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.

The Shaker

Nov 9, 2011 -So Jacob didn't stay off the oscillator for long. He was put back on just after writing the last update. His CO2 levels continued to climb into the 100s (normal is 45-55). Jacob's "normal" is usually in the low 60's but he was having days where it was in the 40s. To see 100+ floored us! It was a very rough morning. Jacob's oxygen saturation levels kept dropping to 40% or so. Jacob was holding his breath and would turn dark purple. He was so upset and uncomfortable! The nurse and respiratory therapist had to keep "bagging" him to get him back to the 90s. It is awful to see your baby not breathing over and over and over again! It was decided he needed to go back on the oscillator but under heavy sedation. Jacob was given higher doses of morphine, ativan, and a paralytic to help him not fight the oscillator and stop trying to breath against it.


Tonight we were given a bigger scare. Jacob's CO2 levels improved with being on the oscillator but, much like the first try, his oxygen levels were terrible. Then the discussion of ECMO (heart/lung bypass machine) began. Andy and I were devastated even more than we were already. After two weeks of holding steady, we thought Jacob was out of the woods of these drastic measures. He had been doing so well, we were thinking he would be weaned off the ventilator sooner than later, and we would be moving towards coming home.

Jacob is such a tough little guy!  Even though he is on the paralytic he is opening his eyes and looking around. His heart and breath rate remain steady so we know he is comfortable. He is not fighting against the oscillator any more and his numbers continue to improve. At this point, he is not being put on ECMO, but he needs to continue in the right direction. It appears it may be pneumonia as suspected and his antibiotics are beginning to work. God's presence is all around us, evident everywhere we turn. We know God is carrying our little boy through and us as well. We ask for continued prayers for Jacob, but also for the doctors and nurses who so diligently care for Jacob. May God grant them the wisdom to make the right decisions in Jacob's healing plan of care.

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2 comments:

  1. bugbeefamilyNovember 10, 2011 at 4:04 PM

    WE are praying for you guys! See you on saturday!

    ReplyDelete
  2. AnonymousNovember 10, 2011 at 9:45 PM

    I hold Jacob and you, his Family, in my prayers. I also send short petitions like paper airplanes to God throughout the day's activities, knowing He has His arms around all of you...and Jacob's doctors and nurses.
    With love, LaVonne Carr

    ReplyDelete

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