People ask this question a lot.
I post here about Ainsley a bit and I put a lot of pictures on facebook of this fat, smiling (with four teeth!!!!), adorable, happy baby. And she looks pretty great.
And she is pretty great. Usually. Sometimes. When things are good with Ainsley, they are great. But when things are bad with Ainsley, they can be downright terrifying.
It feels like there is no in between. She will be fantastic for two weeks and we all start to relax a bit and then HOT DAMN. Something goes wrong and it's days of stress and no sleep and wondering if next time will be the time that Ainsley keeps getting better instead of this better, worse, better, worse thing that has just repeated these thirteen months. And hoping that it isn't the time she keeps getting worse, and worse, and worse.
I don't know why people ask about Ainsley going home in a way that suggests that The Evil Doctors are perfectly capable of letting her leave but choose to make her stay. I am 100% confident that everyone who cares for Ainsley would love to evict her old hag ass. They are probably dreaming of they day when they can "let" her go home. She's the oldest kid in the NICU now and plus I think maybe my jokes are getting old.
(Nah. Impossible. Everyone knows I'm nothing but hilarious.)
We don't care if she comes home soon. We want her to stay alive. And if you think that's dramatic or that I'm exaggerating, then you really should spend a few weeks with us at the hospital. If you've never seen a blue baby in real life, Ainsley can make that happen for you!
I think people don't understand the reality of Ainsley's situation. If she loses her airway...she could die. If we can't control her pulmonary hypertension she could have damage to her heart and...she could die.
When I give Ainsley updates in real life it is just awkward. I end a sentence and am usually met with horrified looks and painful silence followed by a positive saying (I'll pray for her! I hope she is better soon!) followed by a swift change in topic. People don't know what to say. It's just a sucky situation that we are making the best of, and there really isn't much else to say. I don't mention it to make people feel bad for saying a particular thing or having a certain reaction. I mention it because it just IS. Ya know? I haven't known a child this sick in my entire life so I'm sure I wouldn't know what to say either.
If it wasn't for the nurses and respiratory therapists and doctors who joke with us and understand and just generally act fabulous, I think we would go insane. Although, I did get a little push back the other day when I said that Ainsley looked like Hannibal Lecter in her stander. But she does! You know the part where they wheel him out strapped to a board??
(And she looks like Rainbow Brite in her therapeutic shoes (MOON BOOTS) and socks.)
(I can say that because I am her mom. I will donkey punch you if you make fun of her adorable stander and moon boots.)
(I just refreshed myself on the definition of Donkey Punch. I will just regular punch you. Donkey punching is too gross.)
The only person holding Ainsley back is Ainsley. She is not ready to come home. As soon as she is, there will be a team of medical professionals gladly helping her get the hell out of the NICU. Until then, we are going to trust the opinion of this fabulous group of people who have managed to keep Ainsley alive.
Seriously, though...the Hannibal Lecter thing. It is an adorable Hannibal Lecter!