[left:560b00383f]http://www.cdhsupport.org/graphics/42.jpg[/left:560b00383f]Our buddy, Cole Patrick Campsey was born on March 26, 2003 at 4:53 PM weighing 5lb. 5oz. in a small town in Virginia. After a "perfect" pregnancy and normal labor, he was finally here! He is our first and only child. My husband and I could not wait to see his face and meet him. We waited 9 months for this exact moment. I kept wondering why I wasn't holding him yet....I really want to hold my baby!! Then, the Dr. said he is having trouble breathing.."come on little buddy, you can do it". That's what the DR was saying, little did I know it was much more than that.
I had no idea something could be wrong with him. I had many ultrasounds because my doctor had his own Ultra sound machine. Everything always looked good, or so we thought. Cole was handed to be for maybe 2 seconds to hold him and then they took him away. How can that be? We waited so long to hold him and he is gone again.
There was a pediatrician making rounds, who is truly an angel to Cole & all of us. She immediately jumped in to work on him and happened to be 5 months pregnant herself! She intubated him and started the series of tests, X rays, etc. My poor husband was running back and forth from me to Cole and then I had to pass out! The pediatrician came in and said Cole was going to be transferred to another hospital. WHAT? I thought he just needed some time to get stronger, but the look on the Doctor's face and my husband's face told me it was serious. The next thing I knew my husband asked my mom to come in the recovery room to be with me. It was decided by the physicians due to Cole's unstable status that he would be life flighted to The University of Virginia (3 hours away). The felt assured he would need ECMO.
I went say a "see you soon" to Cole, not a good bye. I touched his little hands, his feet and rubbed his head. I felt so helpless seeing him there with all the tubes. The doctor mentioned something about a hernia. Well, all I knew about a hernia was that it was something you got when you lifted too much. How in the world could a baby get one. Then she showed me the X ray. His intestines and his organs were not where they were supposed to be. While my husband was still driving, Cole was admitted to UVA at 12:01am. The admitting physician gave me a call to give me a diagnosis of Left sided Diaphragmatic Hernia.
I was sent home the next morning .. well actually I told them discharge me or I'm leaving. But was readmitted that same night with a high fever and an unexplained infection which kept me away from my husband and son 4 more days. Those days felt like years! When I finally got to the NICU, I saw the name COLE on the end of his little bed and a picture of a sailboat drawn by another child. As I walked over I saw him and the tubes, wires, and the machines keeping him alive. My heart broke! Nothing can ever prepare you for seeing your baby like that.
The hernia repair was done on his 5th day of life. He was on the oscillator. He had a hard time getting on the ventilator they wanted him to be on for the surgery. They had to try him several times, and finally he was stable on it just long enough for the surgery to be completed. I was so anxious for the surgery because I knew it would start his recovery. Immediately after the surgery he had to go back on the oscillator.
We were finally allowed to hold him after his chest tube was removed on the 10th day. I cant explain how good that felt. Finally, I could hold my baby and he could feel me holding him! After 2 failed attempts, he was taken off the oscillator at 14 days. When he came off the oscillator we could finally see his face! What a happy day! He required continuous oxygen via nasal canula and stayed on that at home until he was 3 months old.
He was discharged home after being at UVA 31 days.
He has had many feeding problems to overcome and poor weight gain since he started eating. He is still very small for his age, suffers form severe reflux, which is treated with medication. He receives speech therapy once a week, and his speech is improving daily.
He has had several hospital admissions for stomach bugs, dehydration, undescended testicle & circumcism at age 2, tonsils/adenoids removed at age 3. But, those were a walk in the park compared to what the poor guy had been through!
He is in preschool, loves it - and will go to Kindergarten next year. He has many friends and other than being a bit small, you would not know anything was ever wrong with him. He will be 5 years old next month !
Everything seemed so long and hard back then. But after writing this story I realize things could have been so much worse and we are so thankful. We could not have made it without the wonderful medical team at UVA, our local Pediatrician, our Families and most of all God. Cole is a blessing to us and our families and is absolutely worth everything! Our families and friends have been so supportive, we love them all!
Written by Cole’s parents, Scott and Penny Campsey (VA, USA)