She's still there, in KC. We're still here, at home two hours away. And her daddy is going back and forth, between daughter's side and work, between hospital bed and quick hellos to us so he doesn't get our germs and endless pavement for the past 2.5 weeks. Our kiddos still have colds, so we have to keep a loving distance and a lot of movie rests to try and get over these germs so we can get our youngest home, or at least be together in the same town as a family. Because I've had glimpses of what the kids have shared with me, it has to be Alan to stay by her bedside to not chance exposure to germs. For this reason, I haven't held my daughter's hand, breathed in her scent, or rocked her for these last 21 days. But I guess on the flip side I've been coughed on, sneezed on, snotted on, peed on (yep that happened), cried on, fevered (new word!) on and more from her siblings.
And it's hard.
And we're all so ready to be together.
And we're all tired of the apartness (new word!).
And we long to be together.
Her overall fluid balance is getting there. Slowly, but hopefully, surely. Her kidney numbers are playing games with us and we're needing to stay one step ahead, while also watching her closely to not jump the gun too much on making changes in her meds. Her single kidney is not a huge fan of big changes. A quick recap for those just joining in: after heart surgery our tiny dancer began a gentle and tiptoeing waltz between too much fluid from heart/lungs vs. too dry for the one kidney. We found a balance back in November. Chloe vowed to hang up for ballet shoes for a while and take a break from dancing, and we were allowed to come home, with very specific doses of three different diuretics. In mid January Chloe got a virus, which then dehydrated her, and we reacted by pulling her fluid meds, however we did not know of the dehydration portion at the time and simply reacted to her high kidney numbers thinking she was getting too many diuretics. Taking away her fluid meds while she was dehydrated did not make for a swell (pun intended) outcome. We danced around doses and labs at home for nearly two weeks before we all just knew it was time to get her admitted for better care. She was flown over to KC and admitted on Wednesday, January 27th.
We've begun to have discussions and what we'll call fact finding missions about the possibility of a port (portacath: a small port placed under the skin with a catheter inserted into a vein so that meds can be administered with quick access or labs can be drawn easily). Chloe is a hard stick. A DIVA. For real, folks. That stands for Difficult Venous Access. I don't make this stuff up. DIVA seems to fit her personality just as much as it does her veins. We've tried many different times and ways for access, but at the heart of it, she just plain isn't a fan. We've weighed the pros and cons, and ultimately as long as we can find a place for the port that is not in the chest (due to heart reasons), then a port in her lower region is most likely doable. The fact finding mission was done by ultrasound on Saturday and we hope to get results tomorrow. This port would be under the skin, not visible above skin. We can care for it at home with the help of her nurses.
Also a part of this fact finding mission was asking nephrology (kidney) team to check her one kidney and see how it is doing handling these higher numbers and what its current function is. For a normal person, levels of creatinine (shows function) are 0.0-0.7 in children and 0.6-1.2 in adults. Chloe's usually sits around 0.5-0.8. Last week it got up to 1.5. Not happy numbers. We're wanting to make sure that while we find this fluid balance that we're not disrupting the function of her kidney. And for the sake of being real and raw, if her kidney would ever need dialysis, that is a stopping point on treatment for her as it would be too much for her with the single kidney/lung/heart balance plus basically living in the hospital. We just know it would not be in her best interest. Thus, we have to protect her kidney as much as humanly and prayerfully possible, and that means paying special attention to it right now.
There is nothing about this journey that is easy. There is a lot about this journey that brings us such joy, like when she plays with wipes, meaning baby wipes. They're her favorite toy. She passes them from hand to hand, rubs them on her face, licks them and sucks on them. Weird little cute creature. You can read through the many moments of joy she brings to us and we've had with her both at home, and oddly enough, even in the hospital.
But under it all, under all that joy and contentment in the season we're in, is this other layer. And when you peel away that last layer, the rawness of the skin below, now exposed to air, begins to burn and ache and pulse hard. Because at the heart of all of this, there is no cure. Her heart condition does not have a cure. If she were not on a ventilator, if she had two kidneys, if there were not so many other issues and ifs (new word), then perhaps a heart transplant would be the someday thought. But for her, it's just not an option. And dialysis, if that kidney goes bad, is not an option. And there are some things that are stopping points on treatment, and other things that a go for treatment. And we know this. And her team knows this. And her team wants to know all of those stops and go's in case we'd ever need to make those care decisions, even if it's years from now, just so we've talked and thought through things while Chloe is somewhat stable. We've had some of those discussions again this past week thinking ahead to have those discussions together with the whole team next week at Chloe's possible discharge meeting.
It's hard to think through what's best for your child on a daily basis and with daily things. But the salt to the wound is deeper when you realize the fact that Chloe is and has always been a grey-zone baby. That while these words are simply laid out on paper now in hopes of never needing them, that there is a heaviness in your chest as you even think through and pray and discuss them. We're positive, but we're also real. We're optomists, having a plan in place, but hoping to never use it.
But we're also people who pray. We pray for the Lord's healing this side of Heaven. We pray for wisdom for the doctors and skill for her team. We pray for insight into treatments and meds. We beg for peace on hard nights where the mama is doing the ugly cry. And He's been good, so good, to answer so many of those prayers. The child who was not supposed to live after a high possibility of still-birth will, Lord willing, turn two years old in just 2.5 months. She's survived a high-risk birth, conquered aspirating (choking), survived not one but two open heart bypass surgeries, and numerous other minor surgeries. She's worked hard to wean off her vent last year, and by this time last year was completely off the vent and breathing on her own. She's learned how to roll from side to side, kick us, fight us during lab draws with immense force, pull her IV's out, hold her head up, and is now working on learning to sit. And doctors said she'd have low mobility. We thought we were going to lose her when she coded on us on three separate occasions. We thought we were going to lose her right before her first heart surgery, during her surgery, and at the twelve-hour mark after her first heart surgery. We thought we were going to lose her after her second heart surgery. But this little dancer is SUCH a fighter and a teaser. She usually knocks us off our toes and surprises us. We all know we can't rest in that confidence, but she's done it enough that we all just shake our heads and say, "Because it's Chloe." We never really fully sigh and breathe freely around her, we just learn how to pace our breaths a little steadier at times. And we will not give up on her. As long as she is smiling and ornery and showing us she's a fighter, then we'll fight right along side her and continue to advocate for her and against statistics.
And we're hopeful. We know we need this "treatment" vs. "when to let her go" plan in our back pocket, but we also know that we if we spend whatever time we have with her, whether that is two more months, two more years, twelve more years, or more or less, that we must use that time well, with an anchor of hope. Because hope does not disappoint (Romans 5:5). Whether we have her here with us for years to come, or He calls her home sooner, we have a hope in Christ that is firmly established (Colossians 1:23) knowing that we will see our daughter again one day. Because we've placed our faith in a God that is good and that conquered death, the hope lies in the fact that no matter what happens, we will see her again one day and that this journey was worth it, for He works all things together for the good of those who love Him, who have been called according to His purpose (Romans 8:28). Will it be hard? Immensely. I can't even imagine and hope to not experience any of the effects of losing a child. But at the heart of it and the reality of it, God is still good.
So now, we lay that out there. The raw thoughts that have been on our hearts and minds in this last week. The worry that creates the pre-mature wrinkles in our foreheads, and grey hair in Alan's beard. The thoughts that keep us up at night lately and the reason I drink so much coffee. Random shout-out to Radina's. The vulnerable cry of the heart in the moments when we just don't know. This is the reality of the life that we live with a medically fragile child. Lauren Chandler says it best in her new book Steadfast Love, which is about the journey she's on with a husband who was diagnosed with a brain tumor, that, "As the Lord invites you to see and know His faithfulness in showing you steadfast love, I invite you to peer into places where I have seen and known Him to be so. I must confess, it's not always pretty. There have been tears, there have been wounds, there have been downright ugly cries, but too much is at stake to not be vulnerable with you," (Steadfast Love, pg. 20).
We have shared our story and journey with Chloe from the very beginning for the sole purpose of showing that He is good even in the storm, and in the hopes that you would taste and see that the Lord is good (Psalm 34:8) and place your trust in Him. We are not ashamed of the Gospel of Christ, and will continue to praise Him with every step of this winding road, be it through tears or laughter, joy or sorrow.
And for now, we continue on, through another week of getting littles well, all of them, in hopes of getting through next week's meetings and back home, under one roof, to our crazy-normal, to continue to keep on keeping on. Please pray for us as the week unfolds.
"What we choose to use as our anchor determines how well we will weather the seasons of life." Lauren Chandler, Steadfast Love
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