Saturday, January 26, 2013

The Power of a Prego - and a Terrible Dose of Reality

My friend Tegan, who just so happens to be an AMAZING party planner, offered to throw a baby shower/brunch for me next weekend. I am so excited I can hardly stand it! I am so happy and lucky to have met such an awesome friend and developed such a cool relationship with her over the last few years. It doesn't hurt that our husbands grew up together either :-)

We decided to hold the brunch at Casa de Wilson, which means that my crazy pregnant self has spent the last month in full blown DIY mode. I finally finished reupholstering my hidious old Craigslist armchair. I painted the boys' bunk bed, not to mention the walls in their bedroom, and four new bookshelves. I finally got their toys under control with a new modular shelf turned on it's side (for the final touch I even upholstered a cushion for the top to make a bench). I pestered Nolan until he gave in and built my pallet bookshelves for our bedroom. It's been a busy few weeks... I was feeling like a pregnant Wonder Woman, until yesterday. It hit me. I feel like I can barely stand up now! I went shopping last night without the kiddos, and felt the need to get a shopping cart just for the sheer ability to lean on it while I walked waddled. I think I need a Rascal Scooter. I wish someone would inform my body that all of this hip spreading isn't necessary. I'm having a c-section for crying out loud, nothing is going to be passing through those things! Anyway, although I limped through three stores trying to find something as simple as wooden numbers (to finish up another DIY project) without success, I was rewarded with these beauties:

I have to remember I have nothing to complain about. In the grand scheme of things I really don't, and that's easy to forget sometimes. This week I was given a heartbreaking reminder of just how bad things could be. I am part of a worldwide support group for NAIT effected families. This group was started several years ago by one desperate and determined mama, searching for answers, and for anyone (just one person) out there who was suffering through what she was trying to navigate. Stephanie's son had been born to term with a bilateral brain hemmorahge (which means his brain bled in both hemospheres) due to a rare disorder, then almost completely unheard of... NAIT. Her first baby, after a normal pregnancy, was not expected to live. Chris is now 12 (or 13 now?) years old, and inspires us all every single day. The support group that Stephanie began so many years ago, now has hundreds and hundreds of members world wide. We are sisters bonded by something terrible and devistating, and we lean on each other every day in ways outsiders can't really understand (hard as they may try). We fight for awareness, for research, and for prenatal screening. We have accomplished more in the last few years than we really hoped possible. This is why when a tragedy effects one of us (the way it has this week), we all feel it. We all cry. We all pray. We all want to run to the side of the mama who is suffering and just be there for her.

This week a fellow NAIT mamma lost her baby at 20 weeks gestation. This was her fourth child, and her second NAIT effected pregnancy. She was receiving treatment just as I do every week. This mama had to labor and deliver her baby girl, knowing full well that she wasn't alive. NAIT had stollen her. The treatments had not worked. It is a fear that we all share, and yet we can't help her. Not really. As NAIT mamas we put all of our faith into a treatment plan that is ever changing, under researched,  and flat out isn't a cure. What choice do we have but to trust it? The truth is it only works about 70% of the time. By "works" I only mean that your baby has made it out unscathed, not that his/her platelet level is normal. There is still NICU time for most, involving platelet transfusions and/or IVIG. 

My point is, it could be so much worse. As I sit through my 31st infusion, butt numb and bored out of my mind, I am thankful that my baby and I have made it this far. These last four weeks cannot pass fast enough. They are the riskiest, and therefore the most nerve wracking. I am now on a course of Prednisone (steroids) that will take me through my final month, and will be one more barrier between my killer immune system and the defensless baby It's fighting.

I pray for my fellow NAIT mama, that she and her family would feel a peace and comfort that suprasses all understanding. My heart aches for her as she suffers through something we all hold our breathes and hope against. This is the reality of NAIT.

1 comment:

  1. Oh my goodness. Praying for that family right now. I can't even imagine.

    And you are so sweet, but I am a CRAZY party planner, not an amazing one. :) It was fun though, and I am so thankful I could be involved.

    Love you and can't wait to meet this new little one. Just weeks left!!!