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.

Wednesday, January 16, 2013

"Just another manic..." Wednesday?

Life with two kiddos is crazy, and I'm beginning to have minor anxiety attacks thinking about what a third will do to our delicate balance. Turns out in six weeks I will find out! We finally have a delivery date for baby #3- he or she will join us on February 28th, just six days before Jax's fifth birthday.
Yup, fifth. As in five years old. As in I just filled out his kindergarten registration forms. I'm sorry, what the what?! When did this happen??? I'm just not sure I'm alright with this.
On the other hand this means that he'll be at school all day, Maddox will start preschool as soon as he gets off of his lazy butt and potty trains, and then it will be just me and baby #3 for most of the day. Hmmm...
I digress. For now we're playing the waiting game. Well, Nolan is waiting, I'm running around like a crazy pregnant chicken with it's head cut off. Nesting? Not exactly. More like reupholstering and arm chair, painting rooms, building furniture and cornices. This is how an interior designer nests. Have I washed any clothes? Nope. Built the crib? No way. Bought a car seat? Negative. But don't worry, the important things will be done, I will have a freshly recovered armchair.
In the meantime, I have twelve infusions left (yay!), six non-stress tests, one ultrasound, two glucose tests, and four weeks of Prednison to consume. One meeting with neonatology and the bigwigs, a hospital tour, and a hospital bag to stock. Oh, and somewhere in there I'll need to donate my own platelets for the baby, in case he/she needs a transfusion (which is a good possibity) after birth. This is the most risky part of the pregnancy because there is less room for the baby (and more opportunity for "trauma") my body is amping up it's attack on the little one (diminishing it's platelets at a faster rate). So, bottom line, we hold our breath, hope my infusions are doing their job, and wait. Baby will be 36 weeks and four days old when it's born.

Friday, January 4, 2013

Baby Baby

Just a quick update-
Baby he/she is doing great! We had our fourth (or fifth? I'm losing count) ultrasound today to check the baby's brain for hemorrhages, and thankfully the scan was perfect :-)  I hold my breath at every ultrasound until they show me that the brain is clear of bleeds, and then I can enjoy looking at his or her cute little face :-) Actually, that's a lie. Really we just look at his/her elbows and hollow little eyes glaring at us.
Every ultrasound up until this point has gone like this: as soon as the wand touches my stomach baby turns, looks right at the camera, punches the wand, throws an arm over it's face, tucks it's chin to it's chest, and sinks back toward my spine. Literally we had NO profile pictures, no face pictures, nothing! At one scan it actually took them 20 minutes to confirm that our child had lips. No joke! Today however, we were able to catch the not so little bean off guard and snag a few cute pics before he/she started trying to hide. Let's face it, there's not much room left to disappear in!
Let me introduce baby #3, weighing in at about 3.5lbs, 29 weeks but measuring almost 31 weeks (surprise surprise):
That is Maddox's nose for sure!

What's your guess, boy or girl?