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.

Aching


Dec 24, 2011 -All week I have watched family after family pack up and leave the hospital, walking toward the doors with overflowing carts of "stuff". Many more hospital rooms have empty beds. Ronald McDonald House has become strangley quite as well. Much like the hospital, families are loading up carts and leaving for home for good.  Housekeeping has been sterilizing empty rooms. I am truly elated for those families. I sense that butterfly-in-the-stomach excitement, and know how grateful they must be to be on their way home not only for Christmas, but also because it is the sign that their child is doing very well! At the same time, it is killing me that we are having to stay. The hustle and bustle of so many people moving all at once has left me feeling an odd loneliness. It's funny how sooooo many people were able to work things out to make going home happen right before the holidays. The doctors must really take that into consideration when managing their patients' care. I know they were trying to make it work for Jacob too, but his little body is fighting the medication weaning just too much!

Lately, I have been aching to go home. I haven't been up til now because I couldn't imagine Jacob anywhere else but the hospital. The thought of being out of the hospital was way too scary! But I really believed I would be holding my baby at home on Christmas morning. I imagined just glowing with the love of my kids and family around me and the enjoyment of seeing the kids so thrilled with their new presents. I could see myself sitting in my chair and soaking in the chaos around me just thankful to finally have Jacob home and to be a family again. Instead, we will have Christmas at home and Jacob will be alone at the hospital. I dread it will be tortuous thinking of him by himself not feeling good. Nurses have offered to come and visit and even some friends we have through Ronald McDonald House, but it's not the same. I just keep telling myself that Jacob won't remember this Christmas but Landon and Hazel will. They would remember the Christmas Mommy or Daddy was at the hospital with Baby Jacob and how they missed one of us. Landon has always felt strongly about us being "all togedder." This has been hard on him and I want him to feel so important and not pushed aside second to Jacob's needs. I know that is how it must feel for him sometimes and he has been such an amazingly understanding little boy! Everyone told me God had been preparing my kids hearts for this tough time we were going to be going through the last couple of months, and they were right. God has granted them understanding beyond their years (or development) and has given them the strength to endure it all (separation, jealousy, loneliness, patience, etc.) I am so thankful for how well they have been able to handle it all. I have to give credit not only to God but also my selfless parents who have moved into our house and raised the kids for all these weeks away. I would be a complete wreck if we had to try to balance all the stress of Jacob's roller coaster journey AND the other two little ones!  I don't know how people do it.

We feel Jacob is just about ready for to move home. He has to work on getting off his medications and possibly the oxygen (all though that's not absolutely necessary.) Now I have to start thinking of getting prepared at home for a "new" baby! I am quite unprepared!

As a side note, if I had to stay here a million more days I would just as long as I knew I was going to be bringing home my baby. In light of some families' stories, I am thankful to just have Jacob and know that someday I will go home with him. It is not lost on me that I am very blessed to have my sweet child alive and doing well, and although I ache to go home, my heart is aching more for those who have left without their child.

Nana rocking Jacob on Christmas Eve

2 comments:

  1. My tears are falling as I empathize with your aching. We all know how important it is for you loving parents to celebrate this Christmas with Landon and Hazel, to strengthen and bind the family for Jacob's arrival at home soon. And even though we know that a baby's sense of 'time passing' has not yet developed at Jacob's age (so "waiting" for Mommy is not pronounced,) a mother's sense of separation is intensified. So separation must border on 'suffering' for you parents. I am praying that your family can relax and revel in the celebration of Baby Jesus birth with your family... while caring nurses or friends hold Jacob for you for this little while.
    Holiday Greetings and Love, LaVonne

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  2. As I read this post I have many emotions going through my mind & heart. Frustation that I'm so far away and would love to be there with Jacob while you spend this day with Landon & Hazel; sadness that Jacob has to go through the withdrawal process; anger because children shouldn't have to go through hospital stays and happiness because next Christmas will be so much more special because everyone will be together! Be strong, keep your faith - we'll keep the prayers coming and hopefully everyone will be home for the New Year! Love to all! Louise

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