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.


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