Nesting...Still...

With my son, I nested by cleaning everything inch of our rental. I scrubbed till my fingers were raw. The house couldn't be clean enough. And I scrapbooked. I had his first year book all made and ready before we even had his first sonogram image.

With my daughter, I sewed. It was the one and only time in my life that I actually understood, for a season at least, how to sew a straight line and not break the bobbin. I sewed a little case for diapers in the diaper bag. I stitched together little birdies to hand on her carrier. I sewed a little dress {ok, that was kind of a fail, but I still have it and it might fit her baby doll}.

With Chloe...I didn't nest. I couldn't. I lived in fear each day wondering if she'd come early. I think we only bought a few things for her...a new outfit for going home, new strap covers for her carseat, a taggie. That was pretty much it. Didn't want to get our hopes too high. The last month of pregnancy, usually about the time my nesting instincts kick in, I was nervous, anxious, worried, and barely getting through each day.

So I never nested.

And now we're coming up on her heart surgery for a shunt in her heart. The theory is two weeks in the PICU and then back up to the NICU for continued healing. They say we could be here 4-6 more weeks, if surgery goes well. That seems like a long way off, but in our minds, after 17 weeks, we're ready. And home has a weird connotation. It won't be like when you normally bring an infant home...it'll be anti-germ to the extreme. It will be limited visits. We'll be hermits at first. It'll be like the NICU, only in our home.

So the last few weekends we've been home, I've started nesting...finally. And this time, it's sort of a combination of the nesting techniques I used with the other kiddos...it's organizing, creating, and turning chaos into order, which greatly reflects what it'll be like once we get home.

It all started like this, last weekend...cleaning and putting away laundry made me realize I hadn't cleaned out the "kids outgrown clothes" totes at the top of their closet. So I cleaned them out and boxed them up. And dreamed of the day when Chloe can wear Abi's old hand~me~down clothes. Throw on some chalkboard labels I already had, and there we have it. Organized. 

And if the closet is clean...then the rest of the room should be as well. Unfortunately, I couldn't just clean, I can't ever just clean. I have to rearrange. I've done it to relieve stress since I think I was 6 years old and would stay up late rearranging the furniture in my barbie doll house. When I was 12 I'd rearrange the living room with my mom. When I was 16, I'd stay up late rearranging my bedroom, shoving furniture as silently as I could as to not wake the rest of the family. So last Thursday was no exception. The kids were already in bed {obviously not sleeping} while I was reading them bedtime books. I realized they couldn't both see the book or me, and had a moment of inspiration to separate their bunks...but couldn't strategize how to do it by myself. But then the Lord provided...and a friend who was dropping off my diet pepsi got roped into the deal.

All of that hard work, and two days later, she chose this location:

The following day I went to Wal-Mart in an effort to find fall shoes for the kids because they thought it'd be fun to grow a whole shoe size this summer and now Abi is getting blisters as I try to shove her foot into an old shoe Cinderella-step-sister style. Couldn't find anything worthy or that would last more than two weeks, but as I wandered back to the check out, the pretty notebooks crossed my mind, followed by the thought, "I wonder if making a binder for all of Chloe's info would help me stay organized with doctor appointments, home health care, insurance, medications, trach care, etc. when she gets home." This quickly turned into, "Huh...I should also make a binder for my son and daughter that includes curriculum ideas, daily schedules, notes on behavior and how we're dealing with their precious little souls during this ordeal. Follow that thought with, "Perhaps I should make a binder for myself, sort of a home management slash personal management binder. Here's how it went down:

Text friend an hour earlier about running to Wally World together. Receive text back hour later, followed by me texting a picture of binder materials with caption "think I could organize my life a bit?" with a reply phone chat saying, "Are you without children? Come on over! I'll share my binder and tips!"

I love this friend. Aside from the fact that I'm jealous of her lengthy bouncing chestnut curls that fall perfectly into place no matter how many days it's gone without washing and added baby spit up for fun factor, she's also organized, witty, gentle, amazing listener, and her home decor puts my mind at ease. 

I showed up at 10:02pm. 

And I covered her table with my attempt at organizing a portion of my life so that I can turn a large sum of chaos into a slight bit of organized and functional living. 

And I stopped to snap this picture because every corner of her home inspires me, especially this little kiddie command corner by her kitchen...

I stayed up late working on the binders and in the end felt a bit more confident that we can do this.

Then last night a friend took me to heaven. It looked like this:

It was a great place for inspiration. And it gave me ideas on how to make Chloe a mobile for her crib back home. Here's my teaching moment for the day on how to make a mobile:

HOW TO MAKE A MOBILE 

~Materials Needed~

Ribbon

Plastic sewing round thingy {sewing section of Hob Lob}

Glue Gun

Fabric

Accents {I chose flowers}

Something to hang from it {I chose elephants, surprise surprise}

Then, after getting it all ready to go, I realized I had no scissors. And we're in the RMcD house, so I didnt' really have the resources at 10pm to find scissors. Either stop project {as a friend advised} or make do with whatcha have...like this! {teeny tiny pocket knife scissor thingy}I figured we've met our deductible and Truman Medical Center ER is approximately 2 doors down, so I went for it. 

Other essential materials include a way to plug in glue gun, so you might want to find a Hallmark Card and flip it over for a place to set said glue gun. Take picture to prove it. Notice all those bobby pins you can never find.

And eventually, here's what you come up with, and what you photograph hanging from your shower rod, because again, remember, you're not at home working on this project, so you made do. 

Chloe's daddy says it needs more pink, so I might need to find pink versions of the grey flowers and add to it. We'll see if creativity strikes or if exhaustion wins and I give up and consider the project done.

And to the friend who inspired me to make my own mobile...you promised if I made the mobile, you'd help figure out a way to attach it to the crib ;). Looks like your time has come! 

Headed home for a few days because they are looking to do her heart shunt next week, and once that time comes, we won't leave her side. So I need to rest now, and that means projects ;). I can only imagine what I'll try to organize this weekend. 

Please pray for safe travels to and from yet again.

Please pray for childcare to get set up smoothly, should we need it the week after next.

Please pray for growth and feeds.

Please praise for her amazingly good day today.

Please praise for this amazing gift He has trusted us to hold and keep. 

Romans 12:15 -- "Rejoice with those who rejoice, mourn with those who mourn."

I (Alan) have been contemplating this verse, Romans 12:15 for the last couple of weeks.  Bear with me as I try to set down some thoughts.  I'm sure there will be many commas and much rambling, but hopefully this post will be edifying to you.  If nothing else, I'm sure it'll be therapeutic for me.

In this verse, we come to a passage that lays out one of the ways that Christians are to be set apart from the world.  The world sees suffering and often passes by on the other side of the road.  The world sees taht suffering is messy, and if you get too close, you're likely to get some of that mess on you.  On the flip side, I think it goes without saying that the inborn tendency of the human heart is to be jealous when someone else "gets ahead" in the world.  If you doubt me, go hand my 4 year old a bowl of ice cream in front of his 2 year old sister.  Abi's immediate reaction is not going to be one of rejoicing for Isaac's blessing.  Granted, years of training teaches us to be polite and not throw a tantrum when someone else gets something we want to, but it's there under the surface.

Life in the Body of Christ looks different from this.  When one member of the Body suffers, the whole Body suffers along with him or her.  When one member of the Body rejoices, the whole Body rejoices.

Let me share about both of those, rejoicing and mourning from the perspective of one who is going through an experience most of you have not gone through before.  My hope is to give you a little perspective and encourage you.

Oddly enough, this isn't the first time in my life I've experienced suffering that my peers around me didn't necessarily understand.  The first time, I was 8, going to third grade after my dad was killed in a plane crash.  Needless to say, the other kids couldn't exactly relate to what I was going through (remember, I went to a small school).  Beyond that, I didn't know Christ yet.  I remember clearly having to try to learn to control my emotions, because a weepy boy invites all kinds of bullying.  I also remember quickly giving into my inner hermit and withdrawing from all but one or two friends.  There were no peers who could empathize with what I was going through.  On the other side, I resented the normal lives all of the other kids seemed to have (I know better now).  Slowly, I worked through the bitterness, to the point that until my epiphany right before I started this post, I didn't even think about the parallels to today.

That brings us the the second time that we're in a situation that few can relate to.  I'm sure through the last few months you've seen the rawness of the emotions we're going through.  The difference is that now we are part of the Body of Christ.  There is a whole family of people out there who have been called to empathize with us.  Boice defines empathy as "the ability to identify closely with someone else, to make his case your own and allow what has happened to him to affect you also."

Can we be honest, that's really hard.  I've heard from many of you that you aren't sure how to empathize with us as we go through this.  Can I be honest?  We don't have a clue how you all can empathize with us either.  Unfortunately, we know pretty quickly when something said or done hits a raw spot.  I confess that sometimes we haven't been the most gracious in our response back.  Please forgive us as we try to remember that you all love us and that you are trying to follow the command of Romans 12:14.  Don't let us scare you off from trying to love on us!  We are the Body of Christ, and if we as a church have learned nothing over the past couple of years, surely it is that when we are hurt by one another, Christ calls us to forgive one another and reconcile.  So, thank you to all of you who care about us so much to follow all of the posts on Facebook and the blog.  Thank you for your prayers, your cards, your visits and your words of encouragement.  Thank you for trying to empathize with us through this journey.

Now we come to the hard part of the verse... the first half.  Chrysostom, an early church father, once said that it "requires more of a high Christian temper, to rejoice with them that do rejoice, than to weep with them that weep. For this nature itself fulfills perfectly: and there is none so hard-hearted as not to weep over him that is in calamity: but the other requires a very noble soul, so as not only to keep from envying, but even to feel pleasure with the person who is in esteem."

I don't think I really understood the truth that it is really hard to rejoice with those who rejoice until now.  After all, don't we all rejoice at every wedding/  Don't we all celebrate every new life?  How about the person who is single and longs to be married?  What about the couple that has struggled for years with infertility?  It is hard sometimes to rejoice with the rejoicing.  Again, I'll have to ask your forgiveness as we muddle through.

For example, Monday, Facebook was alive with pictures of kids headed off for their first day of school.  Isaac "should" have been one of those pictures as he headed in for his first day of preschool.  Every post and every picture was a reminder that he won't get that experience this year.  So, am I saying we're upset with you all for posting pictures of your kids going to school?  May it never be so!  Instead, I'm saying that we're struggling through rejoicing with you all.

So, what can you do?  Continue to rejoice!  We will try to join you, and by God's grace and through the work of the Spirit in our lives, we pray that we can truly rejoice with you with each baby born this fall, each milestone that your newborn children are passing, each "normal" day that each of you are having.  Please don't be afraid of sharing your news with us.  We may be slow to react.  We may be grumpy (actually given our current level of exhaustion, I know for myself I can almost guarantee that).  It may even take some time for us to process, but by God's grace we do rejoice with you.

a perfect heart

"Mommy, wook, I drew you a heart!!"

My 4.5 yr old was more then excited to show me this just now. He drew a heart. 

I absolutely LOVE when he draws me something. One of my favorite things with him. He's becoming quite the artist. I think I teared up when he handed this to me. 

The more I looked at it, my initial thought was I need to teach him how to draw his heart a little better. It's the graphic designer in me. But it's also my human nature to want it to look right, to look perfect. 

In my child's mind, his drawing is perfect. He sees a heart. He doesn't see that it's got scratches where it shouldn't and extra bumps. That it's a little long and not quite proportional. He sees it for what it is. And he's proud of it.

I think sometimes I do this with God. I come to Him with what I think is a beautiful heart, proportional and put together exactly as it should be. But God gently reminds me of the scratches and the extra bumps, not to make me feel bad or to shame me, but to lovingly remind me that my heart can only be made perfect through His. My heart can only be healed because of His. No matter how much I erase the scratches and try to even out the lines and make it look symmetrical and perfect, that as long as I'm doing the erasing I'm just going to rub the paper raw and lose all sense of what my original drawing even resembled. 

But if I give it to Him, He'll fix it. He'll erase the scratches, heal the bumps, 

and make it symmetrical again. 

Dear New NICU Parents

Credit: Baker Baker Photo

Dear New NICU Parents,

Welcome! Congratulations on your amazing gift!!

I know you'd much rather be in your own room snuggling your baby on your chest, but alas, life has brought you here, to the NICU. Please know you are not alone on this journey.

This is your Day 1. Breathe.

You'll be oriented to all the happenings. Where and how to wash your hands. What you can or cannot eat or drink (aka, nothing, unless you're nursing, then water). Who your doctors are. Plural. What team you're on. Who your discharge nurse is. You'll learn the term assessment, begin to watch bright lines and waves on black monitors. Don't worry-they'll make sense soon-I promise. You'll learn about the bed your baby is in. You'll figure out what medicines they're on. You'll get frustrated, and that's ok, but when you go to find a pop or soda to help get some sugar in you because you haven't eaten in two days, you'll realize there is not one ounce of real sugar in this place. You'll get nervous when they say only two back at the bedside at a time because you need support of your family or friends, or both. You might not think so, but you'll get through it. You might be terrified, but you've got this. You've got more courage than you know.

By Day 5, you'll figure out the REAL time doctors round, not the assumed or expected time. And you'll figure out that you must first LISTEN to their round, THEN ask questions when they're done. You'll start to pick up on how to help with baths, stretches, hopefully dressing your little one and diapering. You might even try some kangaroo care. Took me a month to figure that one out. You might still be recovering. Give your body grace to heal.

Day 15... {though secretly I hope like none other that your stay is short and you're home soon for snuggle time} you'll probably start to pick up primary nurses who will love on your little one like their own. You will start to learn how to strategically steal the good rocking chairs. You'll learn by now how to help take temperatures, and memorize which alarm is an alarm, and which alarm is a feeding. You'll begin to panic less about what sounds you hear, and learn to zone in on just your child's. You'll figure out that all that walking through the hospital means you'll be wearing your Asics more and your flip flops less. You'll figure out that although the cafeteria has a few junk food items, that the real food {i.e. M&M's} are in the vending machine on Floor 3, Sutherland side. Or ask another NICU mama...she usually has at least half of an uneaten chocolate bar in her bag at all times for emergencies. If you're still on the Percocet, TAKE IT. Beg for it if you must.

Day 29 you'll have learned to master the 5 minute-I-don't-really-care-shower, because you'll not want to waste much time getting over to see your baby. You'll notice that pj's are just as acceptable as the same outfit you wore for the last 3 days in a row. You'll learn how to start to help making their nest bed. But by now, you will have also mellowed out a bit to know when it's ok to trust the amazing nurses and get out for a bit. I highly suggest when this time comes to choose a nap over anything else. You'll feel guilty at first leaving your little one, but will realize you need to take care of yourself as well, just like how they tell you on the plane to put your oxygen mask on first.

Day 52 you'll realize you're on autopilot. Just warning you, it's ok to coast for a while. This can be a long haul. But you can do this. Don't give in to weary. You'll be oddly thankful for those rushes of adrenaline. You'll start calling some of your doctors by their first name. They might even cry with you now on the hard questions. It's because they love your kiddo. It's not just their job, it's their passion. If it's not-find a new doctor ;). Feel free to talk to patient advocacy. That's your choice. But you don't have to. Just sayin'. You'll also have seen many babies come and go within days of getting there. You'll watch from a distance as they do carseat checks and go over checklists and training for going home. Outwardly you'll be very happy for them. Inwardly, it's ok to grieve the fact that you're longing as well for that day.

 Day 64 {by now I hope with all my heart that you are already home} you'll be drained. But that's expected. You'll be frustrated. It's ok to be. You'll be more comfortable changing a diaper with wires sticking out. You'll probably have started purchasing and using their own sweet clothes from home. And then realize you still have to do that laundry. And the simple task of washing your babie's clothes and personal blankets will make you feel like a mommy. You'll have figured out there's no sugary drinks anywhere within a 10mi radius of the hospital. You'll have learned where the nearest coffee shop is and which restaurants deliver to the hospital after 11pm. You'll start to forget what level you parked your car on and wander the Yellow Submarine lot for a while before hitting your car alarm and realizing you hear a familiar sound up a level on Red Rocket. And, sadly, you'll probably by now see a baby pass away. Your heart will be torn out of your chest and your breath stripped of it's sustaining power. You'll panic. You'll cry, in front of everyone. It's ok. Let the emotions roll. You'll have a panic attack thinking what if....but don't let yourself go there. Focus on the good. Weep with those who weep and have joy for those who have joy.

Day 77 The days are long. They're draining. They're at times flat out migraine-inducing-nausea-causing-meltdown days. It's ok. It's hard. Not going to sugarcoat it or make it seem better because it's a journey. A LONG Journey. You might yell at a chaplain assistant by now. You might lose it with a cafeteria worker because you know it's pasta day but they're sold out. You'll realize Security barely flinches when you walk right past them and don't even bother showing them your bands.

But you'll start to realize there really are good days in the NICU, as odd as that sounds. And you'll celebrate your little one's every milestone. Tears of joy are actually accepted here. And make sure to celebrate those milestones by telling another mama on the POD because we want to celebrate with you! And every nurse you've ever loved, primary or not, will stop you in the halls to ask how your little is because they haven't gotten to have them in a while. You'll learn that word spreads fast in this tight knit family called the NICU, and nurses will ask you as you walk the halls when surgery is scheduled for, or give you smiles and hugs and say they're praying for your sweet boy or girl and thinking of them on the hard days, on the surgery days, and they'll laugh and smile with you in the halls, telling you how they stopped by to peek on your little even though they don't have them today but that it was a joy to go see them today. And you'll love them for this.

You might think this journey is too hard. Ask the Lord to guide you.
You might think you're sinking from the overwhelming tides. Ask Him to be your anchor.
You might think you're being suffocated from the weight of it all. Ask Him to breathe new life in you.
You might think you're in the middle of a storm. Ask to hide in the shelter of His wings.
You might think you cannot take one more step. Ask Him to carry you.
You might think this is too much to handle. Lay your burdens at His feet.
You might think you'll never be able to afford this. Trust Him to provide your every need.
You might think He's left you. His eye is on the sparrow; how much more does He love you.

So once again, as hard as this journey will be, we welcome you to the NICU family. Be prepared for your lives to be changed forever and to witness love and life like you've never known before.

For Our Littles,
D Pod, Bed D39, Day 98

Credit: Baker Baker Photo

4am

Awake and can't sleep. Missing my girl. She's 3 months now...I sometimes wonder if everything had been ok, would I still be getting up in the middle of the night for feedings or helping rock her to sleep...never thought I'd say it, but I miss those long nights as a new mama up every few hours. If you're a new mama, the nights are long, but so worth it. Soak them up and don't complain about lack of sleep...God made coffee for that. Hold your baby on your shoulder and just love on them in the wee hours of the night.

That's a pose I greatly miss. It's my favorite new baby hold. In those quiet moments when your baby is gingerly sleeping, without thinking, you gently scoop up your new child, sliding ever so gently your hands under their arms, your fingers supporting their back and head, your thumbs wrapped under their arms and around their chest. You lift your child gently to your shoulder, sliding one of your hands to support their tiny little bum, then place them on your shoulder, letting them nuzzle and drool into your neck. You don't mind the spit up, or the smell of it, or the drool that quietly soaks through the fabric that separates your skin from theirs. You just rest, quietly. The grooves of your hand cup their tiny, uncontrolled head for support. I love this hold because it's about the closest you can be to your child. You can feel their chest rise and fall, their petite breath on your shoulder. Their tiny coos escaping their lips.

I miss this hold something fierce. I think that's been one of my hardest challenges as of lately...seeing new moms holding their tiny ones like this. It's such a natural hold. Effortless. I see it as I sit in church. I see it when I'm at the pool, next to a mama who's others are old enough to swim on their own, so they sit, cuddling their infant under the canopy. I see it in stores, where the mama pushes the cart with one hand, and leaves the carseat empty in the cart so that her other hand can hold her child as she strolls through the aisles...sometimes I stand still and stare at them, wondering when I'll get my turn at that hold again. And my heart weeps also in those moments for the wife who longs for a child of her own but is barren...

I know that I'll have to learn to adapt to new holds. My tiny daughter has a trach. That makes this newborn hold virtually impossible. I'll miss it greatly. I know I'll figure out a way around the trach that I will love to cuddle with her by, but in a weird way, I just long to hold my daughter like any new mama holds theirs...

Our hold. We'll figure it out, her and I. We'll get there. And it'll be sweet. I guess our hold will just be a bit more complex. I'll pop the trach off fast to drain any excess water so she doesn't get a drink. Pop it back on and nudge it into place. Perhaps do a quick pass with the suction catheter. With one hand under her head, I'll use my other to nudge under her tiny diaper, and lift her into my arms. I'll decide which arm to support her with, and which to hold the vent tubes. I'll consider ahead of time if I'll need any surgical tape already cut and tacked to the side of her crib. I might need to secure the vent tubing with it, laying the tubes against my chest, reaching for the tape while I hold her with one hand and then securing the tubing and tape with the other. I'll be careful not to bump her g tube site that will come soon. If she has a sats probe, I'll make sure it's secure before I move her. I'll listen intently with a hightened sense for the vent monitor alarms and beeps to know if my moving her is appropriate. I won't be able to place her on my shoulder, but perhaps we'll figure out what suits us best, where she's close to my chest, and I to her forehead, so I can gently kiss it as I hold her and feel her skin next to mine. She'll probably have to be propped more on her side. I won't be able to walk around with this hold and pace the room, the carpet worn from previous late night pacing with her older siblings. So I'll stand there, in awe of her, of this gift. I'll breathe in the scent of antibacterial hand sanitizer instead of spit up. But it'll be ok. But the hardest will be not hearing her coos. Not hearing her baby cries. Not hearing her voice. Because of the trach...the silence is the hardest. I long for the day when I'll be having to schedule speech therapy for her and her voice will finally be heard again. But that's another post, for another time.

Tonight, I'll just dream about snuggling her. Close. Even if tonight she's far away.

I love you to the moon and through the stars, my sweet girl.

I Smell Like Toasted Coconuts, and I Called 911

We headed home from the NICU for a few days at home. We got in around noon yesterday. I went to a salon and got my haircut, thankful for the stylist who understood our situation because her nephew was in the NICU for a time. Thankful she understood and I could just relax, vent a bit, and get my hair cut.

I took the kids to the pool again. Bliss. Relaxing. Well, other than when Abi's swim diaper burst while she was sitting out drying. And other than the moment my friend, who happened to show up with her little family while we were there, and I were watching Abi swim and thinking she was pulling herself along in the 2 foot deep water only to realize she'd gone under and we burst into panic mode, me yelling at my friend, "GET HER!!!!" because she was closer. Abi was just fine. A little shook up, but just fine. My heart was pounding. Other than that, it was the relaxing day I needed.

The kids and I chilling in the sun. Had a surreal moment where at first I didn't really have the energy or gumption to take them to the pool, then realized this is real life, and next summer, it won't be this easy. 

I did a little DIY repurposing. Took this old but loved dresser and made it into a kitchen island. We've been moving furniture around to make room for Chloe's crib to be downstairs. This used to house my coffee bar, but alas, it needed moved to make room for my Grandma's hutch, which had to be moved to make room for the TV, which had to be moved to make room for the rocking chair, which had to be moved to make room for the downstairs crib. I LOVE doing projects like this, so it was actually really relaxing 

and destressing to me. 

We played with Baby Chloe dolls. I taught Isaac how to swaddle his Baby Chloe doll. Abi took hers everywhere that afternoon. Including to a friend's bonfire, or barn flower as Abi called it. 

Enjoyed this more than I can say. Did we stay wayyyy too late? Yes. But it was my first, and probably only, bonfire of the season. I wanted it to last, even though I could tell our hosts were tired. They were sweet enough to overlook their tiredness and let us stay later. I soaked up the smell of the crackling wood. My children ate WAY too many marshmallows. I think Isaac had 6 s'mores. We laughed. We actually enjoyed ourselves and let our guard down to relax. I tried calling to check on Chloe while we were there, but somehow my ear dialed 911 instead. True story. I argued with the lady and insisted that I was simply trying to call and check on my daughter in the NICU. "Ok, well, somehow you dialed Riley County Emergency services, so if this is not an emergency, and you didn't mean to dial 911, then I need you to hang up." 

That I did. 

It was a normal day, for as normal as a summer day in this situation can be. I nearly broke down three times, thinking of everything. But I held it together and we got through the day as a family, complete with Alan cooking home made spaghetti for Isaac. 

At bedtime, we tucked the kids in. I laid out their clothes for church, and my clothes for church, in an attempt to be organized. I had made a goal for myself of getting up extra early and getting out the door to church extra early so I could swing through our beloved coffeeshop, Radina's on the Hill, and get a skinny raspberry mocha on my way to church. It was all planned out. Poptarts were already set out at the kid's seats at the table so they could have a nutritious and well balanced breakfast before church. I got my bible and journal and a pull up shoved in my tiny purse. I set out the kid's shoes. I placed my sunglasses and the keys on the newly hung shelf above the coat hooks by our front door, the shelf that was once part of my coffee bar and I made Alan hang in a new place for a new purpose just yesterday. I was so proud of finally having a place to put our keys and daily trinkets, that I even showed him. "Look hun! A place for the keys!!! They won't get lost anymore!!!"

I crawled into bed after consuming an 11pm snack of ibruprofen for allergy drainage throat, and fell asleep within seconds of my head hitting the pillow. I vaguely remember Alan kissing me goodbye before he left for church at 6am. Abi was crying, so she climbed into bed with me, in the same clothes she wore to the bonfire the night before because she was too tired to get changed. We both smelled of bonfire. And it was snuggle time and back to sleep. That was at 6:30am. A few more minutes of snuggles, then day #2 at home would begin. 

I finally woke up. I laid there for a moment looking around our room and thinking to myself that the size of our room at the Ronald McDonald house was the same size as our bedroom. I thought about the empty pack n play beside my bed, hoping it'd be filled soon with a baby and baby stuff, then wondering if it'd fit all her medical stuff. I watched the fan. I finally reached over for my phone to see what time it was, thinking it was 8am.

8:44am. 

Church starts at 9am!!!!!!

FLEW out of bed! Raced to the bathroom. Realized my hair didn't look half bad, so threw it back in a pony, washed my face, brushed my teeth, all the while hollering at my 2 year old to get out of bed and come go waters (code for potty). Slapped on the clothes I'd set out the night before. Smacked on a bit of deoderant. Stripped my daughter, placed her on the potty, put on a new pull up, listened to her scream as I tried to brush chlorine-watered-knotted-fire-smelling-marshmallow stuck-hair while she washed her hands. I thought for sure this would wake her sleeping brother, but alas, I was still yelling from the other room to get him to wake up. He was still asleep. How child?! Did you not hear the chaos?! GET UP!!!!

I sent both kids downstairs, told them to throw their shoes on and wait by the door, reassuring them Mommy would feed them a donut at church, knowing in my mind that there was ample chance the donuts were by now gone. 

I remembered I smelled like fire and quickly doused myself in Bath and Body Works coconut body spray. I now officially smelled like toasted coconut. Great for coconut cream pie. Not great for church. 

We raced to the door, I reached for the keys, but they weren't there. 

NO KEYS.

9:04am

Church had already started, but I could still make it. I instructed my children to look through the shoe tote below to find the keys, thinking for sure they just dropped. I texted my worship leader husband, knowing full well he was probably singing by now, "Did you take the keys?!" Like he'd respond (this I knew when I sent it, but it was a last ditch effort). I was adamant to get to church one way or another. We've only been back one Sunday in 12 weeks. I needed the morning worship. I needed familiar. I needed normal for one more day. 

I rushed the kids out the garage door, realizing I couldn't lock the front door, and said we're walking, let's go. Church is about a 1.5miles away. It'd take a normal adult 31 minutes. I only know this because I google mapped it just now. My children are 2.75yr and 4.6yr old. They'd never make it. And my daughter has a blister on her foot. And my children didn't have breakfast. And I'm wearing a dress and flip flops. What was I thinking??? We turned around, a half block from home, and walked back, all three of us depressed because we really wanted to go to church. Came inside and found the poptarts. Cracked open a Diet Pepsi for my breakfast because we are out of creamer. What good is coffee if it's black? I shook the Half and Half from last week, thinking it'd still be ok, only to get it all over because the cap wasn't on tight. Diet Pepsi it was. 

I yelled at my children for fighting over the last poptart. I lost it. I was fuming by this point. It was obviously the WRONG attitude. So things didn't go the way I thought. Again. Thus is life. 

By now Alan called and simply said, after a deep sigh, "I'm sorry, hun." I could tell he felt bad. It was a simple mistake. Sadly I wasn't the most forgiving wife, and told him I required Chipotle for the mistake and that he'd be taking the kids to Sunday evening church by himself so I can go for a very long walk tonight. 

So instead of church, we're laying low at home right now. My children are playing piano, watching Tinkerbell, playing with trains, and yanking the baby Chloe doll up by her oxygen tube. 

This is life. Real life. One. Day. At. A. Time. 

Chloe Update & Upcoming Surgeries

It's been a whirlwind the last couple of weeks since Chloe got her trach. We call it her trach trunk. Goes well with her elephant theme ;). It was meant to be I guess.

Originally we were told after her trach that we'd wait 3 weeks out and get the g tube (feeding through stomach) and fundoplication (aka fundo, fixes hiatal hernia and helps prevent reflux). Then one week after that surgery she'd get her BT shunt in her heart.

However, that's been changed about a thousand and 2 times now. We haven't updated a prayer request for this because we didn't know how and what and when to be praying. But now we have a plan...

Her PDA duct is closing off, and the prostins are helping it stay open right now. Because this is closing off, if she weren't on the prostins, she'd be desatting constantly and in serious trouble. With her heart not stable without the prostins, she needs the heart surgery first so that she's stable for the gtube surgery. New game plan is now to do BT shunt last week of July (haven't narrowed down day, but somewhere between 28th-30th it sounds like). This would put her 4 weeks out from the trach surgery for that BT shunt surgery. Another reason we're waiting is because her trach site-the stoma-needs to be healed before surgery as there is a chance they might intubate and take the trach out during surgery for easier access to her heart.

After the shunt surgery is done and healing is well under way, and her heart is stable, then she's have her g tube and fundo. After healing from that, there's a chance she could go home to continue growing for her next heart surgery, the Glen, at around 6-ish months old. I have no idea anymore when they'll do things like her cleft lip surgery. Everything is somewhat up in the air until we figure out the heart issue.

Ways to be praying:
1. Pray for low vent settings. She cannot be on very much vent settings for surgery.

2. Pray for continued relief from extra secretions (which could cause her to aspirate or cause damage to her new trach if suctioned often). She's on a new med for this, but it's highly delicate...a lot of possible side effects, so they're only using it long enough to see if it works. If it doesn't, we get rid of it. However, I got to hold her for 2.5 hours last night and she only needed suctioned 3 times. This is amazing! Usually she needs suctioned at least twice every 15min before.

3. Continued wisdom for the doctors as they all consult with each other-between cardiologists for BT shunt surgery, ENT for intubation thoughts on surgery, ENT for continued healing of her trach site, neonatologists, nurse practicioners, nurses...please pray for wisdom, knowledge, skill for her whole team.

4. Pray for the surgery. We're getting nervous as we start to approach surgeries. Chloe is doing well, but with any surgery comes risks. Please pray for healing and peace in our hearts during these coming weeks.

5. For our kiddos. We've had them with us since July 9th and will continue to have them until the 27th, then we'll have a friend keep them that week of Chloe's heart surgery. They're loving time with us, and we're making a point to do fun things with them, zoo/Deanna Rose farm/parks, while Alan and I trade off who sits with Chloe. One of us is always with the kids when the other is with Chloe. Feels weird not getting to get updated together by Chloe's bedside, but it's helping the other two to thrive. Nervous for their little hearts to have to go back to friends soon.

6. For Chloe's delicate dance. Example: We were able to take her off lipids since her feeds are up to 15mL per hour. Nixing the lipids means we can up her chloride which will then help with her heart and extra fluid. Getting the right balance of nutrients for her means she can grow better and not keep doing this gain fluid, lose fluid game. It means we can get her electrolytes under control as well. Having the right balance of the rubinol (meds for secretions) means hopefully less side effects. Having the right balance of feeds, meds, reflux meds, nutrients, etc. will help her to grow. We were joking the other day with her neonatologist that we need to get her little ballet slippers to hang on her bed to remind us all of the delicate dancer she is ;). Anyone know where I can find some???

7. Please continue to pray for safe travels for our family around KC and between KC and Manhattan.

8. PRAY SHE GAINS REAL WEIGHT and gets to that 7lbs soon!!!!!!!

Ways to be praising:
1. He is with us always. He will never leave us or forsake us, even now.

2. Thank you to the National Worship Leader Conference for free tickets to the Brilliance, Rend Collective, and Meredith Andrews concert. A much needed night of worship. Thank you also to our friend Chelle for watching our kiddos that night. #blessed #recharged

3. For all who have sent cards and gifts. We have not forgotten about you all, but have been so, SO blessed by each and everyone of you, whether it be money, gift cards, things for the kids, meals, coffee...the list goes one and we are so, so grateful. You all are carrying us through this time. I may not get a chance to thank each of you personally or with a hand written card like I'd like to do, but know that as I sit and rock Chloe, each of you comes to mind and we are thankful. 

4. Alan led worship back home last week and we were beyond encouraged and loved by the many at Grace Baptist in Manhattan. We are grateful for each of you. Thank you to the elders for loving on us and asking us how we're doing, for the hugs, for the encouragement. We are blessed to see the body of Christ loving us through this time. 

5. Praise for down time. We came home last weekend since Chloe was doing good. I took the kids to the pool. We played with their toys. We had family dinners together, just the four of us at our own dining room table. Alan hopes to cook spaghetti this weekend in our own kitchen as he commented just yesterday how much he misses cooking. Ever since we got married, cooking dinner together as a family has been a favorite nightly activity, and we both miss it. On Monday Alan went to work while I took the kids shopping for a dresser to store all of Chloe's trach care stuff in when we get her home. According to nurses, Chloe needs to be in a common area by kitchen and bathroom because home health nurses will be with us 24/7 for the first couple of weeks. So after Hobby Lobby, happy meals, and having fun on the playground playing and running in the rain, I loaded up the kiddos and we went home to work on cleaning and organizing for when Chloe does make it home. Perhaps it's wishful thinking at times, but we choose to call it Hope as we prepare our home for her. Here's a few pics of our living room/nursery. 

Taking the time to smell the roses at Hobby Lobby.

Some sketches I did during church that are verses we're clinging to these days...

...that I framed on our mantle.

Chloe's corner. Can you tell? Perhaps the elephants gave it away. Soon this cabinet will be filled with trach tubes, vent stuff, saline bullets, gloves, 2x2s and 4x4s, alcohol wipes, extra suction catheters, diapers, wipes, clothes, swaddle blankets, the list goes on...

We'll move the little cradle we have there that the kids have been playing with their baby Chloe dolls in and a friend is lending us her old crib so that we can put the other crib in our bedroom so that we have one on each floor. Love this arrangement as the chair will be close to her crib and vent stuff for when we hold her. We were really hoping the laundry would fold itself, but no such luck. 

6. Finally, praise the Lord for our sweet little friend Charlotte. After a 7+ month journey, the words "going home soon" have fallen out of the mouths of her doctors, and her family is OVERJOYED. Let's celebrate this victory with them!!! Please pray for them as they adjust, not just to bringing her home, but to the house they JUST bought yesterday as well, that they can get moved in and set up quickly. 

THANK YOU ALL for your continued prayers and support.