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.