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.


From Katy:
Nov 10, 2011 -Little Jacob is still on the oscillator but showing signs of improvement. His CO2 levels have come considerably down and his oxygen levels have gone up. This is great news!  The doctors have been able to come down on his ventilator support, and Jacob continues to hold steady. They don't plan on making anymore changes for the night, and we will see what tomorrow brings. The cultures confirmed bacteria in his sputum, and Jacob seems to be responding well to the antibiotics. Now that we know his down slide is not due to a virus, Jacob is no longer in "isolation." The nurses are so thankful because now they don't need to put on protective gowns and masks every time they enter the room. Jacob still appears really puffy and doesn't look much like his sweet self.

Just before the oscillator
Being put on the oscillator the second time

 It is really getting harder and harder to accept that we are missing out on our baby's "newborn-ness." We are missing out on moments we can't get back. When Hazel was born, I kept asking Andy if that was it, were we done having kids. I needed to know if I needed to remember to capture every last baby moment I was going to have as a mom. When we found out that we were pregnant with Jacob, I knew it was going to be the last time. The last time to feel a baby wiggle in my tummy, the last time to experience the miracle of childbirth, the last time to hold my newborn skin to skin and feel the life within them. I love how my newborns fit so cozily in my arms, all tucked tight and warm, so small and folded. Their reflexes are muted and when all their needs are met, they are quiet, content, and happy to just be snuggled. Even at one week old, Jacob started to show signs of "growing up." He was more alert and more active. He started grasping and tugging on his tubes, trying to move his head to look around (he can't move it though because of the vent.), and (silently) crying with intent to express his likes, dislikes, and needs. Now I look at my two and a half week old baby unable to be held or snuggled at all, his NICU bed soaking up all the glory of his "newborn-ness." I watch a tube "feed" him as he gets my breast milk. I feel like I am missing out on Jacob's babyhood and I want a do-over! This is not right! This is not fair! It's not fair for me, and it's not fair for my precious baby that is missing out on all the love we have to give him.


  1. That is one of the worst parts of this whole thing. I wish it could be different for you. Maybe Jacob will be an extra calm and cuddly baby & you will make up for lost time. I had you every second after you were born and you never wanted to be cuddled. You pushed & wiggled and wanted freedom of movement! I kept dreaming of a swaddled little baby that just laid in my arms. I loved my wiggle-worm anyway. This is just pay-back. Mom

  2. I know it is so hard. My son went through this as well (a year ago) but try to remember that those machines are the reason that you will have Jacob with you at all later. And know that he KNOWS you. He knows your presence, your smell, your voice. And all these things are such a comfort to him. And, in your absence, God is holding him close. God is snuggling him. He is never alone.

  3. Praying for your little guy! For a great day today filled with improvement! It is definitely a roller coaster!
    We do miss out on a lot. Dakota is my only child, so honestly I don't even know how much I missed. I don't know what it's like to hold anything but a three week old baby for the first time (but man, did that feel special). I don't know what it's like to breastfeed, but I know the feeling of absolute triumph when my baby took a full feed of pumped breast milk for the first time. I know I missed so much and sometimes it makes me very sad, but I also know that I gained a lot too. This hospital experience, this battle, however horrible it is, it is important and life defining. When you bring Jacob home, it will continue to define you, and I think in a good way. It makes us stronger, but also much more patient and appreciative. You will never take a single second for granted, and that is a gift in itself, even though it doesn't seem like it now. HUGS!!!!!!!!!!!!!!!!
    Mom to Dakota 12-25-2008
    RCDH survivor

  4. As I read your post again I am struck by what a good writer you are. This from a Mom who said she was discouraged from keeping baby books for her other two kids because she wasn't a good writer. I think you've discovered a new talent.

  5. Katy,

    He is NOT missing out on your love. He feels it and knows when you are present. Remember it may not seem fair now, but he is where he needs to be so that he can come home with you soon. Don't get down on yourself, keep believing and know that Jacob and all of your family is being thought about and prayed for ever second of every minute of every day of every week till everything is okay and then some!

  6. I know this time is very hard, but know that Jacob feels you near and needs you. You will be surprised, as I'm sure you have been already, at the strength of your little guy. My son is a 5 month old survivor of RCDH as well. Watching him battle has been the most difficult thing my family has ever faced, but it also has given me the ability to be patient and appreciative. Lincoln is my first child, but I too felt the loss of the "newborn-ness." Hang in there though. The little triumphs make up for lost time. I promise!

  7. Hey little baby boy! Wanted you to know that you were thought of all day. We would really love to meet you but unfortunatley someone is always sick or coughing in our household and I just can't take the chance of getting you sick. Hope you are doing better today. We want you to know that we all love you!
    The Nasinec Family

  8. Katy, thinking of you and wondering how Jacob is doing. I understood your post here all too well. Yes, there are some really beautiful newborn things that you won't get with Jacob. I tried to think of how it was different with Samuel rather than just grieving all the things it wasn't. Sometimes that worked. :) Get yourself a really beautiful comfy wrap (if you don't already have one) so that you can wear him when the time comes to make up for all these lost snuggles. In the meantime, he knows you, mama, and you can drink each other in however this experience will allow. Sending strength.... hope for an update soon.