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.

Tongue Tied

Feb 3, 2012 -Jacob has always been quite tongue tied meaning the skin underneath his tongue was tight and limited his tongue movement. Today at Seattle Children's, he had a frenotomy in which the doctor clips the skin under the tongue. It was a very simple procedure. Jacob took a bottle immediately afterward. The bleeding didn't last too long...at first. It seemed to stop but then started back up again about thirty minutes later. This evening Jacob had a throwing up incident (nothing unusual) and it really started bleeding again. Now every time he cries, it starts to bleed. I was under the impression that it would stop soon after the procedure and that was that. Obviously not for Jacob. If he continues to bleed I guess I will have to call the doctor. He tends to be a bleeder. When he was in the hospital and would get his heel poked for blood draws, sometimes getting his blood pressure later on his leg would make his heel start bleeding all over again...we went through a lot of blankets and socks. I have to say, the tiny bit that Jacob could stick out his tongue was precious. He made little movements that were so sweet. His tongue appeared more dainty. Now his tongue has full mobility and he is enjoying exploring his mouth and hands with his tongue. That's very sweet too, but I think I will miss the tiny seeming tongue with its gentle little motions.

Jacob taking an oxygen break after his bath. This is about as far as Jacob could get his tongue out of his mouth prior to his procedure.

Jacob also had a huge blood draw today (took two lab techs, three pokes, and 7cc of blood!) The doctors are testing for all sorts of allergies. Hopefully, we will have some answers by the end of next week. His skin is looking much clearer though. The steroid cream seems to really be doing its job! We did our first dilute bleach bath last night. Then lathered all up!  I can't bear the thought of wet wraps, so unless Jacob has an unmanageable flare-up, I'm going to hold off on that. Jacob also took a little unauthorized oxygen break during his bath. He seems to do pretty well. We tried this earlier in the week just to give his weeping skin a break. We put him on his oximeter then, and he stays around 97-100% oxygen saturation. Hopefully the doctors will approve daytime breaks soon so we don't have to be tethered to one area of the house.


  1. So glad the tongue procedure was simple; hopefully the bleeding will subside. Isaac has that, but they didn't ever cut it - the doc thought it wasn't bad enough, and said it should break on its own eventually (yuck). And good to hear his rash is improving. That would be so helpful for you guys if he doesn't have to be on the oxygen constantly. He is so cute!

    1. Andy is tongue tied a little as well. It never broke for him and can be uncomfortable. Jacob's was so significant that I was worried about it affecting his speech someday. I'm not sure it would have, but I figured we might as well take care of it before it becomes a problem. I think the clipping has already helped Jacob eat easier and hold his paci in better. :)