by Courtney Kruse | Jun 28, 2014 | Blog Posts
It is easy to get stuck on thinking Noah is not perfect like the other boys. To know that he won’t achieve the same things the other kids is the hard reality. Against my own willpower, I dwell on his less than perfect future.
13 For you formed my inward parts;
you knitted me together in my mother’s womb.
14 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well. Psalm 139
There’s a song on the Hide ‘em in your heart album that quotes these verses, and ” I praise You, I praise You, You knit me together in my mothers womb.”
Kids music is constantly playing in the background in my head, and this song was on repeat in my head today. It wasn’t until bath and bedtime that I started to sing it to my kids, explaining what those words meant, that I heard those words myself.
God made Josiah the same way he made Noah. The care and attention to detail was the same. Those tiny wrinkles above Noah’s left eyebrow when he scowls took the same planning as the shape of Calvin’s pointed ears. So I praise Him, I praise Him, He knit Noah together in his mother’s womb.
Let my mind dwell here!
He is resting on my chest as I write, tiny puffs of air tickling. His fuzzy clean hair tickles my cheek as I nuzzle him. His hand is open on my skin touching as much of me as he can, reaching to me for comfort. Thank you, God! ” I praise You, I praise You, You knit me together in my mothers womb.” My heart fills as I praise God for His PERFECT little masterpiece.
by Courtney Kruse | Jun 24, 2014 | Blog Posts, headline
In the last several weeks they have had to do extra bloodwork as we are watching Noah’s hemoglobin go down. Hemoglobin is at 7.6, platelets and immature white blood cells have stayed almost exactly the same for the last several weeks. He has had some sleepy days where he has a hard time staying awake long enough to eat.
Without realizing, I had grown accustomed to improvement, so hearing this news has been tough. “What if…” interrupts my thoughts. Can I trust God even if my baby needs to be treated for Leukemia? The answer is the same as before:
Almighty. The Almighty God who established time, and ordains all things and works all things (all things!) for His glory and my good is with us. Almighty God who had planned all and knew all, is with us through all.
Learning to trust.
by Courtney Kruse | Jun 15, 2014 | Blog Posts, headline
During our stay in Rochester, a friend of ours gifted us a newborn photography session for Noah. This the perfect gift as all of our photos from the first several weeks of his life were taken on our phones, dim and blurry.
On Noah’s 6 week birthday Liz brought arm loads of studio, and took amazing pictures right here in my living room. She gushed over the sweetness and the cuteness of my baby, and tenderly arranged him on beautiful crocheted blankets. She recorded him. Not the Down Syndrome, just Noah.
It’s the day I saw him as “Just Noah.”
https://www.facebook.com/pages/507-Photography/593204720762170?sk=info
by Courtney Kruse | Jun 6, 2014 | Blog Posts
Noah is 1 month old on his due date today!
Right on time, he has been awake and looking at things more intently. Sweet boy has also learned how to manipulate momma and grandma to holding him while he sleeps.
I am thankful for:
My sweet snuggly baby:)
Insurance! We have gotten some BIG bills! (Did you know a helicopter ride to Rochester costs $24,000?!)
Noah is nursing better!
Big brothers who have been (mostly) gentle and loving!
Calvin wants mommy to now (instead of insisting on “Grandma do it!”)
Friends who pray and love with food!! In the last month we have hardly had to cook!
A hymn turned lullabye I have sung to each of my babies is “Tis So Sweet to Trust in Jesus.”
this is the third verse:
I’m so glad I’ve learned to trust You,
precious Jesus, Savior, friend;
and I know that You are with me,
will be with me to the end.
Jesus, Jesus, how I trust him!
How I've proved him o'er and o'er!
Jesus, Jesus, precious Jesus!
O for grace to trust him more!
Burp rags are perfect for catching tears.
Noah not happy about his 1 month pictures:)
by Courtney Kruse | Jun 2, 2014 | Blog Posts
On May 9th Noah came to St. Mary’s hospital, and on May 29th, he was discharged! It was hard to contain my excitement as we left those other mommas and their babies in the NICU.
I am so thankful for the nurses and doctors who took care of Noah. There was one nurse in particular who gushed over Noah and how cute and sweet he is. She made little signs for me in the night using pictures of Noah. She listened and let me cry with her when we thought Noah was deaf. On those days when all I could see was his DS and other problems, she helped me remember his sweet babyness. She doesn’t know how much she helped me!
We almost didn’t get to leave! We were waiting (a bit impatiently) for the doctors to come around and set Noah free. The pulmonologist was insisting we stay another few nights for some more sleep studies, as his oxygen saturations had dropped while on oxygen the night before. The neonatologist looked at the times they were concerned about, and argued that those were the times Noah was eating, and pooping, and having his diaper changed, and was confident he was ok to go home. We came home with oxygen, “just for when he is sleeping or resting” So pretty much all the time. We will have another pulse-ox sleep study in a week AT HOME!
The discharge process was encouraging. We discussed each of Noah’s “problems.” He conquered or is in the process of beating almost all of them!
We return to Mayo every month for the next year to meet with Hematology (more blood draws). The respiratory specialist will follow him as he grows out of this breathing issue. Cardiology, Endocrinology, and a Geneticist will also have appointments with Noah several times in the next year, but not as frequently.
We arrived home with lots of hugs, Noah was sung to by each boy, and I got to sing and pray over each boy at bedtime. Thankful to be home!
The Lord is my strength and my shield; in him my heart trusts, and I am helped; my heart exults, and with my song I give thanks to him. Psalm 28:7
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