Feb 25 update and a story about Jack

Although Jack has worked so hard to continue to try to cough and swallow on his own, PICU doctors decided today that it would be safest to intubate him to prevent his secretions from entering his lungs as the muscles in his throat continue to grow less coordinated.  So now he is resting under sedation, once again relying upon a breathing tube.  While this carries risks such as pneumonia, his neurological status was fragile enough that breathing and swallowing were getting scary- something had to be done.  While we knew that this was coming, it is terribly hard to witness.

There is still no news on the pathology report.  So, as of this moment, we are still somewhat unsure of the plan, though everyone is prepping for surgery on Thursday.

Since there is now little for me to do other than write, wait for doctor visits, and watch over Jack’s drain and his stats, I thought I’d share a happy story with you.  A story about Bonanza.

The first month of the boys’ life was definitely the most stressful period I’d experienced up to that point.  And Jack… well, he just would NOT sleep!  He wasn’t colicky, but he was guaranteed to be wakeful and fussy at the exact moment that the rest of the house was about to turn in.  We tried everything in those early weeks.  We tried keeping him more awake in the day, we tried keeping things un-stimulating at night.  We tried all kinds of feeding configurations.  We tried rocking chairs, shushing, different swaddlers, all kinds of lullabies… everything.   

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One day, John had put Sam down to sleep, but Jack was objecting to our bedtime plans, as usual.  I was with Jack- walking, swaying, singing, shushing, pleading, and finally, an hour later, very near tears. John asked to give it a try, and I gratefully handed the baby over and sat down in a heap at the top of the stairs with my head against the wall, completely played out.  I heard John downstairs walking around… and around… and around the house.  First, “You are my Sunshine” drifted up the stairs from below.  Then I heard a few rounds of “The Ants go Marching”, then “The Little Drummer Boy”.  Finally, I heard a new melody.  It went Bum-Diddy-Bum-Diddy-Bum-Diddy-Bum-Diddy-bum BUM, and Jack was getting quiet.  It was the Bonanza theme song, which was one of John’s grandfather’s favorite TV shows.  Who knows why it popped into John’s head at that moment, but it was like magic.  Jack fell asleep to it every time.  

Whenever we needed to get Jack to calm down before drinking his bottle, we’d sing it.  Whenever we needed to get Jack to calm down before bed, we’d sing it.  We’d sing it if he got scared.  We’d sing it if he screamed in the car.  We’d sing it when he needed to get a shot at the doctor’s office.  

We sang it to him all day today, too…. and I hope that I’ll be singing it to him for years to come.

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8 thoughts on “Feb 25 update and a story about Jack

  1. Dear family,
    My name is Rachael and I am a niece of Jill and Bill Gaffey (on her side of the family). I am a senior at Wheaton College in Illinois. At Wheaton, we commit to gather three times a week for chapel services where we pray and worship together as a student body. Today, at our Wednesday chapel, 2400 college students and several hundred faculty members lifted your baby Jack up in prayer. We prayed for clarity, for skilled surgeons and for peace amidst a life of anxiety. I pray that you may be comforted by these prayers as well.

    In Him,
    Rachael Cyrus

  2. Valerie Stenner

    Thank you for keeping us all updated. I love your stories!! Thinking of and praying for your family daily.

    Valerie S.
    UD Library

  3. In 7th grade, my parents bought me a huge Irish Setter named Ben Cartright…we thought he should have been named Hoss…the whole litter were Bonanza family members! I love the story of the Jack and the theme song! Glad that news is slightly better…you are amazing–full of love, strength and kindness. Many people are rooting for you who don’t even know who “my friend Ruth” is whose grandchild needs their prayers…. That circle is expanding and filling the skies like the stars at night….love to all of you!

  4. I constantly look for updates from you! I thank you for taking the time to write them and for sharing this story (and pics) when you had no other news to report. Any words from you are appreciated! I really wish I could do more to help besides praying and keeping you all in my thoughts continuously. I will continue to do it faithfully though! If you find yourself needing some distraction or someone to vent to especially when you’re at a “little to do but” time in your day or night please feel free to text, email or call me! DAY OR NIGHT-2 PM OR 2 AM- WHENEVER! I honestly will not mind if I’m woken up, I’m always struggling with sleepless nights anyways so I’d probably be up! We don’t even have to talk about Jack or anything about recent events. I’m sure I could yap your ear off with what’s going on in my life or reminisce about our childhood or something. I’d be grateful just to help you! Always thinking, praying and pulling for you all, Sandy

  5. Elizabeth Zalonski

    It’s always interesting to hear what works and what doesn’t to put babies to sleep, maybe if I had sung this song to my baby way back when it would have worked! Hope by the time you read this you will have some encouraging new. GOD BLESS

  6. John Oxford

    Great story. Waiting for Doctors and reports is exasperating. Yep, they can do it faster. I never could understand the waiting. We just got through a similar waiting issue regarding 3 biopsies Carol had performed on her for spots in her breasts. She took it well; me I could not sleep or function. Fortunately all came back very good. I remember what I used to call the weekend staffers in the hospital, LEMONS”. It fit for me and still does. Maybe you can use the term or at least have some fun with it. I look for your report each day and continue to pray for success. We used to drive our boys around the block to get them to sleep. Geez I wished they all came with directions. J

  7. Megan Oakleaf

    Love this story…one of my dad’s favorite shows too and when I bounce Nate on my lap, the Bonanza theme song takes me back to my dad doing the same thing to me. Has never had a soporific effect on Nate, but maybe that’s because I get too into it–pretending to slap the reins from side to side and so on. Ha! I love imagining your whole family singing it to Jack.

    I really wish that report would come…information always seems like power to me, and it’s so frustrating when it’s delayed and delayed and delayed.

    Our thoughts are with you and Jack each day and pulling and praying for you all. Hugs!

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