Wednesday, May 20, 2015

May 20 - Dear Nicholas Sparks (Guest Blogger Denise Bean)

Dear Mr. Sparks,

I am writing this story from the bedside of my son Spencer Bean, who is diagnosed with CDH. Our story begins on April 13th when my husband and I went in for a level II ultrasound. We were thrilled to find out what we were having, is it a boy or a girl? However, our excitement quickly changed when they saw on the ultrasound our baby boy's heart was shifted to the right of his chest and his stomach and bowels were up in his chest as well. My husband and I were sick. I sobbed and was so afraid. The doctor said he had a 40% chance of survival. When we left the doctors that day we were numb, they gave us literature to read about the illness. My husband immediately got on the internet and began to research all options. That same day another mother's baby was diagnosed with CDH. From that day forward our grieving began. My husband was strong for me. At 23 weeks my husband and I flew to Philadelphia to see if we would qualify for in utero surgery. The date was May 5th. The day was full of ultrasounds, from having a fetal echo to an MRI, at the end of the day we met with Dr. Adzick and he said our baby did not qualify for in utero surgery. Our baby had a 1.25 LHR (.9 LHR chances of survival 0, 1.35 LHR chances of survival 70%). I was almost relieved to find out I did not qualify for such a surgery. For the next several months my time was busy at Dr.'s offices. I had level II ultrasounds every 2 weeks. At around 30 weeks my amniotic fluid was on the rise. The reason for that was Spencer was not swallowing fluid like he should because his stomach was in his chest. I also had several non-stress tests done just to make sure that Spencer was not under stress. My husband and I decided to have Spencer delivered at Iowa City, IA. After interviewing several doctors they seemed best qualified for our baby. At 34 weeks I started to go into labor. They put me into the hospital and put me on magnesium. I became so ill, not to mention afraid for Spencer. My goal was not to deliver him until at least 36 weeks. Well, Spencer decided he was ready to join our world at 35 weeks. My second premature baby. My delivery went smoothly. I had Spencer vaginally. All the doctors were present for immediate care. Spencer's honeymoon period was brief. He remained consistant therefore the surgeons decided to do surgery on day 3 of his life. His surgery lasted only an hour. They found he had his stomach, bowel, spleen, pancreas and small and large intestines in his chest. Spencer had a fairly large right lung and a compressed left lung. After surgery, Spencer remained on a high frequency vent. But the good news was he never required nitric oxide. We were so pleased. Surgery went well. One week after surgery, Spencer was put on a c-pap already. He was not on a high frequency vent or even a regular vent any longer. Spencer was being so strong. It seemed he was even stronger than his mother. I was so tired and stressed, not to mention worried. I missed my 20-month-old son so desperately. My heart just ached. On day 8 of Spencer's life they began feeding him, not by mouth, but a tube to the stomach. He was taking 80cc a day. Such a hungry guy. I also played music for him, that is, after he was taken off "PV" restriction. (PV restriction means you can not stimulate the baby in any way, no touching, no high level talking, in any way) It seems when you go through this you always are waiting for the next day to arrive because it is then you know you made it through one more day. Spencer was released from the hospital at 24 days old. I breastfed for 8 weeks. It was difficult the first few months. It seemed Spencer could not relax, he was very easily upset, hard to put at ease, they said it is because of what he went through. Spencer is 5½ months old now and weighs 17 lbs and loves to eat and laugh at his big brother. Remember that other mother who was diagnosed at the same time I was, his name was Gabriel, he passed away 3 beds away from my son Spencer while in the NICU. I can't help but to think part of Gabriel will live on in Spencer!

Each day I worry if I hear a cough or a sneeze, I automatically think Spencer is going to catch it and be put back in the hospital. But then again, anybody who ever is a mother knows the worry! We are blessed as is any parent who has the privilege of raising God's children. Remember this "our children are on loan from God!" So feel blessed with as little or as much time as you have with them, they are miracles even those that go on to become angels right away, like Gabriel.

Spencer's mom, Denise Bean (Iowa)

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