D A Y  T E N. 

“10 days is all it took for my parents to fall unconditionally in love with me (really, it only took a single second). In 10 days, I totally changed their lives, and they’ve never stopped rooting for me since. 

••••••••

It’s been a hard time lately for me. My tiny organs just aren’t jump starting like we hoped they would, so they’ve told me I’ve gone into liver and kidney failure. But even then, I sure am trying my best. They also found a clot in my brain limiting blood flow, and realized the left side of my heart just isn’t pumping like it should. And, I should mention, I’m real cute and puffy, but ultimately I’m just too big for my lungs and heart, all the things, to function independently. I’m up to over 10lbs, and it’s made me really, really exhausted. They tell me now that I like to “…ride the vent”, but the truth is I just am tired and can’t breathe deep enough because of all this fluid, so the vent is doing all the work now. It’s helped me take some rest, but now we’ve realized I’m just not able to do it anymore myself. 

My mom and dad have cried a lot lately, but even when they are their weakest — they still talk to me and tell me I can do this. That I am SO strong, and have fought really really hard. And I have. I am small, but so mighty. But here’s the thing, my parents had to make a big decision today. They had to decide whether to help me fight with doing a risky procedure to help get some volume off me, or to just let me stay the same / see if I can do this all myself (but boy, I am tired, and in the last two days I’ve tried – but it’s just not been enough), or they were told the option to just provide me comfort and care to let me go gently. Well, with the confidence and education of doctors, my parents are giving me a chance to fight one more round. Option 1 it is. And honestly, I’m not ready to give up. Maybe I just need some help? I just need some help to get this volume off, so my tiny organs can eventually work again. It’s what I tell myself, and I know what my mom and dad believe in. I’m not ready to leave, and they aren’t ready for me to leave either, so I’m going to give it my absolute best shot. 

At 8:30am I’m going to be given a new treatment called Aquapheresis and have a catheter inserted in my big ol vein (I think it’s the jugular?). They tell me it’s a form of dialysis, but for short term to help get this darn fluid off me. It’s a risky thing because of my darn brain and my clotting factors! But again, the doctors believe this is my best option to try and make this really rough start, a little better. I’m going to do my best, but my parents know how tired I am. They’ve told me whatever I am able to do, whether it’s good or the bad… that they are S O proud of me. I don’t know how long this could take to work, or what my body can or can’t handle, so my parents are just trying to love on me every chance they can. And boy let me tell ya…. I’ve never felt so loved before in my life. If they are all I ever know – especially my daddy he dotes on me so so much, he even has already started telling me secrets and not telling mom! – but if they are all I ever know, I couldn’t have asked for anything on this earth that is better. Oh! And the silver lining I will say to all this, is because of the risk, my nurses finally let my momma hold me. I wish I could’ve felt her skin, but I just can’t tolerate that yet! But I felt her for an entireeeee hour. Oh, and my daddy, his arm was under hers, so it was like our hearts were in sync and I will never forget it. They told me I felt like heaven, but the truth is… for once in my short life, it finally felt like home. Hopefully, if I can fight even harder than I already have, next time it can be daddy’s turn! I know he’s going to feel so warm. Mommy always talks about how he holds her when she’s upset or sad, and to be honest… my tiny self could use the same. 

My hope with telling you all this is that you can pray for me. Pray for my parents. Whatever you choose to do or believe in, lift me up. I’m not ready to leave yet, but I know it’s time for decisions and I know my parents made the right one. So, like they keep telling me, it’s G A M E  T I M E. Time to be strong like an O A K, and be F O R D tough.”