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.

Leaving the NICU

Dec 2, 2011 -After 39 days in the NICU, Jacob has moved out to the general surgery floor.  It has been a long awaited event that Katy and I have been hoping for since the day Jacob was born.  It means we are one step closer to coming home. However, when the day had finally come that the doctors mentioned the floor, we both found ourselves with increased anxiety.  We had become so comfortable with every part of the NICU and were not feeling ready for the floor. Everyone has forewarned, "Oh, wait until you get to the floor" when we told them how much we enjoyed the NICU. Everyone said going to the floor is an eye opening experience and a big adjustment.

In the NICU, the nurses adored Jacob. They usually had Jacob, or at most only one other baby to care for. We knew the routines, the nurses behaviors, and where to find the supplies and answers we needed. Most importantly, everyone knew his cares, his needs, and his likes and dislikes. At first, we dreaded going to the floor as we learned the nurses cover 3-4 patients, may not be as vigilant, and they didn't know our precious boy! The rooms are spread further apart and we feared if we were away they wouldn't hear his little cry. After long talks with the NICU and surgical teams, we found our anxieties subsiding. 

This morning I woke up excited knowing that today was Jacob's big day. I attended rounds to hear from the doctors what Jacob's plans were as Katy was in Puyallup talking to Landon and Hazel's doctors to find out what has been bothering them the past few weeks. It was hard to be at Jacob's beside and making decisions alone after nearly 40 days and 40 nights with Katy's support.  I, of course, called Katy to inform her of the events, so she could feel as if she wasn't being left behind again.

Ready to leave the NICU
By three o'clock all of Jacob's belongings, including Katy's four bins of frozen breast milk, were packed under his crib.  The few nurses working today were ecstatic that he was graduating to the floor, even the NICU desk clerks were excited for Jacob. I had the same eerie feeling as we paraded down the same corridor as surgery day. This time it was just him, his crib, a nurse, and myself; no life support, respiratory therapist, nurses, doctors, or machines necessary.

Graduating from the NICU
His new home is a bigger room with a gigantic window.  Jacob (and Katy & I) will have natural light in the room for the first time in 37 days!  We'll actually know if it's day or night, rain or...well rain, here in Seattle. There is a sleeper couch, a rocker, and a TV for our comfort and enjoyment. Jacob even watched a little of the Pac-12 Championship football game before falling asleep in my arms. There is a lot more activity on the floor than the NICU has had lately. The nurses seem to be on top of Jacob's care, but seem shocked that I did most if it before they came around. Katy and I not only spent the past 39 days watching and learning everything about Jacob, but also about his basic cares.

Jacob's new home
I had a nice long talk with Jacob's surgeon, Dr. Avansino. He and his staff are very happy with Jacob's progress so far.  In terms of CDH, every child's needs are different.  Dr. Avansino has seen many cases, and at the onset of Jacob's condition he believed we would have a much longer road in the NICU.  He said time and time again how amazed he was with Jacob's turn around from being so extremely critical in those first 24 hours. He also mentioned that being on the floor doesn't ensure coming home anytime soon.


  1. What a precious gift that you have been given! He is so beautiful and blessed to have you and Katy as parents. I look forward to seeing your posts and see the most current status on Jacob. You do a great job of iflling in the little details and answering questions before anyone has a chance to ask them. I love all of you and will pray for a Chirtmas homecoming!

  2. Woo hoo!!! It is so nice to hear that Jacob is improving and out of the NICU. Even though your journey isn't over at least you are one step closer to the end of it. Stay strong and know you have many, many people praying for Jacob. Take care (((Hugs))) to you and Katy.

  3. I am happy and sad at the same time! So happy for Jacob but so sad I won't get to take care of him tomorrow. I will come visit though! Way to go Jakey!

  4. I am thankful for your exciting news! My prayers continue for Jacob's progress and the success of the new-floor step. Lotsa love and my best wishes to the whole family! LaVonne

  5. Hi Katy and Andy, so happy to see an update and to read of this amazing milestone. I remember so well the anxiety of leaving my ICU peeps and all the security I felt there after 89 days. We moved to the floors about noon and I didn't see anyone for 2 hours - quite a change from the constant care in ICU. By the time my 3-11 nurse came on shift, she found me sitting cuddling my baby and crying. :)

    One of the ICU docs said, "You will hate floors for the first few days but by the end of a week, you will never want to come back to ICU." That was about right. There is a lot more independence on floors and I worried too - but that is all good to help you transition to getting home. You have more freedom now too. When you go to the cafeteria to get lunch, you can bring Jacob with you! Bring your sling or carrier to the hospital and ask for a portable oxygen tank to be kept in your room.

    Wonderful that you've taken this step and I hope the adjustment will go smoothly. These nurses will love Jacob too! Great that you are doing so much of his care. Now let's get that baby eating so you can go home to your lovely big kids. Sending hugs and prayers to you.

    Corinne, mama to Samuel, lcdh, Feb1/11

  6. p.s. Jacob is BEAUTIFUL. Love that last photo of him snoozing with his NICU bear. How much O2 is he on now? How is feeding going (yay Katy for all that pumping!) How are your big kids?