Let's Start at the Very Beginning...

On September 15th, Katy and Andy found out that Baby Jacob has a life-threatening condition called Congenital Diaphragmatic Hernia (CDH). CDH is a very serious condition in which a hole in the diaphragm allows abdominal organs to move into the chest restricting lung development. In Jacob's case, his liver is also squishing his heart and displacing other organs. CDH occurs in about 1 out of every 3,000 pregnancies and has a mortality rate of 50%. To make matters more complicated, Jacob has Right-Sided CDH which only occurs in about 10% of CDH cases and is typically more severe. They are so blessed to have found this out when they did, or Baby Jacob would have surely died at birth.

They will be delivering at UW Hospital in Seattle and later transferred to Seattle Children’s. Thank you to everyone who has already begun praying, and everyone who will now. Baby Jacob is blessed to have all of you thinking and praying for him.

Coming to the End of This CDH Journey

May 3, 2012 -Today Jacob had another echocardiogram of his heart. This was the first one since he has been off his pulmonary hypertension medication so I was a little nervous. I didn't need to be. He passed with flying colors! The cardiologist said the right side of his heart looked very good, no thickening and his septum looked good as well. She said they look very "happy"!  We also met with Jacob's surgeon and he is so impressed by Jacob each time he sees him. He said he looked better than ever. It was the first time he had seen Jacob without any tubes and the sensitive skin of his face all healed. Since being off the Sildenafil, Jacob's skin has vastly improved all over his body! We saw a difference within just days of him discontinuing it.  I knew that was a huge component of his skin rashes. I'm so thankful he can have a some relief from the hivey, rough rashy skin.

The next time we have to visit the cardiologist is in two to three months. Then we will follow up again in a year!  Our next trip to Seattle Children's is in later June for another swallow study and meetings with the pulmonologist, occupational/physical therapist, and surgeon. This will be the longest we have gone between visits to the hospital. We have pretty much been there at least every two weeks since being discharged at the beginning of January. Once we have the results of the swallow study, we can start feeding Jacob solids. Then we are pretty much on a maintenance plan. No more frequent visits! I can't believe we are finally seeing the other side of this journey.

This week was particularly tough with the news that a fellow CDH baby, Esther, didn't make it and passed away at 20 days old. I grew quite attached to this sweet baby girl through reading her parents' blog and Facebook page. It was the first CDH story I have been able to really follow and get emotionally involved in. It has really made me more and more thankful that we have our precious son who has brought us an abundance of joy. I can't say we are blessed because what does that mean? Does that mean other parents who lose their children are less blessed? No. What I can say is that I am so grateful that we were spared. Spared the heartache and the turmoil. Spared from a devastating loss that I'm not sure I would ever recover from. This journey over the last seven months has been faith building but also faith shaking. I have never prayed, praised, and pleaded with God so much nor asked so many questions. God works in such mysterious ways. He reveals himself through it all, even if it's not in the way we hoped or in our time, but His. I'm glad I've had my faith to carry me through these most difficult and most wonderful times in my life.


  1. Beautifully said, Katy. Since this journey is nearly at an end, I want to know... how was your trip to "Holland"? I think you navigated through it very well. WELCOME HOME!!!!!!

    1. I agree! "WELCOME HOME!!!!"

  2. Hmmm...that sounds like a whole new post to answer that question. Coming soon...