I wanted to try to squeeze in one final entry before Wednesday arrives and all of the craziness begins... What better time than during my 21st and final IVIG infusion?
It's hard to even know what to say to sum up the last eight months. It's true you never know you're own strength until strength becomes your only option. NAIT is a disorder that you can't expect other people to sympathize with, or even come close to understanding (with the exception of my fellow NAIT mommies of course!). You give up trying to explain it and just push your way through it. I managed to keep myself distracted from the what-ifs and focused on a really LONG and difficult semester, and I honestly think my schoolwork kept me from losing my mind from worry. With the help of a team of AMAZING doctors and nurses I have never felt like there was something we could be doing to help protect Maddox, but weren't. I am completely at peace with every decision we have made along the way, and now literally all there is to do is wait. I am sitting through my very last appointment, which is a pretty amazing feeling when you consider that the last eight months have been filled with at least two appointment per week, usually more. I miss my family, I miss my weekends, I miss normalcy, and I miss being able to see my toes!
I get a lot of comments like "well, you knew what you were getting into when you started all of this." This is completely true, I did know. But that doesn't make it any easier. I knew the risks, and I knew treatment would be miserable. I also knew that our little family wasn't complete with only Jax. I didn't know that doctors appointments would take over my life, or that I would be pricking my finger four times a day to watch my blood sugar as a result of massive doses of steroids. I never expected to feel so alone in all of this. I thought there would be a better support system around me... I never imagined my two year old could get so excited about the possibility of a brother, or that he would tell me he wanted to be a "baby doctor" when he grows up. He has been such a trooper tagging along to appointment after appointment, and has been nothing but excited about every one. Between Nolan's constant support and Jax's positivity and excitement I can't help but try to match their attitudes (although some days are better than others).
And now we wait. And count down the days (four now) until my surgery.
Dr. El-Sayed feels pretty confident that the baby will have high platelet counts, and it seems pretty likely that he will be developed enough to breath on his own. We spent the last week getting three platelet donors lined up to stagger their donations before and after the baby is born. Since the donations are only good for 48 hours it's important to have people lined up and ready, just in case Maddox should need a transfusion. And since my antibodies are so high in his body, it's pretty likely that he would chew through the first transfusion and need another, and possibly another after that. The best case scenario, what we have been working so hard towards, is that he will come out screaming, breathing, healthy, and with platelet counts above 100k. I would love to have him be healthy and able to room with Nolan and I. Because of the way Jax came into the world, I can't even imagine another scenario besides having to trek back and forth from the NICU, worried sick about my child, and feeling completely confused and helpless. This time around I'm armed with as much if not more information than the doctors. I know this disorder frontwards and backwards, and I refuse to feel as lost as I did that day again. Fear has turned to determination at this point.
Both hospitals (Stanford, who has been handling my treatment, and Sequoia where I will give birth) are coordinated with each other. All of the doctors, pediatricians, hematologists and the blood bank are up to speed and have copies of my chart, and the OR is scheduled. It's go time 8-)