Musics

While we were in the hospital we played a lot of music for Nora. It seemed to relax her, perhaps reminding her of home and her baths. Bath time is often coupled with the Heavenly Lullabies station on Pandora. One evening we had Nora sitting up in her Bumbo and put the music on for her. The very first song that came on was called Miracle by Renee & Jeremy. These are the same artists that sang the rendition of Three Little Birds that played in the background of the video I took while Norns was asleep. Now after hearing this second song by them, I am completely in love with them. Miracle came on again during a baff session. What a perfect song for her ~







Imagine how the chills ensued when I went to purchase the song off of iTunes…

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Notice the release date… Nora’s birthday… 5 years before she was “released”. {!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!}

In addition to the music, Nora got lots of pretty pictures delivered to her. Like the music, the pictures added some cheer to her hospital crib. There were three paintings in particular that we were especially touched by.

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These were sent to us by a sweet family who has been on their own incredible faith-building journey. Their son Brodie was diagnosed with leukemia in 2011 when he was just 5 years old. They also happen to live in our old house. Brodie’s mom has kept a beautiful account over each step of their faith walk to remission, over relapse, and to remission again on her own blog. With Sarah’s permission here is a behind-the-scenes excerpt about these precious paintings:


Last week the kids and I sat down at the dining room table, water and brushes and paper and bright rainbow colors spread around us, and we set to work painting some pictures for a little friend who is in the hospital. Brodie dipped his brush in the green and began creating the leaves of an apple tree. Jenna dove into the red and painted the gentle, curvy lines of a heart. I brushed water on my paper and then carefully placed purple and watched it spread. We are not quiet painters, and we talked about our friend and our hope that she would feel better and our plan to deliver some smiles. I watched as the apple tree grew and as the heart took shape, and we waited (not so patiently) for the colors to dry.

And then I looked over at Caleb’s paper.

It was every color fiercely mixed into one masterpiece. With a mashed brush in a fisted hand he added blue on top of red on top of yellow and the primary color of his painting slowly became brown.

And he was smiling while he worked.
And I smiled while he worked, because his painting was a picture of my heart, of our lives, of our story these past few years. Bold and messy and not always so beautiful to us. But a masterpiece to this Creator who stands back and smiles both at His own work in our lives and also our faith work of glimpsing His fierce brush strokes and bold color splashes among us.

Aren’t you glad that there is Someone who sees the bigger picture of our lives? Aren’t you glad there is Someone who sees not just the speck of blue or green before us but the whole rainbow that was last year and yesterday and two weeks from now and ETERNITY?

I am! (And I’m thankful for little boys with smudgy, painty elbows who are walking reminders of Truth…who paint pictures that may only be beautiful to their mommas and have no idea that their beautiful messiness was just what their mommas needed to see. :) )

Love this!!

Brodie’s painting features Nora swinging in the apple tree. Perhaps it’s the same apple tree in Brodie’s backyard that Nora’s brother and sister used to play in when they were little. Thank you, Brodie for letting Nora have a turn in it too! Would you believe that another “perfect song” came on while we were in the hospital called Apple Tree?

Apple Tree
by Justin Roberts

I am a little apple seed
Sitting on the ground waiting to be
An Apple tree, an apple tree

Everyone tells me that I’m oh, so small
And I’m never going to grow to be big and tall, big and tall
But I tell them wait and see

Cuz I’m gonna be like an apple tree.
And I’m going to let all my branches run free.
And I’m going to reach way up to the sun and open my arms for everyone

And like an apple is sweet I’m gonna be so sweet
And like an apple shines in the sun,
Shine the light* on everyone

Cuz I’m an A.P.P.L.E., apple tree
An A.P.P.L.E.

* The name “Nora” means “light”







“You are the light of the world. A town built on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.
(Matthew 5:14-16 NIV)

Keep me as the apple of your eye; hide me in the shadow of your wings
(Psalm 17:8 NIV)

Homebodies

It is so very good to be home – for everyone! We enjoyed an easy Sunday morning. Nora thinks it’s hilarious when Greta taps her head and rubs her belly ~

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It’s not even sort of amusing when someone else tries to do it. Greta has the special touch!

Daddy made pancakes and we all sat at the breakfast table together.

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There’s nothing better than long baffs!!

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And long naps at HOME ~

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Gavin & Greta spent the night at Nana & Papa’s Sunday night and were gone much of the day doing fun stuff. William was back to work finally after having been gone so long. I have to give an enormous shout out to his outstanding and exceptional employees who kept the gears turning while he was away. No one wants to be in the hospital with a very sick child, but to have the luxury of my husband by my side at every possible moment was an incredible blessing. I know Nora needed her Daddy there too. We THANK you from the bottom of our hearts for all that you do!!! You really have no idea!

Since everyone was away, why not stay in the baff for almost 2 hours trying out new hair styles and practicing kissy kisses?

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Everyone was back home that evening. Norns got some whip cream from her Brudder after the rest of us had a delicious turkey chili dinner from Nana.

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“Diss stuff isn’t so bad! I can kiss it maybe?”

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Evening cuddles while watching Gilligan’s Island. Looks like someone is getting her fuzzy hair sniffed ~

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Brudder’s turn!

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“Dis is kinda neat!”

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Hearts ~

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The kids noticed a heart on the front porch during ANOTHER day off school. Lots and lots of snow!

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That’s how God’s Word vaults across the skies from sunrise to sunset, Melting ice, scorching deserts, warming hearts to faith.
(Psalm 19:6 MSG)

Rounding A6 and Heading for Home

The first full day back on the main floor was the first day that Nora did not have a fever.

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“Doze peoples over in CICU? I’ll give dem someting to keep dem on dere toes!”

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William was given clearance by our doctor to come visit, and was also reassured that he wasn’t developing an ulcer. He was feeling much better. We were so happy to see him!

“Is? Is dat really… you… Fodder?”

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Their hearts are secure, they will have no fear; in the end they will look in triumph on their foes.
(Psalm 112:8 NIV)

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Norns got her ND tube removed, her PICC line removed, AND she got to come off of the monitors. It was so nice to have JUST the oxygen line.

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Nora was finally able to wear some clothes again! How sweet to see her in her pajamas!

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Nora had been awake and happy for much of the day with minimal napping. I had been looking forward to another semi-restful night, assuming she’d be ready for some good stretches of sleep. I insisted that William go back home to get some sleep. Norns and I did just fine the night before, and we could do it again.

“Mmmmmyeah… Well… I’m just gonna go on ahead and stay up squealing and playing till 4:15 in the morning den.”

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Yes, Nora (and Mommy) were up practically the entire night long. I was FINALLY fast asleep on the luxurious plastic chair pullout bed dreaming about shoes and glasses for some reason. (“So I have them.”) In what seemed like only a few minutes later I was being tapped on the shoulder by a nurse to let me know the rounding doctors were there. I jumped up in a semiconscious stupor and skittered over to the door to face the panel of professionals in my frumpy pajamas and floppy socks half on. I was trying to pretend that I was fully alert, that my hair wasn’t standing on end and that the light wasn’t punitively searing my eyes out. I nonchalantly smoothed my hair and listened as they discussed Nora’s current status, her medicines, their dosing schedule and prescriptions. When they told me they were okay with Nora being discharged today, I was given a sudden surge of energetic ambition! No mind that I just got 3 hours of sleep and certainly looked it — WE WERE GOING HOME!!!!

William was back on site at 8:45 AM. Discharge papers in hand, we were walking out the door 3 hours later — WITH OUR BABY!!!!!!

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“Dis is kinda different?”

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“Is dis my car???”

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There were 2 big kids and a dear baby who were pretty excited to finally see each other:

First things first, this poor stinky baby hadn’t had a REAL baff in almost two whole weeks!!!

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Naked cheekies!!!!!

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So now we are home, trying to get re-acclimated to real life again, looking about us and taking rest in our safety. We made it through that fiery inferno!!!!

“Yet if you devote your heart to him and stretch out your hands to him, if you put away the sin that is in your hand and allow no evil to dwell in your tent, then, free of fault, you will lift up your face; you will stand firm and without fear. You will surely forget your trouble, recalling it only as waters gone by. Life will be brighter than noonday, and darkness will become like morning. You will be secure, because there is hope; you will look about you and take your rest in safety. (Job 11:13-18 NIV)

This third I will put into the fire; I will refine them like silver and test them like gold. They will call on my name and I will answer them; I will say, ‘They are my people,’ and they will say, ‘The Lord is our God.’
(Zechariah 13:9 NIV)

Transferred!

This is the day the Lord has made; let us rejoice and be glad in it.
(Psalm 118:24)

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This is my sunshine ~

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Yesterday Nora took the great big leap back to the main floor. As they wheeled her little bed down the hallway, a lump formed in my throat remembering that other morning that we were heading down these same halls in the opposite direction.

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If I did not have my faith and my God to rely on in those horrifying moments, I certainly would have choked in the hellish fear of losing her. Although still terrifying, I held strong to the righteous right hand that was so graciously extended to me– strengthening me, upholding me, helping me put one foot in front of the other, to breathe.

The contrast of these two trips gown the hallway is nothing short of a miracle. How could a baby with a compromised heart, lungs and chromosomal makeup have possibly made it through a serious case of pneumonia + two other viruses???

For by grace you have been saved through faith. And this is not your own doing; it is the gift of God, not a result of works, so that no one may boast.
(Ephesians 2:8, 9 ESV)

    “God has never failed me. Even in my greatest difficulties, heaviest trials, and deepest poverty and need, He has never failed me. Because I was enabled by God’s grace to trust Him, He has always come to my aid. I delight in speaking well of His name.”
    George Mueller

Miracles get sleepy from emphatically exhibiting the intense glory of God’s mighty power. Where better to rest than in the arms of her angel on earth?

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She’s chewy!

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Nora had a very good night last night. Both she and I got some much needed rest, but we were missing William (Daddy). He isn’t feeling well again and needed some “real-bed” rest. I’m praying he doesn’t have an ulcer with all of the crap he has on his plate… (as if just this weren’t enough!)

It is almost 1:00 PM right now and no signs of any fevers. Usually they would have crept up by now. I’ve seen her heart rate actually go down into the 120s and her oxygen saturations are improving even still! Her feeding tube was removed this morning and her PICC line will be removed this afternoon. There is a new blood pressure medicine that they are monitoring on her. But for that we should be given clearance to head home tomorrow or Sunday!!!!!!!!!!!!!!

Continue steadfastly in prayer, being watchful in it with thanksgiving. (Colossians 4:2 ESV)

Thank you again for flooding the circuits of heaven with your prayers and for your encouraging words. I wish I could thank each of you personally. You have absolutely no idea how much each of you mean to us!

Nora CICU Day 7 and 8

Overall Tuesday was a good day. I had a restful previous night of sleep in my own bed. There were no emergencies that required my attention back at the hospital and I had the pleasure of seeing the Big Kids off to school.

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We even walked up to the bus stop together. I can’t usually do that unless the weather is warm enough to bring Nora with us.

I joyously did the laundry, changed the bed linens, paid some bills and went to the grocery store. I noticed that my favorite cashier was there. He is a young guy that always brightens my day. He has such a sweet demeanor. He has absolutely no qualms about discussing his faith and his great love for Jesus. I’ve had some spirit boosting conversations with him in the past. As I placed the orange juice and cat food up on the conveyor belt I told him about Nora. I asked if he could please remember her in his prayers. He assured me that he would and then perhaps sensing the urgency in my cracking voice took my hands in his, bowed his head and prayed the most beautiful heartfelt prayer right then and there in the checkout lane. So what about what anyone watching might think. This was the cue for my tear ducts to go on autoflow and I found myself plucking salt deposits off the tips of my eyelashes later in the day.

“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.”
(Matthew 18:19-20)

… even in the checkout lane.

A few last lingering moments back at home, I filled up the bird feeders and tossed out a lone remaining piece of bread for my bird friends. Three tufted titmice reminded me that every little thing is going to be all right as they stopped by for pecks of the bread.

(The third had already made his way down to the feeder)
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Shortly after I got back to the hospital, Nora’s oral feeds were given the green light to resume!!!! She saw that bottle and locked her little radar in on it. Her mouth starts moving before the bottle is even in her mouth! Cutest thing ever!!!

“Diiiiissss is what I liiiike!!!!”

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I also came back to a delicious tin of cookies! A heart-shaped chocolate chip! Thank you so much, Nila!

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After the milks and cookies I decorated Nora’s crib with love notes from home to add to the already beautiful collection of e-cards and paintings from our sweet, sweet friends.

Three good luck origami cranes strung up using a spool of thread from my Grandma’s old sewing kit.

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“My famleee n frenz loves me!”

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William went home to spend time with the Big Kids that evening, and it was his turn for a night of rest in a real bed!

Daddy and his beautiful ballerina ~

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Daddy and his big mint eating buddy ~

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Meanwhile back in the hospital, Kate R. came to love on Norns for the night.

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I attempted to get some sleep in one of the parent rooms, which ordinarily hadn’t been an issue in previous nights. Unfortunately the people next to me were up the entire night long SLAMMING doors at every possible opportunity. I wanted so badly to launch into an aggressive drum solo on the metal lid of the linen bin outside of their room at 5:45 this morning, but restrained myself… scowling at the luggage under my eyes while I brushed my teeth…

And so began Wednesday. If slamming doors is all I have to complain about, it’s a good day!

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  • Oxygen is down to 1 1/2 liters at 100% O2.
  • Lungs are sounding extraordinarily clear.
  • Oral feeds are continuing with exceeding enthusiasm!
  • Doctors are confident that Nora should be back to the main floor hopefully by Thursday.


  • The setback is still the fevers. This last one just clocked in at 103°. All of the blood cultures and urinalysis’s are coming back negative. My other thoughts were wondering about her ears. However, in corresponding with Dr. E (Nora’s wonderful ENT) he didn’t seem to think fevers this high would be associated with an ear infection. Also, during rounds this evening it was suggested that the 2 courses of antibiotics that Nora was on would have eliminated any ear infections. We did bring up the possibility of the fevers being caused by a fungal infection or perhaps an allergic reaction to the antibiotics. While possible, it is not as likely as just simply being related to the virus – the hMPV specifically. These fevers can last for weeks and are usually the last symptom to be alleviated. The healing progression starts with the oxygen saturations, then the lungs will clear up, then the fevers will end. We’ve got ✔️ checks next to the first two! That’s progress!

    The tranquil descent of snowflakes through the Venetian blinds sent forth a cozy invitation for a nap ~

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    Give thanks to the Lord, for he is good; his love endures forever.
    (1 Chronicles 16:34 NIV)

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    Nora CICU Day 6

    It is absolutely mind-boggling to think that we’ve been in the hospital for a full week now. Each day, Nora is making improvements.

    “Is it time to go home yet?”
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    I ventured back home to take care of odds and ends and to spend some time with the Big Kids. Of course, at such a time, when I couldn’t be more anxious to get home, the highway was closed. Thank goodness for the the good old fashioned ferry!

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    I arrived home before the kids were home and spent the time changing bed linens, doing laundry, and got a REAL shower!! Life’s simple pleasures!!!!

    I parked my car in the garage so the kids would be surprised when they walked in! It felt so good to squeeze them and hang out with them!

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    After dinner we played LIFE (haha… If only the real thing were that stinking simple!!!!)

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    And then we drew pictures to hang up in Norn’s crib ~

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    How nice it was to tuck them in to bed!

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    I got these series of pictures texted to me from the Greatest Daddy in the Universe ~

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    These sweet smiles alleviated any misgivings I had about being away from her.

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    Today was a good day. There were still some rogue fevers that showed up uninvited, but they weren’t anything astronomical. Her X-rays continue to show improvement and the doctors are very pleased with her progression. I loved to hear that she was squealing from her crib during rounds! She’s such a rock star – lead squealer in God’s great band! The oxygen weaning is still in the works, but we’re confident she’ll get back down to a “reasonable” level before long. Her little lungs took quite a hit and need some extra time to recover.

    God’s mighty love abounds!

    (I’m so thrilled and excited to see all of the hearts everyone is finding and sending to us!!!)

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    Goodnight from my own bed because I am incredibly blessed!!!!! Thank you, Amy!!!!!

    So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
    (Isaiah 41:10 NIV)

    YES. HE. HAS!!!!!!

    Nora CICU Day 5

    She got herself in a little bit of trouble last night and had to get mittens stuck on her hands. She’s not allowed to grab and rub at the itchy things in her nose-nose.

    Morning ~

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    Evening ~

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    Night ~

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    Unless I really stop to think about it, I have no idea what day it is, how long we’ve been here, or that a world exists outside of these hallways. Just when I start to get bitter and angry about feeling like I’ve been physically and emotionally thrown down several flights of stairs, I hear the woman’s story about her 9 month old son who is already on his 5th heart surgery… The family whose baby boy is being dismissed with hospice on Tuesday because they’ve been told there’s nothing more that can be done… The families who have lived here for not just a few days, but months. Years even… The kind and dedicated nurse whose own father is undergoing treatment for leukemia. One minute he was a successful surgeon, the head of urology here at Children’s, the next minute he’s diagnosed with leukemia and fighting for his life. I’m angry at myself for having even a smidgeon of discontent, slapped back into the reality of just how abundantly blessed I am. How fragile this fleeting life is, I marvel to my disheveled reflection in the stark bathroom’s mirror. No matter what this life brings, I trust God.

    He says, “Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.”
    (Psalm 46:10 NIV)

    The fevers have returned. Her little body fights fiercely and mightily. Please continue to pray for Nora. While you’re on the “phone” with God, if you wouldn’t mind praying for Nathan, for Samson, and for Dr. Sheldon and their families. I know they would appreciate it!

    ❤️