I have been so consumed with taking care of Riley while here at the hospital and then soaking up every second with Presley while I am home that I have hardly had a chance to check email these past weeks. Many of you I’m sure can attest to that as your messages have gone unanswered. Please do not think that I don’t appreciate everything that comes my way and know that when I do get a moment to read it’s usually when I need those reassuring words the most. Problem is I usually have just enough time to read it, compose my emotions and then poof…Rileys up and email time is over. It’s a miracle I’ve been able to update the blog even as seldom as I have lately. I also hadn’t checked the donations page in…well…quite honestly I don’t remember the last time and holy moly do I feel like an ass. Really…I’m an ass. We are over the original goal that I had set and I don’t even know when that happened! And to say I am behind on sending out my “thank yous” is an understatement, but you better bet I WILL get to it…one of these days. 😉 It knocked the wind out of me a bit to see that through the donations of individuals ranging from 5 to 500 dollars we were able to rally together what I had thought in the beginning was about what we’d need to help us through this. Looking back now almost 3 months later the fact that I thought $5,000 was all we would need is kind of adorable…comical even. I remember sitting down and setting up that page and am seriously giggling to myself now at how I really hadn’t realized what we were in for. At the time I thought that I would be able to “work from hospital” you know because I’ve always worked from home. What a moron I was. Work from hospital? Seriously? Like it’s even remotely possible to concentrate with your newborn babys monitors sounding off every 15 minutes not to mention the constant cries of the other children whom I share walls with ringing in my ears; but yeah designing a fresh marketing campaign for our new plumbing showroom from scratch is totally doable. Stupid girl. I think in the beginning it was probably a defense mechanism…like I wasn’t allowing myself to really realize how sick my baby was…I just thought I’d carry on normally with my day to day just in a different setting. It is so surreal to look back on those days now, days that seem so long ago and see just how wrong I was about thinking I could continue to “do it all.” These days my “do it all” is different. It has to be. We have no other choice. My days are 200% focused on Riley and Presley…at the hospital taking care of Riley is constant, there is no room for my focus to be anywhere but on her and when I go home it is the same story with Presley…I have 2 days to fill her up with a whole weeks worth of Mama love and so “not now Presley, Mommys busy” is just not something she will hear. The bills, the debt, the financial “ruh-roh” will be waiting for me when I get home, right now the focus is solely on getting us home.
Now that we are on the right track of cell counts going up and Riley trotting along down the path they’ve paved the word “discharge” is starting to get thrown around. Yeah thats right…turns out this little possum may be busting out of these walls soon. Now “soon” is a loose term in a hospital and its true definition as it pertains to us walking out the door is still out for discussion. But the word “weeks” has also been used…now while most of you probably just got really over the moon excited and are like “OH EM GEE….yay they could be home in a matter of weeks?!?!?!!” my reaction is a little more reserved and by reserved I mean scared and by scared I mean well…I’m literally feeling a bit sick to my stomach and chanting “oh shit oh shit oh shit oh shit” in my head. Seriously…the inner workings of my mind right now are a gnarly mess…be glad y’all aren’t all up in there. Do I want to get out of here?…hell yes. But is it absolutley terrifying?…YES. So much more than I thought it would be. I didn’t feel excited when they told me, I immediately morphed into “nerve-woman” a rare breed of freak reserved I believe for Moms who have been holding it together for a little longer than is probably healthy. Obviously I cannot wait to have my family back in one place but understand that the last time this little girl was in my house we walked out that door unsure if we’d ever bring her back. That’s just a lot to handle and I think I’ve always known my melt down would come when this is all over. I am so happy that there is an end in sight especially because it is looking like a happy ending but with that is coming the calm…the exhale, the OMG that happened to us. Phew…heavy.
Yesterday the doctors informed me that now looking back and reviewing her symptoms and how quickly she has bounced back post transplant they strongly believe that her SCID was or was becoming Ommens Syndrome. Ommens is a particularly nasty form of SCID…discovered in 1965 only about 68 cases have even been recorded and not many have ended well. Babies with this syndrome do not make it past 2-4 months if untreated. Having a team of doctors tell you how well your baby is doing and that she is going to be okay then following that up with…”it really is amazing, this is why we are so excited about newborn screen because we have never seen an Ommens case before fully developed and by that time it is always too late” is well…the hardest most wonderful words to hear. It seriously sent chills radiating through my bones…I always knew that Riley’s condition was one that was life-threatening but to know that she fell into that category, into a category of certain mortality is very…I don’t know…really, I don’t know what word I’m looking for but I’m sure you guys don’t either. Looking down at her as they were telling me this knowing that if it wasn’t for a simple test she wouldn’t be here, that not only would she not be here but her life would have been so uncomfortable so miserable so sad…I’m just amazed. Riley is a gift. Almost all of her days have been spent confined within hospital walls yet her life and the light it has created remains uncontained.
The next few weeks will be spent shrouding her with positive energy, eagerly waiting each day for test results. Counts, T Cells, B Cells, NK Cells, function, function, function. Along with that we will be hurriedly preparing the house for the arrival of Miss Riley and all the complications she brings through the door. Presley will have to be removed from pre-school and completly isolated for at least 1 week prior to bringing Riley home and then from there we become bubble family. It is a damn good thing Presley loves Riley so much because she is all she is going to get to play with for months. 😉 We have so much to do to prepare, so much to clean, so much to get…oh yeah…oh gosh…I have to get stuff? Whoops…omg I need diapers, bottles, formula…oh man I need to make a list…shit it’s like having a baby ALL OVER AGAIN!!!!! Last time I took her home she was a breastfed baby in cloth diapers…this whole no immune system thing tosses boobs and cotton right our the window…oh how things have changed. Well…I’m going to leave you now that I’ve had that epiphany and start making myself a list. Keep on keepin’ on with the positivity for Riley…she is amazing, her support system is amazing. Thank you all…and to those who I owe thank you notes, they’re coming I promise…I’m not short on gratitude just on time 😉 xoxo