First, I must acknowledge how blessed I am to work at such an amazing facility full of the most wonderful people. These people, many of whom I don't even know, have donated leave so that I could stay here with Avelyn during our darkest days. Not only did the leave prevent us from having to worry too much about our finances (or me losing my job), but it provided us TIME. I don't think you can ever truly appreciate the gift of time until you're told the life of a loved one is to be measured in days, rather than years.
I could write a novel about how much the gift of time means to me and my family and it would still not adequately discribe my gratitude or thankfulness. The leave my friends, work family, and complete strangers donated, allowed me to stay at my daughter's side when we thought all hope was lost during, what we thought, were her final days. I was able to tell her I loved her, over and over and over, when we were living hour to hour and day by day.
I got to witness her fight her way out of the darkness when it seemed all consuming and overwhelming. I saw her come back from the brink of death with a furious tenacity that made me more proud and humble than I could have ever imagined.
I was here for her first wet diaper in weeks (a beautiful 8 ml's), on the very day the nephrologist told me her kidneys would likely never show signs of recovery.
I was here for her massive diuresis, when she lost more than kilo of fluid in a week's time and her prognosis shifted.
I was here for her extubation, when every one of the providers tried to prepare us for her failure but she prevailed.
I was here to be an extra set of eyes, to study her trends, progression, norms, and to advocate for her tirelessly (or exhaustingly may be more accurate).
I truly believe Avelyn has faired better than she would've otherwise because Sean and I have been here to constantly review, question and participate in her care. Don't get me wrong, I know we have missed a lot. But we have also caught few big things and many small things that could have set Avie back even further.
Anywho beyond the medical side of things, in the last couple weeks I have been able to be more of a mom. As sedatives are weaned, she grows more awake and alert. In the last week, she has seemed to truly know and respond to my voice again. When I talk to her from across the room, she looks for me, and when she focuses on my face my spirit soars. She settles best when Sean and I pick her up and truly enjoys our snuggles.
I have also been here to help her along in her motor and psychological development. She's doing a lot better with head control, face recognition and, as of today, has started practicing tummy time.
I was here for all of this because of you all.
And while I'll likely miss many firsts while away working, I know that's all they'll be. Firsts. Not one and only's. Not lasts. Not one of the few. But firsts.
I'll see her grow. I'll see her explore. I'll see her love. I'll hear her voice.
I'll bring her home.
I am trying to keep this frame of thought in the forefront of my mind, but I know it won't be easy. I will be an emotional train wreck every day I am away. The frequency of my calls will likely drive Sean and the nurses crazy. I am not usually an overly emotional person, but in the coming months I highly anticipate breaking down without warning (I'll just go ahead and apologize to my coworkers in advance).
Yes, the coming days will be hard, but they won't be the hardest. I feel blessed that my returning to work coinsides with Avelyn's recent progression and recovery. I know this is an answered prayer. I also know that while she is still surrounded by uncertainty, and surely has very difficult days ahead, Avelyn is and will continue to be in good hands. Hopefully she won't notice my absence too much, and it's just me and Sean that struggle with this transition.
In the mean time, if you see me out and about in Johnson City, please be kind. Please don't ask me how I am fairing. I can assure you, it won't be well. I very well may be barely holding it together. Neither of us want to see me ugly cry. Because that's sure to be awkward. As surely as I know it will be difficult, I know I'll be ok and we'll make it through these next couple months just like we have the last six. We won't be unscathed, but we'll survive.
As always, thanks for the support and prayers. Avelyn continues down the road of slow daily progress with a pit stop here and there due to complications. She continues to struggle with medication weans but is toughing it out like only the wonder girl could. Please continue to pray for pee and do your peepee dances. We still believe her little beans will respond and she won't always need the dialysis (though she is tolerating it well).We moved to the less acute side of the PCICU!!
Gaining head control is such hard work for our itty bitty.She now bounces between .05and .025 liters of O2, we're hoping she can be weaned completely off in the next couple weeks.
Tummy time wore her out, and also made her mad :/ She didn't seem to care about how well she did with it, she gave me this glare for a good while afterward....