When God Made You

"Mommy, how did we come to be?"

"Well God made you, and God made me.
He made the stars
and He made the moon
and He made me
and He made you.
He made us each as He wanted us to be,
When God made you, and God made me."

"But Mommy, why is my sister different than me?"

"Well your sister is still like you and me,
created fearfully and wonderfully."

"But why is her lip and nose not right?"

"It's just how He made her to breathe at night.
And even though right now she can't speak
she can still use her lips
to kiss your cheek."

"But Mommy, why does her neck have that tube?"

"Because it helps her to breathe more like me and you."

"But Mommy, why does she not eat like me?"

"She does eat like you, just differently.
Like you, her food goes in her tummy
through a tube
but it's quite yummy!"

"But Mommy, why can't she stand?"

"Because she's still learning how,
come hold her hand
and help her to know
that you're right there
so that when she can stand
you can go anywhere."

"But Mommy, why is she so small?"

"Well that's just how God makes us all,
some tall and some small
and some without tubes
and some of us with,
but each of us all are a special gift
formed in His image,
each day in His book.
She's really not that different
if you take a closer look.
Because God made you and God made me.
He made the stars
and He made the moon
and He made me
and He made you.
He made us each as He wanted us to be,
when God made you and God made me."

Struggling Well

I drink a lot of coffee. It’s my jam. It’s what helps me push through the morning so that I can rock 2 PM like a champ.

My daughter told a complete stranger in the elevator that, “My mama drinks so much coffee or she can’t function.” No truer words were spoken.

When friends offer a coffee delivery, I don’t do the polite thing and say, “Oh that’s sweet, but I’m OK. Thank you for thinking of me though.” Nope. I text back, “Grande caramel latte with whip, extra shot of espresso!!” And then I know with a sense of security that my sanity will arrive in a little cup in approximately fifteen minutes.

And then my friend texts, “I’m sorry but I’m running late. I’ll be there in forty minutes!”

And I respond, “No worries. You’re good! See you in forty minutes!”

And then I secretly make a small pot and take a few sips from the homemade Coffeemate-infused concoction while I wait because I’m impatient and the struggle gets real when I don’t have my coffee. If I don’t have my morning coffee then I feel like the rhythm of the day is all messed up and off course. Even my little tribe has caught on to the fact that mama doesn’t function well without her caffeine.

This same scene plays out in my life. There are days that the struggle is too much, and I don’t struggle well because I take my focus off the cross. Where I have to honestly confess to myself as my head hits the pillow that the way I handled things was not pretty, but instead very messy.

We’re going through a crazy season and hard trial in our family these days. And the days and months are turning into years. But it’s a good trial, if there ever was such a thing. We’re thankful that God is sustaining us through this, and in this process He is revealing areas of our heart that need Him more deeply, and then cultivating a sweeter relationship with Him as a result.  

It hasn’t always been that perspective though. I have clung greatly to and worn the pages of my bible where Isaiah writes of the Lord,  

“For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts.” {Isaiah 55:8-9 ESV}

I’ve had to learn slowly that what I once thought was best for me might not match up with what the Lord thinks is best for me. I have gracefully, and not so gracefully, learned how to soak in those words and to trust in the One that loves me more than I could ever love myself, and He loves me enough to know what’s best for me.  

Because God knows the struggle is real when I’ve taken my eyes off Jesus.

To struggle well is a phrase that I stumbled upon in Lauren Chandler’s book Steadfast Love whose meaning has already nestled itself up within my being and determined itself to be a desire during this season.

These words remind me that I can rend my heart to God, and He will help me to remain faithful to Him, just as He remains steadfast in His love for me through any trial of this life. 

”For as the rain and the snow come down from heaven and do not return there but water the earth, making it bring forth and sprout, giving seed to the sower and bread to the eater; so shall my word be that goes out from my mouth; it shall not return to me empty, but it shall accomplish that which I purpose, and shall succeed in the thing for which I sent it.” {Isaiah 55:10-11 ESV}

God’s word will not return void.

There is a purpose in this and He is up to something far more beautiful than we could ever imagine.

And we can all sip our morning coffee and rest in the comfort of this promise. 

Happily Home

It's been some time since we last updated. The most recent blog post is the bleak one where we discussed all of the what ifs that could potentially come considering the condition Chloe was facing with her kidney levels and fluid balance back in February.

But God...

There are moments scattered all throughout the bible where the phrase, "But God," comes in, meaning our circumstances might be X, but God can intervene and change plans.

Chloe took a turn a couple weeks after that last post.

A turn for the better!

We tried a drug called Enalapril to help her kidney. This is a very risky little move because it had potential of not nice side effects, like tanking her blood pressure, which it did. Thankfully they gave Epinephrine to bring her bp back up, and then a few days later we got her port fixed. While we had to give her port access, it ended up quickly in her favor. She had trouble shaking off anesthesia and needed not only Epinephrine again, but also Norepinephrine. The turn for the better is that oddly enough, her kidney loved the norepi and decided to start playing nice again. Fluid starting coming off her better. Kidney numbers started doing better. We did have to put her on a hospital vent with Nitric Oxide to help bring her sats up. Normally she's on a heart med called Sildenafil to help with blood pressure and sats but we couldn't give this med because of the blood pressure issues. When we weaned off the nitric, we all just assumed she'd go back on her Sildenafil that she's been on since last June for her heart to relax its pumping. HOWEVER, Chloe is Chloe. And she kept her sats up and blood pressure good without the meds.

She is currently not on any heart medications. She is on a few types of diuretics for fluid between her heart and kidney, but is no longer needing the most important medicine she used to receive.

Praise the Lord!

And all the doctors shake their heads!

So she kept doing better. She kept improving. She weaned back off the nitric and onto her home vent. Her sats stayed up. She got to her baseline weight. She met and exceeded all of the "goals" we set for her in that care conference.

There was a scary hiccup in there to be praying about. We requested a bedside eye exam to check that off our list instead of needing a yearly eye appointment and exposing her to yet more germs at another clinic. The eye docs requested a head ultrasound. They found what appeared to be swollen ventricles. A) Damage to brain over time due to prolonged hospital stays, surgeries, low sats, codes, etc. B) Blockage somewhere, most likely needing a shunt which we weren't sure is a possibility for her. We tentatively scheduled a CT. But God had this. He was already ahead of us. The next PICU doc remembered she's a Glenn baby, and that heart surgery makes pressures change throughout the body, especially in the head. Her fontanel is always swollen, but it is not firm/hard, so he did not suspect a blockage. And she was acting like herself-not in pain or out of sorts. She's still gaining new strength in skills and development that she'd lost over time, and is starting to learn new skills, like reaching for things or grabbing things with both hands at same time. The PICU doctor suggested that while most Glenn patients have the horrible pressure changes and headaches from it, that it usually resolves within a few weeks. In Chloe's case, #becauseitschloe, we all know she takes much longer to adjust to changes and because she's on the vent, the doctor believes since her fontanel is still soft that it's still just pressures changing and something we can monitor at home and follow up later if needed. Something that became a scary, possibly end-all/stop point if a shunt wouldn't work suddenly became such a relief. So we watch and monitor.

And we brought her home last Tuesday. And she's been a happy baby ever since. 

We'll still be having a bunch of upcoming appointments, but for the most part, we're home, she's growing, she's thriving, she's cute. And we're adjusting back into our normal routines, school, nursing help, work, and all that goes with this. She gets her first physical/occupational therapy at-home session this week for the first time since after Christmas!! For now we're focusing on watching her weight/fluid balance, letting her grow and thrive, and just soak in each new day.

And a HUGE shout-out to Nurse C. and Nurse B. who primaried her for days and nights and made her a happy little creature in so, so many ways. We're so thankful for your hearts for our girl, for your prayers, and for the many ways you guys went above and beyond to love on our family while giving Chloe excellent care.

**Praise: For our new home health nurse who has been a Godsend!!
**Praise: For the fact that for 4 of the 5 nights we've been home, Chloe has been sleeping ALL night!! She's only needing suctioned a few times throughout the night or diapers, but is actually sleeping all through the night again and allowing us sleep as well. 

 

Bonus: Head over to Our Chloe Elizabeth on FB or to jodie_and_alan on Instagram to see video of her rocking it out to some music and her coming home video of smiles in the car!

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Tomorrow, March 22, is 3/22 (3 of chromosome 22) and we celebrate Mosaic Trisomy 22 peeps around the world. 

Show your love and support by wearing 

GREY AND TEAL, Chloe's trisomy colors.