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.

Another Surgery

Dec 6, 2011 -Four days ago we were so excited that Jacob had left the NICU. After many stressful days and sleepless nights we learned that Jacob has developed a condition called pyloric stenosis.

It is a narrowing of the pylorus, the lower part of the stomach through which food and other stomach contents pass to enter the small intestine. The muscles of his pylorus have become enlarged and caused a narrowing within the pyloric channel to the point where food is prevented from emptying out of his stomach.

Jacob's condition has caused his stomach to be unable to process his feedings and medications properly.  He has become bloated and vomits every several hours. At first doctors dismissed this as reflux. Jacob endured four painful and unsuccessful placings of the ND (nasoduodenum) tube by interventional radiology, but even the best radiologist couldn't get it correctly.  Still all of the vomiting was believed to have been caused by his feedings entering his stomach. Now we know that his pylorus is the issue.  

Today preparing Jacob for surgery was a different experience than his first surgery. First of all I wasn't there, as I was on my way up from home with Landon and Hazel after decorating for Christmas. Second, instead of parading down the hallway to the operating room, Debbie and Katy, walked with Jacob to a surgery pre-op unit.  They met with the surgeon, anestheiologist, OR nurses, and said their goodbyes.

By the time I arrived at the hospital, Jacob's surgery was nearly complete.  We were told that the surgery was over and we waited for what seemed like hours for the surgeon to come talk to us. Prior to surgery it was clear that Jacob would be going back to the NICU to be observed closely. After surgery, 3 of the 4 surgeons felt Jacob should continue on the plan for NICU, but the one, who happened to be the senior surgeon, said he would return to his room on the floor. Other than this news, were we happy with everything we were told about the procedure and future plans.

Katy was behind on her pumping so she returned to Jacob's room while Debbie and I went back to recovery to see Jacob.  He was sleeping peacefully and recovering well.  As we soaked in the moment and his adorable little body we noticed something that brought a smile to our face; Jacob's doctor had covered his extended incision with a Christmas Tree shaped bandage! Now that's something you probably won't see anywhere but at a children's hospital!

We spent the rest of the evening cuddling Jacob and praying that this surgery would be the answer to all the problems his little body has endured this past week.  Tomorrow the plan is to continue feeds at a very minimal amount, 2ml/hr and increasing them by 2ml/hr every six hours. At this rate he should be at full feeds in about two days.
Cuddles with Nana


  1. I am so sorry you had this other huge hurdle. I am so glad that you used your mommy instinct and got some of the answers you needed...Was this all last week or this week?? I check once a day, but noticed the dates were last week... I kinda hope it was last week and he's up to full successful feeds AND a teeny bit closer to the end goal of home... Praying hard and thinking of you often.

  2. We try to keep our post dates to match the actual dates things happen. Our next couple of posts will be back dated to the time things happened. Sorry we have been negligent with keeping up the blog. Just so much going on and so much exhaustion!

  3. Oh my gosh... TOTALLY understandable!!! I just wanted to make sure I was reading it all right!!! ;) You two totally have your plates FULL and are doing an awesome job! And the word EXHAUSTION is an understatement for what you are going through, emotionally and physically... Hang in there. Lots of people are praying for you and your family!

    Praying and hoping Jacob has had a better week this week....

  4. you can do this little man!!

  5. Saw your link through the Peppleys. Wanted you to know that I've added your family to my prayers. I don't know you, but I admire how in the midst if your own struggle you've encouraged others.... Praying for you!