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.

A Day of Surprises!

 
FROM KATY:
Oct 30, 2011 -It was an amazing day.  We believe the power of everyone's prayer has had an act in all of Jacob's wondrous milestones! In most CDH stories, parents are unable to touch and an especially hold their babies for weeks and weeks.  Today, just 4 days old, our prayers were answered and we got to hold Jacob!  I don't think our nurse, Jenn, was even able to complete her question when she asked if we wanted to hold him. Even though he had to stay on his little soft palette, it was an absolute gift from GOD! Andy and I were both able to hold time for quite some time, however it was not as long as we would have liked.  I'm dying for the day when I can have skin to skin contact!
One thing we haven't told everyone is there was one hiccup in the surgery.  During the surgery, when placing the bowels aside a section became kinked, cutting off circulation.  The doctors identified the issue when they noticed the severe discoloring of his bowels.  When it was unkinked it pinked up immediately.  Doctors warned us of the possible complications. They fully expected Jacob to be sicker than normal. His bowel functions were in question as well.  Much to our surprise and joy, Jacob hasn't seemed sicker. In fact after holding him, I had the chance to change Jacob's diaper again. He had a diaper full of poo! When I asked the nurse, "Is this good news?" she replied, "This is very good news!" We hope that this is a sign that his bowels have had no effect of the surgical mishap.











He had a chance to see his big brother and meet his big sister. Hazel has always called her pacifier a 'bite'.  She has been seeing pictures of Baby Jacob, and when she points to his breathing tube she says, "Baby bite?" After seeing Jacob, Hazel kept talking about her 'baby buh buh' (brother) and his 'baby bite'.

Landon also adores his little brother. He loves to examine, touch, and talk to Jacob. They spent a lot of time together, and even had a bonding moment when Jacob opened his eyes.  Landon was so cute as he said, "Baby Jacob, open your eyes, wake up.  Come on little guy, open your eyes, it's your big brother." We can tell Landon is going to protect his little brother forever.

This morning the pain management team discontinued Jacob's epidural, as it had a small leak.  We knew this was common among baby epidurals as the line was smaller than the needle to insert it. After a while, the surgery team thought it was best to continue the epidural even if it wasn't doing 100%.  Jacob seems to be in little or no pain today.

All day Jacob's Nitric Oxide (NO) level was being weaned. NO is a vasodilator that widens and relaxes the vessels increasing the amount of oxygen and blood through them. When he entered the NICU, his rating was at 20.  We are hoping by early tomorrow morning he will be completely weaned from NO.

After all of today's miracles and milestones, we hope Jacob continues progressing so we can take him home where he belongs!

9 comments:

  1. Thanks for keeping us posted on your little miracle. He is gonna have a special spirit his whole life. You two are amazing and wonderful parents and if you ever need anything that I could provide you let me know!!! You will continue to be in our prayers and thoughts. Take care and thanks for letting us be a part of your lives!!

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  2. Oh such amazing good news!!!!! The weight of that precious baby in your arms must have felt wonderful! So happy for all the blessings you are being given on this CDH journey.... Fingers crossed that you'll be on the short end of the CDH "normal" hospital stay! It sounds like if super Jacob keeps it, it'll be that way!! Hugs!!!

    Love, L

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  3. Jacob,
    I got to see you yesterday with your Uncle Ryan. You're such a handsome boy! You were so alert, looking all around. We can't wait to hold you and get some snuggles. Love you!
    Auntie M

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  4. Dear Jacob,
    I'm your 'favorite' cousin in Sitka, Alaska. I just wanted you to know how much you are loved. You have many many friends & family across the country that have been following your activity. You have the biggest fan club! Love you lots, Louise

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  5. Thanks for all your sweet comments! I can't wait for the day when Jacob is all past this and old enough to read about how much everyone loves and prayed for him!

    Katy

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  6. Amazing! It is wonderful to see Jacob with his family. I am so happy you got to hold him....a Halloween miracle! Keep healing and making your milestones. You are LOVED!

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  7. So happy he is doing so well. That is such great news. :) --Brittnee

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  8. Sweet Jacob, this is your Nana. On my birthday this year Mommy & Daddy told me you were coming into the world in November. (you came early!) It was the best birthday surprise ever! Then I began to wait for you. I could hardly wait to see you. Now, you're here and I think you are the most beautiful baby I've ever seen. I loved you before you were born and I love you now. I was there with Mommy and Daddy as they waited at the hospital for you. I saw you be born. I was there when you had your operation to fix your tummy. Even when I'm not at the hospital, my heart is with you. Right now I have to be at your house a lot of the time because I'm taking care of your big brother and sister. That way Mommy & Daddy can be with you all the time and give you lots of love.

    I haven't held you yet. The doctor only lets Mommy & Daddy hold you right now. As soon as they let me I'm going to give you lots of hugs and kisses. I did get to hold your little hand, you squeezed my finger and I will always remember that special moment.

    I'm so sorry you are having such a rough start in life. God must have some very special plans for you because everything in life happens for a reason. He can use this very hard time and turn it into a very good thing.

    You have a very loving family waiting for you to come home. Your Mommy & Daddy love you very, very much. Mommy knows just what you feel and you will never even have to tell her. She knows when you feel good and when you hurt. She'll always take the hurt away. She knew you were special before you were born. Your Daddy is very strong and he'll always protect you. Daddy is gentle too and you should try to be just like him when you grow up. Your brother Landon & sister Hazel are so excited that they have you for a brother. Your Auntie Jenny will surround you with her soft and gentle presence. She will be a good person to go to if you are needing someone to be understanding. Your Auntie M will show you how to be silly and will always be by your side if you need her. Your Uncle Ryan has lots of energy for playing ball and will be your buddy. You have a Grand Auntie & Uncle who are very wise, loving and know what will help you before you ever even ask them. There are more of us who are waiting to be with you, too many to mention and I promise you that you will love being in this family.

    Papa & Nana will always love you and take care of you any time you need us. I know lots of games and songs and how to play "pretend". We're going to have lots of fun together.

    Love, Nana

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  9. Thank you Andy, for sharing your site with your new RMH friends. Jacob is adorable I hope we have the opportunity to meet him soon.

    Trina Murphy
    (mother of Ryan)

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