Friday, July 3, 2015

Summer in the City

Our summer home. KC. Kansas City. I'm not a city girl. We're not a city family. But this place is growing in our hearts because it's home to the amazing Children's Mercy Hospital & Clinics. Our beacon of hope and healing for Chloe. 

She got a PICC line place a few days ago. That was kind of our weight that tipped the scale towards stay here. That, and needing close to two liters of oxygen nearly all the time, means for now, we're staying put and waiting to get on the heart surgery schedule. Current plan is to continue to work on increasing feeds s l o w l y  but   s u r e l y  as tolerated. To hope to stay low on oxygen, but of course give what is needed. At times she's needed more oxygen, other times can wean to room air for a couple of hours. She's stopped throwing us as many curve balls these last few days, and is feeling much better. She's on a new medicine that's {hopefully} relaxing her heart and lungs because her heart is so tight//tense//won't relax, and this drug is mainly used after the heart surgery for kiddos whose hearts won't relax during healing. For Chloe we're trying this up front before the surgery, and so far so good. We're keeping a VERY close eye on her blood pressure as this drug can lower it, and she's already on a bp med to keep bp lower, so watching this like a hawk. The tentative plan is for the heart surgeon to swing by and take a look at her sometime next week and then decide how soon {or later?} she needs this shunt replaced and can get scheduled...or another question is how long do we let her relax on this drug before replacing the shunt. 

In other words: We wait. 

We be still. {Psalm 46:10}
We stay put and let Him lead. {Proverbs 3:5-6}
We watch and pray. {1 Thessalonians 5:16-18}
We trust that God has a plan in this and we learn to wait for His precious and perfect timing. {Isaiah 55:8}

Oh, and we snuggle. She's feeling good enough to hold again, and I got to rock and cuddle last night for over two hours straight! {Though there was a lot of suctioning while in Mama's arms}. 

What does waiting look like?

It looks like Daddy working by her bedside during the day, helping to suction, talk with docs during rounds, and giving input on things like if we think she could benefit from an albuterol treatment or help decide if she's in any pain, or to talk through game plans. 

It looks like me and the kiddos spending daytimes with friends in the city who used to live in our hometown and are loving the opportunity for our kiddos to play together and to catch up on life. It's a brief escape for fresh air and stress free living, though Chloe is a heartbeat and thought away at all times. 

It's family dinners in the Ronald McDonald house, then bedtimes with Daddy while I take night shift with Chloe, helping to give bath and do trach care and tuck her in for the night. 

It's learning to balance time by Chloe with family time as the four of us. It's learning to parent, to balance work and lives and bedside. It's homeschooling from the hospital room and a few family outings. 

Like this one. 

He leads us beside still waters. Not the Lord in this case, well, kind of...but our son. We went off the beaten path today and found a nature walk/hike out from the city a bit. We parked, hopped out, started on our trek down to the nature center so Mommy could use the restroom first, only to find that it was closed for the Fourth. If only I hadn't had that Diet Coke on the way!! We found the restrooms just outside...but they were locked. And the lizard that scurried under the door made me not exactly excited to go waters in that particular restroom, but it didn't matter...because it was locked. 

At the beginning of our walk. As you can tell, those are thrilled kids there. And my thumbs down was because the Daddy was making us go walk and yet I STILL hadn't found a restroom. Held some high hopes for an out house...

Our fearless leader. Seriously. He was awesome. We learned about maps, legends, what a compass is. He was great! {Note to self: Check off today as school day: science and social studies}. For real though, part of this crazy summer is all about parenting these littles through so much that not many littles experience by this age. Poor dude has been in a funk the last few days, cranky, learning his world is not the only one and us having to have many heart to hearts. But today was different. He was awesome. He was fun and happy and led us and was not scared of anything. We were proud of the leader that came out in him today. 

"OK guys. Now. This map says there are wolves, spiders, snakes, and mountain lions. It's OK though. They'll just jump out and scare us. Then bite us. Then eat us. Then roar." 

Other fun one liners:

"Don't look guys, Mommy's going waters in the woods."

"Spider web!"

"Tree! Duck!!"

"Isaac, slow down!"

"I can hear civilization." {The highway was just around the river bend and we could hear the cars rushing by}. 

"I'm going to my happy place and getting a frappucino after this. And Icee's. You guys want Icee's? I need air." {Normally I love nature more than anyone in the family, but something about the mud and the spider webs and the glistening on my skin and the fact that I didn't wear the right shoes because I didn't know we'd end up on the Oregon Trail today...when I had in mind a nice WWI Memorial the whole family would enjoy...}

"Oh look, another creek to cross."

"Slow up there, Clark!"
"My name isn't Clark, it's Isaac!"
"Yes, but today you're an explorer, so you'll be known as Clark." {Explains what explorers are and who Lewis and Clark are}. 
"No. It's ISAAC."
"OK, Lewis."

"You guys enjoy your snack. I'll just stand here on the path where I can see the snakes coming."

"Isaac, SLOW DOWN!"

"I miss Chloe."
"Me too."
"I can't wail till the day we can bring her along on these adventures."

"Isn't this fun!!!"--the Daddy
"Spider web!!"--the Mommy

"OK buddy, you have a choice to make. The trail can either end here, and we can go get fresh, cold, delicious Icee's. Icee. Icee. Icee. Think Icees. Or we can go that way for another mile."
"We can be done. Let's go get Icee's."
"Good choice, son."

I think Abi was the least amused by the day. And we were covered in mud by this point. So we went to Target to buy $2 flip flops for the whole family so we wouldn't track in fresh mud all over the beautiful new Ronald McDonald House. As payment for leading us all astray into the woods, Alan will be scraping all the mud off our shoes this weekend. 

I think the heat got to him. He seemed to think this hat looked good. 

We took a pic in our flip flops when we got done. We added Chloe's shoes so she could be in the picture with us, even though she was in her room at CMH napping and harassing her nurses. She's a part of this family every single moment. We think of her Every. Single. Moment. when we're away. She can't get rid of us that easily ;). We're in this as a family. And one day, we hope she can join us on another fun hiking adventure. We're patiently waiting for heart surgery, and the hope that it will enable our baby girl to thrive. 

Oh, and the little girl in the pic above, she was doing the need to go waters!!! dance. We had one shot for this pic before she bolted for the restroom before she watered nature like her mama had to do. 

Will be getting this memory on a canvas to put above our mantel each summer season. 

{"Hun, can you look at my neck? It feels weird..."}
{"Oh yeah, you have like fifteen bug bites all in one little area. It's like a bug got stuck in your shirt today."}
Seriously. Next time I'm not letting him choose the place unless we're fully prepared with bug spray, old shoes, and a few flares. 

Prayer Requests:
--Alan goes home this weekend through next weekend. Please pray for safe travels for him and wisdom for me as I navigate taking care of the kiddos plus time by Chloe. 
--Wisdom for Chloe's doctors as we try to narrow in on a surgery date. 
--For this new heart med to continue to help her feel better and her heart to relax. 
--For His will to be our will. 
--For wisdom and patience in parenting on these long days. 


  1. Thank you so much for sharing your life with us! Such a blessing to see God's glory living out through you all. Praying the prayer request and for the older kids as they learn to navigate the waters of life :)