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stories owenMy husband Danny and I found out that I was pregnant with our little "Peanut" on July 17, 2006. I had some unusual bleeding at the beginning of my pregnancy, but numerous ultrasounds confirmed that our little one was growing and healthy.
 
As with my first pregnancy, I was diagnosed with gestational diabetes. Fortunately, I was able to manage it very easily and it didn't impact me too much except for my belly growing larger than normal. My pregnancy continued and was rather uneventful for the next couple of months, in November we found out that we were having a boy and we named him Owen.
Our story took an "exciting" turn in January. I went in for my 32-week ultrasound to measure the baby to make sure that he wasn't growing too big due to my gestational diabetes. His measurements were fairly normal in the ultrasound; I on the other hand was measuring big. At 32 weeks my belly was measuring at 40 weeks or full-term. The ultrasound technician discovered that this was due to polyhydramnios, or excess amniotic fluid. My OB checked with our local high-risk OB and he suggested that I come back in 10 days for another ultrasound. By the grace of God we had this additional ultrasound. It was at this ultrasound that Owen was diagnosed with a right-sided Congenital Diaphragmatic Hernia (CDH). Our local hospital is not equipped to care for this type of birth defect. If it had not been detected prior to birth and I had delivered at our local hospital, Owen would have been in respiratory distress and been either life-flighted or taken by ambulance to Portland while I remained in our hospital recovering from a c-section.
 
My OB immediately sent us to a specialist and they confirmed the diagnosis and said they wanted us to go to Portland to deliver. I did a bit of research but not much and we had consultations with doctors in Portland to prepare us for Owen's birth. It all went so fast and so slow at the same time. I had those few weeks to mourn the birth that I had hoped for.
Owen's hernia was missed at multiple ultrasounds. I believe this was because his hernia was not as severe as most. It was not as easy to see because he did not have much of his abdominal contents in his chest cavity. Owen had bowel in his chest cavity and part of his liver, which also acted as a plug in the hole so that more could not pass through. His heart wasn't impacted nearly as much as it would have been if the hernia were on the left side. We would not know what his lungs looked like until he was born and had his repair surgery.
On Tuesday, March 6, I went in for my C-section. There was a chaplain that came and prayed with Danny and me and for Owen and then I went into operating room. I didn't think I would get to see Owen after he was born but the doctor made sure that I did. He didn't cry, he just gurgled and he was very blue and then they took him away to the resuscitation room next-door. Danny was able to go with him and go back and forth between the two of us. The team of doctors and nurses immediately intubated Owen and sucked out any fluid in his stomach and put a line in his umbilical cord.
 
I vividly remember the day of his surgery, which was Friday, March 9. Again, there was a chaplain there and she brought my family in to pray over Owen before his surgery. She had me place my hand on his forehead and then Danny's hand on mine, and my sister's on his, my mom's, the nurses, his anesthesiologist and she gave the most beautiful blessing that I can't remember a word of. We waited in my hospital room and there was someone in the operating room that called and told us how things were going in the surgery. Then, when we thought we couldn't wait anymore, the doctor walked in and he had the pictures from the surgery and told us how it all went and when we could go see Owen. Owen did amazing and they were able to repair his hernia (a 5 centimeter hole) laproscipcally. He only had four small incisions, 3 that were 3 mm and one that was 5 mm. We found that Owen's left lung had developed normally and that his right lung was 2/3 normal size.
 
On Sunday, March 11, less than 2 days, later he was off of the ventilator. That same day, they slowly started giving him food for the first time through a feeding tube down his throat. After Owen was removed from the ventilator he was put on a machine called c-pap, which provides positive airway pressure to help him breathe.
 
On Tuesday, March 13, one week after Owen was born I was finally able to hold him for the first time, once his chest tube had been removed. On March 17, his c-pap machine was removed.
We had been warned that the feeding would be the longest, most frustrating part of this ordeal and this was true. In the beginning you survive on adrenalin. Each day is literally a fight for life. Because he was intubated for almost a week and then tube fed for another week, Owen basically forgot how to eat on his own. He had to "remember" how to suck, swallow and breathe all together. It takes a lot of coordination and effort. For a baby that has been through major surgery and that has been on different medications like morphine it is a struggle, especially when there is also a lung deficiency. The whole process was exhausting.
Several of Owen's nurses told us that we just had to be patient and wait for Owen to "get it". One day, nearly two weeks later, it just clicked and Owen finished every bottle one day. His doctor told us that if he kept it up for another 24 hours we would get to go home on Saturday, March 31.
 
In the first few months at home we dealt with a variety of issues; reflux, chronic constipation, a gross-motor skill delay (likely due to spending a month in the NICU), and asthma whenever he got sick.
Now at 5 years-old, Owen is simply amazing. He still has asthma and he takes his asthma medicine through a nebulizer twice a day. With each cold he ends up struggling with his asthma. He is so much better than he was a year ago, but we still have to be very careful about trying to keep him healthy as each cold seems to be very challenging for him. Owen is very tiny, but getting a handle on his asthma medicine has helped him to gain some more weight and grow a bit taller as he isn't burning so many calories just to breathe.
Owen is in a pre-kindergarten class this year and will start kindergarten in the fall of 2012. Owen is a bright and happy little boy with a kind spirit and an infectious smile. He has blessed our lives in so many ways and has made our family complete.

 

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Free CDH Book

cdhbookThis patient guidebook is a free educational resource for families with a child who has Congenital Diaphragmatic Hernia (CDH). It includes text, illustrations and multiple videos on: What is CDH? Prenatal Diagnosis Pregnancy & Delivery Management Prenatal Fetal Intervention After-Birth Surgical Repair Long Term CDH Complications Home Care Support Resources Common Medications The guidebook is written and produced by the faculty and staff of the University of California, San Francisco (USCF) Pediatric Surgery