Wednesday, November 9, 2011

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.

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.


One Year Ago:  Shocking new information about twin pregnancies!
Two Years Ago: Jennepper's must have baybee gifts for 2009
Three Years Ago:  Another reason to marry Target
Four Years Ago: Jabba's still in da hawse


*~*Lis*~* said...

Thank you so much for this information n Ainsley! I wonder about her all the time, your strength with this is amazing. But then again, what the heck else are you going to do?!

lparsons15 said...

WOW, thanks for all that info, I too have often wondering what exactly was going on with her..I hope she gets to come home with her family very soon.

Wiley said...

Thanks for the post and catching us up! I sometimes get stories confused in my head, so this really helps.

Our twins were born six days before yours with one who isn't living as well. Pretty different stories as ours are fraternal and our daughter was stillborn and actually died almost six weeks before they were born, bit still feel a connection.

The lung tissue definitely can grow. My kids have a cousin who is five now and was born at 24 and 0, and while he didn't have to have a trach, he did have a lot of scarring and had chronic lung disease. It's gotten better with each year and so far this year, he's not even nebulizing!

Since y'all are talking about home sometime, in guessing it's a conventional vent rather than oscillating? And what are her oxygen demands on it?

Rachael said...


"Critical illness is not an excuse to be unfabulous."

Is one of the best things I have ever read.

I am glad she has improved, hopefully she'll just keep getting stronger!

areyoukiddingme said...

Wow. That's a lot for a little girl to handle - good thing she's tough! (And you. And Mark.) Here's to healthy lungs! Eventually!

(And she'll never be able to smoke as her teenage rebellion - the internet will be watching!)

clearness said...

I may have mentioned this to you before but just in case I didn't there is this place near St Louis Missouri called Ranken Jordan. It's a rehabilitation hospital for children and they are amazing and fabulous. I don't know if you could send a few e-mails to the therapists there and get new ideas or not but I just wanted to throw that out there just in case.

Hilary said...

I've followed your blog for a long time now and am a big fan of Ainsley's. So glad to hear she is doing well and I hope she can come home soon. Since you mentioned Evelyn in this post, I wonder if you wouldn't mind sharing if you ever found out what happened to her? Again, I hate to sound nosy or bring up something you don't want to talk about!!!

Carol said...

Yea! Glad to see your back writing a little bit more. Hope its therapuetic for you!

MNRN said...

What an incredible little girl you have. And babies are so reslient that I think someday she's going to be running around and you wouldn't know of her struggles. Take care of yourself!

Kahla said...

Ahmazing, all of you are. So much to have gone through for someone so little. I think you did a great job explaining, her respiratory therapist would be proud.

I was an identical twin and my sister died at 6 weeks. Sucks, even 35 years later. I can only imagine how hard this is, but Ainsley is strong, she has proven that. I think she gets it from her momma.

Totally love that she is a fashion diva with the Hello Kitty. A princess in the making.

Audrey said...

Omg! Thank you for this. I was the nosy chick that asked and I'm so glad I'm not alone in my general want to know of things that are non-my-bidnezz!!
You are amazing. And because of that Ainsly will be amazinger!! Thank you for allowing is to share this journey with you.

Milla said...

Lovely to get all of your posts, it's good to have you around. It's also wonderful to see more of Ainsley and hear about how she's doing. Love her, and the g-tube cover. Love the photo of her sitting up and glad to hear that she's getting on well.x ps. would also like lots of gratuitous detail on how Olivia is faring.

Nic said...

Thanks for the summary. I knew she was going through a lot, but wow, what a strong little girl!
She seems to be doing amazing, the one of her sitting up laughing is great!
Oh and Hello Kitty cover - too cute!
I hope she hurries up and grows some new lung tissue! Go Ainsley! lol!

Laura Diniwilk said...

I think about you guys, like, more than I should since you are an internet stranger. Thanks for this post - I knew bits and pieces of everything but this was helpful. Love the Hello Kitty :) Take care of yourself and your sweet girls!

CAM said...

I am so freaking happy you are back, regularly, even if it is just for this are a breath of fresh air and the only blog I read that makes either laugh or cry every single time. Ainsley is awesome...she has some hard core stuff to deal with and she still smiles and gets on with it, God love her.

heather said...

You really are an amazing person, and Ainsley really won the lottery to have you as her mom! (And, I'm sure you rightly feel the same about her).

My Vegas said...

long time lurker here--

just wanted to say that I am in am complete awe of your strength. You are an amazing person.

Nicole said...

So good to see you blogging again so frequently! Missed your blogs...and Ainsley is such an adorable chunky monkey! In my mind, thats the best kind of baby! (mine are chunky monkeys too) you said, great for Nom Noming!

Monica said...

Thank you for sharing all you did about Ainsley. I started checking your blog back when you were just pregnant with the girls. I keep you and your family in my prayers.
She is such a little cutie....especially the picture you posted a few blogs ago with the little bow in her hair...LOVE IT!! Take care of yourself.

Brooke said...

I had a stillborn baby girl just a few weeks before you lost Evelyn and had Ainsley, and I've been rooting for Ainsley ever since. I know it must feel completely overwhelming at times, but I hope you feel the strength of so many shared connection and random weirdos on the internet who wish the best for you and your family.

alison said...

I just love her, and you. And your cute little family. :) She's never far from my thoughts. You are such an amazing mom, I don't know how you do it all.

HereWeGoAJen said...

I knew a lot of this but it was really great to have it all written out so expertly. :) Love you guys.

Laurel said...

Ainsley is amazing and strong, like her parents, but I also love that she seems to be smiling in every one of your photos. Thank you for explaining her situation so thoroughly. You seem to have a really balanced and positive approach. As always, wishing her ever improving health. That Hello Kitty cover is awesome.

Crazy Sister said...

She has the cutest belly button, too!

Mrs. B. said...

You did better describing BPD than I was ever able to. She's beautiful, and by the time she's 10 this whole adventure should be nothing more than an excellent excuse to ground her for anything and everything.

Michele said...

I had to share this store's link with you: cute, hand-sewn g-tube covers - on sale! Makes me want to get a g-tube. :)

Kayla said...

She's so precious =)