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.

Things I Don't Want to Forget

Jul 27, 2012 -Life has been such a whirlwind since the new year began. I have had so many good intentions to post to the blog and thoughts of what I will say run through my mind constantly. But by the time I finally get a chance to sit down with the computer, it seems I only have enough time to catch up on Facebook comments and others' blogs then something comes up or I'm just too exasperated to write and I've forgotten all the things I was going to say anyway. So here are some random thoughts or things that I've been jotting down along the way.

There are many little things I will never forget (but this is a nice reminder just in case I do):

How things changed: It's weird to have so many people lifting you up in prayer and through phone calls, emails, and comments on Facebook and the blog, hanging on your every word. And when you are most "popular" is when things are at their worst, but as things get better the interest in your story slips away and people slip back into the woodwork. It's kind of lonely and saddening. This started happening not too long after we came home from the hospital. It is a strange thing how people are so tapped in when things are sad and scary, and like a soap opera, they can't wait for the next episode. I know it's nothing personal. It's just human nature, but it has been a good lesson for me in how I am present in others' lives during the bad AND good. There are many, many people who are still very interested in the well being of Jacob and our family and make inquiries. I am much more aware and appreciative of the effort made by others to see how we are doing and let us know we are thought of and loved. Thank you!

Stinky Blankets-Yes, most people would rather forget such things but Jacob's stinky blankets were special. When he was in the NICU there were only a couple of things that were "Jacob's"-blankets and socks-the only things of his that captured his smell. And let me tell you, for the most part it was yucky, but it was MY baby's smell nonetheless. It smelled of medicine, plastic, and a strange sweat. I would take his dirty blankets back to Ronald McDonald house and snuggle up with one at night sometimes crying myself to sleep imagining holding my baby.

Jacob's Laundry
 Jacob's "cologne"-When Jacob was born he was baptized at UW in a critical infant room next to mine. I was not able to be there, only Andy. He was anointed with the holy chrism oils smelling of frankincense and myrrh. Because he was unable to be bathed, he smelled like this for weeks. Even after his head was washed, the scent still lingered. I loved kissing his head and breathing in his special fragrance. I look forward to his welcome ceremony at our church when he will once again be annointed with the holy oil. I might not give his head a bath for awhile!

The sounds of the alarms-The alarms of the different monitors and machines sound like little horns and when they all go off at once, it was like a little NICU symphony. Well, at least that's how Andy and I made light of them all. When we hear them on our videos, we always have a little chuckle and in a strange way, it is a comforting sound. I can hardly explain why it's comforting. Maybe because it is the sounds that fill the memories of having a new baby...and of healing. The sounds changed from scary to just the normal sounds of our new "home." We left the NICU on a happy, "healthy" note. I'm sure those sounds are anything but warm and fuzzy for many, maybe even most, but for us they are a good sound. We'll take whatever positive memories we can from there.

 Light and the Concentrator-When Andy and I got married, I was highly sensitive to ANY light in the room when we were going to sleep. I liked complete darkness and couldn't sleep with a single light. We had a cover for the alarm clock and I even made Andy put tape over the little light on the smoke detector high up on the ceiling. After we had Landon and Hazel, the cover came off the alarm clock because it provided just enough light for nighttime diaper changes and feedings. By the time Jacob came home, I think I could have slept with the sun itself in my bedroom! First of all, the exhaustion led me to be able to sleep in any condition, any position, and waking me was nearly impossible! In addition, Jacob needed so much monitoring and night time feedings were such a to-do (a pump, stethoscope to check tube placement, syringes, medications, etc.) that we had to have light. We also often had episodes of throwing up or choking. Needless to say a light was always on, usually the closet light. We also had a new sound to put us to sleep...the concentrator. The concentrator was his machine that pulled the oxygen from the room air and formed it into a high concentration. It was used in the home instead of having oxygen tanks. It made a slow whoosh-puh sound that soon became the essence of sleep. Even when Jacob was taking oxygen breaks, I would turn on the machine to take a nap. It became our own version of a white noise machine. I miss it a little but am over the moon to have the space back in my room. And of course, we are most thankful that Jacob doesn't require any supplemental oxygen at all!

This post is long enough so I will stop here and give an update on Jacob's progress in the next post.

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