There’s Hope in Progressive: Noahs Journey

Today was an awesome day in PCU! It seems like everyday is awesome as we are blessed with his love and presence, but today in particular. We might be getting close to the light at the end of the tunnel.

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My mom sent me this photo today <3 I just wanted to thank the FUMC China Grove family we have for this beautiful rose in honor of Noah Gabriel Eagle. The rose is like, the perfect flower. Of course. Noah was picked perfectly for us as parents. But, a rose symbolizes the love and beauty within something: our case, relationship. It’s thorns represent heartache, pain, and hardships. Honestly, in our situation, we couldn’t love him more & and his beautiful miracles he fights for daily. Plus, we have plenty of thorns from walking out the hospital doors without him to the physicals pains he faces fearlessly. So thank you. Thank you for thinking about us, praying for us, and setting out a reminder for everyone of his beauty and strength <3

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The good news:
– hopefully he can go home end of this week/beginning of next week!!!!
– he needs to gain weight to go home. He lost 25g from yesterday to today. Nothing to worry about, but that’s not getting him closer to going home.
– he must keep his body temp. It’s been 97.5 every time I have taken it. They prefer it to be 97.9 or higher but as long as it stays there or goes up and doesn’t continue dropping, we are good.
– they did his second ultrasound post-op. He is diagnosed hydrocepahlus, not hydroanceohaly (yay!!!) but we are waiting to hear back from neurosurgery about how his shunt placement is working out. This will also be the biggest factor in his go-home dates.
– weve registered for the CPR and baby care classes as steps to going home.
– doctors believe now (they don’t consult neurosurgery until Wednesday morning for this) he won’t be needing oxygen or an apnea machine to come home with. They believe he’ll be cord and hook-up free!
– we will be having in-home therapy (physical, occupational, and possibly speech) starting next week anywhere from 1-3x per week per specialist. This will be his hugest resource developmentally.

The bad news:
– he did not pass his hearing screening. The audiologist believes he can hear something, but with the fluid buildup still so heavy, he cannot make an accurate assessment as to how he processes what he hears. We will re-screen in about two months.

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^^ still fighting! His incision site, heart/breathing cords, and belly button 💝

Thanks Uncle John, mawmaw and pawpaw for visiting!

Also, an excellent nurse from NICU came by Progressive tonight. I suppose just like his older sister, Noah is much too sweet to not be favorite baby 😂😍 Thank you, Lindsey!

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She came by just for him to being him a prayer bear. His dog came attached with a Bible verse to keep him strong… Always a hug away <3

Tonight Josh and I also made a video for Kara. The nursing staff here gave us a gift for Noah to give specifically to Kara. They thought it was so sweet she knows he’s sick and she talks to and about him. When they found out she cried when he wasn’t in my belly, they made him this to give to her so she could take care of a sick baby too! <3 I love people who care!

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The video

Previous Posts about Noah:
What is Wrong with Our Baby Boy?
Baby Boy Eagle Has A Name! He’s Born!
My Two Day Old Warrior
Totally In Love, Noah’s Improving at 5 days old
Noah’s Moving On Up

2 Comments

  1. Mehmet

    God allowed me to find out beofre her birth that she had DS. He touched my heart and prepared me during my pregnancy for the gift to come. I could NOT WAIT for the day to meet her! I would not change one thing about our lives. She has brought me so much laughter, joy and wisdom. Her name is Athena, the goddess of Wisdom, and she has taught me more than she will ever know. I always tell people that she was brought into our lives to teach us what TRUE unconditional love is all about. True connection to Heaven to have this lesson right beofre our eyes!

    Reply
    1. freshlymessy (Post author)

      What is DS? Down Syndrome? Its a huge load to carry, but certainly not the type of burden most people expect.

      Reply

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