Summer Vacation

It's been a particularly frustrating day. It wasn't without love and smiles, but it was frustrating none-the-less. We thought we were on track to get this bronchogram scheduled...only to find out they haven't scheduled it yet and instead wanted to do a bedside scope to check for that possible trach ring. We ran errands, then I kept the kids at the RMcD house while Alan stayed with Chloe. Not that a three and five year old wouldn't have wanted to help and touch that awesome equipment that had already been sent up to her room, but alas, Legos with mama back at the house was the more popular choice. But after waiting an hour...then nearly another hour for ENT to show up, all we were told is that they weren't looking for the possible trach ring, but just checking size of trach and for any blockages. Sigh {--my new favoritely used word. Favoritely is a new word too. Just made it up}. This means we waited on the edge of our seats all day praying unceasingly that the trach ring didn't actually exist only to find out they didn't even check yet. We did, at least, find out that she needs a longer trach, that the one we just tried is a still a bit short. That should be sent up soon, but unlike us getting to do a new-size-trach-change at home unassisted, here when admitted, it's ENT responsibility and we're not allowed to touch it. So we at least, very least, know we're here until they can get that done. I think. I hope. I wonder?

We're getting weary. Not tired. We're actually getting sleep for the first time in ages. We're getting time alone with the kiddos-uninterrupted quality time that they've desperately been needing from us, their mama and daddy. But we're...I can't find the word...restless? So far she's not testing positive for a virus, but there has been some junk in her lungs. They're all using verbage like, "Well, they can't do the bronch if she's still go this virus...," but then again, no tests have shown a virus yet. And if she did have a virus, now ENT wants to wait another 4-6 weeks to ensure virus free before doing the bronch. But then again, there's that off chance it wasn't a virus and we're pushing hard to get this done before they'd send us home...or would they send us home for some extended healing time only to come back in a couple weeks?? We don't have answers to these questions yet. 

Here's the big picture:

Trach Ring = Reconstructive tracheal surgery combined with heart surgery. More time to heal. Needs to be bigger//airway bigger//better chance to heal good = push back heart surgery Glenn procedure so she's great size for healing from both. 

           >>This means if there's a trach ring, perhaps just repeat BT shunt with a bigger shunt for right now so that she can a) get a bigger shunt since she's outgrowing this one and b) push back Glenn. I asked if till fall, they said probably further out than that.

If No Trach Ring = Glenn candidate. No sense in opening her up to do a BT to get her to grow more at this point because it's ok to just do Glenn. When that would be? Perhaps sometime soon to sometime later. Catch that? Aka, no clue just yet, but she's showing us signs of needing it on the sooner end. 

{Hang with me here...Alan might edit this post because I might have just messed all of that up. We'll just smile and nod and go with it for now}. 

But when does the bronchogram get done? Great question!!! We keep asking!!! But to no avail. Apparently ENT is the one that's supposed to schedule it, but they haven't. At this point, even if they put it on the schedule asap, asap is more like 4-6 weeks. Our team {her primary team and heart team} pushed to get this moving back in April, so you can sense our frustration here. We don't know if this means send her home tomorrow or the next day or this week yet, let her rest from the bug, and come back next week if they can bump her {seriously} up, or if it means wait a month because of the virus and come back for it. Or will they say it's scheduled now 2 weeks out...but can we stay and let her ride out this stress and get it done before leaving? Will insurance even touch that one?...

But one thing we do know.

She's starting to show us those signs that this shunt needs upgraded. Not urgent//asap//emergently, but soon. 

And we're having trouble getting a few answers. And we're frustrated. But we're trusting that the Lord will grant us all wisdom and things will be done in His time. Because one other thing we know is that He's in control. I have moments {days?} where I lose trust. Not completely, but it's like I start to back up a step and say, "Lord, this isn't working, and I'm not saying I'm going to do it my way, but I'm going to consider possibly perhaps maybe  thinking of doing it my way," but by the end of the evening, when my mind has processed it all, I remember these words: "For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." Isaiah 55:9

Our time-line is kinda crazy, huh? So much of things we want on our time table. But this story is His and He wrote it long ago before the fireflies lit the summer nights for the first time. I wonder if before the Fall, if Eve chased fireflies in the Garden of Eden? When evening stars were bright and the sky turned navy blue and silhouettes of oak trees started to cast nighttime shadows and the fireflies were bright and yellow and free and new. 

I was walking Abi up to the front door of the RMcD house last night, and we saw the first firefly of the season. We tried to watch for another one by the daisies that were bending toward the lantern light on the front porch, reaching over the dew stained grass...

This is their summer. While most kiddos are swimming in city pools and breaking ribs on slip-n-slides and walking barefoot through blades of freshly cut grass while sucking down freezer pops, our kiddos are washing their hands, keeping voices quiet, happily dancing down the halls of Children's Mercy and singing to their sweet sister in her bed on 4 Sutherland. They're begging to play in the basement playroom of the Wylie house. They're contentedly standing in the house pantry asking if there's anymore poptarts, of if we miss the evening meal, can mommy just make the mac-n-cheese they saw on the shelf in there? They don't ask questions. They just roll with it. This is their life too-this hospital stuff is pretty much all they've known for the last year(s) and they're amazingly at ease with it. I need to learn from them. Our lives don't feel "interrupted" by needing to drop everything and stay here right now. It's actually, oddly, almost a vacation of sorts away from constant beeps and getting sleep and not having that slight fear and panic in the back of our minds on a daily and minute basis that her care and safety is completely up to our knowledge and skill and energy levels. And our minds can rest for a few days and not worry about nursing schedules or drawing up meds. Don't get me wrong-we don't want to have to be here, but in a way, we're thankful. We have a great hospital with amazing doctors and nurses, Chloe's getting great care even as we sort out the next step, the kids are getting much needed 'us' time, and we get to come home at night to a beautiful roof over our heads and warm meal in our bellies provided by the love and hands of complete strangers that we call our new friends. I still tear up and having trouble leaving her at night of course, but this is the closest thing our family will have to that much needed summer vacation that so many are planning right now.  

And you know what? We're ok with that. Because we're in this as a family and we'll do whatever it takes to love each other well as this story He's writing plays out. 

G Family Summer Vacation 2015

The hotel we're staying at for this summer vacation wasn't made by a development company. It's not owned by billionaires with streams of destination resorts. It's build with love, by love, for loving on others. It's made of blood, sweat, tears, love, and even loss. It's a beacon of hope in the midst of storms. I feel like, sitting on this porch, I should be looking out to a deep and wide aqua billowing sea that reminds me how big God is and how little I am. 

{I hijacked this room and made it my 'office' tonight!! Who wouldn't!?}

Making Father's Day Cards. A week early. 'Cause we're efficient like that. Oops...

{Ignore the Daddy. He was being silly for the camera.}

Every vacation needs some individual screen time to zone out. 

Some kids get Disney World for their summer vacation. He gets Legos and thinks it's better than Disney world. 

She's taking vacation seriously and catching up on rest. {And that's a trach mask delivering humidified air and sometimes oxygen. She's not back on her vent if you were curious}. 

Chloe's room with a view. 

Remembering

There might be a title by the time I post this, but not sure that title just yet.

Today is a heavy day. Last night we learned of the passing of sweet baby Piper Grace. We'd gotten to know her mama and watch her story unfold over the last ten months. She was even in Chloe's old bedspot at Children's, and had many of the same nurses and doctors. She was a true fighter, and you can read her stories and journey here.

They walked a hard road, but with such grace and love for their little one. This path, this crazy gravel, dirt, but sometimes daisy and lily framed grassy walkway is hard. Life...is hard. It's hard to read posts like this-the ones you knew could possibly happen but prayed mightily that they wouldn't. It's hard to watch parents as they embrace sweet last snuggles. It's hard to know that could have been us, in that same bedspot on the same D pod a year ago today...

On June 13th of last year, we started off our day with morning snuggles. The day before, we brought the kids up to meet Chloe, for I believe only the 3rd time ever.

The above pictures are still some of my favorites. It was the first time Chloe got to get out of her crib and meet the sibs. They were fighting over who got to hold her. I love the patience and gentleness with which our nurse applied while mentoring the kids through sharing Baby Chloe. There were smiles all around. 

The next day started with Daddy snuggles for the first time in a month. The last he was able to hold her was May 15th, so this morning bonding time was so precious. 

That afternoon we brought the Bigs up to see her in her swing for the very first time!!

It was my first chance to get a picture with all three of our children. As you can tell, there was much cooperation. 

That afternoon following the kids getting to see Chloe in her swing, some family came by to meet Chloe for the first time. It had been a long day and after the visits, we knew we needed fresh non-hospital air and the kids needed to run off energy. We went to Target for a few RMcD house supplies, then to the backyard of a friend so the kids could run and we could  j u s t   s i t. Alan played with the kids downstairs. I cleaned my friend's kitchen. I needed to do something mundane and normal. So I cleaned her kitchen. Then we all packed up to head back to the hospital.

And got the call that Chloe had aspirated and coded. And they were still working on her. And they were having trouble intubating her. And it was all surreal and in my mind not happening. 

That night, bed D39 was swarming with ENT team, nurses, doctors. I won't go into every detail here and now. But that night burned memories deep within our soul of how fragile our little one was{is} and how on that very night our journey suddenly took on this rugged cliff to get back to her baseline, if that was even possible. 

That night she coded. We almost, nearly, were so close to losing our daughter. I don't know if I can ever describe in words what it's like to watch everyone gathered so closely around her bed that you can't see her in the crowd, but you know she's being helped and you stand there gripped with fear for your child and praying without ceasing. I will never forget our primary saint {nurse} Amanda and all she did to help Chloe and us that night, even down to mouthing "she's doing OK" to us over the heads of the team working as we sat nearly ten thousand miles away, when in reality it was ten feet. Our hearts are forever grateful for that amazing nurse. 

But the Lord sustained her. I don't know why this side of Heaven the Lord keeps some to live and some to take away so soon. My heart cried last night as I learned of Piper. But she fought such an amazing fight, and her parents were so unbelievably genuine and caring and respectful of their daughter's need to not suffer on this earth knowing that her little body was struggling. As she said in her blog, we don't know the reasons why, and she thinks she's ok with that. And we don't know the reasons why Chloe was doing so good and then suddenly aspirated and coded and needed to be intubated...why this journey had to involve a trach placement instead of coming home to rock it on just heart related issues. We don't know any of these details. 

But we know that in all things, God has a plan. And that's not a simple smooth worded cover up for saying we wish we could have our wants and desires. We truly believe He does have a plan in all of this that we'll know one day, face to face. We don't know why we've watched as Miracle, Austin, Remington, and now sweet Piper have not continued their journey here, but we know that they're all in the arms of Jesus. Piper's mama said it so great, 

"Who says you have to live to 86 to have a full life and leave a mark on this world? Piper has reached so many in her 10 short months, more than I could imagine, more than we will ever know; and for that, I am so proud.  

Another thought: everyone's prayers are different. If your prayers for miraculous healing went unanswered, it does not mean God was not involved. Ask yourself: what has Piper taught me? Can you imagine the infinite answers ranging from tiny to huge? Thank you, Piper Grace, for teaching us."

And if you ask us when Chloe's upcoming surgeries are and what's to come, don't be surprised if we choose to give a few details and then not discuss surgery further. It's simply because we want to soak up these days with our baby girl enjoying the fact that she's home, and not dwelling on the fears surrounding surgeries. We would rather talk about the snuggles we got the other day when we held her, or the orneriness of her yanking her sat monitor, or the fiestyness of coughing the very minute you leave the room. The fragileness of this life is always fresh in our minds. 

Piper Grace, we will miss your sweet smile something fierce. But you've taught us SO much, and we will carry all of that with us as we continue on with Chloe. There's a print that's near and dear to your mama that I had the joy of designing for you. Darling girl, you are now free to fly into the arms of Jesus. I'm hanging it up in Chloe's little room here as a reminder of all you've shown us, praying for your family in the days to come, and rejoicing that you are now with your Savior. 

Bringing Home A Trach Baby? Tips To Stay Organized...

I've been meaning to write this for a while. Actually since about the time we did the parent room at the NICU and had to load up our baby girl in her big ride and walk to the parent room with every ounce of her equipment on the stroller and NO ONE knew a great way to set up the stroller and gear. One sweet nurse had a few pointers, but for the most part, it was a huge ordeal of frustration, trial, trial, trial, and many errors. By the time we got to the parent room and got Chloe settled into her bed, we were emotionally DONE. And yet we were the nurses and on our own. This did not go well...

And that's when I vowed to write the post about how to load a stroller with so much equipment.

But alas, that has yet to happen. However, I felt somewhat motivated today to get a few pictures of other tips and tricks and things we do to stay organized around here written up, which is the point of this post.

When we were {attempting} to get ready to bring Chloe home after five months in the NICU, my love for organization soared and I started setting up our living room to become a homespital on the weekends we were home from the city. And then I rearranged it the following week because I'd think of something that would either work better, or my naiive mind that had never done this before would realize something wouldn't work. Like her crib. We'd originally put together our other children's old crib, but we'd learned that with a trach baby, it's best to be able to get in on both sides of the crib. Our old crib had a high back, so this wasn't an option. We really wanted a mini crib, but at the time, that wasn't a quick {by this point we were coming home in a week, but only home 2 days to get things ready}, or in our budget as they are around $150, and we only had about $100 towards this. We ran an errand to Target and while waiting for something at the pharmacy we walked over to the baby section and the crib you'll see in the images below was on sale for $99. It's sturdy, slim so it doesn't take up a lot of room, and had even//level sides on front and back so it could stick out of the wall well for easy access.

It amazed us when we were finding these things and setting up her "room" at how much we couldn't find on setting up a room for a baby on a ventilator. I think I found one blog post which I read and re-read and re-read again, and one picture on Pinterest. That was it. We had to figure this out on our own, much like the stroller in the NICU, and much like learning the waters of home nursing.

Chloe is a part of our family and requires a lot of care. Therefore, we chose to set up her room in our living room so that she could be there to hang out with us instead of in a back room with a nurse all the time. This works great as on the days we're the nurses, she's right here in the middle of the action.

So here's a few tips//tricks//set-up ideas that have helped us to stay on top of functionality and organization for a baby who requires a lot of "accessories" so to speak ;).

We'll start basic. This drying rack. SERIOUSLY perfect for drying syringes and vent tubes. 

Target // Amazon

Bar for hanging notes, reports, drying trach ties. 

IKEA for less than $10. Actually, I think it was $5. It was a steal and helps so much. 

P.S. I design all of Chloe's charts. Our nurses still use their charts, but these are just the quick, simple, jot it down and remind each other charts. I have an Etsy shop where you can purchase custom designs {or any of the fun designs as well that on that shop} and if you'd like any custom made for your child (i.e. if you'd like to have feed times, medicine times, etc) just email me from that Etsy page ChloeGirl Designs on Etsy. I'd be willing to do up to 3 pages for the design rate below...

We print these charts, laminate them with our nifty $20 Amazon laminator machine, then use dry erase markers so they can be wiped clean and changed often. We've made HME trial//off ventilator trial time sheets, reminder sheets, vent alarm definition pages for nurses, gtube feeding breaks, etc. We keep them on our $2 Target clipboard on that awesome IKEA bar or on the dresser where they can be easily used. These have been a LIFESAVER when it comes to questions like, "Hey, when was the last time you vented her belly//gave Albuterol//gave that bolus of water" moments we all//you will have. 

Dresser. Aka Command Center. Aka Nurse's Desk. Aka Pile-Everything-On-It Location of the House. But it works and keeps everything organized and decluttered. 

Dresser--IKEA $250. 

Wall Hand Sanitizer--Amazon for around $20. First one comes with the pack of sanitizer, refills available on Amazon.

Additionally, we used to have a shelf with bar as a mini "closet" up on the wall beside the hand sanitizer. We kept a small tote of baby towels and wash clothes in there, and kept the humidifier up there, and hung up her pretty little dresses on the rod. But then our daughter decided clothes are unnecessary at this point in time and prefers her the outfit she wore the day she was born. In other words, she gets hot easily and barely wears more than a diaper, so I decided to take down the shelf and open up the wall more. Anything to make it look more like a home and less like a hospital room. When we did have that shelf, the board and brackets we got from
Home Depot for less than $10 total. 

Best thing ever: $3 clear totes from Target. These drawers fit 4 totes and helps to keep things from falling and mixing and mashing and not getting along with others in the drawer. 

Tricks to organizing supplies in drawers:

Use silverware separater thingy (technical term) for syringes. We call this the medical drawer.

Target less than $5

Pink compartment organizer $2 IKEA. Great for all the tiny things, like Flexitracks and saturation monitor stickies and cords. 

Wall decor organizer. Holds her sterile-ish (in other words, no little hands touching from siblings) scissors out of harms reach, thermometer, bandaids, sterile Qtips. All things we use daily. Except for the band-aids. Our three year old princess thinks those are used daily, hence why they are up so high now out of her reach. 

Target $20 

Our little set up. The ledge is PERFECT for setting supplies on. The changing table provides space for the most important piece of equipment: the Suction Machine. It's so important that it gets capital letters. We can easily grab saline bullets, diapers, sterile water, vent tubing, creams, etc. I love the changing table because it has the ledge to keep everything from falling off, and especially to protect the Suction Machine from falling off or getting bumped. 

The white three drawer thing {my brain lacks the real term} was originally there to hold the trach mask machine, with tubing and masks in the drawers. But alas, our daughter H.A.T.E.S. that machine and freaks out, wakes up, gets congested, so we improvised and kept it there for her very own personal fan. 

White Dresser Thing--Target $10

Fan--Target $10

White Storage Tubs on changing table--Target $3 each

Wire Basket Drawer on changing table--Target $16ish?

Wicker Diaper Basket on top of changing table--Target 5 years ago when we had our first child ;). 

And if you peek close enough, you'll see some oxygen tanks hidden between the wall and the changing table. In other words, well protected from five year old and 3 year old hands, but close enough for their sister if she needs them. 

We always tape her extra trachs directly above her on the crib, just like the NICU taught us. 

Our convenient ledge that we put everything on. Can't sum up how much this helps, and if you do not have a fun window ledge, would HIGHLY suggest a long home made (but extremely secure) low shelf. 

You'll also notice in our set up that we use any ounce of storage we can find. In this case, her scale which she gets weighed on daily is stored under the bed, along with those clear tubs they send home with you from the hospital {save those!! Perfect wipe-down baths!}, and we also have an under-the-bed storage tote that we keep her extra wipes and diapers in quick re-stocking. 

Finally, my technologically inclined husband hung a camera monitor above her bed so that we can check on her when we're in another room/upstairs to make sure she's ok or if nurses need help, or at night if we hear a lot of suctioning and beeps, we can jump on our phones and see if they need help or what's happening. He also installed the light above her bed (our house has high ceiling in here and we needed something brighter for trach care and changes). The monitor was only $50 on Amazon, and was cheaper than most video monitors because it is viewed on computer or phone (no little video monitor in another room), and does not have sound, but we can hear all echos of beeps already in the house. Perfect for budgets like ours that couldn't afford a $200 video monitor,

 but we can still make sure she's ok. 

Storage end table/side table thing--the many different drawers are great for having additional storage, and the dresser thingy comes in handy when we sit with her in this chair because we can put her Suction Machine on the dresser beside her sat monitor and get some cuddles in. 

Dresser Thingy--Hobby Lobby on sale for $100, or don't forget that handy dandy 40% coupon. 

And incase you didn't think you'd have enough supplies and all this post was crazy because you'd never possibly have so many many many insane pieces of medical supplies and equipment, try the shoe organizer. I saw this on that one and only blog I'd found on setting up home trach space, and it's genius. Pure genius. I laughed at first when I hung it and thought I'd never use all the pockets. Wrong. 

Shoe Organizer--Already had on hand, but less than $10 at Target. 

{Do you see a Target theme here?}

Just incase you thought that covered it, here's our one and only true downstairs storage closet. What once housed our stockpile of Costco dry goods and my big pots and pans hath been taken over by Chloe's supplies and miscellaneous equipment. {<<I spelled miscellaneous correctly first try without much coffee. Woot! Small victories these days. You'll see}. We'll call this closet the Summer Project. And incase this closet looks a bit disheveled {we really do know where everything is in it}, I might add that montly supplies get delivered in 1 day. ...I might just pass that on to our nurse and have her organize it because my mind aches just thinking of how we'll make it all fit. But soon, it will get accomplished!!

Editor's Note: My husband assured me after reading this as I wrote it that he wants to put together the stroller and all equipment for a How To Stroll post. I'll leave that completely to him ;). My fingers are tired and my mind somewhat numb after talking through just this much. 

But truthfully, this is what was missing when we came home. We needed tips, ideas, guidance, and couldn't find it online anywhere. We'd LOVE to know how other trach families set up their rooms, equipment, tips, etc. There's always room to learn more from those sharing this path with us, and to always look for the chance to get inspired by others' ideas!

Life, Interrupted Part 2

The previous post gave a glimpse of our lives these days. It included talking to our kiddos about how we all must sacrifice and help out Chloe these days as she awaits her heart surgery.

It's hard, explaining that concept of not getting to do what you want all the time to a young child. It's a concept I struggle with at thirty-two years of age.

Graduations just happened. Seniors probably were handed out senior class awards. Someone in some class somewhere probably received the "Most Likely To Succeed" award. Another senior probably filled out the "Where Will I Be In 10 Years" question.

Where will I be in ten years...

I think back. Ten years ago, my husband was down on one knee proposing. We were planning a wedding. We were starting new jobs. We were becoming a family. We had dreams that were beginning to take off. We were owning our first home. We were squarely on the track to our American Dream.

We were still on that path five years later when we entered full-time ministry. And as we shifted into ministry, life changed. Sure, we had struggles in our first glory days of being newly weds, like when I was laid off from my job and we struggled to make ends meet. We thought that was hard. We felt like our world was crashing in that moment. We were frustrated because we had plans to redo our floors, tear up the carpet and put down hardwood in our first home. We had dreams of remodeling a little on the side while we paid off our student loans and began this new life together. But that lay-off threw things off course that we didn't expect.

I think back now and see that as a time when God was stretching us and using us and teaching us.

I see the same thing happening now. But the road forked off of the road to our American Dream is a road that is being blazed through tall untouched prairie grass, often the grass waving wildly in a Kansas thunderstorm. Our American Dream has been gracefully and amazingly and abruptly changed to a Gospel reality.

Are we OK with that?

There are times when I look around our home and see the crib/hospital set up in our living room and gaze unfocused on it all.... This wasn't the scene I'd pictured when I filled out the Senior Survey about where I'd see my future.

But Someone has already gone ahead of me and planned this future for me. And for that I'm thankful. And I'm still learning. It's hard at times to hear everyone's summer plans. To hear of their Memorial Day festivities or mini vacations out of town. To watch as Chloe's peers, her birthday-mates who born around the same time as her last year...to see them taking their first steps. Diving into their first birthday cakes. It's hard to hear the cry of an infant when my one year old is mostly still silent. It's hard to watch life move around us at a faster pace. We feel stand-stilled again. New phrase.

But am I OK with that? Am I OK with God, the Maker of everything, stepping into my life to tell me He wills me to live this way or that?

Raising Chloe is actually exactly what I think I need(ed). It's teaching me grace and humility. It's teaching me that this life is about so much more than anything I can ever dream up. He's teaching me that this life is not about vacations or big salaries or owning homes or driving nice cars. It's about serving one another in love. It's about showing the love of Christ to all we meet. I fail daily, it seems at times. I wrestle with if what I'm doing is enough. But I'm ever thankful that the Lord is the One writing this story, not me. Because this story is for His kingdom. I don't know how He'll use it, but one day we'll see clearly as we see in a mirror dimly these current days. It's hard to grasp this concept. Oh how hard and how it's a DAILY challenge and calling.

I think having a special needs child is sometimes more about the special needs of the parent than the child. I need to be more patient with those who do not walk in our shoes. I need to be less selfish in my time and desires so that I can meet my child's needs before my own. I need to be more loving as I deal with nursing companies, with doctors, with schedules. I need to think of the needs of those around me more often and help them to meet those needs. I need to be more patient in friendships when they try to understand but can't quite compare. I need to invest more into relationships than in activities or society's expectations of time well spent...the list goes on.

Yesterday I tried explaining the concept of not always getting what we want to our small children. I tried explaining how there are times and things we want or long for or desire, but we cannot have. But that often, that's because it's for the better. In this case, if we had not ventured out onto this unknown path with Chloe, our lives probably would have been comfier. Calmer. Smoother. Quieter without all of the beeps. But we wouldn't have grown in Christ. We wouldn't have been seeking His kingdom, we would have been living for our own. And though I struggle with my earthly and selfish desires, I'm trying to pray that He would make my heart to seek His will. Trusting in the Lord with all my heart, and He will give me my desires--not because they are my desires, but because He's molding my heart to His desires to make them my own.

I don't write any of this to in some way boast that we're better off because of this or to glory with an air of  "Hey, we're rocking this and growing closer to God//We've got this!!" concept or attitue. I write this to share that constant human struggle of realizing as a parent-as any parent-can testify to which is that we live in selfish flesh and bone. We life in a world and society that has the slogan "I want; give me; now, please". But the Gospel screams joyfully that you can have all this world, but give me Jesus.

That's the lesson we're learning. That's the journey we're on. We're learning bit by bit, day by day, to sacrifice more and more. My fleshly desire is to see Chloe walk. It's to see her run. It's to see her sit up in her high chair and eat cake by her 2nd birthday and to survive open heart surgery and to lose the annoying but necessary oxygen saturation monitor and to get to a point in our lives where one day we can take that much needed family vacation and to have a date with my husband where I'm not texting the nurse about how much oxygen Chloe needed while we're gone or to sit at Radinas for three uninterrupted hours.

But my God is saying be patient. Be still and know that I am God; that My ways are higher than your ways. That when the waters rise, they will not overtake you. That behold, I have overcome the world.

And we get to be a part of that. We get to be a part of overcoming this world and all it lacks to offer as we seek to serve Him by caring for Chloe and teaching those in her world around her more about life and love and the beauty that it holds.

This wasn't where I expected to be ten years ago when I set out to get married and start a family. Or fourteen Mays ago when I walked the stage and received my ticket to the real world.

It's so much better. This life is hard. Following Jesus is hard. But it's worth it, and I'm so thankful that He interrupted my plans for His.

Life, Interrupted Part 1

It's summer now, I think. The birds are chirping earlier and the suns rays fall through the windows sooner, which helps actually on these early mornings of us taking care of our girl before our day nurse comes.

The kids and I planned on watching movies yesterday, but only the educational ones. That's my Wednesday summer mornings plan at least. While we frantically picked up, got breakfasts, got ready for the day, made the coffee, the sounds of Super Why, World World, The Magic School Bus all echoed through the house yesterday morning while we met with our TA Waiver lady for an hour long meeting to review Chloe's needs and hourly care. She was sweet and said no thank you to coffee and we dove into the meeting. At some point Alan left for work. He was on a tight schedule needing to get office hours in before his scheduled 3pm-6:30pm nap so that he could work the night shift.

The meeting ended. Chloe coughed. We suctioned. We vented her belly. Her sats finally came back up to the 70's.

I called the home vent team to discuss things. Her belly is still restless although this new formula seems to be working better. But every time she coughs from secretions, it usually ends up in a desat down to the 60's. I tried my best to convince them we need to change to her new size trach soon, since that's what they said is causing the coughing and spit ups now...

I walked into the front room to see the kids watching Lego Friends. I got upset and lost it a bit, telling them they were only supposed to watch the shows listed, not just anything they wanted. It wasn't movie time, it was to watch something at least somewhat on a learning curve. I sent them outside to play.

I poured my coffee.

My phone rang. Nursing company. Issues with scheduling. Kids at the back door, begging for me to come outside into the bootiful weather with them. To run in the grass and push them on the swing.

"Sorry, guys, not right now. Mommy hasn't eaten breakfast and needs to take this call. I'll be out in a bit though."

Heavy heads, eyes down, but they said OK and ran off to play.

My phone rings. Vent team. More phone calls from nursing company. Hot tears welled up when we were told they really need to switch out our primary nurse one day a week. They're trying, but I don't think they grasp what this does to us in this moment. Our nurse practically sits by Chloe's bedside her entire shift these days because of the constant desat-after-coughing routine. Chloe's so complex right now. My heart is sore just thinking of the training we'll have to do to have one nurse one day a week. I wrestle with just doing it on my own, picking up another day shift, but that means the house waits impatiently and the kids can't play outside because I'd be right next to Chloe all day...

I make breakfast, at 10:45am. I pour creamer into my coffee that I have yet to touch.

I sit outside on the swing. Does this count as going outside to play with the kiddos? I call Alan and update him, choking through tears of frustration as we talk through all of this nursing stuff... The kids come join me on the swing, cuddling up on either side of my tears. They ask what's wrong and I gently explain that Mommy is just trying to find nurses to help with Baby Chloe. They want me to play, but I tell them we need to go start lunch. They ask why about the nurses. I explain that we're trying to find a nurse for Chloe's bedtimes. They beg to go swimming this afternoon. I explain that we might be able to put up the little pool this afternoon, but it's a big maybe. They ask why, and I find myself gently explaining to them just how fragile Chloe is right now and how we're all needing to help out. We're in this as a family and that means not always getting to do what we want to do so that we can all be there to help Baby Chloe out. My strong five year old gets it, and vows to help out Mommy more so that we can all help Baby Chloe. My three year old smiles, tucks her head into my shoulder and says, "I wuv you, Mommy."

Back inside to pick up from the morning. Eat my breakfast sandwhich at 11:20am. Put my coffee in the microwave. Forty-five seconds later the timer rings off, blending in with the sound of the sat monitor as I head to help the nurse.

More phone calls. Mounting frustration about trying to figure out how to help my daughter get this new trach placed.

The kids come in for lunch. They eat mostly by themselves; I join them with my lunch a little while later. They run off to play before I can really eat with them. I try to get a few designs made and up on my Etsy shop. Goal is design one new design daily if I'm not already working on a client design. I have a designer's block, and only come up with this:

My husband laughs over Google chat and makes a special request:

The kids are finally playing quietly and contently. Trust me, you don't mess with that beauty, so I keep designing, finally working on a quote a friend shared with me months ago that rings so true in this life. 

My nurse opens the microwave to make her lunch, and carefully takes out my coffee and asks if I'd like it. I've moved on to a Diet Dr. Pepper. 

After designing I make sure Chloe's squared away and doing OK so that I can go outside and mow. The kids play up in the "fort" on the swingset while I mow the lawn, the sun beating down on my weary soul. The fresh air and smell of newly cut grass mix and make their way into my senses and my soul finds a little peace. Amazing how mowing the lawn can bring a glimpse of rest and refreshment. Alan comes home for his afternoon pre-nightshift nap. I come inside at 2:56pm to see Alan still downstairs. 

"I didn't want to go nap until you were done mowing incase Chloe needed help."

I get report from our nurse that Chloe had another (her 5th? 6th?) desat of the day, this one requiring oxygen for a few minutes while I was out mowing. She's good and calmed down now and about to nap, so I go back outside and start to blow up the kiddie pools and let the kids help fill them up. I went over the pool rules with the kids:

"Never EVER play around, near, or IN the pools when Mommy or Daddy aren't here."

Son, "Why not?"

Mother, "Because you could drown." {Explain drowning concept to 5 and 3 year olds}.

Son, "Oh, OK Mommy. I'll listen and obey and not drown. Why do I not want to drown?"

Mother, "Because it could be very, very bad and hurt you. You could die if you drown, but we want you around for a very long time and we would miss you so much."

Son, "Ok Mommy. I won't drown or die. Got it."

Oh son, that is what we pray for... {insert reminder to talk with your kids about pool safety here}. 

To the untrained eye, the sights and sounds and splashes all excitedly yell SUMMER!!! The kids splash and swirl and swim and sing. I snuck away to the swing to sit down. I tried dipping my toes in, but they wanted every square inch for their watery mischief. Five minutes into my "relax" time, I receive a call from our equipment and supply company. I called this morning to ask for a few supplies even though delivery is next week, but Chloe's been rough on them and we're needing a few backup supplies. We forgot to go get them earlier when Alan got home. It's now 4pm. The kids got to swim for about 30min. I call them out of the pool because Alan's still napping for night shift, the company closes at 5pm, and our nurse leaves at 5pm, so now is our only window. We dry off to the cries of, "No, I want to keep swimming!!!!" I stop and explain to them how important it is that we do this as a family for Chloe and that she needs these supplies. I explain to a preschooler and a kindergartner the concept of of helping others even when it means our lives are interrupted, and feel the weight of all that means in this life...

The kids and I walk up to the equipment supply door.

Son, "Mommy the sign on the door says no guns, and no hot steam!" (No smoking sign). 

With wet feet and wet ponytails, we head to grab supplies. I use speaker phone with the windows down to call the vent team again about other trach changing ideas. They can barely hear me but vow to return the call when our nurse is available. We leave with our supplies and head to Sonic for a much needed pick me up treat. My phone rings as I pull into the stall and the kids play and laugh from the backseat while Chloe's team and I decide to do the change here, xray here, and send xray there to be read. We order our drinks and head back home, walking in the door at 4:55pm. A fast trach care and down comes Alan just before our nurse heads home. He can't sleep so he comes down to help. He attempts some Daddy time teaching the kids Guitar Hero to Every Rose Has Its Thorns while I sneak into the back bedroom to take a call with our local pediatrician about this trach situation. I come out to cook supper. It's now 6pm. My husband has rehearsal in an hour. I try to rush and get supper while he takes care of the kids and practically continuously suctions Chloe. He eats at 6:34pm and rushes out the door to practice. 

We make it through supper, through suctioning and Chloe finally settles in for a nap. We color. We do school books. We learn guitar, or try to as my son "gives me a guitar lesson". We read books. We snuggle. We do prayers. We do bedtimes. Alan walks in the door at 9pm as the kids finally go to sleep (after bathroom trips, water trips, and begs for snacks). 

I sit down. Alan sits down. I design and breathe. He plays video games and breathes. We stay like this for the next hour and a half, him popping up to suction once in a while. A few words are exchanged, but mainly silence except for the hum of Chloe's fan and the sound of Alan's game. 

It's the best conversation we've had all day. It's beautiful and relaxing and we both understand each other completely, even if no words are exchanged. 

He begins night shift. I head for 6.5 hours of sleep before we trade. Lights out. 

Update, Game Plan, Changed Plan

Going to try my best to update on a few (a lot of) things, but it's 4:15am, so let's see how this goes...

>>Sweet girl turned 1 year old on the 25th of last month!! YAY!!!

>>Then she had heart cath on the 28th. Progress...

>>Then she was extremely sore from pokes and started a stomach and GI bug on the 30th. Boo >:(

>>We got results from the cath back, set up a game plan for the next few months thru end of summer, started to look at scheduling things, like a bronchoscopy//ear tubes//check GI tract by end of May.

****CHLOE HEARD THE PLAN****

If you don't know much about Chloe, she likes to switch things up the minute we make a plan. She let's us know that the Good Lord and her are gonna make up their own minds. What's that verse? "The heart of man plans his way, but the Lord establishes His steps." Proverbs 16:9. {You can listen to a sermon from Chloe's Daddy on this very subject here).

So we got the call last Friday about the game plan. It included doing a bronchogram (aka scope her airway while she's under) to check the bronchomalacia (where her airway clamps down when she breathes out-the only reason she's on the vent) to see if it's still there; to check for the possible trach ring because if it's there and bad, they can now do the reconstructive surgery at Childrens WITH the heart surgery!!! This is huge. HUGE. If it is, they can do the surgery, meaning in the future, she might be able to be off her trach completely and have what's called a decannulation, or close that hole right on up and breathe through her mouth/nose instead. Our goal then was to make rounds this month seeing a few peeps like her old friends back at nephrology, ENT, home vent team visit, and get these tests scheduled so we can get to scootin' on seeing what this trach stuff looks like.

But it's baseball season. Chloe likes baseball. She likes to throw curve balls, in fact. Slightly big ones. You see, the original game plan meant we might be able to push the Glenn procedure back till July or even end of summer, letting her get bigger, come off the vent completely, perhaps even if this trach ring isn't there or can be fixed, and the bronchomalacia isn't there/healed, then even decannulate before the Glenn.

And then there was last Friday...

>>Sats slowly trending down from Friday evening through Monday morning, finally hitting around 71 with desats to 64 on Monday and requiring a little 02 to bump them back up. Heart rate increased from her norm. Looked flush/pale most of the morning. I literally woke up thinking today was cleaning day, and within the first hour I was awake, we were on the phone with home vent team, packing the kids' overnight bags and a few little toys incase we had to go to KC quickly. Turns out by then she started doing ok, home vent had us keep a close eye on her, and made a last minute appointment for Tuesday.

>>Tuesday the 12th--met with Home Vent team (aka primary docs) and GI doctor to discuss this crazy spit up cycle.

•  Found out that what's most likely happening is that these viruses she's had are causing havoc on her GI system, and temporarily paralyzing it to where her intestines and stomach can't agree on which way to push the food...front door or back door. And because of her heart, there's extra pressure on this system. Two options: 1) Switch formula. Not many to choose from at this point, but there is one, and we'd try this first before giving more meds. 2) Meds. Antibiotic to help system remember its job. This question was thrown to the heart team to make the final decision.
• She needs a longer pediatric sized trach instead of her neonatal sized trach. But they were all out, and we need to do an xray after putting in a new one, thus we'll have to reschedule this for another appointment this month when the custom trach is in. 
• The longer trach will also help a bit with eliminating spit ups. We're now suctioning more often/quicker when she coughs because we know it's too short and more secretions could gather and possibly clog off the trach (BAD!). 
• Xray on stomach and chest just to make sure there's nothing else we should know about with this sneaky one. 

>>Labs for anti-clogging genetic test before upcoming procedures, CBC (red blood count great, even slightly high / / white blood count up as well though, meaning she definitely is working on an infection / / kidneys still looked good on labs).

>>Then we made our sweet way to the CHAMPS clinic, running into our beloved PACT doctor in the hallway and bragging on how well our little trach trunk elephant is doing.

• >>CHAMPS took BP, and it wasn't pretty. Average of 3 was 140's / 70's. That's bad for an adult. Chloe is one year and weighs 17.5 pounds. GAHH!! They wanted to do an echo because the last she had was in February. We were slightly confused thinking they did one during her heart cath just two weeks ago, but they said they didn't end up doing it. So off to an echo that took another 40min. The results were that her valve (she only has one working valve) is leaking. A lot. Hence the high blood pressure. Kidney and heart are apparently on opposing teams right now, if we're keeping with the baseball theme. Kidney is working hard >> Heart is having to squeeze harder to help block off some of the flow through that valve because it wants to leak so bad >> Squeezing harder equals more pressure on her little heart and body >> Means Mr. Kidney is making for some seriously high blood pressure. Only fix is medicine, so we started going up on her blood pressure med, will monitor this over the next few days and try to take BP at home. This med can cause sats to drop though, so we'll watch for sats to hang out in lower 70's, with a lot of dropping into 60's at which point we'll do oxygen. If she starts riding over 1L 02 on average, then we get her back to CMH and they admit her, bump the bronch WAYYYY up, get it done, get results, get game plan for surgery, and bump the Glenn way up. The Glenn alone will take half the work off her heart, thus relaxing her heart, thus relaxing that pressure on it and the higher BP should lower as well. 

So this is where we stop to PRAISE. You see, they didn't do the echo in the cath. But the cath showed minor leakage in that valve. We thought we were all ok here. Turns out, it was only minor at the time because she was sedated and so relaxed that her BP during the procedure was low. Praise the Lord that they didn't end up doing the echo or it would have showed the same thing. Since it was done when she wasn't under, it showed just how bad this leak is. In His sovereignty, the echo was done at the precise time so that we could gather the info we need.

****New Plan**** {Please, seriously folks, don't tell Chloe}

 >>All of the above. Go back for appointments all through May for ENT, Home Vent to follow up on trach and GI stuff, see nephrology (aka kidney doc) to check for why kidney is doing this other than just the current station of her heart, get this bronch scheduled asap. Get her weaned off the vent 24hr. Currently (literally, tonight/morning) she's at 22+ hours off. She's also still fighting off a little something, so we're watching that, and making sure she's not dehydrated (perhaps why heart rate is slightly higher). I'll add in the prayer request (assuming the other requests are obvious at this point from reading the post) for safe travels for all of these trips, for logistics of all the appointments to smooth out, and for help with childcare.

Nervous factors: Seeing her trend down on sats and knowing she needs 02 to stay up, yet at the same time knowing that's ok and what we need to do for now. Wondering how long she will do that before we have to admit her. Watching her need oxygen. She's been doing so good that it just sort of hit me how sick she is at the moment. But remembering that she is fearfully and wonderfully made and we are trusting the Lord with this.

Other factors: Sensitive hearts. We're seeing a lot of babies born last year around this time who are turning one, eating their cakes, taking their first steps, growing and getting bigger each day. We're noticing just how far behind Chloe is. It's so hard. We were just talking the other day that we're so far removed for what "normal" babies/toddlers look like size-wise and developmentally that it's hard to even judge what age other toddlers or infants are. We're trying very much to remember to cling to the fact that God made Chloe just how she is and it's not our place to mourn the milestones she's not at yet, but rather to rejoice in all she's accomplished. Easier said than done, but our goal none-the-less. It just feels like another season of mourning with those who mourn and rejoicing with those who rejoice. Being joyful in seeing others' lives moving forward {Romans 12:15}; being content with where our season is right now {Philippians 4:11-13}; and laughing in the face of fear {Proverbs 31:25}. The last especially applies in our coming season of being back in the PICU for the bronch and Glenn. So many sights, sounds, fears when walking into that unit...so many waves of memories from exactly a year ago. Please pray for peace as we begin to walk backwards, into a season of unknowns, surgeries, long days and sleepless nights, Ronald McDonald house overnights, missing our kiddos...back into the hospital world, back into another summer where we can't plan anything normal, like picnics and playgrounds with the kids, swimming lessons, or other fun family summer pastimes because we don't even know what our summer calendar will look like...because it'll stop for a moment in time while the world swims past us again...

But we continue to do so, one step at a time, with hope.

     

Your Mercies Are New

"But this I call to mind,

and therefore I have hope:

The steadfast love of the Lord never ceases;

His mercies never come to an end;

they are new every morning;

great is Your faithfulness.

'The Lord is my portion,' says my soul,

'and therefore I will hope in Him.' "

Lamentations 3:21-24

This was perhaps one of the best gifts we, not just Chloe, received for her first birthday. This is the front of the card that my aunt, Chloe's great {definition: awesome} aunt, gave to her with her gift. I knew immediately where it was from.

When I was a child I got to go with my family to my aunt's family's land across from the mighty Mississippi, just over the border from Iowa into Illinois. After a picnic on her family's land, we went to Tyson Creek, which had been owned by her family since 1826. We spent hours that hot, muggy summer day wading up and down the muddy creek looking for fun rocks, arrowheads, and more. It was a fun day and fun opportunity to learn more about my aunt's heritage. 

I opened the card while Alan held Chloe on the morning of her birthday as we opened gifts, and after recognizing the picture, read these words,

Chloe,

This is a place when you get bigger and come to see us in Iowa, 

I will take you here.

This is a creek where we walk and look for pretty rocks

and will picnic too :). 

I love that we--us, our family, Chloe, her doctors, our friends and loved ones, and the many who pray for her--never give up on here. We've fought for her since she was still in the womb. We refuse to look at her and see this child who has "too much" and give up. She's such a little fighter; it amazes us daily. 

I love that in the simplicity of this card, this picture, those few words, that it shows how loved she is and how much we believe in her. 

His mercies are new every morning. His love is fresh every day. 

We wait with baited breath for the phone call about how her cath went. Her team of doctors meets Friday to discuss it. It's a huge unknown...all we can gather so far is that surgery, the Glenn, is not out of the question or taken off the table, meaning so far, there's no reason to believe she wouldn't be a candidate for it. But not all of the team has met yet. And there's concerns, such as if she'll be off her vent by then. And then we all get this curve ball thrown in called a stomach virus that's keeping her from being off her vent tonight. She went eighteen hours yesterday and the day before, praise the Lord! So we pray, we hope for new mercies each day, like getting over this bug and back on track with feeling better. We pray and hope for a good meeting with docs and that they would be ready to present her case as a candidate for this procedure. We could have the mindset of this world and our own selfish kingdoms and sit here stewing, letting anxiety rise, and questioning all of the what-if's, and I do at times, but for the most part, we obey by trusting in His sovereignty. Truth is, we live in a fallen world, and nothing is possible in this world without our Lord Jesus. We trust He'll walk us through this fallen, disease stricken, imperfect ground, for His glory and as a part of His story. 

We trust in this because He's seen us through so much that everyone else said was impossible. I was sorting clothes to send to a dear friend expecting a sweet baby girl, and was sorting through Chloe's clothes. Tears welled up in the corners of my tired eyes as my hands graced the fabrics of NICU clothes, preemie-tiny onesies and pants, sleepers and socks. So tiny. We never thought we'd see the day she'd wear size 12 month clothes, and yet, here we are, happily putting on her new birthday outfits, size 12 months, and silently kicking myself for buying her some nine month onesies that I washed before checking size on her and thus were too small. Too small. Too little for our tiny princess. She's got chunks and cheeks and stink neck hidden in those rolls. Never loved the smell of a stinky, chubby baby so much. 

We have hope that she'll be off this vent in time for surgery.

We trust in our Lord that He's brought us this far, and no matter what, He'll see us through the next part. 

And we smile. And think of the day when we can take sweet Chloe to Iowa, the land of her ancestors, to meet family and see her roots, and to wade in the water and pick up rocks in Tyson Creek.