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.

Feeling Left Behind

Katy's reflection of the first 36 hours:
Oct 27, 2011 -It has been a very exhausting ride so far. I think I have had about 6 hours of INTERRUPTED sleep in the last 48, not to mention giving birth, checking out of the hospital, moving to Children's, and pumping every 2-3 hours, meeting with family, and taking care of my sweet new baby. First of all, all the basics everyone wants to know:: Full Name: Jacob Robert, Weight: 6 lbs 13 oz, Length: 19 and 1/4 inches.

My water broke at the hotel yesterday (Tuesday) at 6:15 in the morning. We rushed to pack up and head to UW. Jacob was born by 9:30am. It was a great labor and birth. About 3-4 good pushes and he was out. They laid him on my tummy and I got to hold him while Andy cut the cord. He never cried as he could not, only made a grunt in an attempt to gasp for air. Instantly his color changed and he was whisked away as planned.  Andy followed every step of the way for the entire day. I was able to have a very brief moment with Jacob before he was transported to Children's. I was suppose to be able to leave UW with a pass that would allow me to go back to the hospital to stay the night, but unbeknownst to everyone except the most high up, UW is no longer doing that b/c insurance companies within the last week or two started to discontinue paying for hospital stays if moms left at any point. Needless to say, the back and forth confusion delayed my getting to Children's.

I spent the day at the hospital floating in and out of reality. One minute I was crying for my baby and the next I was laughing with my sisters about frivolous things like the Housewives of New Jersey. Then I would be snapped back into a flash depression of reality. My labor and delivery happened so fast and then my baby was whisked away and never heard from again, that at many stretches throughout the day it was as though it never really happened. There was a huge emptiness inside me but it was as though the world was carrying on like I was never pregnant to begin with and there was no baby. I was surrounded by my family yet felt completely alone.

About 12-13 hours later, I FINALLY got to be with my baby, and a new reality set in. One that was very foreign to me but the strange part was that Andy seemed familiar with it all and I again felt left behind. He knew where everything was and directed me as I walked the halls in a confused daze. He knew what every number on every screen meant, and what was good, what was not. He knew goal stats and the progress that had been made. He had seen every x-ray and every scan and could tell me all about them as if he was the radiologist. He was on a first name basis with all the docs and nurses and here I hardly could remember the middle name of my own son. (His middle name is Robert after my father). He had made arrangements for where to stay and made contacts we needed for the future. I was so proud and thankful to have Andy take on such a crucial role in our son's life, yet I felt so left in the dark. Now I play a game of catch-up which, amidst the lack of sleep, has felt like a game a can hardly win. That is until this afternoon.

This afternoon the nurse invited me to help change Jacob's bed linens which required one person to hold Jacob while the other scoots the blankets underneath. At first the nurse was going to do the holding but then changed her mind and decided I could do it. It was so nice just to feel the weight of my baby in my hands, to feel his bare skin, and feel life within him. I got to change his diaper and get excited about a great pee output! She taught me about suctioning and let me help in repositioning. Things that may seem so trivial, especially to an experienced mom, were special at the same time. So I walk away from today feeling like I got to "mother" my baby even if it was in the simplest ways.

Jacob has held very stable once his intubation tube was put in a little further after his arrival here at Children's. Every minute has the potential to hold a new adventure, but if he continues to do well, most likely surgery will take place Friday to repair his hernia and put his organs back in place. Lots of prayers please for stability and good stats!


  1. I totally understand the feeling of being left behind. I wasn't discharged for four days, but was allowed to visit, but my husband who was there for the transport and had been able to visit more often was friendly with the nurses and knew where everything was. Even now, when we go back to visit, I don't go visit the ECMO hospital unless he's with me. I just didn't feel very connected to that place. The NICU still feels like home though. It's such a strange feeling.

    Glad to hear everything is going so well :D

    Mom to LCDH survivor Elijah

  2. I love this post for so many reasons. First and most importantly, it sounds like Jacob is doing fantastic! Not many cdh babies on their first or second day of life are stabile enough for you to change bed linens and change the diaper! Some don't even tolerate touch for weeks!! That is an awesome sign of a special man!!! Keep fighting Jacob!
    I also love this post because it expresses perfectly what I felt as well, and probably every cdh mama feels the day of birth - left behind. I had my baby in the wrong hospital and she had to be flown by airplane that night to a hospital 5 hours away. I never really got a good look at her. I was left with a folder from the Shands nicu and a phone number to call in to find out statuses. They would not discharge me, so I could not start the drive to Gainesville until the next day. I was okay that night - I did the pumping thing, read the bro code by barney stinson (aka neil patrick harris), and called in every couple of hours. I was told Dakota was doing well. But it was the next morning when the nurse handed me a knitted Christmas hat when it really hit me that this was not fair. Dakota was born on Christmas day(more than 7 weeks early) and I realized that she would never wear the hat they just handed me, not because she wouldn't make it - I always believed she would, but because it would be so long after Christmas before I could put her in clothes. I should have been going home with a baby in a cute hat and instead I was just desperately trying to get discharged so I could get in the car and get to the hospital where my baby was being put on ECMO. Now that miss Dakota is almost 3 I realize that our journey is a special one too and while we missed out on many things in those first days, we gained a lot more special experiences as well. Many, many prayers for continued progress and good stabile days for Jacob!
    Mom to Dakota 12-25-2008
    RCDH survivor

  3. Katy,
    What an eloquent post. The whole experience is surreal, but I know you are doing all the things that you can to Jacob's mom the best way you...most importantly, loving on him!

    Stable, stable, stable is what we will keep praying for! And I hope they can do his repair on Friday!!! Let me know if you need anything! Hugs!

  4. Keep loving on him. One thing I learned in all of my research is that NICU kids thrive when nurtured, even if its far less nurturing then we would like to give them. Every touch, every word, every moment you can help him feel loved, will produce a positive psychological response of oxytocin and endorphins. You're a great mommy with an amazing husband and daddy.


  5. Katy,

    We were in the same hospital and I too didn't get to see my CDH baby for some time. It is so surreal yet real. You do feel so alone. Very happy that you were able to be a Mommy to Jacob - it is the little things we appreciate.

    Sending thoughts, prayers and Lung Function chants!