put Bryan on my stomach and I thought it was strange that he only made one small whimper and never did anything after that. A couple of minutes passed when I asked the doctor, "why was he a gray-ish blue and not crying?" She then tried suctioned him and tried to rub him to stimulate so he could let out a big cry but nothing happened. So she took Bryan off me and took him to the little nursery bed and began bagging him. That is when she realized that something was out of the ordinary and called for more help. And a couple of more mins. passed until the NICU team arrived.

However, in my mind it felt more like an eternity. Then the NICU team was in my room huddling around my baby which I could no longer see. The neonatologist finally was able to intubated him and rushed him to the NICU nursery. His apgar scores were 1 at 1 min., 1 at 5 min., and 8 at 10 min. They did an immediate x-ray and diagnosed him with a left-sided diaphragmatic hernia. My husband and I were in shocked and never heard of CDH and we were also devastated when they gave him a 30% chance of survival. He was so small and looked so perfect on the outside, that we couldn't understand why he was a sick baby. By 7:30pm the surgeon felt Bryan was doing very well and decided to operate on his diaphragm, and did very well throughout the 2 hour surgery. He did fine after the honeymoon period and continued to be on the jet ventilator because of his pulmonary hypertension. It took 2 1/2 weeks to wean him off the jet to a regular ventilator. Then it took another week to wean him off the regular vent because his pulmonary hypertension finally resolved. He was then able to receive regular oxygen via nasal. However, the doctors felt it would be difficult for him to handle a large amount of breast milk and continued to feed him 1cc every hour and only increased it by 1cc every hour. So they could slowly introduce the feeding amount to his stomach.

Then they wanted to insert a broviac line only because he didn't have any more IV sites, but the original surgeon didn't feel the same way and ordered to give Bryan a bolus feed to see what would happened. Miraculous he did just fine and was able to come home and was discharged on April 3, only with an apnea monitor. They discontinued the apnea monitor because there were no episodes. To this day he still has problems. Especially when he gets the common cold it could easily wipe him out for several weeks. My husband and I still feel strongly that he may have a reflux problem because he's always vomiting. However, they don't think he has reflux because his only symptom is when he coughs to a certain point then he'll start vomiting. But other than that he's able to keep his food down. If any other parents have any suggestions or answers please contact me about this feeding issue. When he was 12 months old he needed physical therapy for severe delay in motor skills. Then when he was 18 months old he had to have another surgery to correct his left testicle because it still didn't descend naturally. Now he is 29 months old and goes to speech therapy because he's not talking. The only words he knows is Mama, Dada, and milk, which that's the only words he needs to know for the time being. But I'm trying to do a preventive step so he won't be delayed in any areas when it comes time for school.

To this day I thank God for each and everyday I can spend one more day with Bryan. Plus giving me another chance of having another perfect little girl that was born in March 1999, with no birth defects.

**I just wanted to let the CDH parents know is that this battle is a long and tedious one. My husband and I only advice is to you is that take one day at a time and always have hope because no one can ever take that away from you. May God bless each and everyone that reads this story.

Bryan's mom, Jennifer Doan (Arizona)

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