Where Do We Go From Here?

My mind is overwhelmed, so bear with me while my fingers melt into the keys as I update on the latest.

Recap:
June 6th-ish: Local ER. Told respiratory virus. Told fluid in lungs on Xray. Sent home to wait virus out.

June 13th. One point five weeks later landed in KC at the hospital. Fluid wasn't from a virus of any kind. It was fluid from her heart. In other words, showing signs she NEEDS this next heart surgery.

Admitted on the 13th, sent home on 1/2-liter oxygen and new meds, new GJ tube, and with the knowledge {finally} that there's no trach ring. Busted out on the 17th of July. Goal to rest until open heart surgery on the 13th of August. Holidays while in hospital totaled two: Father's day and Fourth of July. Sometimes we measure stays in terms of how many holidays we hit. Her NICU stay included May Day, Mother's Day, Memorial Day, Father's Day, Flag Day, Fourth of July, First Day of School, Labor Day and all this started less than one week after Easter.

We were home 5 days. Almost. Not quite. Flew back (literally, Chloe was air transported again. She loves that transport team) again to KC, this time for low sats. No other reason-just randomly low sats. Went from half liter to 3 liters of oxygen in less than 3 hours. More than 1 L is high for her. Took her to local ER again and waited on CMH transport team. Followed the ambulance on the route back to our house and had that amazingly awkward gut wrenching moment when you turn your car toward home to finish packing up and get to KC while your child goes off with trained strangers, heading up the hill and around the curve and on their way to the plane. This never gets easy. Or normal. Or routine. And yet...we knew the routine down flat. 

Got to KC and tested positive for...

THE COMMON COLD.

Seriously folks, when we say we gotta keep her healthy, this is why. When we say we gotta hunker down during cold and flu season and we post article after statistic after breaking news on the above-mentioned diagnosis and possibly even offend people at the heightened state of alert for germs, this is why.  A common cold can land her in the PICU. That's Pediatric Intensive Care Unit. That's intense. From a cold.

So now where do we go from here?
...She needs this Glenn {{heart surgery}}. She was scheduled for 3 weeks from now and needed to be healthy for 2 weeks prior.
          >>Forget that idea!!<<

...She now needs to wait 4-6 weeks from the moment she's symptom-free before surgery.

But the question is where?
Where do we wait this out??

Anyone a fan of the infamous Pro//Con list? Here we go:

PROS to STAYING              //            CONS to STAYING

Pro: We're on top of everything. Any meds, any cough, any rashed bum, any change in secretions, any questions asked. Answered. Taken care of. She'd be 100% watched until surgery.

Con: Risk of infection just from being here alone, much less if she has to have lab pokes. 

Pro: We don't stress her out with back and forth travel. Rested up for surgery.

Con: Risk of picking up another bug. 

Pro: We get some rest before the big surgery. 

Con: If we're here that long, they might do another PICC line. 

PROS to HOME           //          CONS to HOME

Pro: We're home, she rests in her own environment. 

Cons: We're her nurses for 3+ night and day shifts and exhaustion has hit. 

Pro: No pokes. No PICC lines. No stressful sedated procedures. 

Cons: Risk of germ bugs at home and thus pushing back surgery even more. 

Pros: We're home as a family. We're together and not cooped up in a 10x10 room. 

Con: We're not getting sleep at home. 

Pro: She relaxes better at home.

Con: Stress of travel to and from. Possibly fly her back if she suddenly gets sick. Really watching for the shunt to make sure it doesn't clot off or stop working since it's so small. 

There's simply so many things to weigh into consideration. We've been here 5 weeks now, with the exception of that long weekend we went home then turned around and flew back. Surgery will be 4-6 weeks out from the day she's symptom-free of this cold. In other words, could be 4-6 weeks until surgery followed by another 4 weeks recovery. A.K. A. a LONG time to be in the hospital. 

So we pray. We wait for her to get back to her baseline 1/2 liter. We ask questions of the team to gain the best understanding of plan and direction. We remember that Jesus didn't have anywhere to lay His head, and His Father provided for Him, and we trust He'll grant us wisdom to know where to lay our head at night. We trust that although we cannot see, touch, breathe in, know His plan in all of this that He does have a plan in all of this. 

Please pray with us and for us while we wait and see where we go from here and how soon we can get her surgery rescheduled for, that she'd heal up from this cold and stay healthy here on out.

Another Chloe Update

{ This chic can rock a hospital gown.}

Last week we attempted to take out Chloe's G-tube called a Mic-Key, and put in a GJ tube {aka goes into intestine}. The idea being that since Chloe's fundo is blown//no longer exists, that we'd bypass stomach and feed into her intestine to lower puking episodes {...sorry, gross post warning...might want to finish eating first...}. We took her down to have it placed, and unfortunately it didn't take because the guide wire wouldn't go into her intestine. One of the nurses that helped said it was like they were hitting a brick wall. It didn't make sense though considering that when dye//contrast was shown on imaging it going through intestines, and she's still making diapers, so there's no real blockage. Chloe continues to throw us curve balls. She likes baseball season. We need to get her some KC Royals clothes.

That was Thursday.

On Friday, we tried again. No such luck. Same as before.

We all decided that either going back to original Mic-Key button was best idea, and get her eating again this way even if it meant going down on feeds. But then they said, "You know, if there's something going on though, we really need to know what's up with the intestines and do an upper GI scope." We were at first stressed about stressing her out with more sedation, but it's no more invasive than what they did last week, so we agreed, but it'd have to wait till Monday. After phone calls half way home where they almost had us turn around and come back so they could do it on Friday, we decided it's best to wait till this coming week and not stress her out anymore. She already threw up blood on Thursday during the procedure and on Friday, and got pretty upset during those episodes. She needed to rest, and as her parents, we pushed for this.

So we head back tomorrow, and hope that early this week we can get that GI scope done, that they do not find narrowing of the intestine, no blockage, and they can advance the J portion of the tube into the intestine. We pray they can get feeds going again and that she'll FINALLY feel better tummy-wise.

It's been a whirlwind of a week, and an emotional roller coaster.

The good news of the week is that her heart surgeon thinks Sildenafil {drug used to relax heart and lungs} is working. The good news is that for healthy child, this surgeon gives 5% risk of complication. For Chloe, he's giving 10% chance, not 40-50% like we thought he meant. We've feeling more confident to bring her home this week since she's almost back to baseline, and soak up the snuggles and let her rest until August 10th, surgery date.

Thank you all for reading, encouraging, prayer, and helping us through this crazy last month. Please pray in coming days that she can get this test, and that she comes off sedation well without requiring another PICU stay.

Summer in the City

Our summer home. KC. Kansas City. I'm not a city girl. We're not a city family. But this place is growing in our hearts because it's home to the amazing Children's Mercy Hospital & Clinics. Our beacon of hope and healing for Chloe. 

She got a PICC line place a few days ago. That was kind of our weight that tipped the scale towards stay here. That, and needing close to two liters of oxygen nearly all the time, means for now, we're staying put and waiting to get on the heart surgery schedule. Current plan is to continue to work on increasing feeds s l o w l y  but   s u r e l y  as tolerated. To hope to stay low on oxygen, but of course give what is needed. At times she's needed more oxygen, other times can wean to room air for a couple of hours. She's stopped throwing us as many curve balls these last few days, and is feeling much better. She's on a new medicine that's {hopefully} relaxing her heart and lungs because her heart is so tight//tense//won't relax, and this drug is mainly used after the heart surgery for kiddos whose hearts won't relax during healing. For Chloe we're trying this up front before the surgery, and so far so good. We're keeping a VERY close eye on her blood pressure as this drug can lower it, and she's already on a bp med to keep bp lower, so watching this like a hawk. The tentative plan is for the heart surgeon to swing by and take a look at her sometime next week and then decide how soon {or later?} she needs this shunt replaced and can get scheduled...or another question is how long do we let her relax on this drug before replacing the shunt. 

In other words: We wait. 

We be still. {Psalm 46:10}

We stay put and let Him lead. {Proverbs 3:5-6}

We watch and pray. {1 Thessalonians 5:16-18}

We trust that God has a plan in this and we learn to wait for His precious and perfect timing. {Isaiah 55:8}

Oh, and we snuggle. She's feeling good enough to hold again, and I got to rock and cuddle last night for over two hours straight! {Though there was a lot of suctioning while in Mama's arms}. 

What does waiting look like?

It looks like Daddy working by her bedside during the day, helping to suction, talk with docs during rounds, and giving input on things like if we think she could benefit from an albuterol treatment or help decide if she's in any pain, or to talk through game plans. 

It looks like me and the kiddos spending daytimes with friends in the city who used to live in our hometown and are loving the opportunity for our kiddos to play together and to catch up on life. It's a brief escape for fresh air and stress free living, though Chloe is a heartbeat and thought away at all times. 

It's family dinners in the Ronald McDonald house, then bedtimes with Daddy while I take night shift with Chloe, helping to give bath and do trach care and tuck her in for the night. 

It's learning to balance time by Chloe with family time as the four of us. It's learning to parent, to balance work and lives and bedside. It's homeschooling from the hospital room and a few family outings. 

Like this one. 

He leads us beside still waters. Not the Lord in this case, well, kind of...but our son. We went off the beaten path today and found a nature walk/hike out from the city a bit. We parked, hopped out, started on our trek down to the nature center so Mommy could use the restroom first, only to find that it was closed for the Fourth. If only I hadn't had that Diet Coke on the way!! We found the restrooms just outside...but they were locked. And the lizard that scurried under the door made me not exactly excited to go waters in that particular restroom, but it didn't matter...because it was locked. 

At the beginning of our walk. As you can tell, those are thrilled kids there. And my thumbs down was because the Daddy was making us go walk and yet I STILL hadn't found a restroom. Held some high hopes for an out house...

Our fearless leader. Seriously. He was awesome. We learned about maps, legends, what a compass is. He was great! {Note to self: Check off today as school day: science and social studies}. For real though, part of this crazy summer is all about parenting these littles through so much that not many littles experience by this age. Poor dude has been in a funk the last few days, cranky, learning his world is not the only one and us having to have many heart to hearts. But today was different. He was awesome. He was fun and happy and led us and was not scared of anything. We were proud of the leader that came out in him today. 

"OK guys. Now. This map says there are wolves, spiders, snakes, and mountain lions. It's OK though. They'll just jump out and scare us. Then bite us. Then eat us. Then roar." 

Other fun one liners:

"Don't look guys, Mommy's going waters in the woods."

"Spider web!"

"Tree! Duck!!"

"Isaac, slow down!"

"I can hear civilization." {The highway was just around the river bend and we could hear the cars rushing by}. 

"I'm going to my happy place and getting a frappucino after this. And Icee's. You guys want Icee's? I need air." {Normally I love nature more than anyone in the family, but something about the mud and the spider webs and the glistening on my skin and the fact that I didn't wear the right shoes because I didn't know we'd end up on the Oregon Trail today...when I had in mind a nice WWI Memorial the whole family would enjoy...}

"Oh look, another creek to cross."

"Slow up there, Clark!"

"My name isn't Clark, it's Isaac!"

"Yes, but today you're an explorer, so you'll be known as Clark." {Explains what explorers are and who Lewis and Clark are}. 

"No. It's ISAAC."

"OK, Lewis."

"You guys enjoy your snack. I'll just stand here on the path where I can see the snakes coming."

"Isaac, SLOW DOWN!"

"I miss Chloe."

"Me too."

"I can't wail till the day we can bring her along on these adventures."

"Isn't this fun!!!"--the Daddy

"Spider web!!"--the Mommy

"OK buddy, you have a choice to make. The trail can either end here, and we can go get fresh, cold, delicious Icee's. Icee. Icee. Icee. Think Icees. Or we can go that way for another mile."

"We can be done. Let's go get Icee's."

"Good choice, son."

I think Abi was the least amused by the day. And we were covered in mud by this point. So we went to Target to buy $2 flip flops for the whole family so we wouldn't track in fresh mud all over the beautiful new Ronald McDonald House. As payment for leading us all astray into the woods, Alan will be scraping all the mud off our shoes this weekend. 

I think the heat got to him. He seemed to think this hat looked good. 

We took a pic in our flip flops when we got done. We added Chloe's shoes so she could be in the picture with us, even though she was in her room at CMH napping and harassing her nurses. She's a part of this family every single moment. We think of her Every. Single. Moment. when we're away. She can't get rid of us that easily ;). We're in this as a family. And one day, we hope she can join us on another fun hiking adventure. We're patiently waiting for heart surgery, and the hope that it will enable our baby girl to thrive. 

Oh, and the little girl in the pic above, she was doing the need to go waters!!! dance. We had one shot for this pic before she bolted for the restroom before she watered nature like her mama had to do. 

Will be getting this memory on a canvas to put above our mantel each summer season. 

{"Hun, can you look at my neck? It feels weird..."}

{"Oh yeah, you have like fifteen bug bites all in one little area. It's like a bug got stuck in your shirt today."}

{"GAHH!!!"} 

Seriously. Next time I'm not letting him choose the place unless we're fully prepared with bug spray, old shoes, and a few flares. 

Prayer Requests:

--Alan goes home this weekend through next weekend. Please pray for safe travels for him and wisdom for me as I navigate taking care of the kiddos plus time by Chloe. 

--Wisdom for Chloe's doctors as we try to narrow in on a surgery date. 

--For this new heart med to continue to help her feel better and her heart to relax. 

--For His will to be our will. 

--For wisdom and patience in parenting on these long days. 

Waiting On Wednesday

We've been asked multiple times, "How's Chloe? What's the game plan?"

Wednesday {tomorrow} holds most of the answers to that question. At the moment, she still doesn't tolerate being weaned from the oxygen much and thus is needing to stay on it. Other than that, she's still on lasix and another diuretic for fluid. But tomorrow we should know more...

Tomorrow is her bronchogram. Fancy word for scope of the throat to check for the possible trach ring and to see how the bronhomalacia {floppy airway} has healed up since last year. The big "if" is if there's a trach ring, which surgery to do. Repeat her current shunt and wait on the Glenn surgery//trach reconstruction surgery until much later {think fall or later}, or if there's no trach ring, to go ahead with the Glenn now. Bye-bye mixed purple blood. Hello better circulation. 

So we wait. Still. 

Waiting is the hard part. We've been waiting all spring to know more, to get her to feeling better and by better, we know that is only with this heart surgery. Not sure which procedure yet, but ultimately, either way, it's still open heart surgery. When waiting, it's so, so tempting to let the thoughts run and anxiety get hyped up. It's easy to begin to remember bits and pieces and picture everything in our minds that happened with last year's heart surgery. It's easy to realize that the moment we hand our precious daughter over to the surgeons is upon us very, very soon. It's easy to become anxious with our thoughts and anxiety about the surgery itself. To be anxious wondering the results of this bronch tomorrow to know what the next step is. To worry about so much....

Or we be still. 

This past Sunday our family, well, minus sweet Chloe, was able to go to church for the first time in a year as a family. To sit in one pew and sing together. To worship together. And it was good. 

Until I realized the topic of the message. Anxiety. Busted. I knew this would be convicting, which is a good thing. I can't honestly sum up all the amazingly true points that were addressed, so I'm including my notes I took during the sermon, and you'll see some key points there. 

I talked over the message with my husband on the way back to the hospital afterwards, and we both agreed, this is where we're at right now. We wait. We be still and wait upon the Lord. Worrying and anxiety will not change anything...it will not add one minute to our lives. Or Chloe's. But trusting in the Lord with all our heart and waiting upon His timing is what we can do. 

So here's the link to the message on anxiety. And my notes from the message. If you struggle with anxiety or worry, listen here...

Ok, so the above needs a lot of work and some photoshop, but it's what came to mind during message. And is worth focusing on. 

Chloe is definitely teaching us what it means to wait upon the Lord and to lay all of our anxiety at His feet. So we wait. Patiently. Fully. And with hope. 

Editor's Note: Here's that final version ;)

Update on the Chloester & Info for Benefit Garage Sale

We'll start with update first, bullet point style...

• Red rash on face lately and some of her body. This is mainly due to the fact that her red blood cell count is high {effect of needing heart surgery soon}. If it gets worse, there's something {drug} I believe they said we can try, but we're hoping it clears up soon and red cells go back down a bit.
• She's still having trouble tolerating her feeds. She should be back to 48ml // 21 hours, but she's only at around 38ml. Anymore than that and she gets spitty and puky. Hoping that we can continue to s~l~o~w~l~y increase again soon. New sized Mic-Key button for her g-tube has helped a bit, but still, full feedings are a work in progress. 
• Continuing lasix. She's still puffy off an on in her hands//feet//face. The fluid in her lungs seems to be clearing up more and more, but still trying to get it off the rest of her body. 
• She hates her IV. The one in her scalp when she was first admitted stopped doing its job. The second one that vascular team placed in her arm just yesterday has already been worked out by a cute pink stay-puff. The one they got in this morning to replace that one is now not flushing. Vascular needs to put a new one in {again}. The vascular team knows her well though from out patient labs, so she chats with them all about her day when they come by. 
• She's a sleepy bug when she's sleepy, but when she's awake, she's even letting us sit her up and she's FULL of smiles!
• Bronch is tentatively scheduled for this coming Wednesday. That will help us know if she has the trach ring. News we've been waiting on for a year now. If she does, then most likely repeat the BT shunt to get her bigger//stronger for the combined trach reconstruction and Glenn. If no trach ring, then most likely will get the Glenn. Problem is it's all up in the air until we get this scope done. Not sure if we'll come home end of next week and wait till heart surgery is scheduled and keep eagle eye on her at home, OR...she's showing enough signs that we might just stay put. I hate to even utter the words, but the cardiologist who rounds on Chloe while on this floor has said them two if not three mornings in a row: All of Chloe's signs {fluid//red skin tone//need for 02//possibly even not tolerating feeds} point toward heart failure. While my heart panics each time I say that, I also know that this is just our way of knowing she's ready for her next shunt//next surgery. This does NOT mean end all, this means time for next surgery. But it's still hard to gulp those words down our throats. 
• Kids are doing amazing with us. We got to enjoy a day out at the zoo with them last week, getting ahead on home school stuff {"school stuff" as we call it}, hanging as a family in Chloe's room, playing in the amazing playroom basement of the new Ronald McDonald House, and enjoying the child life playgroup each weekday morning for an hour on Chloe's floor. Our days are actually very structured with all of the above and the kids have adjusted amazingly well. We hope to keep them with us as much as possible this summer. As Isaac said as we got off the elevator the other day, "Besides, we're a family!" :)
• Please also pray {with the above list} for Alan as he'll travel back home tomorrow so he can still lead on Sunday, then back that afternoon. Please pray for safe travels, for rest, for good memory to remember the list of things we forgot the first time ;). 

Some very sweet friends and church family are blessing us by putting on a benefit garage sale to help us off-set the costs of things like medical bills, gas//food//car repair for these trips back and forth, needs while we're in KC this summer and so on. We were incredibly blessed and humbled by this generous offer to organize all of this for us. The garage sale info is listed below...

>Benefit Garage Sale for Chloe & Family will be at University Christian Church (UCC) in Manhattan, KS next Saturday, June 27th from 7am till 1pm. It will be held in their Family Life Center. Drop off for donations will be Friday June 26th from 12pm-8pm. If you'd like more information about donating items, please leave a comment below with your first name and email address and I'll forward you the information from the organizers on what and how to price items. 

>Join the Chloe Gerling Benefit Garage Sale/Bake Sale on Facebook for latest info.

>Lastly, they will also be selling t-shirts that I (Chloe's mama) got to design for the volunteers which will now also be sold at the garage sale for $15, sizes Youth Medium through Adult XXL. The design of the shirt is at the bottom of this post. The colors teal and grey represent Chloe's trisomy ribbon for Mosaic Trisomy 22, and the other version with the pink represents her heart journey. 

>>>And on behalf of our family, we thank you ALL who are working so hard behind the scenes to organize and put this benefit on for our family. We are blessed, humbled, and feel so, so loved on this journey. Not a day goes by that we are not thankful for each and every one of you, and the way you remind and teach us all what it is to be the hands and feet of Christ. THANK YOU.<<<

If you're reading this blog and would like to help in some small way but do not live in or around this area, this same print {without Chloe's name} is available on my Etsy design page available to purchase and download the jpg to print and frame for your home. Here's the link: Chloegirl Designs on Etsy for $10.

If there's enough interest, this one might be available as well:

Or other versions for download from Etsy for print:

*Images above are not allowed to be reproduced in any way. JPGS of prints available on the Etsy link above. Copyright 2015 Chloe Girl Designs. 

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.