Tuesday, January 31, 2012

When will they let her come home?

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!

28 comments:

Wiley said...

LOVE seeing her in the stander!

And definitely do not want her coming home prematurely, as I said myself a couple times, the neonatal staff at my house just isn't up to snuff.

Emily said...

Aw. I can't even imagine how I would cope. You are SO FREAKING STRONG. A is so strong! I hope she gets well enough that they can boot her cute butt out of there soon.

P.S. I have seen a blue baby... C choked and turned blue when she was 2 days old because she had too much mucous in her chest... Stared the life out of me. Will never forget that image. I find it horrible that you have to deal with that on a regular basis. :(

Laura said...

She is beautiful and I hope it is very soon that you can plan for her to come home. During our short stay (seemed like so long at the time - 3 months) in the NICU, there was a family who continually referred to the unit as "baby jail". They, like many people who speak with you, did not understand the severity of their child's situation. The nurses and doctor's aren't trying to limit your access to your child, they are doing everything in their power to ensure your child is healthy and able to live independently of this support. Keep doing what you are doing, laugh when you can, and we'll all pray that Ainsley comes home soon and never again sees the inside of a hospital!

Rebecca said...

And speaking of Hanibal Lector ......a person could live for at least a week on her cheeks.

Katie said...

Cute as a freaken button that Ainsley!

Elizabeth said...

So cute! My son has the same stander and my husband calls it his Hannibal Lector chair- ha!

alison said...

I love her and her little purple bow. I think she's the most awesome one year old I know, and I'm thankful that she's right where she needs to be right now.

Leah said...

She is so cute, those cheeks are delicious looking. Love the stand!! Thank you for the update on your precious little one.

Beth said...

I want to kiss those cheeks!!

Jbizek said...

It never occurred to me that Ainsley is anywhere but were she should be. Your situation is sucky enough without folks questioning your doctors. And she IS adorable, thanks for the updates. I'm pulling for you all!

loumertes said...

Jen, I understand EVERYTHING you are saying. Everything! I get a lot of the same questions regarding Stella and "when" questions. When it's time for Ainsley to come home, I know you'll let us all know. Just like when Stella's done with the feeding tube, and she needs another surgery and when the doctors let her do something.
And there is always someone who knows somebody whose kid had something wrong with something and they're ok now. Love that.
Anyway- I get it totally and still don't know what to say either.

Brenda said...

What a cutie-bug!!! I know her NICU stay is long, but I understand what you are saying. You are just happy that she is HERE with you, even if she can't come home with you yet. One of my babes had to stay a measly 13 days in the NICU due to 'apnea of prematurity.' If he came home before the doctors gave him the OK, I would have never slept, keeping a constant vigil over his crib. Blue babies are NOT fun babies. I was shaken so badly just the ONE time I saw my son stop breathing.

I really wish that there was some magical wand I could wave and Ainsley could come home without any medical worries, but since I don't have one, I guess I'll just have to pray and send good thoughts your way.

PS, those cheeks: Nom,nom,nom!

Joelle said...

Donkey punch has to be one of the funniest terms ever...I regress to my 5th grade self and can't stop laughing and sound like a beached whale. thanks for the laugh today.

not laughing at your daughter, however. she is just amazing...when you put it in that perspective, i think we get it now. i can't imagine going through it, but I've been through so much crap in the past few years people say the same thing to me...and you just learn to cope and adapt i guess.

Mrs. Higrens said...

Yay for wonderful doctors and therapists and nurses!

Also, that cuteness should not be limited to the NICU!

(Dear Miss A, Please stop giving your mom and dad grey hairs for life or death reasons. Smooches, Internet-Auntie Blanch)

kadiera said...

It's such a hard thing for people to understand - even when they're ready to come home, they often end up going back rather quickly.

Though...I will admit to making bad jokes towards the end of our 9.5 months in the NICU with my son - we threatened to make shirts with a photo of him through the crib bars, and the words "Free Alex!" We figured we could put the money we made from them into something nice for the families on the unit. :)

Sarah said...

my gosh she is so cute in that thing.

blue babies are no fun, especially at home!

just me said...

She's adorable!!

(Does she eat fava beans?)

areyoukiddingme said...

She looks so happy in that thing...which does not look comfortable.

I can only imagine that you are looking forward to her coming home with both relief and dread. I hope her stay in the NICU is almost over, though.

And since she is the drama queen, I suspect she'll wait until #3 has just arrived to make her grand entrance to home-based living.

Hunter's Mom said...

My favorite after the shocked, not-sure-what-to-say face is the, 'Well, s/he's okay NOW, though, right?' Oh yes, let me reassure you, because that's what matters here. (And our stay was long, but not nearly as long as Miss Ainsley's.) While I'm glad that they're taking excellent care of her (and keeping your humor and wit sharp) I DO hope she decides to get better and better, instead of better and worse.

Sara / Aryanhwy said...

Totally adorable! Way cuter than Hannibal. :)

Sarah Johnson said...

I TOTALLY get that you're just telling it like it is. And YES, people do act strangely. I blogged about it not too long ago. http://www.thejohnsonsjournals.blogspot.com/2011/11/how-many-children-do-you-have.html

I also TOTALLY get not wanting to rush Ainsley getting home until SHE is ready. My daughter Marleigh desatted once clear down to 8. Yeah... single digit O2 sats does not equal a very pretty shade of blue.

Hang in there. Stay strong and keep your great sense of humor.

Praying for you family.

Amanda said...

Actually, the first thing I thought when I saw the picture was, "when did Doc Ock get cute?" Bionic Ainsley is just way too cute.

I can't imagine the "when will she be home" conversation after as long as she's been there. Our son was only in for 5 days and our families thought that was a long time. (insert eyeroll here)

Emily said...

Love your blog. I work, just work...so not sure the personal side, on a trach/vent floor at Cincinnati Children's Hospital, RN. I laugh out loud at some of your posts (I hate using LOL..so won't be using that but I truly laugh at you...well not AT you...but with you, maybe...not really with you because I know all this "stuff" isn't funny but laugh...kthanx). So...I hear the struggles of the families I care for, many there for as long as you, if not longer. Can't imagine. Keep your family in my thoughts...and thanks for the "laughs"

sarahw said...

I just love your sweet little baby girl sooo much!! I have an equally adorable fat baby boy who spent months (not as many months as Ainsley, but still alot) in the NICU turning blue several times a day. I know how it feels, and it's not a good thing. You are amazing to still be functioning, your girls are lucky to have you. My babe is home now and has been nice and pink since we've been home. Hoping for the same for your amazing sweet girl, just as soon as possible!!!

carrie said...

love the cheeks, love the smile, love those pudgy fingers....love that girl!

Crawford said...

What a beautiful girl. You are absolutely right she will come home when she is ready. I work in PICU in canada and we have had kiddies in there for over a year. I think the longest kiddo to stay up here was 4 years. But she went home when she was ready and safe to. Love the stander, wish we had something like that. You are doing an amazing job at being the mom she needs in her life!

Steph said...

AW! Love her little bow and her smile and the smile in her eyes. I could just smooch those cheeks! God bless you for being such a kick ass mommy. I know you wouldn't do anything differently. I am a mommy of 2 little boys. I couldn't possibly imagine leaving one at the hospital, especially for 13 months. Just being honest. But she's alive and I'm glad for that and I know you are too and she'll come home when she's good and ready. :o)

kouklaville said...

I read your blog last night..and today I have to say that your journey with Ainsley is just that,, a JOURNEY that you and your husband and your family do together..she is in the best place ever, even tho society wants tp put a bow on the story and wrap it up with "and then she got to go home and everything was happily ever after" It wont be if she isnt 100% ready.
People dont know how to do "Hard life" or grieving or anything uncomfortable... our society isnt geared to do it...

I am so happy you can see the beauty of her in this situation, this time in her life and love it..that is awesome..
Your life inspires me, your words and honesty set me free..