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.


Feb 2, 2012 -Just a quick update:

Jacob saw an allergist and a dermatologist on Tuesday. Both are in agreement that it is not the Sildenafil causing his rash. The allergist thinks most likely a milk allergy. Jacob will be having blood tests to test for dairy, soy, egg, dust mite, and nut allergies. Maybe this will give us some insight. It is hard to say what is the cause since Jacob started the Sildenafil and breastmilk fortified with Similac on the same day. Hopefully, Jacob will be taken off the Sildenafil soon so we can eliminate one variable. He has been put on Zyrtec and we are using two steroid creams/ointments for his face and body. We will be doing two dilute bleach baths per week, and we are suppose to do wet wraps as well. The wet wrap consists of soaking tight fitting clothing and putting it on Jacob after a bath and his ointments have been applied. He is then put in a second dry layer of clothes. Preferably, he should sleep in the wet clothing overnight, but at minimum an hour. This seems like a cruel treatment. My babies (including Jacob) have always had fits when just their onsie was a little wet from a leaky diaper. I can't imagine completely soaked from head to toe! That will be my last resort!


  1. Glad you are getting some answers about the rash. Poor little gaffer. I always think that these babies have so much extraordinary stuff they have to deal with, that ordinary baby stuff like rashes just shouldn't apply to them!

    Hope you are holding up okay, Katy.


  2. Oh my... like you needed another thing added to all he's already dealing with! Hope he gets some relief until they figure out more specifics.

  3. Good to know you are close to answers. I have seen his rash and feel so badly for him. You are a good mommy and so proactive! Jakey is lucky! Can't wait to see him tomorrow!