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 Day At a Time

We are ALL looking forward to Jacob coming home!

Dec 29, 2011 -Never mind the Happy New Year...we're not coming home until next week. Jacob is not doing well with his final wean of Ativan. Now he will have more doses at a smaller amount. He is doing the worst he's ever done with withdrawals. He has cold sweats, vomiting, sneezing, coughing, crying uncontrollably, an irritated & bloody nose, tremoring, hyper-sensitivity, and a gamut of other things.

Being that it's another holiday weekend, everything is shut down Sat-Mon. So even if we were ready to come home we couldn't. Before leaving we need to be trained to use his feeding and oxygen pump. The home health care can no longer do this until a discharge date is given. Then they need 24 hours notice to get supplies and trainers out to us. This is a new health care/insurance issue.

On another note, apparently Landon and Hazel are sick once again! So even though it is so maddening that we aren't coming home, I guess it's all for the best.

I advocate for my child and today, especially, I felt that I'm often passed off as a hysterical/overzealous mother. A doctor reassured me today that on the off chance that something did happen to Jacob, I will never doubt that I did my best by him and I should let go of what other doctors may think of me. That was very calming to hear.

This was written by a friend here at the hospital and strangely enough, just sums up our day in so many ways:

"Dear Doctors, as much as I appreciate everything you've done, which trust me I really really do. But when I say something is different than normal, don't come back with something like "well you know she only has one functioning lung.."... no s*!# Sherlock, she's always only had one functioning lung, I'm not new. I've been here with her everyday the past four months. I almost wanted to reply with "WHAT?! WHEN DID THAT HAPPEN". Haha. I love all the staff here, I just hate when it feels like they just send someone in to "calm me down" or something. There is no calming me down, I'm calm, I just want to address my concerns and ask my questions and get a legitimate explanation or answer. AA Dr was in here this afternoon and looked at her for about thirty seconds quietly and said to me "you know she's a miracle, right?" I most certainly do!"

One of Jacob's doctors said upon leaving today: "Well, I'm glad we're at this point of having a discussion about him getting ready to go home instead of the one we had when he came in about not surviving or going on ECMO"

The doctors have made it quite clear that they weren't sure Jacob was even going to live upon seeing his condition at birth and being admitted to Children's. I never had the dire feeling that we were going to lose him, but it is clear now just how lucky our baby is. We are thankful for every minute!


  1. Wow, I can tell it must have been a bad day. I bet you have an interesting story to tell and I'm anxious to hear it. You are a great Mom, that doctor was right. I'm sure you challenge their ideas in wonderful ways that will not only help Jacob but other sick babies as well. Mom

  2. Katy, my heart just breaks thinking of you watching Jacob going through such terrible withdrawal symptoms. I remember Samuel being at the stage as well, and I remember marching past our resident and standing in the hallway saying "I need to speak to an attending." So they might have thought me a bit crazy that day too, but they listened. I asked for a consult from Acute Pain Services at our hospital. Then I asked for another and another until I found someone who made a plan to help wean Samuel using methadone and clonidine. It was brilliant. Truly. The difference was incredible and I am forever grateful to Dr. Peter Ferrin.

    I hope that someone there is listening to you, mama. When it comes to knowing our babies, no one trumps us mommies. And when it comes to speaking on behalf of our babies, it doesn't matter how crazy some might think we are.

    Hugs to you.

  3. Katy, I've been thinking of you... So sorry to read about what you've been facing with your precious baby boy.
    So amazed you guys came to Anna's service with all you have going on with Jacob and your family. You guys are so sweet. I'm praying for calm and peace to fill you, for strength for the next step... and REST. For our Father's special touch on Jacob...
    I have something to send you - I need your RMH mailbox number. You can email me your info at helpforAnna@gmail.com (then I'll be able to write you from my personal email after that).
    Big hugs...