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. 

Our Version of Narnia: A New Direction For The Blog

My Keurig is in time-out. See how sorry he looks, with his head down and shameful. I apparently just made it a he. See, I need coffee to make thoughts into words into sentences, but he's not helping. According to Google, I need to 'de-scale' him. I've tried this a zillion times in the last month, but never tried each of the steps all at once, which is probably what they meant for me to do in the first place. So this morning, after spending 30min trying to get one 8oz cup of coffee started, I gave up, grabbed the keys, raced to the store for vinegar and paperclips (to de-scale it clean it, according to Google) and Radinas on the hill for a replacement/temporary intervention.

Today is Monday, incase you forgot. I did. Alan did last night when he set his alarm.

Monday. I used to be in love with Mondays. For the past few years, Monday was our family day. Our day off. Our disconnect-from-the-world day. Our sleep in, drink coffee Saturday. Only it's on Monday. But as of this last month and a lot of nursing schedules trying to get worked out, my husband's day off was switched to Thursday so that I can be night nurse on Wednesdays and have help on Thursdays, which we do ourselves. It's complicated. Praise the Lord, Chloe's day nurse is able to pick up Mondays now as I was doing Mondays alone as well. I love the days when it's just me and the kids, but let's face it, schooling doesn't happen, laundry barely happens, and cleaning...what's that?

So it's Monday. It's a Monday, in the truest sense of the word. I understand again why people say things like, "Well, it's a Monday."

Like when the Keurig broke before I started this Monday.

Like when Chloe puked all day yesterday, a phone call to doctor who said try Pedialyte all night and call after an hour or two of regular feeds in the morning.

Like calling the doctor back this morning to say Chloe puked 20ml...half an hour's worth of feed, aka half a turkey dinner, within the first hour of being back on formula.

Like hearing the doctor laugh a bit and sigh and say of course she did. Chloe throws us for loops. She keeps us on our toes. Hang on...I need to go turn on her question mark light for the day...

Like when our sweet middle child fell outside, screamed in horror as she ran to the side door and announced she'd falled (I would correct that to fell, but it just helps go to show how important it is that my Keurig obey. I seriously typed falled and didn't realize it till re-reading this) on her bum and I stripped her to her bear bottom in broad outdoor daylight to check.

Like emailing our nursing company about possible scheduling issues and how to come up with a new schedule pronto because our beloved weekend night nurse is leaving. This, after just spending the last month trying desperately to get a night schedule figured out.

Like sitting by my phone trying to get a few things done, but scared to run to the bathroom or go out and help the kids or play with them without fear of missing this important phone call from her doctor about what to do for the little stinker's formula. The fact that she's still having belly issues and we can't even sit her up without her puking. Seriously. Tried her bumbo yesterday. Puked. Tried holding her. Puked. Tried putting her in her swing this morning. Puked. Something isn't right. It's a question mark and her team and us are all scrambling to figure it out so she can be a happy baby again, and hopefully in time for her heart surgery in a month or so. Like pulling our hair out some days wanting to help our daughter eat and hold her and put her on her belly for belly time (last belly time was I think Christmas), or hold her up on my shoulder for snuggles, but knowing it'll hurt her and she'll get sick and then sick equals tired and tired no food equals restless and the cycle continues...

Yep. It's Monday.

But we power through and love each day the Lord grants us. Even the Mondays.

Many have said things lately like they don't know how we do it. Well, this post is a slight introduction to address that question. As in, this is a typical day for us.  At one point, we felt like putting our blog words into book form might help explain our journey and encourage others. However, we waited, sometimes patiently, sometimes not, sometimes wondering and praying over this blog, and realized that I believe the Lord meant to use this to help show a glimpse into the life of a special needs or medical family. Not a book. Just daily or weekly writings to show what our world is like. I was talking with a friend recently trying to explain this, and explained that before we had a special needs child, we didn't know hardly a soul around that had a special needs child or was a medical family. We knew of a few, but didn't know much. After having Chloe, our world opened up to other families. Our eyes were clearer seeing things new and brighter in our more opened world, and many families began to reach out and say hey, we have a special needs child, or our son/daughter has a heart condition, or my son/daughter has a gtube....

Our hope is to take this blog into a new direction. To no longer only write of how Chloe is and how she's doing and what prayers we would ask for her, but to share glimpses into what our daily life is like as a medical family.

(Our) Definition of Medical Family: One in which a member or members spend many hours daily caring for or having interactions with doctors, pharmacists, hospital visits, procedures, appointments, etc. Where there's not one day that goes by without the use of gloves or syringes or phone calls to PT/OT or other therapies. Where mundane tasks like mowing or groceries are centered around nursing schedules and feed breaks.

Some wonder how it all works. How we do it. What it looks like. Well, we didn't know until we willingly (meaning did not choose abortion for our own convenience) placed our hands on the delicately carved knobs and opened a door into that of the unknown, much like Edmund pushing his way through the coats in the wardrobe and into a whole new world that he didn't expect to see. This is our Narnia. This is our search for the Lord on a daily basis, and learning each day something new, or something hard, or something weird (medical families have a weird sense of humor ;) ), or something scary, or something encouraging....

And something to point out: This blog is not written for readership. It's written for realship. We've learned on this journey the importance of being real, honest, and that it's all relational. Relationships mean so much in this life. It's what connects us, what keeps us going. Our relationship with the Lord and our relationships with others are what mean the most to us. For that reason, we're not writing to watch the numbers climb on the "this post has been read x amount of times" page as we begin to share more of our lives here, but instead, our hope is simply to share our lives on this journey, the atypical life. It's not a normal one to many, not the American dream many dream of for their family, but it's as normal as it's going to get for us. Many medical families withdraw from so much because we're so...not normal? We've felt ourselves have to do it at times, like winter during cold and flu season. But our hope, perhaps with this blog, is to break that cycle. To hopefully share the joys of this life, things other families might not ever see or endure, but the joy and hope that can rise from it. It's time that society not only accept people and families like ours as "normal", but help us to navigate into the mainstream life, not be separated out. I often wonder if you added it up, are there more medical families in this world than our American standard of "normal" families. But I often wonder if part of this is because we withdraw...because we don't know how to relate to other families, perhaps because that's what our lives used to be and perhaps we struggle a bit with that...thoughts to address in coming posts... Oh I'm excited to dive into these topics!

But for now, welcome to our Narnia. Welcome to our Mondays. Welcome to a deeper part of our adventure. We hope that this new direction of the blog will encourage you. You might be a medical family and struggle with things like us, or perhaps a normal family hoping to have a glimpse in to understand more. We hope that you'll find hope, love, joy, and deepening faith in Jesus as you walk this with us.

Best part of Mondays that I never knew before: Radina's has free shots on Monday.  And by Radina's I mean our local coffeeshop. And by shots, we mean espresso or caramel or raspberry flavoring. Couldn't have written this, or tackled any of my day, without my triple raspberry mocha with double shot of espresso.

Welcome, Monday. Bring it on!! Now to homeschool, wait for a call back from the doctor, and work on tearing down a big girl crib to bring downstairs today ;). Someone's outgrown her mini crib!

Happy Birthday & Heart Cath

Chloe celebrated a huge milestone last weekend: She turned 1 year old!!!

There were so many amazing emotions that surrounded that day. Sometime, someday, I'll write them all down. But for now, I'm simply still pondering it all in my heart, much like Mary did with events in Jesus' life. I still cannot wrap up in one post all that this last year has taken us through and taught us and the many ways and things it has taught us to embrace. So for now, I ponder them. 

On the Monday following Chloe's birthday, we said goodbye to our bigs and headed to KC for her heart cath. We weren't sure what to expect with this. It could be anything from a simple procedure to needing emergency heart surgery if they found something worrisome. We converted the RMcD room into a home nursing room. We moved tables and chairs and trouble-shooted a lot (Shooted? Shot? Espresso? Double shot? Yes, please). Chloe got her first real tub bath, which she LOVED until Mommy accidentally got water right in her ear. We managed trach care on the edge of the bed, being uber careful of keeping all supplies clean and sterile. Then Chloe zonked out on her memory foam queen bed, fit for a princess. We nursed her through the night trading off in the wee morning hours and crashing from exhaustion or living on caffeine. At least this visit, since we had Chloe with us, we were blessed with a suite and had access to a kitchen sink, refridgerator, ice. Creature comforts. Here's a few images to show what traveling/staying overnight is like with Chloe....

After getting all settled into our room, we got the call that she needed more labs, so instead of packing up the van, we packed up the stroller and took her for a beautiful warm walk. Forgive her father for the goofy pic. He was high on caffeine and low on sleep. 

Chloe's turn to run across the big piano like her siblings did last year!! She loved it :). Then konked.

Passed out after a day of appointments and labs. 

Happy bathed baby, ready for trach care.

Yep, had to use Alan's backpack to hang the feed bag up above the pump. #alwaysimprovising. 

Thankful for counter space this time to clean trach, dry her things, and space to set up a better overnight environment for her. Missing from this picture is the giant tote of all things emergency, extra oxygen, power cords...this chick doesn't travel with carry-on's. 

Trach Tip: When traveling, throw all trach supplies in a HUGE container so that they're kept clean and easy to find in an emergency. This helped us a ton instead of packing random supplies in the emergency tote or trach bag. 

Tired baby. She really hated Mr. Sun and thought morning wake up time was for the birds. 

Tuesday morning's cath didn't actually start until after noon as the case before ran late. We should have gotten the call that she was out and they were getting started at the one 1hr 15min mark, but instead didn't hear until nearly two hours. After it was done we met with the doctor that performed the cath for consultation. I'm still foggy on a lot of what he said, but I'll do my best to sum it up. 

Praise the Lord there was nothing that was cause for emergency or concern. That's the first praise. Another praise is that the valve that has some slight reflux, which is most likely due to her blood pressure, is not moderate as they thought after her echo in February, but instead is extremely mild and not even on their list of concerns right now. He shunt is currently looking good and working properly.

Chloe's heart, as like many heart patients who are missing or have deformed hearts, has two superior vena cavas instead of just one. I probably spelled that completely wrong. Let's review: double shot of espresso please. Most of the time, when there are two, there is a vein running between the two to connect them. For the Glenn shunt to work (her next anticipated surgery), this is helpful because they can put in one shut, but it still works well because of that vein. In Chloe's case, there isn't one, so they'd need to put a shunt on both of the SVC's. Not sure the physics behind if this would work or not or be OK or have complications...that's for the team to discuss and weigh in on. 

At this time, the biggest question mark and point for concern is that Chloe is off her vent about sixteen hours a day, working towards eighteen this week, goal of off 24hrs (completely off) by heart surgery. Being on her vent affects the pressures in her heart and lungs. For the most optimal and best results and to set her up for success during recovery and procedure itself, we need her to meet this off the vent goal. And fast. Babies who are on ventilator and have this surgery...there's simply not a lot of good outcomes...The pressures recorded last week were at 21. Optimal is 20 and under. She's SO close. Our prayer is that she can wean the rest of the way off the vent before surgery is set. This is something they are greatly considering since she is so close, and thus heart surgery might be closer to June...July...perhaps August?? We just don't know yet. 

We're relieved that there were no big huge red flags that said either she needs something immediately, or that there's nothing flashing a big stop sign saying the next surgery is too risky and thus, the road would end soon. But this also means that Chloe's team has a LOT to discuss, risks to weigh, and we need to pray. The team will meet hopefully this Friday to discuss her case and then present her case to the surgical team as a candidate for the Glenn procedure (aka open heart with lung bypass surgery). 

Along with the procedure came some complications. She's a hard poke. It took them a ton of poking before they could finally get an IV in and cath line in. So much so, that there were questions surrounding this in the days after, as we notice more and more pokes, we had to come up with a game plan for next procedure and it will most likely include another PICC line. We're less than thrilled since this is how she got her clot last year, but trusting in the Lord to protect her when this time comes again. She also required a trach change during the procedure as she coughed her trach out. Putting it back in quickly, along with the IV next to her trach site left some issues and she ended up somehow coughing a little blood back down into her lungs. This played out over the next 24hrs with desatting to 60's (her normal oxygen saturation levels are around 80), and required oxygen off and on throughout the night and next day. A phone call to her vent doctor and it was decided that when blood gets in the lungs there can be a reaction much like asthma, so we began another albuterol inhaler plus flovent inhaler (steroid) regiment for the week. She's finally off oxygen as of Thursday afternoon, and as of yesterday started off vent/HME trails again, but yesterday only got to 7.5hrs. We'll get there though, in time and prayer. 

This simple cath was not so simple after all. So much to pray for. So much to seek the Lord on and about and for. But of all of this, we pray for peace and wisdom. We're still not sure if even having the Glenn means she can have the last heart surgery at age 3 or 4 because the trach comes greatly into play. That even off the vent, but still breathing through a trach means that surgery might not be possible. One thing we've come to learn with Chloe is that we just. don't. know. There have been so many questions surrounding each procedure, and yet she fights. There have been many in the past who didn't want us to put her through trach surgery, gtube, even heart surgery because they didn't think she'd survive. But she has. She's a fighter. We're saying now what we've said before, which is that if she's fighting, then we fight for her. If and when she lets us know otherwise, then we'll talk, but until then, we trust greatly and deeply in this peace the Lord has granted us to continue on this path of this-side-of-Heaven healing for her. 

Seems fitting to end this post with scripture, specifically the words we chose for our family on the day we had our family dedication two months ago. Trusting in the Lord as we raise and care for Chloe as well as her siblings. Trusting that He will make our paths straight, that we will trust not in our own understanding of this journey, but in His alone. 

My son, do not forget my teaching, 
but let your heart keep my commandments,
for length of days and years of life
and peace they will add to you.

Let not steadfast love and faithfulness forsake you;
bind them around your neck; 
write them on the tablet of your heart. 
So you will find favor and good success
in the sight of God and man.

Trust in the Lord with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge Him,
and He will make straight your paths. 

Be not wise in your own eyes;
fear the Lord, and turn away from evil.
It will be healing to your flesh
and refreshment to your bones. 

(Proverbs 3:1-8 ESV)