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.

Pleasant Surprises!

From Andy:

Nov 19, 2011 -The last few days have been absolutely amazing.  Jacob has been successfully weaned completely from the oscillator! He is currently on the traditional ventilator once again. Jacob's great change in condition has been better than the doctors anticipated, which has them perplexed once again! His nurses are in awe as much as the doctors, and we are tickled pink! He definitely is a strong little one for only being 25 days old!

All of Jacob's blood gases have been amazing!  His pH continues to be well above 7. His CO2 remains low and in the 40s, and his oxygen rich blood is in the 150s+! His nitric, which has assisted with the circulation of blood and oxygen flow, started at a setting of 20, and now is down to 1, with a strong possibility of being completely weaned by morning. That means less tubes, and one less machine! His ventilator settings have continued to be weaned as well.  They are lower than they have ever been.  His oxygen support is at 30 breaths. He has become quite a strong breather, as he is significantly overpowering the vent with a breath rate 60 and higher. There is a strong possibility, barring any setbacks (had to say in case of jinxes), that he may be off the vent on or before Thursday. That would be a wonderful Thanksgiving Blessing!

He started feedings again at a very minimal amount, 1.5 mL/hr. Today when we returned from a little outing with Landon, he was up to 7.5 mL/hr. This evening he was moved up even more to 9mL/hr! That is still a very small amount for a newborn (just short of two tsp/hr), but it is being increased steadily, as he seems to have no problem digesting the nutrient-rich breast milk. We are so thankful he is able to continue feeds. Now our skinny little Jake is getting bigger due to healthy feedings, not retention of fluids!

Another wonderful surprise for us the ability to hold Jacob again so soon after being removed from the oscillator. He has tolerated, and actually is more calm, when being held.  Katy, Landon, and I have been sharing Jacob the past two days.  Katy and I hold him as much as possible to make up for lost time from the past week on the oscillator. We've been taking turns spending time with Landon at Ronald McDonald House and with Jacob at Children's. Tonight as Katy was over at the hospital holding him, he was more awake and alert than ever. This is just what Katy needed after last week's lows.
 Landon loves his little brother so very much.  We love watching the two connect.  It's amazing how well, Jakey responds to Landon.  We can count on Jacob opening his eyes nearly 100% of the time that Landon talks with him.  Landon loves to hold his newborn baby brother. Today, Bugaboo and Jakey even bonded during some playtime, as they shared some Lego Star Wars guys!
Notice the Lego guy in Jacob's hand!
Not only does Jakers get love from us, but his doctors and nurses adore him too!  Tonight our nurse, gave Jacob an extra long cuddle as she transferred him from my arms to his bed.  She talked to and hugged him. It was evident that she would have been perfectly content to hold him for a while longer. His other nurses and doctors come by even when they're off his care (or even working in another unit/floor) to see how he's doing. What love!

There is still a lot to be done before we can leave the hospital. Slowly, but surely, we're closer to getting our Christmas wish granted as we take it One Day at a Time. We can't wait for the day to come home and share Jacob with our friends and family.  Thank you everyone for your continued love, support, and prayers for Baby Jacob!

4 comments:

  1. Oh wow!!! Your post brought tears to my eyes!!! I will pray for continued great days and that Thanksgiving miracle of extubation!!

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  2. Tears again...but happy ones! What wonderful news to hear and we'll continue to pray for your Thanksgiving miracle and your Christmas wish. Believing and achieving!! Lots of thoughts, prayers, and support!! Ashley says, "He looks so cute. I want to meet him!" I told her one day when he comes home we will have a play date!! Take care!

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  3. We are rejoicing with you! And we are grateful for God's power and love. Our prayers continue.
    Love to your family,
    LaVonne Carr

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  4. Although we haven't met your family, we are sending prayers your way for continued strength for your beautiful son. God's continued blessings for your family - The Snows

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