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.


Nov 16, 2011 -It's been over a week since we last updated everyone, as we feared that celebrating the ups would only bring the downs. The roller coaster has been taking several laps and with out stopping at the unloading station.  Jacob's levels had been going from one end of the spectrum to the other.  The oscillator which has rattled Jacob's body, room, and us for the past week has been removed. We are praying that the conventional ventilator will find Jacob at ease, and allow him to begin breathing on his own.

During Jacob's time on the oscillator we found ourselves hitting an all-time emotional low.  Sitting for hours on end staring at his giggling, paralyzed, almost lifeless, body, was very wearing. As Katy stated in her post Newborn-ness, postpartum-like symptoms were setting in.  Not only did she feel them, but I began to feel them as well.  There was a huge feeling of disconnect to our baby. Our baby boy who had long, skinny arms, legs, fingers, and toes became very swollen.  His extremities had become little Vienna sausages, and his face was alien like. In fact, if they would have changed his sheets or removed his decorations from his bed, we wouldn't have recognized our own Jakey. We knew in our hearts that Baby Jacob was in there listening to us talk or sing, or feel our touch.  The lack of connection through a hand squeeze or peek at his beautiful eyes, was difficult for us to endure.  This time was so difficult that we refrained from taking more than just one photo, which wasn't even him at his worst, as we would never want to take ourselves back to that horrible time.

Not even at his worst

Good news came on day seven of oscillation.  His CO2 levels fell and his oxygen numbers increased.  The chest x-ray showed significant development and fluid release of his right lung.  The surgical team made the decision to remove the oscillator and vecuronium drip (paralytic), and return to the conventional vent at higher settings. After two hours his blood gas showed minimal improvements, but stability.  This morning the team was astonished by his over night gases.  They reflected his best ever CO2 and acceptable oxygen levels, resulting in major weaning of his vent and nitric oxide.

This evening, Jacob continues slowly adjusting to his new vent settings.  His sedation level has lowered, and he has become more alert.  We even were blessed to see his blue eyes.  It took quite a bit of time to finally struggle to open them a crack.  When he would hear our voices, he would muster up the strength to open his eyes wide to see our faces. He was alert and awake for nearly two hours.  The connection that we failing to have just 48 hours ago had vanished.  Our sweet Jacob was back with us even if just for a little while.  (He is still quite heavily sedated with morphine and ativan drips.)

Opening his swollen eyes at hearing the sound of Mommy's voice
We are overjoyed, yet reserved with his progress. As silly as it sounds, we have been (and still are) afraid of jinxing his situation by telling everyone when things have a glimmer of hope for improvement. It seems just as things are going good and we tell everyone, things take a turn for the worst. For this reason, sometimes it is easier to write about the bad times than the good. Through all of this, Katy and I have relied on each others strength when one of us has wavered. By the grace of God and each other's company, we've made it through the worst week...so far. (In case of jinxing it)   :)


  1. We are amazed by his progress. He has been in out thoughts each day and in our prayers each night. Ashley and I pray for him before we go to bed. She is also happy to hear that he is doing better. Thought and prayers are still coming for all of you. Strength be with you and keep believing.

  2. He's so beautiful. Nana

  3. Don't be afraid you will jinx it. Just celebrate every victory and tell Jacob how proud you are of him!

  4. I totally understand your feelings about jinxing things. After all, I'm the Queen of "knocking on wood." But you need to be brave and share all the good things. Don't be afraid. The enemy is just playing tricks on your mind to discourage you. He doesn't want you to tell about the victories, big or small. So defeat him and be encouraged. Mom

  5. Landon came up to me and very seriously and urgently said he needs to make something for baby Jacob. He looked a little sad and worried I might say no. I could tell that for whatever reason this was a great need he was feeling. I suggested we go to the craft store and get some supplies but he didn't want to wait. He got out some construction paper, a picture of himself, a plastic heart, and cut out baby toys from the Toys r Us advertisement. He glued it all on the paper completely by himself. He was so pleased with the results and it eased his heart a bit. Nana

  6. So glad to hear that Jacob is doing better! It is so tough! I totally understand about the fear of jinxing it. Everyone knows that you never say the word "home" in the NICU when you are close to going there, for fear that things will suddenly turn and you will be farther away. However, it is interesting because during the first few scariest weeks with Dakota, I told people only the good things because I wanted everyone to know and believe with all their hearts that she would get through it. When she went on ECMO, I explained how a lot of babies do and told them about survivor stories and showed my family her good numbers on ECMO, when she had surgery, I pointed out the good findings, not any of the bad ones. It was my way of coping. I remember one day prior to surgery (Dakota had her surgery on Day 13), Dakota was still on the oscillating ventilator and I'm not even sure if I had seen her eyes yet, but I was thrilled with her stabile numbers and proud that she was maintaining good sats. I was pointing this out to my sister who was visiting and the nurse (who I nicknamed "Debbie Downer") pointed out that she was still a "critically ill" baby. I seriously could have punched her. I was so mad at her! One of the only nurses in the whole stay that I didn't like. I wanted to live in my own little world and I wanted people to leave me there. Whatever gets you through this day by day, you do. I am praying for Jacob and for continued progress!!!!!!!!!
    Mom to Dakota 12-25-2008
    RCDH survivor

  7. So extremely happy to hear he is doing better. Feeling so much emotion for you and Katy as you go through this. Still praying for baby boy every day as often as he comes to mind, and that is often! Love to you three!

  8. I am so sorry that it's been a hard week, Andy and Katy. I hope this last week is the last of the REALLY hard ones for Jacob... I pray the new vent settings continue to work and that the vent weans go well each day... He is such a fighter and SO SO cute! Hugs!