What's wrong with Ainsley?

Someone, who apologized for being nosy, asked me to talk about what is actually wrong with Ainsley.  Which, LOLsies!  I talk about my vagina on the Internet and so talking about what is wrong with my kid is like singing the alphabet or reciting the Pledge of Allegiance.  Why yes!  It would be my pleasure to impress you with the magnitude of my attention whoring!

In short: Ainsley's lungs are fucked.    They should get better someday but right now?  Fucked.  So if you'd like to skip the rest of this post so that you can avoid reading information from a business-y person trying to talk medical-y, you can stop now. 

Ad nauseam: I will do my best to explain it all and make Ainsley's respiratory therapists proud.

Ainsley was an identical twin.  Unfortunately, her sister Evelyn was stillborn and Ainsley was a tiny 2 pounds 3 ounces when born at 32 weeks.  Ainsley was a constant worry for us for most of my pregnancy because she wasn't growing well at all. 

Ainsley's main issue is Bronchopulmonary Dysplasia (BPD).  It is caused by ongoing mechanical ventilation.  The breathing assistance she needed/needs to keep her alive is also causing inflammation and scarring in her lungs, which make it impossible to breathe on her own.  I read somewhere that BPD is a new disease that has developed from the technologies that keep these premature babies with underdeveloped lungs alive.  Not too along ago, Ainsley would have died.

So Ainsley's first five months of life were spent trying to get her off of mechanical ventilation.  She would be on vapotherm (which is like CPAP, kind of), she would get off that and do fine for a few days, then she would struggle and go back on vapotherm, and then she would really struggle and have to be intubated so that she could be on a ventilator. 

Miserable, much?

In May, the recommendation was a tracheostomy, so that she could be on the ventilator full-time without being intubated.  This was a big life changer for Ainsley!!!  With a tube constantly in her mouth, she was not able to move around or really develop normally.  The trach would allow her to use her hands and move around and not constantly gag on the tube in her throat. 

This trach is bananas.
b-a-n-a-n-a-s

Ainsley has pretty bad BPD, from what I gather.  The good thing about kids is that they grow new lung tissue until age 7 or 8...or something.  A while.  So Ainsley is getting the best nutrition possible through her g-tube so that she can grow enough new and healthy lung tissue to make up for all of the damaged lung tissue caused by the machine that she needs to keep her tiny ass alive.

See how fun this is?

Ainsley has a g-tube because, when she was smaller, she had to use all of her energy just to breathe.  Sucking on a bottle for a BPD baby can just be too much work, and Ainsley has the added issue of a cleft (soft) palate.  That made it even harder for her to try to suck on a bottle.  She is 10 (!!!!!) months old and has taken virtually nothing by mouth.  All of her food is run through the g-tube which goes directly to her stomach.  Another thing for her to overcome - an oral aversion!

Hello, kitty!
Found cute g-tube covers.
Critical illness is not an excuse to be unfabulous.

But really, when my kid can't breathe?  Eating by mouth falls kind of low on my List of Worries.  We will figure that out for her someday.  And, also, Ainsley's trach goes into her trachea.  Not her esophagus.  She could eat if she was so inclined.  However, she wants none of that  bullshit.

Ainsley also has Pulmonary Hypertension.  Which I don't understand as well as the BPD.  It's high blood pressure in her lungs, and it makes it harder for her lungs to move oxygen, and if it got out of control would cause damage to her heart because of the added work of pumping blood through her body.  That's the extent of my understanding.  (Not true: it's bad news.  I understand that, too.)  The hope is that, as her lungs get better, this will improve, too. 

Other weird things have happened - Ainsley had a stroke at some point, which was discovered by accident on an unrelated follow-up.  Right now, she seems to be developing normally and hopefully that will continue.  She had some seizures a while back, and she is on medication to keep it from happening again.  So there will be lots of neurology visits in her future. 

So, that's pretty much it.  That is "what's wrong" with Ainsley.  I'd like to say that I think the things that are right with Ainsley greatly outweigh the things that are wrong, and without sounding like a cheeseball: we are so happy every day that she is doing as well as she is after everything she has gone through.

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