Monday, February 16, 2015

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.

Tuesday, February 10, 2015

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.
Saturday, February 7, 2015

This Journey Isn't Just For Us

I haven't posted since Christmas. Not for any particular reason other than we're living life.

We're chasing a three year old and cleaning up those little piddles from playing instead of pottying.

We're schooling our five year old.

We're soaking up our 9 month old.

We're loving and living this life He has blessed us with. Enjoying every moment, good and hard, as we approach her next set of procedures {heart cath on March 4th to check pressures in heart and lungs} and surgeries {open heart, bypass surgery in May}. 

We simply haven't been writing because we've been living.

But today, I write. Not for myself or our family. If you'd like a current update, check out Our Chloe Elizabeth on facebook. 

But today I write for a friend. You see, this amazing, tall, curly haired woman blessed us in so many ways, simply by meeting her when we attended church in KC while in the NICU. She took us under her wing, cleaned our Ronald McDonald room, washed our clothes, sat by with us during surgeries, and played with our littles. She left a wedding the minute I called to say Chloe had coded and we needed someone to watch our other littles. She served us in many ways. God blessed us with this stranger who has become family to us.

And now, let's help her family. 

They were in the process of adopting. Due in two weeks. Nursery ready, car seat in van, bags packed. 

And yet, in the midst of the hurt and loss, the grieving over preparing their hearts for this child, they've been approached about another possible baby to adopt, and quickly. 

So the reason behind this post today, after more than a month of not posting, is to ask for PRAYER, GUIDANCE, and FINANCES to come through for this family, whose heart longed to snuggle another precious gift, willing to put their own money into this other birthmom and child, only to be left empty-handed. 

Chloe's journey has brought us many places, and taught us so much, and continues to teach us. Today it's teaching us to be there for someone who's been there so much for us. This family has blessed us in many, many ways. Let's help bless them back. 

So we ask, please, if you feel so led, please follow the link below to her blog and consider giving in prayer or financial support to help them adopt this baby, if it be the Lord's will, that within the month, they can hold this precious bundle in their waiting arms. 

To read their story and why they're gently asking for support:

To give to this adoption:
Let's help bless their socks off like they did for Chloe <3