Tuesday, November 10, 2015

Where We Lay Our Head & Home For Christmas

I apologize. I left you all hanging. It wasn't intentional, by any means. It was life.

If we skip over the last post on suffering, and read through the post before that here, about strength, you'll read how Chloe's heart cath went and what the outcome is.

The outcome is day to day. One day at a time. We've copyrighted that motto, but you're more than welcome to use it. Just say Chloe gave it to you.

The results of the cath were basically that yes, the heart is the underlying cause of the fluid, but the lungs need dried out to help the heart and if that works, then there's hope. We set two goals for her: Rest. Nutrition. In other words, time and get her to eat. But then her kidney freaked out, and we all threw our hands and the air, not in raise the roof style, but more like we give!! What's up!!? Docs stopped all diuretics till we know what was up with the kidney levels. Chloe managed to completely stump not just us, but the kidney team as well. And we were worried. But the next day...and the next...and the next....she improved. We think in retrospect that it was caused from holding feeds for cath (dehydration)+cath dye+then starting feeds (up on protein) that equaled crazy kidney day.

Because of Chloe's freak out, we added another goal, so now the new total is three goals in order to GO HOME:

  1. Full Feeds. We're trying to hone in on this one this week and figure out how many resting calories she burns and thus what she needs for calorie intake to be Chloe daily, and for her to grow. Trying to figure out a good Chloe growth chart. 
  2. Diuretics in balance. Not too wet on lungs, but not so dry that it affects her one kidney. She's showing us that she likes certain diuretics and her kidney plays well with some and naughty with others. That was a crazy week trying to get that under control, but we're nearing in. 
  3. Vent settings within reasonable home ventilator means. In other words, she's on a hospital ventilator now and we'll bring her home on a home ventilator. At some point we'll need to switch these out and see how she does with the home vent and its slightly different settings. Trying to wean her back off vent before hopes of home would be too quickly and could off set or completely set us back altogether, so instead we'll wean at home just like we did last year. Did. Accomplished last year. Achieved. We can do this again! Nothing a diligent militant excel spreadsheet of off-ventilator-trial-times we can't manage again. Think I'm kidding? Her daddy is slightly obsessive about this, and for great and adorable reason. 
  4. Nursing. Please pray that the Lord would provide amazing nurses who get Chloe, understand her needs and levels of care, and interact amazingly with our family. 

So there you go. That's our plan. We're going to pray that this aligns with God's plan, to have Chloe home by Christmas. We'll make a banner and wave it high from the floor on our knees for the Lord to see our prayer. That's our hope. Because Christmas is a season of hope, if of nothing else. That babe in a manger sure is our One and Only Hope. Incase you missed that, we're focusing on getting her home-to live and thrive and grow, as long as that's the Lord's will!! I summoned the courage today to call the nursing agency and say it's time to start interviews again. I was excited to finally, after weeks and months of uncertainty about her ever coming home again, do this task. As we drove to a friend's house to do school and laundry today I told my son, "Hey, let's get a book that Chloe would like to read, and I'll start teaching you how to read it and learn the words so that when Chloe comes home you can hold her in the rocking chair and read to her by the Christmas tree!!" That idea started innocently thinking it'd help my son learn to read more, but suddenly, at the intersection of Antioch and Johnson with Ikea out my front window, I burst into tears driving through the green light because as soon as the words rolled off my tongue, I realized that this hope is real and she is working on coming home. I can buy Christmas presents for all my children. I can look longingly and perhaps purchase matching winter outfits for my girls. I can hang all five stockings this year, with hope for our future. After all we've been through, it takes courage and tears of joy to say this. We still have about a month or so until all those things on the to-do list are tied up neatly in a package with a bright red bow and a few jingle bells and placed under our tree. But we'll take this.

Where does that leave us for this month? Well, a little bit of everywhere. Our crazy little family got upgraded to a suite at the Ronald McDonald House. For the last month we relished in having a couch, a TV that works, a kitchenette {who knew how much you could cook in just a crock pot, hot plate, and microwave!??}. It provided much needed space for our cramped family to breathe. It saved us money on having a kitchen. It meant we could put the kids to bed in one room, and talk for a few mintues between Chloe shifts while sitting on a real live couch instead of edge of a bed. If you're just joining in this story, we've been living in a little two-bed (don't misread as two bedroom...just two bed room, like two beds, one room, only 4 walls and a bathroom). It's been just what we needed to be close to Chloe, but at the same time, five months later, it was getting small, closed in, and claustrophobia set in a bit after long, long days and when our other littles decided they no longer approved of what should be a bedtime routine. So we were ever so grateful for that little space, and yet missed our home two hours away.

Unfortunately all good things must...well, at least change. They're redoing the hardwood floors in the suites, so we had to move to a hotel for the next two weeks. I have to admit: I cried when I heard it was two weeks in a hotel. I did not honor Christ with my reaction of tears and freak out moments. I was completely overwhelmed about packing up our nearly half a year worth of belongings, jamming every last Target sack we owned and suitcase with clothes, snacks, dry goods, bathroom essentials, and every last scrap of four-year-old scribbled pages into the homeschool bags and moving. Again. I can't even count how many different rooms we stayed in since June. This vagabond life is hard on a home-body like myself. I think this is God's sense of humor since I only lasted one semester in the dorms in college before moving back home and commuting the thirty minutes because I needed my own quiet pretty space to study in. And now...well it's kind of like college dorm living, but with littles, so instead of late night study sessions, it's the early, wee morning hour "Mama I wet da bed!" moments and showering a little bum at five a.m. On the hotel note stationary I may have written housekeeping a note apologizing for the need for new bedding. They blessed us back with this:

Thank you, housekeeping, for loving on our littles and surprising them with this sweetly made bed. Thank you for not retaliating since my daughter went waters in the original one you made. 

I'll add to God's sense of humor the fact that I really thought I was a country girl by heart and refused to adapt to city driving and aggressive lane changing and living inner city life. Chloe changes things. God changes people. He took my fears and anxieties and placed me smack in the middle of them and said, "I've got you, so you've got this."

After I got over my kingdom collapse and realized this is still OK and the Lord's way of providing for us, I realized and remembered that even Jesus didn't have one particular place He called home on this earth. His Home was elsewhere. On earth He traveled by foot and He slept where He was. At a friends house. On a boat. In a garden. Wait, nope. Everyone else slept there, but not Him. I have this feeling that there's another temptation that took place in the desert where the enemy was taunting and tempting the Lord. I have this distinct feeling that another temptation took place: a pillow. A bed. Sleep. A cozy place to lay His head and just sleep it all off after a long, hard day of getting the disciples to understand. At least that's how I feel. It doesn't matter these days where the pillow is, just that it's there because my littles who I try to disciple daily tend to drain my mama's heart, and at the end of the day, whether a two bedroom room, a Ronald McDonald House suite, a hotel room, or the makeshift couch in my daughter's hospital room-no matter where I lay my head, I am//we are right where we need to be and He provides it all.

Thank you, sweet Jesus, for loving us so.

And as any good parent teaches their littles on their first night in a hotel {yep, we missed that milestone. We've never taken a family vacation and stayed in a hotel, so this was their first official time, although they did stay once overnight with grandparents}: We got pizza and ate it on the beds while watching TV. #normalmoment


  1. You're a great mom, a beautiful writer, and strong, strong, strong.