Flies in the vaseline, we are.

Sometimes it blows my mind...keep getting stuck here all the time.

Yes, that's right.  I've gotten to the point where I need to steal Stone Temple Pilots lyrics and use them to write my crappy blog.  It's not going to get better any time soon.  We're going to be doing this NICU thing for a while.

The spinal stenosis surgery went well.  She was clearly in pain before the surgery, and she actually cried for three days straight before she had it.  This is what she was doing before: curling herself up, almost into a C. 

I'm just pretending to be a croissant.

After the surgery, she came back on vapotherm and managed to keep herself extubated.  And for a while, she seemed to be doing pretty OK.  Breathing a little slower, a little less labored.  Keeping her oxygen levels up with just a little bit of help.  Awake and pleasant.

le neurosurgery aftermath.

That surgery was April 8th.  And then on April 15th, she had surgery again, this time to get a g-tube.  Another surgery where she was able to eek by without being intubated.  It was all very encouraging.

What?  Were you excited about my progress?
Idiots.

So naturally, the doctors decided to lower her vapotherm since she was doing so well. And then as per usual, she went from doing pretty OK to pretty dismal.  Back up on the vapotherm.

And then the thought was maybe that she hated the vapotherm and would do better on a low-flow nasal cannula.  And that was going pretty well for 4 hours, until she had a good loud cry over a bath and then couldn't catch her breath and was turning purple.  Back to the vapotherm.

Claw my own face off?  Yes.  Yes I do.

The next big thing for Ainsley is a tracheostomy.  A tracheostomy.  So that she can be on the ventilator full-time without being intubated.  A ventilator.  All the time.  She can come home on a ventilator if she has a trach.  It sounds extreme, though, doesn't it?

This baby works like she's running a race...just to breathe.  She lays in bed and forms beads of sweat on her forehead because she has to exert herself...just to breathe.   She breathes fast, sometimes 120 or 130 breaths a minute, and if you don't understand what that means then you should take 2 breaths a second for as long as you can stand it and then you will realize how Ainsley feels 24 hours a day.

She is almost 17 weeks old.  Or, 9 weeks adjusted.  She weighs 6 pounds 4 ounces and on a good day she gains 15-20 grams.  Sometimes she loses.  She's on formula that is fortified to help her gain weight.  She burns most of her calories by working to breathe.  She needs to grow new lung tissue, which means she needs to grow, and she can't grow because she uses all of her energy to breathe.

Basically, she's getting nowhere.


. 


The ventilator will do all of the work of breathing for her so that she can relax. She can grow. She can use her mouth to eat. She won't have a nasal cannula taped to her face, which means that she won't claw her own face out of frustration. She will develop. She can come home...eventually.

I know a few people who are ready to have her home.

It's up to us.  We can let her go a while and see if she improves.  Maybe she'll turn around...but my gut tells me she won't.  It's like this every month - good, then bad, then really bad, then better, then great, then HOLY SHIT SHE IS INTUBATED, then better, etcetera, ad nauseam.

Our consult with the surgeon will be ordered tomorrow.  The same surgeon who saw her the night she was born to remove her tongue from her cleft palate, and who did her PDA Ligation, and her emergency intubation, and her g-tube surgery.  He knows her history and we like him.  We're going to do it.  I can't sit here and let her work like this anymore. 

The thing about coming home on a vent is that she is going to be in the NICU for a long time.  A loooooong time.  She has to weigh 12 pounds minimum, and "they are usually much bigger" when they go home on a vent.  She's got to at least double her current weight before they can think about sending her home. 

This exhausting routine is going to go on and on and on and I don't know how we are going to do it but we will.  Because she's alive, and unfortunately we know from experience that being alive is what really matters the most.  As long as she's OK, we can do anything she needs us to do.

Because she's the boss.