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.

Here's to a New Year!

Jan 29, 2012 -Wrote this New Year's Day but never had time to edit, add pictures, and post until now:

I am so excited for 2012! We get to bring home a "new" baby and be a family again! Jacob is doing well and will get to come home on Tuesday, his 10 week birthday. We will have spent a total of 87 days away from home (17 at the University of Washington and 70 at Seattle Children's Hospital.) He has been off all of his pain medications for twenty-four hours now and seems to be handling it very well.
Jacob's looking a little skeptical about 2012!
He will go going home on .25 liters of oxygen and a feeding tube for his feedings and medications. He will have an oximeter to monitor his oxygen saturation. He has a special mixture for his feedings. It consists of breastmilk fortified with Similac for extra calories (which Jacob burns a ton of due to his respiratory issues) and a gel thickener because he is a silent aspirator.

It will be quite an adjustment balancing all of Jacob's needs and idiosyncrasies with the attention and needs Landon and Hazel require. I think we have become accustom to quiet and dim lights, very little stimulation. Don't get me wrong~there's nothing I want want more than to be home with all my babies, but being with two very energetic, silly, and noisy kiddos can be quite overstimulating when you have been so sheltered from the chaos that is parenting for a long time.  I hope it's not too much for Jacob. I hope the kids at home don't fry his nerves. After all, he is just weaned off his Ativan! We already call him Jitterbug Jacob!  I also wonder what it will be like when it comes to sibling jealousy. I'm hoping we don't have a tough time since Landon has been through it before and Hazel has never known anything but sharing her parents with a sibling.

Early on we could not even imagine coming home with Jacob away from all his monitors and pumps that gave us so much critical information about his state of health and well being. Everyone that works at the hospital or that has been through this before has said that there would come a time when we couldn't stand to be here much longer and we would just want to take our baby home and do it all by ourselves. We have arrived at that point!  We know that we can care for Jacob on our own. We know more about his needs than most of his nurses. We know his likes, dislikes, best feeding and sleeping positions, his medication schedule. We know Jacob will thrive when he is not being woken up for needless vitals checks in the middle of the day and night when he is sleeping or when he is trying to eat therefore causing him to get upset and throw up. We also know that we can push Jacob in ways that we cannot here at the hospital due to being so micromanaged by his medical team. They have done a wonderful job, but Jacob is after all a baby, not just a specimen of modern science. We are excited to treat Jacob as a little boy not a patient. We can't wait to do normal things like snuggle him in our bed and play with him on the floor. Most of all, I can't wait for us to be a family again, for Landon and Hazel to bond with Jacob as a part of our family, not a separate entity far from home. I look forward to seeing Landon to take Jacob under his wing and Hazel take on the "big" sister role. I am looking forward to everyone piling into our bed in the morning to watch cartoons and family dinners when we all tell about our day. Most of all, I look forward to hugs and kisses and cuddles from all my kids under one roof without the dread of having to leave them looming over my head.


  1. How absolutely Wonderful and Beautiful! (I am sending prayers of thankfulness... and prayers for all the energy and creativity you will be needing.)
    Hugs, LaVonne

  2. So glad you can be home as a family. I hope things are going ok with Jacob's care at home, and you are able to get some rest. Still thinking of you and praying for strength, wisdom, and peace.