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.

Little Fighter

From Katy:
Nov 9, 2011 -Jacob has not been doing great for the last few days, and Andy and I felt like something was amiss even though everyone reassured us things were fine. Well, finally his blood gases were consistanly trending in the wrong directions and the doctors became increasingly concerned too. It is unclear what is the matter, but after a gammet of tests, it looks as though Jacob possibly has pneumonia or some other infection. He was put on the oscillator last night in the hopes of improving his CO2 levels (which had been in the high 70s) but instead of improving, they went up into the low 100s-the highest they have ever been. It was decided the oscillator was only making things worse, and he did the best when being "bagged." So he was put back on the conventional ventilator but with major vent setting changes. The change to the oscillator was very hard to accept at this point in Jacob's journey. It is more common for babies to need the oscillator early on. After 2 weeks of holding pretty steady, we felt we were going to be able to escape the more invasive and scary machines. We feel like we are losing any headway Jacob had made, and in some sense, we worry that CDH may have a stronger grip on our baby than we had thought. That scares us to death! Jacob is on antibiotics again and there have been some small CO2 changes in the right direction. He will also be getting a small blood transfusion to help boost his oxygen levels and help flush out fluids he is retaining. Hopefully, we will see some positive changes by this evening.

My sweet boy looks so terrible. He is very puffy, his face is cringed (despite the morphine and lorazepam), and he just looks "sick." He even has an IV in his head. It was torturous to see his little boddy rattle with the oscillator but is no easier seeing my tiny boy just lay there huffing away fighting so hard to breathe on his own with the ventilator. Such a big fight for such a tiny human.


  1. Praying for all of you. Such scary times and reading this brings back so many horrible memories. Hoping Jacob can get to a place of rest and upward trends quickly.

  2. I'm struggling with the need to be at the hospital even though I can't be of any use there. It's torturous to be home while he's so sick. Even though I knew in my mind that he could have some very sick times, I never accepted it in my heart. For the first time since he was stabilized at birth, I'm scared. Katy & Andy, I know how agonized you feel and can't think of any words to comfort you because there just aren't any words when your baby is so sick. Just keep breathing and this bad day will pass and I pray to God that tomorrow will have some answers. Mom

  3. Praying hard for a better day today and a more restful evening w better blood gasses... I hope the conventional vent w different settings and the antibiotics, will help him recover from this yucky few days.. Hugs and lots of prayers!
    Love, L

  4. Katy, our Samuel had pneumonia twice and it slowed him down for a bit but did not break him. Hold tight, mama. These babies are tougher than we are. Praying for you all.
    Mama to Samuel, lcdh, Feb1/11

  5. Tears is all I have. I am deeply sorry for everything Jacob and you are going through. Prayers are with Jacob. Prayers are for Katy and Andy...keep believing.

  6. Katy and Andy,

    We wish we had the right words to say during this difficult time. We are praying, the kids are constantly praying, and family and friends are all praying for Jacob. We pray also for strength for each day for you both. Love and hugs to all of you and extra special prayers for Jacob tonight! Love, The Grobler Family

  7. We are praying...
    Stay strong and keep fighting Baby Jacob. We are praying that with this one step backward, he will take two steps forward. Love you guys...
    ~The Zenner family

  8. praying for healing and strength and wisdom and guidance and peace that God is healing your precious baby..

    Jackie Jones

  9. The big setbacks are so hard but know there are MANY prayers coming his way that he will be back on track quick! Praying this bump in the road is overcome quickly and will be moving forward soon!!

    Shelly M.
    Grandma to CDH Angel Jayden Gilbert

  10. Good Morning Jacob, I'm thinking about you today and praying that you are getting stronger & better each day. You are a strong fighter and come from 'strong family fighters'. I can't wait until you are safely home in your own crib, playing with your big brother & big sister and playing tricks on Gramma Debbie! Love you! Louise