Update On Chloe, The Red Bag, And A Cue From The Kids

That. The red bag. The duffle bag that we pack on the fly for possible last minute KC trips. We've gotten good at packing quickly. Alan headed to bed around nine last night while I stayed up trying to coordinate childcare, packing a bag for Chloe, helping our night nurse pack up the emergency Trach bag/diaper bag/stroller/emergency equipment tote, and finally eating a late dinner and getting to bed at almost midnight, sleeping with one eye open and my phone right by my head incase our nurse called. It was a crazy night as we anticipated that she'd have another blood episode before midnight. And keeping an eye on Chloe, who by now was happy and playing in her crib.

The bag is still sitting there today, as we continue to keep an eye on her. Overall, she had a bit of a restless night, only getting six hours of sleep or less, and now sleeping majority of the day. She's so tired that her heartrate, which is usually 100's-110's when fast asleep is actually in the 88-98 range today. It's a bit low, and for that we continue to keep watching her because a sign of something up with her heart would be lower heart rate at times. But thankfully when she does stir, she pops back up to 120's-140's. In other words, she's just. that. tired. today.

We talked with her KC doctors, and they believe it could be in part due to her Prilosec for acid reflux not being enough of a dose now that she's grown (again!), the fact that she's getting her two daily doses of Prilosec too close together, along with this blockage having issues. They told us to try the Prilosec for a few days and that as long as we're not seeing more fresh blood or a lot of blood, that the little bit we are seeing is actually ok for a couple of days. So we wait, watch, and hope she continues to do OK until they see her Monday at her already schedule appointment. We're wondering if perhaps she's outgrown her Fundo procedure she had at 3 months, or if her hernia is back that was fixed with the Fundo surgery. We'll be chatting it up with her KC docs this coming week to see what we need to check before she has her heart cath coming up.

It was definitely a scare last night. It's like this with our ornery little peanut.

Sigh.

So we breathe that she's ok right now, we continue on regiment of 1/2 Pedialyte & 1/2 formula. We continue her Miralax. We watch her diapers, her secretions, her spit up for blood. But she's a happy baby now, kicking and playing, and weighing in today at 16.75 pounds.

And after the week we've had, we're declaring a staycation. Alan had his day out today, I get mine tomorrow. We honestly can't remember the last time either of us had an entire day out to ourselves. We took the cue from our kiddos...

Chloe thinks we should relax...

Isaac is teaching us to take a break and do something we enjoy. 

And Abi...

Well, our sweet middle child had a rough day too. We all did. It included rocking her and cuddling, playing, tickling, and even an attempt at a mid-afternoon movie to cheer this one up, but ultimately...

...it wasn't something that the last drop of mommy's coffee couldn't fix. 

We soldier on. 

One.

Thankful.

Day.

At.

A.

Time. 

Confession...

Confession: I can't do this. I need prayer.
Reality: The Lord meets us where we are, lifts up our eyes to the hills, and provides all we need.

It's late. But for me it's early. Pulling a night shift tonight until we get kinks worked out in a nursing schedule. This could be a weekly thing, so please pray we'd have energy and alertness. So thankful for a husband who can balance work, time at home with kiddos, and help with this crazy schedule by getting up super early or pulling night shifts. So thankful for him and all he does.

I'm on the verge of tears. I'm tired and worn. Not just sleepy tired, but heavy heart tired. Ok, so maybe a little sleepy tired too. I might have dozed off this afternoon while rocking a baby girl. Thankful my nurse was right there incase Chloe needed something! I long for the days when Chloe is older, officially off her vent, running, and yet, hoping to soak up this baby-sized time as well. Those coming days are not so far out of our reach. She's almost one!! I look back and can't believe how we ever survived over five months in the NICU...how we ever endured each long day and each restless night in a bed that wasn't ours, in a house that wasn't ours, on a street we didn't know, in a town that was unfamiliar.

But we did. And we continue to press on.

Chloe's rocking it, as usual. She went over 11 hours >>> ELEVEN!!! <<< off her ventilator today!! She's doing this! Goal is 12 hours off by heart surgery in May/June, but this little stinker, who tends to pop herself off her vent these days as if to plead for HME time, is already at 11 hours off.

She's over 16 pounds. This chunk of love has dimples on her fingers and feet. It's awesome. We never thought our preemie 3lb 7oz sweetheart would ever have to deal with stink neck or stink rolls because of baby chubs, but here we are, loving every single roll on her little body and soaking up the fact that she's finally on growth charts and sprouting up a storm.

But alas, it's been a hard and long few weeks. We're so grateful for winter to be behind us and are enjoying this beautiful springtime weather. We're swinging outside and cuddling. We're going to the zoo. We're going on walks and we're snuggling in the breeze on home made quilts outside in the shade and green grass.

But the days are still long and to be honest, we could really use prayer.

For the last 3 weeks, Chloe's been restless when trying to fill her diaper. When she bears down, she coughs, spits up or actually vomits, and then is pretty unhappy for a good twenty minutes or more, breaking a sweat and then being exhausted. Nearly every episode requires bedding change, wipe down with wet wipes too cool her down, etc. Her doctors think there's a blockage, so we're trying a stool softener to help her, but are having trouble getting the dose right. One day she needs half a dose, the next it's too much, the next she only needs a little bit... We've tried every other day and it's not enough, and every day is too much. It's a delicate little dance she's having us do to help her poo. I rhymed there. It's late. Just smile and read on...

So here we are, day 18ish of Miralax baby. The days she's doing ok, she's amazing-rolling and playing, smiling and cuddling, working on sitting up, rolling herself to her belly, doing PT, even SMILING at us during her trach changes and trach cares-she's reaching so many milestones, and also is sleeping majority of the night and is off her vent majority of the day. But the days her belly is messed up...she sleeps. She's restless. She has fits of coughing and bearing down till she's red and we're venting her belly every 15min until she's calmer (aka burping her). And it's all we can do to help her to settle in for a good nap after those episodes.

We ask for prayer. It's making the days long and the days she's off-kilter, we're discouraged. She's so close to doing so amazing and really taking off on these milestones, but it's 3 steps forward, two steps back each week. Please pray that her belly would settle and that soon her system would be regular again and she'd be happy baby every day again. Please also pray that these lovely blow-out diapers would be handled carefully to continue to protect her one kidney from any UTI's.

This coming Monday she'll see her ophthalmologist again for one year check up on her eyes. Please pray that we'd be able to help her from continuing to get so many clogged tear ducts in her right eye.

We'll also see her home vent team (primary doctor) and hopefully we can figure out this belly stuff so she can settle into just growing and thriving again. Please also continue to pray for safe travels to and from appointments.

And ultimately, we need prayers for her healing, our hearts for peace and trust in the Lord's will. She'll be having her heart cath at the end of the month, just days after she celebrates her first birthday, to check pressures in heart and lungs in prep for heart surgery about a month out from cath. I find myself praying for her often, asking the Lord to sustain her and continue to heal her this side of Heaven. We understand with a full heart that there's no healing for her-for any of us-this side of Heaven, but we're asking the Creator to heal her as much as He wills, and are praying for successful procedures and surgeries in the coming days.

As a mama, my heart is so torn. It is scared to hand our precious child off to a surgery team. Especially after her episode during her shunt placement surgery last August. But on the other hand, we're choosing to focus on the Lord, on His provisions, on His will for her life, and the fact that over and over again, God's Word reminds us to not fear.

That the waters will not overtake us, and the fire will not burn us.

We're praying that He will continue to give our hearts peace instead of anxiety,
strength instead of worry,
trust instead of fear.

Please help pray us through these coming days and weeks.

Nature Lover

We had a beautiful family day, soaking up the sun and green grass and watched the leaves gently lacing themselves through the trees. Chloe was content to lay on her blanket, look at the sky, and find her teeth, so I took advantage of happy baby and shot a few pics. Unfortunately my professional camera officially bit the dust and I had to use the camera on my phone, but we'll still consider these her first outdoor pics none-the-less because we FINALLY made it through winter and outside to sunshine!

Chloe Elizabeth

11 mo 6 days, 15.9 Pounds

{All images copyright 2015 Chloe Girl Designs. 

No images may be reproduced in any form, copied, printed, or redistributed.}

iDrool 

Sun. Shade. 74 degrees. Breeze. Beautiful napping weather these days. 

Spring: Hope Against Hope

Spring is swooping in around us on the wings of the mourning doves and robins. Our neighbor's tree has already birthed tiny white blossoms, and our little tree, that still has Chloe's pink coming home bows in it from six months ago, has gentle green buds emerging. Soft rain fell yesterday, and the earth below has started to soak it up and send brilliant greens up the shoots of each blade of grass, subtly changing it from winter's dusty dry brown to replenished green hues gently speckled throughout our yard.

Spring brings hope. The ground thaws. The earth warms from brisk frosts to warm soil under the sun's rays. Life emerges from the dirt floor beneath. Or, in our case, it also emerges from the plastic planter in our kitchen with potting soil and tiny seeds that little toddler hands planted a few days ago. With a little hope, and hopefully not too much over watering (as is my usual dismay in my attempts to grow things), green shoots will soon burst forth from the soil.

But it's a test in patience. We must be patient. We must wait for the Lord to grow this beautiful plant that will burst with pink and orange petals (I can't tell plants apart, otherwise I would have said the plant name just now!). God's Word says, "So neither he who plants nor he who waters is anything, but only God who gives growth," 1 Corinthians 3:9 (ESV).

It's not up to us to make every plant grow, every seed take root. It's the Lord's doing.

I think back to the day two Decembers ago, when the ground was hard, the snow was falling, and the earth was fast asleep, hibernating for winter, that we had our first ultrasound with Chloe. And it all went wrong. We were pregnant for the third time, expecting this amazing gift of a healthy child to be born in the Spring, and to welcome this child when the flowers blossomed and leaves were finally back, swaying up in the branches, playing in the trees. It was a refreshing and exciting thought. But the ultrasound read differently. Like the frozen air outside, that grabs your breath as it escapes your warm mouth and holds it in a mist before you for that split second, yeah, that's what the results were like for us. Our hope for spring and all that it meant were gone. It felt like when the blossoms are on the bushes and about to bloom and then there's that dreaded late frost that unexpectedly blankets the earth in the deep of the night, and you wake to petals drooping to the ground and breaking under the weight of purplish-blue crystals, which look pretty on the outside, but you know it's hurting the plant within.

But we held on to hope.

And the Lord made her to grow. Small, tiny actually, but He grew her nonetheless.

Perhaps you've had a hard ultrasound to take in. Perhaps you're awaiting that moment of spring while carrying a child within, but you've found yourself on that cold table hearing results that do not make sense and it feels like a hard and sudden frost has hit. It's hard. It's gut wrenchingly hard. I've been there. But the beauty is that there is always hope. Our prayer is that if you've heard Chloe's story, then you've heard a story of hope springing up where once there was none. Our hope is that if you're in the same situation we were in a year and a half ago, that you'd choose to hold on to hope when there is none, because sometimes, that's where the best gifts arise. Perhaps you're hearing words like trisomy, CDH, missing a kidney, hydrocephalus, or perhaps the diagnosis is simply that the baby needs delivered early as a preemie...still, do not give up hope.  On this journey we've seen so many littles who have endured hard beginnings, like the frosted petal that somehow, against it all, broke free from that frost and emerged vibrant and colorful. Will it be a hard journey? Yes, most likely, it will. But even the smallest flowers, with the thinnest of stems can withstand the most brutal thunderstorm and wind and survive to see the beautiful rainbow after the rain.

Be encouraged today. Have hope in the midst of a season of fears and what if's. Perhaps yours is a story of trying again after a loss, and thus it's so easy to be ensnared by the grip of fear. Or an adoption that didn't go as expected and hope was lost. Or you're in a season of longing for another adoption after a successful one. Or, your season has nothing to do with any of this, but perhaps is just as hard of a season to walk through and you feel distracted, stuck, hopeless. Do not stay in a season of fear for the future or guilt of the past.  Allow yourself to mourn and grieve, but also give yourself grace to have joy again. "For you did not receive the spirit of slavery to fall back into fear, but you have received the spirit of adoption as sons, by whom we cry, "Abba, Father!" (Romans 8:15). Cry out to the Lord.

Perhaps in hoping against hope, a spring will come again. Perhaps that spring might not be what you imagined, perhaps it won't include a baby as described in this post, or other longings, such as a new job, a better financial situation, a new fill-in-the-blank. But He will do a good work in it because that's what He does. He is faithful and His mercies are new every morning (Lamentations 3:21-23). He takes our messes, our ugly or unexpectedly frosted-over, cold hearts, and makes them new again. The Lord doesn't leave us or forsake us. Instead, He changes us and molds us more into His image and makes His heart's desire for us become our heart's desire. "Delight yourself in the Lord and He will give you the desires of your heart," says Psalm 37:4. Know that it means that He will grant you His heart's desire and plant it within you. Not that whatever you want He'll grant, though sometimes He does. And with that, plans might change, journeys might shift. He might guide you in a new direction that you never saw coming. In our case, He brought us a spring with a new baby girl. He did sustain her in the womb. But it took a path we never imagined. We never thought our heart's desire would become to help others with special needs babies. We never intended when deciding to have a third child to lead a life outside of the normal and ordinary, but He did. We never thought that having another child would teach us so, so many hard lessons, trials, triumphs, fears to be faced, and praises and joys, but it has.

Hope against hope. And spring will come again. 

Spring, And Big Changes, Are Coming

I laid in bed this morning, watching the glow of light behind our curtain start to brighten, quietly, hues of purplish grey turned gently and slowly to brighter and more vibrant light. I listened to the birds, quietly chirping, and thinking that in just a few days we switch to Daylight Savings and spring ahead. Lighter later. Birds now waking at five a.m. Sunlight streaming earlier. Creatures stirring earlier, including, most likely, our kiddos as their bodies adjust to earlier days. I felt the rush of spring on the way this morning, got up, got ready, asked to go to coffee for an hour before the start of my nurse/mama day, and rushed outside the door.

Directly into a rush of chill. Directly into a wall of frost on the windshield. My daughter would probably blame it on Frost Fairies {we've watched a LOT of Tinkerbell these last few months!} I'd only thrown on my fleece jacket, forgetting my gloves and my signature scarf. I live in scarves. I forgot it. I thought it was nice enough without it. Of all days. IT'S COLD!!!! The beautiful birds were NOT outside, they were on Chloe's sound machine in her crib. Seriously, folks. The sound machine tricked me. And it's cold. My awesome minivan said it's only sixteen.

But that's kind of been the rhythm of the last two months. We keep getting tricked. We plan on appointments and vent weaning and excitement in her getting bigger, and are tricked when she catches a virus and has a set back. We went from nine hours a day off her vent to every minute of the day back on while she fought her virus. We went from week to week rescheduling and rescheduling appointments at Children's because of the virus, then snow, then the second part of the virus that hit her, and each day we thought she was getting better, she'd throw us off and decide to start a fever or runny diapers. She kept us on our toes with this/these virus(es) for the better part of 3.4 weeks.

But we're so close. We're so close to her getting her Glenn procedure-the heart surgery that will involved bypass. Chloe's heart cath, to check all pressures in heart and lungs, was supposed to be yesterday. But with the virus, we pushed all back. She's got to be tip top and spit spot before that procedure. So we start the clock again, and wait for her to finish up her inhalers and be completely better. Then we start the clock again, and four weeks from that moment will be her heart cath. And four to six weeks from that will be her heart surgery.

The clock is always there. Time is always moving, and yet, even still, stands still a bit for us. We've made big changes. We're still waiting on one of our nursing companies to help us find nurses for two days of the week, so between those days and my husband's two days off, we do half the week ourselves right now. We've stepped up and grown in confidence, and now do it by ourselves, a feat we never imagined we'd be able, or comfortable, to do. We trade off a few hours by ourself so the other can get out for a bit, run errands, start to actually grocery shop again, or grab coffee with a friend. It's happening, slowly in chunks, and we pray daily for wisdom and guidance and skill. We pray for no emergencies while there's only one of us there. But we do it. And it's giving us a glimpse of "normal" and of what days might be like as Chloe gets older and we can do more and more ourselves and less and less require nursing and others to help out. To feel completely our own family. to be a family of five and not need additional help coming through our door, not because we don't want it and appreciate it, because we've appreciated every single ounce of help, but simply because we've only tasted a few gentle moments of that serenity that is our family alone under one roof a few times since we brought her home.

This is what our house looks like on "normal" family days. Days when I'm the mommy and the nurse all wrapped up into one...

Me, catching my daughter through the window of her doll house. Her, "I no pick my nose!! I wasn't picking my nose, Mommy, I wasn't!" Riiiiiight. 

"I'm Obiwan Kenobi. This is what he looks like back when Anakin was little." 

Me, "Doesn't that hurt your ear?"

Son, "Nope."

I seriously clipped it onto my ear just to make sure. He's good. It's all good. 

This precious moment was followed shortly with my three year old stripping down beside me in the front room and saying, "Mommy, can you help me go waters?"

"No, I have to stay here beside baby Chloe."

"Oh, ok, I will go waters all by myself then." {Strips down beside me, still in the front room}.

"NO, go do it in the bathroom!! You might have an accident here if you take them off here!"

"Oh, right!" {Runs with bare naked bum and pants around ankles past Obiwan and past Chloe's vent, waddling quickly with Elsa unders tangled in her ankles to the potty}. 

Meanwhile, #3 is now sleeping peacefully during her morning nap. You know, after I attempted playtime, then managed to make her upset when I tried her hearing aids for the first time in weeks. She wasn't thrilled. I think she still has fluid in her ears hurting her. But a few suctions, hearing aids taken out, and two books later, she's asleep. Ish. 

So things have begun changing. We're doing more on our own, we're not taking risks doing it alone so much as gaining in knowledge and growth as mentioned above. And it feels amazing. It's those days that I finally feel like a mommy of three, not a mommy of two with a nurse caring for my third. I can't explain that any other way other than to say she feels completely ours on the days when we don't have nursing. And gives us hope for the future. And doing it alone gives me a sense that she's really mine. We're really doing this. We're wearing many hats, we're nurses and doctors and therapists and real life jobs along with that as Alan leads and works and I design on the side and as I homeschool my preschooler. We're doing this. All of this. All of this that seemed impossible when she was first born, and a mere dream when we didn't know if she'd come home from the NICU. We've hit a rhythm, finally, and we're doing this. And even though it's crazy, and busy, and a wild ride, we wouldn't have it any other way.

It's still a long road. Many babies waiting for their Glenn procedure, sadly, do not make it. Chloe's rocking it. She's thriving right now. She just cut her first two teeth!!! Try giving a cleft lip baby a teething ring...it ain't happenin! Try giving a cleft lip baby a wet and frozen gauze to gnaw on...she wouldn't do it! Try rubbing your finger along the gums to relieve pain...she'd gag. It was a fun little ordeal, but she did it and we all survived. She's still trying desperately to push her trach tubing out of the way to roll over more. She's holding her head up. HOLDING IT UP!!! Almost consistently these days when we sit her up. She's growing and gaining so much strength. We got the go-ahead to start her HME trials again as of yesterday, so the weaning begins again! Her docs want her off the vent, at least during the daytime, by heart surgery for best outcome. So we begin, spreadsheet of trials off and olympic-worthy HME workouts for our little champ.

We are so, so blessed to get the front row seat to see each new thing on each new day. We do not take a single day with her for granted. Some days require more coffee, some chocolate, and some require three changes of pink and teal and purple tutus {not for me, my 3 year old}, but NONE are taken for granted.

Spring will come soon. Cath will happen soon. Birds will start chirping their songs earlier and the Easter season will bless us and little girls will twirl in pastel dresses soon. And we'll embrace it all. We'll put this long, cold winter behind us, yet take with us each memory made within the four walls that kept us warm and healthy from germs this year, and face the days ahead with joy, knowing that the Lord will carry us through this coming season of surgeries and thank Him for blessing us with her thus far. He hasn't let the waters overcome us or the fire burn us yet, nor will He ever. {Isaiah 43:2}

God is good. And we rejoice that SPRING is on the way!!!

...and then this happened an hour after I wrote the post...been waiting since Christmas for her to have enough energy to get out of that crib and really play with us!!! So today we praise for no more Lovenox, and ready for play!!!

The Ugly and the Beautiful

The snow fell last night. It came gently, layering the ground beneath in beautiful crystals of white. I called my son over to the window that evening to see it covering the ground, and he looked over to the east and, seeing the reflection of lights within town against the dark sky, shrieked, "Look at that beautiful sunset! We can still see the sunset!!" We have this game where he and I point out what time the sun is setting and run and watch the palette of colors stream across the sky. I started to explain to him last night about the reflection of lights, and that it wasn't the actual sunset, but he was persistent that it was. He saw something he loved, something beautiful beyond the darkness surrounding the silhouette of the trees.

Chloe's ugly bug is still here. Day #12. She's now on a mix of formula and Pedialyte. She's been having runnier diapers. We're praising the Lord that her oxygen saturations are still beautiful, her heart rate is good, and her respiratory rate is within its normal range. By the grace of God, she still has no fevers. She's warm and snuggly and all tucked in. And sleeping. A lot. Her doctors are encouraged that other than this ugliness of the need for albuterol and steroid, and some runny diapers, that she's holding her own.

We're still nervous. We've had conversations about what to do or to plan ahead for our other littles should Chloe's doctors want her to come in for visit. We've talked through logistics if we'd have to pack her up and take her if they want to admit her. We've chatted endlessly about how she was doing better last week, then turned pale and tired again. She's pinked up now, but is still so worn out. It's all we can do to let her rest. I haven't even held her other than beside her crib for the last two weeks, and even then, when I do, she gets restless. I don't like this ugly bug. I don't like the constant temperature taking, closer chest listening, watching to be sure her tone is pink. We're to go to her appointments in KC on Wednesday, for ultrasound on the blood clot and echo on her heart. We're slightly anticipating this so she can be seen, and dreading it because we're afraid it'll wear her out.

I don't like that slight shadow that follows us at times, where we are focusing on remembering that a simple ugly bug for some means so much more healing time for her. Where we're not thrilled about snow and ugly roads and cold temps if we'd have to load her up and take her in.

But we've learned on this journey, that we can stare out the window on wintry nights and look at either those black silhouettes, or we can choose to instead see the beauty in the white snow. To be reminded that He makes all things new. That the Lord alone is the great physician and healer. That He will see us through these long days of helping our sweet Chloe to get over this ugly virus. And that even now, in the midst of her virus, to allow us to soak up each sleepy snuggly, each warm hand rubbing her back moment, each squeak as she finds her voice.

There's always a chance to see beauty in the ugly. Joy in the pain. Hope in the waiting.

Today, instead of letting the fear of weather in light of Chloe's condition scare us, we're having joy in family time. We're sledding and throwing snow. We're laughing and making snow angels. We're giggling as we watch our son wear hot pink snow pants over his cowboy boots because it's the only pair we have for him {he wasn't thrilled either, but the joy of snow won over the ugly snowpants}. We're snuggling and watching movies and letting our sweet baby girl get tons of rest.

I was changing the trash earlier today while my daughter was beside me, sipping her warm hot chocolate, held in her sledding-battle-wounded, bandaid-wearing hand, hot tears still drying on her little rosy cheeks from the incident, and watching me tie the trash sack. She watched me intently stuffing the last of the gross trash in that had fallen on the ground, then studied my hands as I tied a knot with the red plastic ties and then said, "Mama, tie it into a bow. It needs a bow." She smiled and nodded contentedly after I did. It didn't matter to her what the trash held, or that it was a trash sack and not a princess dress. To her, it deserved a beautifully tied bow. She saw that even something gross could be pretty. Something mundane could have a touch of sweet. Something ugly could still contain beauty.

There's always room to see the beauty in the ugly.

An Update, A Game-Plan, and A Book

Chloe's had a bug. A virus of some sort for the last 5 or 6 days. She's been tired. She's been sleepy and not wanted touched. It's been hard to hear her little wheezing, to hear her crackling when she sleeps. Lots of suctioning. Lots of watching and listening. Lots and lots of sleeping, and flipping her "pillow" (aka burp cloth pillow) to the cold side.

We missed her heart echo and her ultrasound for her blood clot yesterday. We were literally loading the car for the day away at appointments and decided to call and get thoughts from her team because she was pale and exhausted. They agreed to let her stay and rest and shoot for next week.

I can't lie, it was kind of scary, but like a cautious we can almost see this coming kind of scary. Not scary like last time, like, "Hey, we need to fly your child to the PICU because we can't hear her murmur" scary, but still, a bit nervous we were none-the-less. A virus for most is a walk in the park. Few days in bed, bottle or two of hand sanitizer, and better by Monday. A virus for Chloe is weak, pale, wheezing, endlessly watching her O2 sats, heart rate, respiratory rate, counting wet diapers, calling Home Vent Team to confirm if it's vomit or upset stomach from drainage, and taking many, many temps to make sure she doesn't have a fever. It's been elevated, but praise the Lord, no fever so far.

Today she finally woke up and played. Her little cheeks pink and getting pinker. She let me cuddle and hold her for about thirty minutes. We snuggled. If it wasn't for the fact that she piddled her diaper while I held her, she probably would have cuddled longer. But I'll take those sweet thirty minutes. She played with her toys, grabbing them, feeling them, listening and watching them. When I left for some quiet time out, she was still playing, after nearly two hours. Felt so amazing to see her feeling so much better. Thank you all for our prayers, and let's continue to pray that she continues to heal. Please pray that she'd be able to get back on her off-vent trials again soon.

So there's the quick update. But some have been asking lately how she's doing in general, as in development. She's on the cusp of 14lbs. She's a chunk of love, having more than tripled her birth weight. Physically, she looks like a 4 month old. Developmentally, she acts like a 4 month old, nearly able to roll over to her side, definitely able to roll from side to her back, reaching for things, grabbing and playing with things, yanking her hearing aids out {and throwing them}, kicking and pulling her legs up while she plays whereas before she only pulled them up during coughing fits. She's now over nine months old, but seems like a 4 month old. To better explain this: she was a preemie, born a month early. She was on pain meds for 3-4 weeks while intubated or she'd yank her tube out, on more meds after her trach surgery for healing, and more after her heart surgery. If you add up all of those weeks, that backs her up to be right around a four month old. When we review it that way, we're actually so encouraged at how far she's come when she wasn't given hardly any hope at the beginning. We can't wait for her next heart surgery and the hope that this will greatly help her grow and begin to thrive even more.

She's scheduled for a heart cath to check pressures in her lungs and heart, to ensure that all pressures are good for her next heart surgery. Because this next one will definitely use heart/lung bypass, we need to make sure she's in tip top shape. Unfortunately, her cath for beginning of March might be pushed back due to this virus, and thus push back heart surgery a bit, which is most likely sometime in May, after cold and flu season is in the rearview mirror so to speak. Any other surgeries such as cleft lip and cleft palate will be second to the heart surgery and not performed until she's recovered from that surgery (although she will get tubes in her ears during that one).

So for now, we soak her up. We play with her. Hold her. Tickler her. Love on her. Let her love on us. Watch her grow and thrive and pray she would get over any bugs or viruses and continue to grow. A friend gave her a 6mo onesie back in July, knowing she'd have to grow into it. I nearly cried as I put it on her the other day and it fit perfectly. She truly is growing, and actually has a beautiful growth curve, even if it is less than 0% and her very own hand-crafted bend upwards. We are living life and soaking up this time as a family as we anticipate her cath and upcoming heart surgery. We are blessed by her more and more each day, even the hard days, even the long days, even the scary days, especially the amazing days.

Along with her update here, I wanted to share a thought, a vision. We've been overwhelmed by so many who have followed her blog, who have taken the time to comment, to email privately, to say how much this has helped them as they have endured hard medical experiences with their children, or someone they know has been blessed by Chloe's story and journey so far. I've felt for a while that the Lord is pressing it on my heart to write Chloe's story into a book. At the heart of our journey is the fact that we knew ahead of time what all Chloe might have, based on her ultrasounds. We were the family in the sonogram room who received unexpected news and were challenged to walk this scary road from before we even laid eyes on our daughter at birth. While there are many books or resources about children born with disabilities or genetic disorders or other conditions, and the families didn't know until birth, or other conditions that weren't discovered until a few months, or even a few years, old, there are not many stories shared about what that road looks like before your child is even placed in your arms for the first time. This journey with Chloe has brought to light so many who have had ultrasound experiences-going in to hear if it's a boy or a girl, and leaving hearing that's a heart condition or genetic disorder. Our prayer is that Chloe's story not be just about the fight she's had since birth, but the fight we had before her birth. I hope to share hope for the birthmom walking this journey before their baby is here. We chose life, and part of choosing life, was choosing to walk down a hard road, a road with no guarantees, even before she was here, and then continuing to walk that path one day at a time for the last nine plus months. And also because there are many who have asked about our journey, but have not read the blog or all of Chloe's story, and would love to give them the opportunity to be a part of this walk by reading through Chloe's journey, from the beginning.

I'm asking for prayers for wisdom in words to say. We both feel led to do this, but other times, feel unprepared. That we need to continue to share hope with the families who are going through a similar pregnancy, but struggling a bit with where to begin, how to form the words that will be hard to read, and yet also so, so full of hope and joy, and of course laughter 'cause this family is a bit crazy at times {just ask our nurses!}. Please pray for guidance in this process, that this would be for His glory and no one elses. That He would give me words to speak as we share this journey. That others reading it would be blessed to know a step ahead what this might be like, that it would help prepare their hearts for their journey. And ultimately, that those who might be walking away from an ultrasound where they've been told their baby will not be considered "normal/perfect" by this world's standards, that this family would choose life, and choose to abundantly love their child, imperfections and all.

I'm also asking that if there was any particular post from the last year that blessed or helped you, to please comment or send an email because it will help me to process which posts to include in the book.

Thank you all for your continues prayers, uplifting emails, dinners {seriously need to get recipes from y'all!!!}, encouragement, and love as we press on and press into Him.