Last Halloween

Halloween is coming up and I can't help but think of last year, which just plain stunk. What you need to know in case you already didn't, is that at the time Ruby was hooked up to a million things. Now we had gotten pretty good at working around her leads, pulse ox, and O2, but her feeding tube situation was a mess. When Ruby had her first G/J tube placed the nurses in IR cut it down to a ridiculously short length. Because we needed a tension loop on the end of it we couldn't put Ruby in many styles of clothing. She also needed her G port to be vented 24/7. We did this by stringing up all sorts of inventions to suspend a vented syringe in the air. If you've never been in or had a child in this type of situation you probably have no idea what I'm talking about. But if you walked in on us back then, with no knowledge of NICU kids, you probably would have been shocked and appalled. How Ruby had to live was horrendous. We basically had a 3-6 foot radius to move her. Imagine that. Having your child tethered to a wall for nearly 5 months. We didn't even get to take her for a walk around the NICU until she was 3 months old. We did have that very brief stint at home for 3 days, but were right back in the NICU after that.

The Tubes

OK, now I'm off on a tangent...but anyways, because of all that "stuff" the only kind of outfit we could put Ruby in were front snap-up sleepers. I refused to let her wear hospital clothes after the first few weeks there because I couldn't stand the thought of her in them. So we had tons of sleepers! And even a few front snap onesies. We made it work, as best we could. But when Halloween began to near finding a costume became a nightmare.

Having her wear a Halloween costume became really important to me. Not only because I absolutely LOVE Halloween but because it was Ruby's first. I was also pretty convinced she was going to die during or after her open heart surgery, so in my mind I felt there was a good chance it was going to be her only Halloween. So because my family knew it was a big deal to me, my mom bought Ruby a really cute sleeper and modified another outfit that my cousin had gotten her. They both were sort of pumpkin themed so I thought that would be her costume. I remember asking my mom to get her a little pumpkin hat to complete the ensemble.

Cute, right?

The day before Halloween a nurse asked me what Ruby was going to be and I showed her the outfit. She said, "Doesn't she have a costume?" I said, "Oh, this was going to be her costume." I think she noticed how my face fell and she tried to catch herself, "Oh...well that's cute. I just meant a real costume." I wanted to cry, in fact I think I did. I wanted to yell at her, "You try to find a costume for a kid with this much shit hooked up to her!! You try to make something when you spend every waking hour stuck inside this prison!" I did not. I know she didn't mean any harm, I just think that some of the staff who work in environments like that forget what kind of situation their patients' families are dealing with. They get so used to it and I don't know if they're thinking about what it feels like to be going through that. I mean, there was a big chance my child was going to die in a couple of weeks...I was feeling pretty vulnerable.

My mom came in later to see Ruby, like she did pretty much every day since she was born. She immediately noticed something was off with me, like all good mothers do, and asked what was wrong. I tried to play it off as nothing but told her I was a little bummed Ruby didn't have a "real" costume. Well, that woman searched far and wide for something little Ruby could wear. She called me at the hospital that night and said she'd found something that we could make work. Ruby was going to be a squirrel :) On Halloween I dressed her in one of the cute outfits my family had gotten for her, but for about an hour she did become a little squirrel. She was hands down the most perfect little squirrel you had ever seen. I got my photo op and Ruby celebrated her first Halloween in style...tubes and all.

:)

Sleepy Squirrel

I didn't know where this post was leading but I can see now it's to a big shout-out to my mom. How is it that mothers know instantly when something is wrong and never fail to make it better? I just love her so much. Thanks Ma.

What is Ruby going to be this Halloween? Well you probably have an idea if you're on FB, but rest assured pics will come :)

GRRRR!