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.

Every Baby Has a Voice

Nov 23, 2011-Every parent longs to hear their baby cry as soon as it's born. Moms and dads learn to recognize their baby's cry and can pick up on it from far away. But it was only after Hazel started making cooing sounds that I realized that the special tones in a baby's cry are unique and indicative of their own special voice they will have as a child. It has been so difficult to not hear Baby Jacob cry. At times, it is even tortuous to watch him as he does but does not make a sound. A baby's cry tells a mom what is wrong and hints to how she can fix it. All we have had to go on are numbers and lines: heart rate, breath rate, blood pressure, oxygen saturation, breath volume, and tidal lines. In just the past couple of days, we've started thinking of Jacob as a "normal" baby who isn't just crying because he's not functioning properly, but a tiny human who is fussy because his diaper is wet, has to poop, is uncomfortable from laying a certain way, or is simply cold. Of course all of his needs have been met by his outstanding nurses, but when his numbers were off before it was usually for some dire reason like he's drowning in his secretions. 

Today is Jacob's Big Day!  He is being extubated from the ventilator!!! We are so thrilled at how well he is doing, but at the same time we are terrified of him breathing almost all on his own with just the help of a high flow cannula. When we first toured the NICU before Jacob was born, the nurses didn't just hand me a tissue, they handed me the whole box and told me to take it with me. Today at morning rounds they again gave me a tissue then just handed me the whole box. It was the first time I cried because of hearing good news. It is our big day as well. Today, at 29 days old, we get to hear Baby Jacob cry for the first time. We get to hear our baby's voice.

Only minutes old

11 comments:

  1. I just don't have words to say how I feel right now. I am so overcome by the feelings of love and gratitude to God and the doctors and nurses who got Jacob to this point. This is like a new birthday for Jacob. Breathing on his own, making sounds, hearing his first cry. I LOVE you, Jacob. Nana

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  2. Your words brought tears of thankfulness and tears of empathy. The Thanksgiving celebration is definitely enriched by Jacob's progress ...and your sharing. LaVonne

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  3. I'm trying to write this with tears in my eyes...and I haven't even met the little miracle yet:) This is awesome!
    -Tami-

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  4. What a beautiful blog post. I'm such a crying mess at work right now, people are going to think something terrible happened! Haha. I can't wait to hear Jacob cry. I'm just going to keep praying he continues to do amazing. - Auntie Jenny

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  5. This is sure something to be thankful for!!!! Oh Katy and Andy this news makes me sooo happy! Thinking of you all on this holiday! Continued prayers for Jacob's progress so that hopefully next holiday he will be home. Love to you all!!!
    Gina

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  6. What wonderful news Katy and Andy. This makes our holiday very special. Continued prayers for little Jacob from his great great Auntie and uncle George.

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  7. You truly have much to be grateful for this Thanksgiving. What wonderful news!

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  8. Uncle Wally & Aunt ConnieNovember 23, 2011 at 8:47 PM

    Uncle Wally and I are so thrilled and thankful to God for this great miracle. I can't imagine how hard it's been not to hear him cry or even hold him very much. I know how hard it was was Davy was in the hospital after he was born, but it was nothing compared what you and Andy are going through. This is truly a fantastic Thanksgiving for you all. Our prayers are always with you. God Bless and we love you all.

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  9. I stumbled onto your story through Dacia Berezay's Facebook page. My heart and prayers go out to your family! So many of the emotions and ups and downs are so familiar to me. Two and a half years ago, my grandson was born with hypo plastic left heart syndrome (HLHS) which means that his left ventricle was basically missing. The daily stories and pictures that you have posted remind me so much of my son and daughter-in-law's stories as they lived at Primary Children's Hospital in Salt Lake City. Our Lucas fought a valiant fight for 21 months before the Lord took him back. I fervently pray for Him to continue to wrap His arms around your family and especially around little Jacob.
    Barbara DenBoer, Clam Gulch Alaska

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  10. Dear Katy, I will never, ever forget the day that Samuel was extubated. I think of it as his birthday in some ways because it was the day he was finally able to do "normal" baby things. He wasn't so sedated, didn't have to have his hands tied away from his critical airway. He could wake up, breathe on his own and I could pick him up to cuddle him all on my own.

    I took a videotape of his first sounds - little kitten-like squeaks as he regained his voice - the most breathtakingly beautiful cries I have ever heard.

    Thank you for sharing Jacob with us. It allows me to revisit the times with Samuel that were so terrifying and difficult and glorious in their own special way. I am thinking of you as you reach this amazing milestone and praying that Jacob does well with his new task - breathing! :)

    Sending strength...
    Corinne
    Mama to Samuel, lcdh, Feb1/11
    www.samuelslight.blogspot.com

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  11. Happy Thanksgiving Rondeau family! We are so thankful today for the progress Jacob has made and we pray he continues to get stonger each day. Love you guys...The Zenner Family

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