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.

Holding Steady!

Nov 6, 2011 -Things have been about the same for Jacob. He had a little setback with his feedings. Well, actually a big setback...he didn't tolerate them at all and had to have his NG tube removed. He kept throwing up and it is unclear if it is because his tummy just isn't ready or if it is the beginning signs of reflux. Reflux is very common in CDH babies and common for our other two kiddos so it wouldn't be a big surprise if that is going to be a battle for Jacob as well. For now he continues to get IV nutrition and we will try feeds again soon after his tummy is settled. He has had some trouble with the drain that has been in his stomach and it had to be replaced. It may be awhile before he gets a new feeding tube.

Happy news for Jacob. He got his chest tube out (a great source of pain) and he has been doing so much better!  He seems much more relaxed and comfortable. Not having the chest tube has allowed us to hold him more frequently. It also has allowed Jacob to lay in more comfortable positions and to be swaddled. He really seems to like laying on his tummy and being all wrapped up!

Not only have we been able to hold him, but Landon even got to also! Jacob really responds to Landon's voice and touch. You would think Jacob might get overstimulated but it was quite the opposite. In Landon's arms, Jacob's heart and breath rate slowed down into nice relaxed rhythms. His numbers were reflective of his calm sleep patterns even though he was awake. Jacob couldn't take his eyes off of his big brother. They were very happy together!


Landon is really demonstrating his big brother qualities. He gets so excited to see Baby Jacob and check on how he is doing. He sings or hums to Jacob and plays "Baby Mine" over and over again on the CD player. That is what Mommy always sings at bedtime to Landon and Hazel. Landon says it's Jacob's favorite song too. 

We are just working on lowering his vent settings and getting his lungs to "dry out." This seems like the slow part of Jacob's journey. Every day is a back and forth. Change one thing, then change it back. Change another, then change it again. It very much is a two steps forward, one step back game that we are playing. So for now we wait...wait for Jacob's blood gases to improve, wait for his tummy to settle, and wait for his ventilator settings to be weaned.


Tummy Time with Froggy Woggy (thanks to Landon!)
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2 comments:

  1. CorinneNovember 6, 2011 at 2:13 PM

    Lovely to see Jacob and Landon together. I sing Baby Mine to my boys too - sang it to Samuel when he was in my belly and sang it to myself when he was born and taken away to be resuscitated. Beautiful, comforting song.

    Glad to be following your journey and holding your new family in my prayers.
    Corinne
    mama to Samuel, lcdh survivor, Feb1/11
    www.samuelslight.blogspot.com

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  2. AnonymousNovember 6, 2011 at 6:55 PM

    Good to hear the update. Sounds like even though he has some set backs, he is doing so well! Love seeing him with his big brother! Landon is so sweet and I know that he will take such good care of his little brother. Hazel will be a little mommy too! I can not wait for the day when I can have you all over for a playdate and just hold that baby boy!!!! We can sip coffee and listen to the kiddos play while we stare at your little miracle.

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