Transfusion

Transfusion

On Weds Noah had a blood draw, and his hemoglobin had dropped to 7.2.  By Friday he was so lethargic that he was desaturating, not nursing well, and his “awake time” was spent laying limp.  I called Friday, and they determined he needed a transfusion.  After spending much time on the phone,  it just wasn’t going to work  to have it done in Mankato (frustrating!).  Saturday he would have a transfusion in Rochester.

Meanwhile Dave and the boys had a parade on Saturday.  I was so sad to be missing it as it is an important campaign day.  My sweet friend Carol gave up parade day and played valet for us.  She’s the best!

After the transfusion, Noah had the most energy ever!  He was hungry and busy, and I happily stayed awake with him most of the night:)

 

Perfect

Perfect

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.

Trust

Trust

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.

Just Noah

Just Noah

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.”

 

Noah hat

 

https://www.facebook.com/pages/507-Photography/593204720762170?sk=info

1 month old!

1 month old!

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.

10359172_10152153132038388_1080927404152818294_n  Noah not happy about his 1 month pictures:)