Thursday, November 19, 2015

Home Soon...

Home soon. As in,

"Will you guys get to go home soon?"
"We hope you'll be able to go home soon."
"Hopefully you'll get out of here soon!"
"What do we need to do to get you home soon?"
"I heard you're going home soon!"
"Are you ready to go home soon?"


It's a sweet but scary thought. She's overcome so, so much, but she still has a long way to go.

Home does not mean out of the woods. Home means less 5 A.M. x-rays and labs and more cuddles, but also more watching, closely by her hawk parents.

Home means quarantine from outside cold and flu bugs.

Home means finding trustworthy nursing. We're possibly two weeks out from home and still no word on any nurses to interview. I'm not nervous or concerned. At all. Not one bit. Ok, a ton nervous. Like a lot.

Home means no more quiet sleepable (new word, ten points for creativity) nights, but instead the whooshing sound of the ventilator again. A new ventilator that we have yet to learn and are not used to it's squeaks and alarms yet.

Home means nerves each trip out for labs or clinic appointments.

Tomorrow is the care conference and discharge planning meeting. It's where we'll sit down with Chloe's team and review what steps we need to still have her make (like making sure she's over the last of her infections, figuring out feeds, addressing recent belly issues, and pulling her PICC line). It'll be a weighty conference. I'm not exactly sure what to expect. And for that my stomach is in knots tonight.

Because we never know what to expect with Chloe.

Today I was disinfecting her high chair and the Child Life coordinator stopped in to ask what ink stamp pad color I'd like for a little project I wanted to do. I was shocked they have different colors, and said without hesitation, "Well, black or pink I supposed." Before the words left the edge of my tongue my memory flashed back to the day we found out everything and nothing and fear about our daughter. The night before our nineteen week ultrasound, nearly two years ago, I dreamed through the night of it it was a boy or a girl, but instead of dreaming in hues of blue or pink, I dreamed of pink and black. The images from the dream were so vivid in my mind the next day as I anxiously awaited the appointment. I'd come to fear those colors. Pink, a girl. Black...death? Problems? Losing her? What could black mean??

She's come so, so far from the black that plagued those first weeks and months until her birth. They say gray is the new black, and she's proven this. She's definitely not in the black zone for babies. She's a gray zone. A "we just don't know but we take this one day and one thing at a time" kind of kid. And we love her for that.

The surgeon who gave her a new designer heart stopped in today as he roamed the weary halls of the cardiac wing of the PICU and smiled. He said he heard the happy news that she'd get to go home soon. He also slightly was uneasy and unsure of his words, as if he himself was surprised to be saying them. Chloe gave him quite the scare a year ago during her BT shunt surgery when she nearly left us right after they closed her up and this same surgeon had to open her back up and move the shunt location. He also threw out his knee and needed time off shortly after Chloe's OR incident. Personally we think Chloe made him do this because of all she put him through. By the grace of God, Chloe's surgery when much smoother this time, but then the complications and infections set in and we were all scared. The surgeon looked at me today with a little grin and no words, so I helped him out and just said, "It's Chloe. We just never know because it's Chloe." He agreed wholeheartedly and walked out with a smile.

She's come so far. We nearly lost her multiple times over the last six months. But she's here and she's good and she's a fighter.

And she's going home soon, hopefully a date determined tomorrow.

And as I wiped down her highchair and reflected on those words together in the same sentence, pink and black, I realized they've been slightly redeemed. Because I need that footprint to put in my bible, next to Psalm 139:14, "I praise You for I am fearfully and wonderfully made." And whether that footprint ends up in bold black ink or in gentle pink hues, the truth remains that God is good.

We still don't know how this story will unravel and unfold, but I'm thankful that the Lord redeemed my fears in those simple colors and their meaning to me today. He reminded me that He can redeem even the hardest of situations, the scariest of valleys, the darkest of shadows, and the deepest of sins and change the situation and the person and weave their story into a larger and truly amazing story of love, redemption, and grace.

Chloe in PICU for common cold, October 14th 2014
*The background image above of the quilt was taken from the quilt my daughter lay on in the PICU just over a year ago. One of the most beautiful quilts I've ever seen met in one of the most hardest places-the cold stillness of a hospital. It brightened her room and cheered our thoughts as she slept off her first cold against its warmth and love. Thank you to all who donate quilts and blankets to not just our hospital, but to hospitals across the country. If you'd like to give a blanket to Children's Mercy Hospital of Kansas City, please visit this link to learn more {and if it has a end date on the blogpost, ignore it and donate to your little heart's desire as they're always accepting donations of new blankets}. 
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

Monday, November 9, 2015

An Anchored and Secure Hope

A dear friend and co-conspirator in the mommy life asked me if I’d be willing to help with a blog post series on Suffering. If she’d asked me three short years ago to do this very thing, I would have paused and considered why I’m eligible for this call to write. Sure, we’d had our times of suffering in our marriage and life, everyone does, but was it really suffering? Of course we’d lost a child to miscarriage. Our first, born from my body straight to the Lord without even a full body yet to lay my eyes upon, only the knowledge of the life that was within me and now with God.  Did that rock our world? Yes. But we grieved and healed. Was it suffering? Yes. But we’ve moved on….right? So who am I to speak of suffering? That was just a trial, right? Not actual suffering?

Actually, God has used suffering a lot in our life. Looking back over just the years since I said, “I do,” there have been many opportunities to experience the valley. Within the first months of our move, three years into our marriage, we lost our first child to miscarriage, as mentioned above. The first year we moved into full-time ministry, my husband’s grandmother passed away back home. The second year, his uncle got cancer and passed away within months. Year three brought a cancer-scare with my mom, and a throat cancer diagnosis with my dad.  We experienced financial hardship years three and four and part of year five, and in the fall of year six my stepdad announced he had cancer.
And years six and seven? Well, we were blessed with the amazing news that we’d be having another baby. Joy and peace and hope were on the horizon. We shared the news by lining up pumpkins, one for each member of our family, and the one on the way, with a little Pinteresty sign that said, “Baby #3”.  When we were considering having another child, we discussed things like finances, work versus family balance, logistics of car seat to van-size ratio, and we thought through how in the world I could manage my two-under-three (well, when we found out we were expecting our oldest was still three, our youngest just turned two) considering how stubbornly nauseous and sick my offspring tend to make their mama. We thought we were ready. We knew there were risks, especially after the miscarriage. But we felt the Lord approving this idea and blessing us with a new baby come spring of 2014.

The moment the nineteen week ultrasound started, my husband and I began light banter about boy or girl, the tone changed slowly and suddenly and the air became as heavy as the wet snowstorm outside the walls that divided us between bad news and the world rushing about where it was beginning to look a lot like Christmas, everywhere you go.

Eventually and after many tests, we would come to realize that our daughter had an extremely rare chromosomal abnormality. She had a congenital heart defect, a cleft lip and cleft palate, possible club feet, and later, after she was born, we’d learn she possessed only one misplaced kidney.  Two months and nearly ready to go home and wait for her first open heart surgery, she aspirated (choked) and ended up needing a tracheostomy to save her life and let her breathe around her tricky airway anatomy.

The road that was paved through five months of NICU life was hard. Stressful.  Life altering. But it saved our daughter, and we were able to bring her home to stay and thrive with us for over eight months before her heart shunt began to get too small and we knew surgery number two was looming. We’ve since spent the last five months in the PICU waiting for, and then currently healing from her second open heart surgery. The season of home was filled with laughter and joy, but also with stress of home nursing, sleepless nights, scary moments, ER visits, life-flight fears lived, and precious moments of cuddling my daughter by the Christmas tree. To some it was a juxtaposition of normal life meets medical life. To us, it was joy in the face of suffering.

I believe that all we’d gone through in the previous years had granted us with bits of hope along the way so that when this time came, we’d know hope truly existed to see us through this trial. I believe that because we chose to cling to the cross through those other painful seasons, we were better able to appreciate this current and very unexpected season in the valley.

If there’s something to be learned on this journey of suffering, it’s that it’s actually three-part. The first is that peppered among those trials mentioned at the beginning of this post were peaks of joy and utter happiness that can only come from the Lord. Our first healthy child was born, then our second. Our move from a tiny two bedroom duplex to a blessing of a three bedroom home with yard for our kids to run through the grass and sled on the slope. Watching as relationships around us showed growth and healing. Watching my dad fight and beat his cancer. Watching my step-dad do the same. Among our suffering, God plants seeds of joy, that can grow and bear fruit that will worship and praise Him even while in the storm itself. These moments of joy bring us hope. An anchored and secure hope. I’ve learned that when the valley seems the darkest to look around me, for surely, even when it hurts the most, Jesus still grants me joy in sorrow, and peace in pain, and a hope that anchors the soul. Hebrews chapter six tells us:

For when God made a promise to Abraham, since he had no one greater by whom to swear, ehe swore by himself, 14 saying, f“Surely I will bless you and multiply you.” 15 And thus Abraham,2 ghaving patiently waited, obtained the promise. 16 For people swear by something greater than themselves, and in all their disputes han oath is final for confirmation. 17 So when God desired to show more convincingly to ithe heirs of the promise jthe unchangeable character of his purpose, khe guaranteed it with an oath, 18 so that by two unchangeable things, in which lit is impossible for God to lie, we who have fled for refuge might have strong encouragement to hold fast to the hope mset before us.19 We have this as a sure and steadfast anchor of the soul, a hope that enters into nthe inner place behind the curtain, 20 where Jesus has goneoas a forerunner on our behalf, phaving become a high priest forever after the order of Melchizedek.
(Hebrews 6:13-20 ESV)

The second part is that suffering and trials causes us to grow in Christ. God lovingly teaches us along the way. Sanctification is the process of dying to self and becoming more like Christ. And holy cow, has this process EVER done that for me. At the beginning of this journey with our daughter, I thought I had it all together in Christ, meaning I thought I was cool with the Lord and didn’t need to grow in my own heart, that He was giving me this experience to learn from and help others through similar experiences. Wow. Just wow, was I ever wrong. This crazy roller-coaster took me through seasons of bitterness, of self-pity, of long-time friendships derailed, and of the Lord pointing out areas of my life that I still needed very much to grow in. While many told me how brave I was or how amazing I was taking care of my daughter or holding her hand in the face of surgeries, I was on the inside fighting battles deep against sin and my want to be in control of my life instead of letting the Lord be sovereign. Thankfully He is a loving God, and taught me about forgiveness and love and grace along the way. Honestly, I’m not sure that I would have grown the ways I have if it wasn’t for this particular walk through this darkness. I’m learning that we can rejoice in our suffering, for it produces endurance, endurance produces character, and character produces hope (Romans 3:3-5).

Finally, seasons of suffering remind us, and bear with me because this is something I’m still learning and grasping and feeling in the palm of my own hands, that our life is about learning to live for the Lord. Angie Smith writes in her book Chasing God about life that, “It is, and has always been, a gradual death to everything we love outside of Him.” (Chasing God pg. 22). That this is not our eternal home and we must learn to look at it from that perspective. And if life is about daily dying to all things around us so that our eyes and life only reflect His glory, then the point of suffering is that, “…we will never know God without first recognizing our need for Him.” (Chasing God pg. 23). God uses these seasons, these trials, these sufferings to realize that only the one true God is sovereign over our lives. That He really is with us, if we call on His name. That He loves us and our brokenness even now, when it’s real and raw, because God experienced it first hand when His own Son was on the cross, taking on all of our sins, and turning His face away for that moment, that very moment when all the sins of the world hung on His Son’s brokenness. The pain He felt as Father losing Son. He’s been there, folks. The Lord didn’t just walk this valley watching His Son bear all sins on the earth, He created the very valley that He, Himself walked through. If we go through this life with its seasons of suffering for the sole reason to have positive thoughts and rely on our own courage and strength, then we’ve missed the point of the valley. Smith reminds us that, “When we nod our heads and our hearts remain unmoved, we’ve taken it (the cross) for granted.” (Chasing God pg. 26).

Press in to the trial. Press in to the storm. Press into Jesus because He is the only One who can save you from the suffering. The only One who can wipe away your tears. The only One who can teach you and grow you through this valley and show you joy along the pathway. Let Him mold you through this and by this. He is writing this story and it can cultivate a new and amazing love for Him if you press into every part that He’s writing, not just easy parts but also into the darkest of parts. For when the world around us is the darkest, it allows Him to shine the brightest.