Day 99

Today is National Coffee Day, and I haven't had my coffee yet.

Last weekend we tried to rent a car for my husband to get back to our hometown for the weekend. Then realized the rental wasn't going to happen because they needed the actual business card, not just the information for it. Plan A fail.

Last weekend we ventured home for a quick respite, deciding to just all pack up and go as a family since Chloe was doing good, but instead of the activities we had planned while home for two days, I ended up in bed with a nasty virus, no energy, and a fever. And a marathon on Netflix.

Last weekend we also walked in our home to find that our dear, beloved family pet had passed away. We had a mini immediate family members only memorial and burial. We were caught completely off guard, and there were many tears while burying the cat that I'd gotten when still in high school. Instead of a fun pumpkin patch with the kids, we stood in the rain that was gently hitting all the memories of our pet and explained death to a five and four year old.

Last weekend we decided to come back on Monday since I was still worn out. Then we found out Chloe wasn't doing very good and dropped into the 40's at one point. We flew around the house packing back up and diving into the car to get back to KC in record time so that Alan could go help with Chloe.

Today is Day 99. Well, we were home for a total of 4.5 days this summer, but since we were constantly on the phone with Chloe's team, we were basically still connected together in this through those days. So it's Day 99. I'm 36 hours fever free from a bug I didn't expect to tackle me down. The kids are playing with home-made paper light sabers and minimal toys in a room containing only two beds, a night stand, a desk, and a bathroom that we've lived in together for over the last month. They're probably on their 99th juice box of the stay as well.

Chloe continues to throw us for loops and whirls, spins and turns. One day good the next day not. One week of progress, one week backwards. I could go into all of the medical jargon of where we've come since surgery, which by the way went swimmingly and she did amazing with, but I'd be talking myself in a circle because of the loops she's thrown us and wild goose chases we've tried. It's been the series of infections and trying to find the delicate balance of ventilator settings that's been the hold-up. One day we have the right settings and she's happy and we start weaning, but the next day she's decided she's too much of a diva for those settings and doesn't want to play well with the respiratory therapist changing her settings.

We could go on about what's going on in her little body, but truth is, it's so incredibly layered and we're all just trying to stay one step ahead of her instead of two steps behind her. I know this all sounds vague and are probably wondering about more details or why this is dragging out so long before we get to go back home, but the truth is, it's not our timeline. Just like the above examples were not our timeline. We're not out of the woods yet. We're concerned about her extra fluid. We're worn trying to calm her when sedations or meds wear off. We're frustrated when things that could help her are getting overlooked (hence why we're all here, trying stay here and help her). The good news is her initial surgery went great, it's just that the recovery road isn't paved. It's a bumpy off-road one. It's more like a cobblestone path with grass sprouting between the stones than newly paved asphalt. We've done our best to update, but honestly, there are days we don't know how to sum things up. "Did she have a good day?" is hard for us to answer sometimes. In the big picture, she's here and fighting, so yes, it was a good day. But she was restless, demanding someone (usually Daddy) holds her hand, and begged the nurse for more sedation meds. There are good days too, though, where she'll open both eyes, suck on her hands or try to yank out her brand new teeth. Where she still finds a way to kick off her saturation probe or throws her taggie around, or smiles when she pees on you the moment you go to change her diaper. Last week the bad outweighed the good. The last few days she's held her own much better but still looks worn. Hopefully by this week we can figure out better settings and see if there's anything else bugging her. Literally. She keeps spiking fevers, but all cultures are coming back clean.

Although worn, and although, to be real, there are days we need a break and we need an escape or we'll lose it...where we need out for two minutes, or two hours....we'll still continue on and embrace Day 100 tomorrow with tired but hopeful hearts. We didn't expect when we started this in late Spring that it would continue until October, but we're here. It's fall. We march on, through the falling leaves, and pray that we gain the wisdom we need to help her continue to improve, and we pray she can be home by the end of October. That's our new goal, at least.

Because even though our plans changed, and we weren't home within a couple weeks of her surgery, or that nothing this summer, or even this last weekend, or the last year...or two...went the way we planned, we know that the One who holds our steps is on this cobblestone road walking with us. Right beside us. Ahead of us. All around us. Because if we were left to direct our own path through this, we'd crumble. The only One lifting us up through this is Him.

Proverbs 16:9 says, "In the heart man plans his way, but the Lord establishes his steps."

He is sovereign over all.

Hibernation Season

Hibernation season is upon us, coming quickly on the heels of the first approaching frost, if not sooner.

I don’t mean for the squirrels who have gathered acorns for the last few months, angrily staring me down as I walk the path to the hospital, and threatening me with their bushy little tails.

I mean for us medical families.

Hibernation season. The season whereupon we gather together as a family and vow to uphold the most impeccable cleanliness known to man, should we be forced to venture out into the wild.

Hibernation season. Something we willingly do to help protect our immune fragile kiddos.

Hibernation season. To be honest, this season is hard. It’s pulling away from everything to protect the thing that matters most to us. But it’s hard. Quite depressing to be honest. And it’s hard to get the comments back about how ridiculous it is to insist on our seasonal family bubble.

As if we don’t already suffer from enough anxiety on a daily basis, we then have a panic set in this time of year. We begin to make check list after check list for World War Germ.

Grocery List: Need more hand sanitizer. Need more disinfectant wipes. Need signs for the door. Need hand sanitizing station. Need ten foot pole {because I totally heard that person cough over there and I need to measure my distance! I’ve watched the germ episode on MythBusters, people. I KNOW germs spread four feet when you sneeze through your hand and not the crook of your arm!!}.

While some of you might think to pity us stay-at-home-bubblers and think we are crazy, just remember: a common cold can land our child in the PICU. No joke. One green-snotter and BAM. Call the life-flight ‘cause this child’s sats are dropping fast. And there’s nothing like a mama bear whose trached child has been off their vent for 6 months, only to be put back on ventilator settings while riding the beast that is a common cold.

But there are some perks to HS {hibernation season}:

You get to have your groceries delivered. Yes. You simply sit down with a cup of hot apple cider, on your couch covered in bouncing children and toys, and select your items with the touch of a magic button. They then amazingly appear at your doorstep within the day. No crazy kids in the fruit snack section crying over mommy saying no to Frozen fruit snacks. No over-buying because you skipped lunch. Don’t lie. We’ve all done it. And if your grocery store is as AWESOME as ours, they’ll deliver balloons for the kids from time to time and ask how our sweet girl is doing these days. They’ll cry with you on a hard day. They’ll encourage you. They’ll politely stay at your front door while you check off the items because they are aware that they work in a very publicly germed-up place. Germed-up. New term for any location containing 5 or more children. Don’t even get me started on those indoor fast food play areas…

You get to avoid the awkward handshakes and half hugs. If you’re like my husband, you get to avoid hugs all-together. Except for the PACT team. Palliative Care team always seems to succeed at this. Instead you can simply pull out your crocheted winter seasonal sweater that says, “Germ Season. No Hugs or Handshakes,” and wear it to the staff Christmas party…that you’re not attending…because it’s outside of your bubble…but you are attending via Skype.

But most of all, the best perk of HS is, to be honest, the incredible amount of family time that comes with cancelling any and every activity from Halloween to Easter. Yes, it’s hard to cross off “visit pumpkin patch” or “attend Christmas concert”, and your heart aches with a certain ache that is from days before you ever believed your heart would be in this place now. But you’re in this together, doing this as a family, loving on the member(s) of your family who need it most. You’re teaching them and showing them how important they are and their health is to you. You’re getting more hours in the day to soak them up, snuggle them up, and be together.

So cue the Christmas music. Dig out the comfy sweats. Winterize the house. Hang the beautiful chalkboard sign, decorated with cedar bows and cranberries, outside your door that says, “Have You Coughed Lately?” in a delicate hand-scripted Christmas-card-worthy font. Make some more DIY Sharpie mugs because you’re going to use them on those cold November nights when the wind is blowing the leaves into dark swirls against the harvest moon’s glow, the homemade hot chocolate warms you down to the bottom of your yoga pants as you snuggle with your loved little, and the oxygen saturation monitor rings off {because your child pulled it off, again}.

Welcome to hibernation season!

Warm season’s greetings from our closed door to yours!

Seasonal Tip: Bring the leaves inside for the perfect fall photo session!

She does open her eyes. She was stubborn this day ;). 

All images copyright 2014 Our Chloe Elizabeth. May not be reproduced in any way without permission from this blog. 

Fill the Fridge, Pack the Pantry, Love on the House that Love Built

All Photo Credits Jodie Gerling//Chloe Girl Designs

The image above needs an arrow pointing to the third floor that says, "You Are Here."

We've been here, loved on at the Ronald McDonald house {House #2 as our son calls it}, for the third month in a row, for the second summer in a row.

And we've truly learned that this is indeed the house that LOVE built.

It's welcomed us upon each arrival with strong doors, open wide to receive us {and all our luggage {(we're sort of over-packers)}.

It's relaxed us after long days in the NICU or PICU.

It's given us a place to temporarily call home. And in our case, temporary means a total of five months last summer and three months plus this summer...er, fall...

It's reminded us to dance in the storm.

It's provided a place to drink some milk when you have heartburn at 7pm. Seriously. Just now, as I write this and my Kindergartener begged for milk because he has heartburn. Well, little dude, good thing there's always milk stocked in the community fridge!! Downstairs we go, pj's and all! {Check out those snazzy pj's with custom buttoning...}

And it's because of the donations from people like you, providing the time and energy from people like you, for us to have moments like this and be a together-family right now while our storm passes through. 

But in order for the house to love on families staying here, it has to first be loved on by others. 

Would you take the time to love on the Ronald McDonald Houses of Kansas City? Here's some ways you can help:

FILL THE FRIDGE!!

(Item ideas)

Milk {any %}

Apple Juice {surgery kiddos can only have clear liquids}

Fresh Fruit

Yogurt

Soy or Almond Milk

Cheese Sticks {for quick protein}

Eggs. Eggs. Eggs. {I don't think there's ever really quite enough}

Butter and Real Sweet Cream Butter

Coffee Creamer

Ketchup

FREEZE OUT!!

Frozen Pizzas 

Meat//Chicken, Beef

Chicken Nuggets {because really, what family doesn't eat those for a quick on-the-go, get-back-to-the-hospital meal?

Waffles

Breakfast Sandwiches//Breakfast Items

PACK THE PANTRY!!

Juice Boxes

Cake Mixes {because we really do celebrate family birthdays while living here}

Chips {the individual serving bags are great}

Paper/Plastic Items--Plates, Cups, Paper Towels, Napkins, Silverware

Hot Cocoa Packets {Fall is upon us!}

Bread

Pudding Cups

Cereal

Gluten-Free Baking Items

Muffin Mixes {Seriously, coolest thing is when families cook and share with each other. Often someone will make a batch of cookies or muffins and leave them out for all to share}

Granola Bars

To-Go Coffee Cups with lids

Coffee

Pop-Tarts {I know. Horribly unhealthy. Awesomely quick and child-pleasing. Remember, these are the hospital days. Pick your battles, parents}.  

Chocolate {Mamas of littles get emotional. So I've heard.}

STOCK THE SHELVES!!

{Laundry Room Items/Personal Care Items}

Laundry Detergent

Laundry Baskets for Cherry Street House and Longfellow House

Razors

Shampoos//Conditioner {travel size}

Brush//Comb {Put in sealed baggie--they won't be reused, but seriously, we've all forgotten to pack it at one time or another}

Toothbrushes//Toothpaste//Floss

TP

Feminine Products

Contact Solution//Contact Cases

Travel Size Body Wash

Travel Size Deoderant

Hairspray

ADDITIONAL DONATION IDEAS

DVD's for the basement theaters

New Baby Swing or Baby Bouncers for families to check out and have in their rooms

New Toys for basement play areas at each house

*New because well, we're all paranoid about germ bugs and most kiddos here are high risk if they pick up unwanted bugs*

Leave gift cards to restaurants or places like Walmart or Target at the Front Desk of each house to be handed out to new families checking in. 

*VOLUNTEER*

To help wash and fold towels and bedding.

To stock shelves.

To offer to help do family's laundry here at the house so they can be by their loved one over at the hospital.

To help with an activity in the community room after dinner {i.e. crafts, games, spa night for the mama's and daughters, project time in the community room with other families staying in the houses.}

To make a lunch or supper-time meal for the house. Great idea for youth groups, community groups, businesses, etc. to donate their time and energy in such a mighty way. 

To sponsor a guest room. {We're currently in the Harley Davidson room. Thank you to the Harley Davidson KC Factory!!}

To collect pop-can tabs from your school or group or organization and drop off at the Longfellow location. 

Your time. There's always projects, cleaning, stocking, sorting, paper-working, folding, loving to do around here. 

Donations can be sent to the following address:

Ronald McDonald House Charities of Kansas City

2502 Cherry Street

Kansas City, MO 64108

Ph: (816) 842-8321

Website: www.rmhckc.org

And to all who've given so much of the time, love, energy, donations,

THANK YOU. 

Thank you for making this the house that LOVE built. 

A Chloe Update {Post Heart Surgery #2}

Chloe had her heart surgery last Wednesday. It's hard to believe that your prayers coasted us through this first week already. She did amazing with the surgery and even was off of the bypass in amazing time. She's kind of awesome like that, though she doesn't like to brag.

She rocked the first couple of days with only a few slight bumps in her recovery road. Then she started getting some infections...UTI...possible trach infection/bacteria...lung infection now...all things that are treatable, if only we can get the cultures back in time to get on top of which medicine will work best for each different issue.

She was off her ventilator for an entire day, though she's back on it now due to this lung infection/respiratory stuff. But the good news is that she's proven she can do it.

Conversations around Chloe's room:

"In Chloe's time..."
"She's a fighter..."
"She knows what she wants and she tells us!"
"We wait on Chloe."
"Chloe is in charge."
"It's up to Chloe."
"She's a princess and a diva."
"Well we'll just let Chloe lead the charge."

These are words we hear ring through our ears and watch with our eyes. She's doing good, but could be much better. So we are patient. We've walked this path with her long enough to know she doesn't like to be pushed into doing something she doesn't want to do. Not ready to go off the vent? She'll fight us. Not ready to wean off the nitric oxide? She tells us. She's literally the most verbal non-verbal infant/toddler there ever was. It's funny when even her nurses and RT make comments like, "I tried to calm her but she let me know she didn't want any help!" She's fiesty. And for good reason.

So we wait. We be still and patient. She continues to be courageous. We trade off sleeping in her room at night so we can keep an eye on things, but instead we find ourselves still being her nurse and staying up into the late night hours to help comfort her (she knows who her nurses are and who Mommy and Daddy are when it comes to calming her). We suck down some Starbucks and we try for afternoon naps while the kids play in the room. We discuss vent settings with doctors at 3am. We bag suction at 5am. We request another chest xray or trach change at 7am. And we're so, so grateful for the team of PICU doctors who take us seriously, answer our questions knowing we've done our research, and let us be a part of her care. Hats off the the amazing PICU team of nurses and doctors who have come to love on her so much in the days before surgery and now after.

And we pursue living each day of this recovery journey...

One...
Day...
At...
A...
Time.

Specific Prayer Needs:
-For wisdom to know how to best make her comfortable. She's dealing with withdrawal symptoms from all of the sedation and pain meds. She is fighting us when we try to help calm her. There's a peace disrupted in this mama's heart when I can't comfort my own child as she has slight tremors, a splitting headache but doesn't understand the ice pack concept, and works herself into a fever and mess. 

-For her to rest. Right now sleep is the utmost for healing.

-For patience with each other and our kiddos on these long days. 

-For wisdom to know when to rest ourselves, and when to push ourselves to stay with her and help. Most likely the response to that is "take care of yourselves, get rest, sleep much, take it easy" comments, but with Chloe right now, we push. We must. So we pray for endurance. 

Thank you all for every single prayer said on our behalf.

"...and to know the love of Christ which surpasses knowledge, that you may be filled up to all the fullness of God. 20Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, 21to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen." 

Ephesians 3:19-21

Surgery Soon

I think we're nesting.

Surgery nesting.

I made freezer meals for family watching our littles. I introduced a little petite red head to a really good chef red head. Abi, meet the Pioneer Woman. She loved watching episodes and cooking with me. She also loved getting a fresh double chocolate muffin, warm from the oven.

 

We cleaned. We made the "while kids are with sitters//family" list of schedules, meals, medicines, contact info.

We cuddled and celebrated a birthday.

We are washing up bedding, and wiping down bathrooms.

I organized a small amount of school stuff for our oldest, not that he'll really get to any of it when there's a fun grandpa to play with instead.

We stocked the house of groceries.

I am procrastinating on packing the suitcase, yet again. I feel as though we've lived out of suitcases and bags for the last three months. I spose that's because we have.

It feels like when I nested for our other children. Spending last minute hours getting everything ready because we knew the moment we'd come home we'd be exhausted and ready to just sit. That's kind of the same mentality for when Chloe finally comes home, after a long summer in the PICU, after a long surgery, after a long healing. And doing all these errands and tasks and to-do lists helps pass the time and take my mind off what's to come.

But anxiety is starting to sink in a bit. Nerves for surgery day are coming on. This is the point where my heart begins to be torn, knowing I must leave two littles for the other little. I wonder sometimes how much of this they really understand. How much is really soaking in?

But kids are resilient, they say. Not sure who the "they" is, but so far, our kiddos are resilient. They've been amazing. Our hope is that they'll continue to be, even as we walk out that door with our bags packed ready for yet another stay in the city.

One.
Day.
At.
A.
Time.

A Taste of Home

Sometimes this hospital stuff is too much. Too sterile.

So when you walk into this kitchen...

And see a big bowl of apples. And know it's coming on fall. And you miss home.

And you just so happen to have all the ingredients.

You do this...

And can't believe the irony of cooking in such a dream kitchen even though we're here for medical reasons.

And you soak up the chance to pass on a treasured family recipe and bake with your almost 4 year old.

And then you hear a bunch of ladies walk in and say, "Mmmm, smell that cinnamon?!"

And you smile a little. Cause it's been a long day in the city, but you know that in just 45 minutes at 350 degrees it'll feel like home.

Heart Surgery Next Week

I've been procrastinating on writing this. How does one sum up all the emotions of what's to come?

We hand our beautiful daughter over to surgeons next week for her heart surgery. We place them in her care and our trust in our Lord. 

And then we'll wait. 

We've been simply enjoying each day lately. We're soaking up homeschool time with our other kiddos, celebrating birthdays early and playing outside when we're home from the city. We've been starting the quiet process of hibernation for winter. We're doing some fun last minute things to soak up the last of this fading summer, reflecting on the fact that we barely had a summer. Spending nearly all but about two weeks of summer in the city at the hospital was not on our list for summer vacation, but we made the best of it. We kind of feel like things jumped from Yay!! School's out!! to Yay! First day of Kindergarten!! We made it to the local pool once all summer (good thing we didn't buy season passes). We made it to the zoo exactly one time. We mowed our own lawn exactly twice all summer. And I nearly blew up the mower the second time. Billows of white smoke. Guess I was out of practice

Then again...we're all ready for fall. We're ready for this surgery to be over and our stress level to lighten. We're ready for schedules and routines. For our own pillows. Our own beds. Our own home. Our own family all together under one roof again. Ready to crank the Christmas music and decorate for fall. We're ready for our 2nd annual Christmas chalkboard competition. We're ready for the smell of burning leaves and cuddling on the couch watching movies and sipping cider. We're excited to take Chloe to her first pumpkin patch. In our backyard. To avoid germs. And thankfully because we never got around to really throwing away our old pumpkins last year, they've grown a nice patch in our yard for picking this year. I've picked out our fall family photosession wardrobe, and am praying Chloe will be able and healthy by end of October for this special picture, my heart set on our first official professional family picture. I should probably book that session soon. Another thing on the "we wait and see how the surgery goes" list. Yep. That list exists. 

She's ready. We're ready. We honestly couldn't ask for Chloe to be any more healthy than she is in this very moment as we prepare for surgery. Other than slight fevers from cutting teeth, she's been happy, playful, doing physical therapy and occupational therapy. She's kicking so hard that she's rocking her entire crib. She's rolling from side to side. She's getting sideways in her bed and her nurses are finding that she's a mover and a groover. She's a pooping monster. She's learning to grab BOTH feet with BOTH hands. This is a HUGE praise!!! Something we've been working on for quite awhile. My heart is blessed and overflowing when I see her doing her therapy time.

And we pray for her healing. We pray for surgery. We pray for wisdom and for His will. 

There was a hymn I was listening to last week that is one of my favorites. There's a line that says, "Praise to the Lord, for He is thy health and salvation." It got me thinking how much we all pray for physical health, and ask the Lord to fix us. But to pray to fix us all the time means we don't trust that He made us each in our own way for His reason. To pray for "fixing" us all the time must mean something went wrong when He created us, which it didn't. He knew exactly how Chloe would be intricately formed. He knew exactly that this person would have a cleft lip, or that person would have a heart condition, and so on. To say otherwise would be to undermine the Creator of Creation. 

We can pray for healing, but we cannot pray for complete 100% fixing this side of Heaven. 

There's been so much focus on His healing for Chloe and her health and guidance through this surgery process, and for that we're endlessly thankful. But when we say that He is they health and salvation, we're talking spiritual health. I can't help but think of how much we pray for physical healing over spiritual heart healing. If we spent as much time praying for the weakness and health of our own hearts before the Lord as we do for physical healing... "Ponder anew what the Almighty can do"... 

Chloe's heart surgery is what she needs to live. It's her last chance at living to more than her first birthday. It's scary, it's risky, but it's our only earthly hope. So we know we must do it. Trusting in the Lord is the same. It's scary at times to set everything aside and say, "Ok, Lord. You've got this. I trust in You for __________" (Fill in the blank. This is an interactive activity). It's so hard to do, but it's the only way for our survival. We live in a fallen world. There is sickness and disease (as we've experience now in our own little lives). There's sadness and pain. There's hurting and questions. I honestly cannot imagine, however, walking these lines of the fallen path without God. We can only pull and grasp the motivational jargon of "I've got inner strength and sending positive vibes" for so long. Our own personal strength only reaches to the clouds, but not beyond them. Our own positive thoughts cannot bring us inner healing. We have to choose hope. Which is what we've done since last summer's NICU days. If we didn't choose hope, our daughter wouldn't still be here. We're so grateful for the many of you who have joined us in praying for our daughter's healing. But another prayer of ours during this journey has been for our (everyone reading this blog and following Chloe) spiritual health as well. The eternal kind that can only come from the Giver of Life and lead to a place where He will wipe away every tear. That Chloe's life and this blog is to point to the Lord and especially during this part of the walk through her life, that anyone struggling to place their trust in the Lord and not walk this life alone would do so, with hope. 

Our sweet strawberry-golden-haired daughter is now sixteen months old. If you count the time she was in my belly, we've been on this journey for two years. We've been dealing with medical speak and iffy situation and scary scenarios relating to her health for two years. We should be used to this by now as our normal, right? Nope. But we press on. We grow daily. We learn often. We listen much. We grieve missed milestones. We celebrated delayed milestones met. 

And we brace ourselves for the storm ahead. The one that's brewing on the horizon as the colors change from the coral hues of a Kansas summer into a a melting pot of greys. Because we don't know what's to come. If any of you recall, last summer's heart surgery gave us many scares. We're praying and trusting that this one goes more smoothly. But we are cautioning ourselves with what to expect this time around. 

So thankful He is our safe harbor in the storm. That walking into a boat that we know will be rocked and tossed during those long hours next Wednesday as we wait for surgery updates, that we're not in that boat and rocking waters alone. He is our anchor and hope. He is our stability, security, safety (Hebrews 6:19). 

So for the many who are thinking of us and wondering how we're doing, here's the best way to sum things up:

We're tired but running the race. {Hebrews 12:1-2}
Concerned but trusting. {Proverbs 3:5-6}
Apprehensive but assured. {Isaiah 55:8-9}
Worried but resting. {Psalm 46:1}
Sad but rejoicing. {1 Thessalonians 5:16-18}
Weary but fueled.  {Hebrews 12:28}
In the fire but not burnt. {Isaiah 43:2}
Fearful but safe. {Isaiah 41:10}
Hoping against hope. {Romans 4:18}

And on the day of surgery "I will lift my eyes up to the hills. Where does my help come from? My help comes from the Lord, the Maker of Heaven and earth." Psalm 121

And when I'm in doubt I'll think of Job chapter 38 and remember I wasn't there when He set the boundaries on the waters of the ocean to the sand. 

And when I'm anxious, "Be still and know that I am God." Psalm 46:10

"Wait for the Lord. Be strong and let your heart take courage; Yes, wait for the Lord." Psalm 27:14