Blink of an Eye: We moved again, again, again

Thursday, February 19, 2009

We moved again, again, again

Last night, after Phil and Katy Mc came by for a visit and brought us dinner, Noah was moved out of the NICU. We are now "on the floor" which means we are in a normal hospital room. The nurse who moved us said, "we are one step closer to the front door". There are kids from age two through sixteen surrounding Noah. Kc and I will now be "rooming in" with Noah starting tonight. Please pray that we are able to sleep with all the beeps, interruptions from nurses and "cries" from Noah. Let the joy begin!!!

We have a busy day planned. Noah will have his casts replaced today after lunch and then I will give him a bath (something he LOVES). Nana is planning a visit in the afternoon as well as his eye doctor, Dr. Kelly. Add to that, several diaper changes, feedings every three hours, trach suctioning every few hours, nurses assessing Noah, as well as the mandatory cuddle time, we have a typical day at Children's Hospital.

I'll post some pictures as soon as Kc comes "home" after work. I thought our condo was small, but spending the next several days and nights in the hospital room will make home seem like a mansion. It's just like being at a noisy hotel without the room service.

12 comments:

AnonymousFebruary 19, 2009 at 1:14 PM
"One step closer to the door" is great but we'll all rejoice resoundingly when "we're out the door!" comes along.
You're all continually in our prayers and I'm so excited to meet Noah when Andrew and Vanessa are home.
God bless you all richly!
Kimberly Reed
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AnonymousFebruary 19, 2009 at 1:24 PM
How do you eat an elephant? One bite at a time. I'd say Noah is taking some big bites out of the elephant. Yay, Noah!! Happy 3 weeks, Noah!! We will keep praising and praying. We love you lots!

XOXOXO, Debbie, Fred, Avery and Evan
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AmyFebruary 19, 2009 at 2:27 PM
Sleep!!?? Sorry, new parents don't get to sleep:) Nice to hear you're moving closer and closer to home! It will be a challenge staying in the Hospital, maybe reassuring too to have some back-up as you guys continue to take-over Noah's care... plus you're right...think about how much you will appreciate being back home as one happy family.

xoxoxoxxoxox (and really, praying for a few catnaps for you tonight)
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AnonymousFebruary 19, 2009 at 2:35 PM
Hi Kc and Rebecca Plus Noah!! Aunt Sharon here! I don't know what happened to my first post a couple of weeks ago....but here goes again!! I wake up with Noah on my mind and you two in my thoughts also. I know that the Lord has so many of His people covering you guys in prayer. Just wanted you to know for sure....that all of us over here love you and are here for you. Uncle Gary is still healing from his knee replacement...but is feeling alot better. Grandma Evans asked me often about Noah's progress....sounds like things are going in the right direction!! It will be so great when the three of you get to go home!!!Talk to you soon !Lord bless you! Love, Aunt Sharon and Uncle Gary Plus Grandma Evans Too...ok...horses,goats,ponies and dogs!
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AnonymousFebruary 19, 2009 at 5:35 PM
OOHHHH! (Squealing with delight!) That is such good news! You are such AWESOME parents! His new room will allow you great "practice" for the real thing when he goes home with you. Keep up the great work! (That means you too Noah) : ) --with love, Kathy Caram
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The Dallas HighlandsFebruary 19, 2009 at 6:39 PM
That's AWESOME news! We'll be praying for sleep for y'all! And of course Noah eats well when mommy is feeding him.... he knows who he'll be going home with. Try sleeping with an eyemask - it'll encourage your eyes to stay shut when the minor disruptions are around. Wish we were closer to bring you guys a couple pair.
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AnonymousFebruary 20, 2009 at 9:08 AM
Yea! We'll continue to pray for progress! I know you are ready to have Noah home! I think this step of 'rooming in' will be a great transition to that! Lots of love from the Johnsons!! Let us know when we can bring dinner!
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SharilynFebruary 20, 2009 at 9:25 AM
That is so exciting! You sound like you have quite the busy schedule without a lot of sleep, but you have all worked hard to get to this point. I can't wait for the day you get to bring Noah home. Our prayers continue. All our love, Shari and Jeff Shaeffer
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UnknownFebruary 20, 2009 at 1:56 PM
I'm glad Noah is keeping you busy. I'm looking forward to new pictures. It's amazing how much he's grown in such a short amount of time. We love you all.
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AnonymousFebruary 20, 2009 at 3:27 PM
Hi Noah, Rebecca and KC!!! WOW, lots of KUDOS to the 3 of you for your awesome progress. Going home will be a GIANT step for all of you and how terrific it will be to cuddle and feed Noah all the time until you are strong enough to take your own bottle, Noah!

Noah, you are such a darling little guy with such courage and determination. What a blessing you are to your folks. God is watching over all of you.

Rebecca and KC, what tenderness and love you show your little one! God is very evident in your lives. What a testimonial you are to all of us. As the little student said, "You ARE Noah's angels!" He is blessed to have you as parents.

Blessings to you 3, to Nana and Papa and ALL your other Grandparents and relies."

Thanks Rebecca for sharing your life with all of us in such a warm and loving way. I too look forward to seeing the daily progress all of you are making, and that going home is very close!

Lots of love and HUGS to ALL of you!!!
Cousin Sue in Phx
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AnonymousFebruary 20, 2009 at 6:13 PM
Hey Noah, Sierra here. Wow they keep moving you into different rooms, next time they start to roll your bed, I will just keep the front door open and you can roll right out. You are a real trooper working hard at eating and growing. I am really proud of you! You need to get home soon so we can hang out together. Nana said you are coming home soon. WOOF WOOF!!!!!!! Hang in there little dude.
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AnonymousFebruary 20, 2009 at 7:49 PM
Dear Noah, Beck, and Kc,
Thank you so much for sharing your special story. We follow along everyday and constantly keep you in our thoughts and hearts. Sending love and hugs and kisses,
Benjamin, Diane, and Jeff
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The Story

Our son, Noah Stone Jackson, was born with a very rare genetic disorder called Fraser syndrome. Among his many challenges are one “hidden eye”, a narrow trachea (which required him to have a tracheotomy), an imperforate anus (which required a colostomy), difficulty swallowing (which required a G-Tube for feedings), the fusing of his vocal chords (which means he may never speak), and club feet (which are being corrected with braces). Our family is on an amazing journey together. We are learning to walk along this path that God has planned for us, trusting in His infinite love and wisdom. We are taking each day (or each moment) as it comes and relying on each other, our friends and family, and our God for strength. We have a long road ahead of us filled with several more surgeries, lots of recovery, countless hours of therapy, and many trips to specialists around the state. Every day brings us challenges but they pale in comparison to the smiles and cuddles from our little man. Noah is our son, a true gift from God, and we cannot wait to see where this adventure leads.