At twenty weeks gestation, our son Christopher was diagnosed with a severe right-sided diaphragmatic hernia. He was born on July 12, 2012 at the Children's Hospital of Philadelphia (CHOP), and he was in CHOP's Neo-natal Intensive Care Unit. We have been amazed at the outpouring of love and encouragement we have received from friends, family, and strangers. We trust that God will give us the strength and faith to get through these challenges.
Written Apr 24, 2012 8:20pm
Our baby was diagnosed with a right-sided congenital diaphramatic hernia (CDH) on March 9th. Once the shock wore off, our first order of business was to find out who has a lot of experience in caring for these babies. It took about 2 weeks to focus in on CHOP. It was really neat to see all the arrows pointing in the same direction as we heard from many different sources about CHOP.
On April 6th, we had an all day consult that started at 8:30 and ended after 4:30. We had lots of tests and spoke with many people. They were able to answer our questions and concerns. We still had some decisions to make as a couple, but we felt like CHOP was the right place for Christopher to be born. I will be able to deliver him in the maternity ward inside the hospital. The maternity ward is just 3 years old. I will have Christopher in one room and they will pass him to a team of doctors waiting in the room next door - with all the equipment he will need.
I was completely unfamiliar with CDH before our ultrasound. Even when the DR. was explaining it to me, I was thinking that a hernia doesn't sound so bad. I didn't understand that a hernia could be a major deal for a developing baby.
We are celebrating Christopher's first birthday with a trip to the beach. It is our first family vacation and it is wonderful. Christopher loves the sand and water and hanging out with his brothers.
Christopher is doing great. He is crawling everywhere and pulling up on everything. He loves his brothers and lights up whenever they come in the room. They adore him and play with him tons. He loves balls and sits under the basketball net in the basement with a ball in his hands - looking up.
Last week we had Christopher's one year check up at CHOP. We were able to visit some of his nurses between appointments. Health wise, Christopher is doing great- lungs and heart are fine. Developmentally, Christopher has caught up.
The best news was that his weight went from the 3rd percentile to the 12th-- so no more worries about the ng-tube. His height and weight are exactly where his brothers and father were at one year.
Christopher has a small outpatient surgery (although surgeries never seem small to me) scheduled for next week at CHOP- which we expect to go smoothly. I will post a quick update for those who are interested.
As I was walking on the beach today with Christopher in my arms, I thought about how far God has brought us in this last year and how happy we are to have Christopher home with us. He brings joy to our lives with his smiles and laughs. Watching him grow is like watching a miracle before our eyes. Thank you so much for following our journey (and I am SO SORRY it has taken me this long to post an update).