Sunday, April 24, 2011

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.


82 comments:

MFA Mama said...

Oh, Jen. What a sucktastic choice to have to make, but all you can really do is go with your gut. In my experience (with my own medically interesting, but boring compared to Ainsley kids) it's usually right.

MNgal said...

Jen....I am so sorry that you have to continue running this unending marathon. I just want her to be home with you! But it sounds like you are doing all of the right things for her. And of course we know that you love her beyond words. Take care of yourself. I think of you and your family often!

HereWeGoAJen said...

Sucks. Really really sucks.

Ainsley doesn't suck though, obviously, she's awesome. So are you.

Sending love through the internet.

Shelby said...

Jen- I'm so sorry that your family and sweet sweet little Ainsley have to go through this. My heart breaks for your beautiful baby girl. No one, especially someone as tiny and as innocent as a baby should have to endure this crap. Many people are thinking you and praying for your family. You are her Mama and will always make the best decision for her. :) Happy Easter!
Ps..... she is beautiful!

rebecca said...

Oh Jen, I'm so sorry...that really is exhausting just reading it all, I can't imagine living it with Ainsley every single day. Hoping the surgeon helps you to feel at peace about your decision and that this brings her the stability she needs to ultimately come home and be with her family. Thinking of you all, holding hope, and sending love ((hugs))

Julia said...

Ainsley is amazing. She's been through more than most kids go through in a lifetime! You are going to become a vent expert, and Ainsley will grow, develop well, and eventually close that trach. Wait until she starts talking--she'll give the world a piece of her mind,that one. Love that beautiful and expressive face!
Good luck ... hugs to you and your family.

Anna Marie said...

Oh jen, I don't know what to say other than this - you are doing a fabulous job as her mother. I know you are exhausted, I know you are frustrated, I wish there were something I could do other than send good vibes and thoughts your way. Hugs.

areyoukiddingme said...

I'm so sorry you have to make these decisions. But the boss says she needs some time off from the whole breathing effort thing, so you'd better just do what you gotta do. Maybe she'll change her mind - bosses are like that, you know.

Much luck to you, Mark, and your beautiful girls.

JM said...

What a brave family you four are! One very amazing day she'll come home and everything will be as it should be.

Sending out some Easter love!

Stace said...

You are just so strong. Ainsley continues to inspire me! Here's to hoping you get out of the NICU soon and that this is all a distant memory.

The Zoo said...

Thinking of you. Sarah

Kathleen said...

My heart just breaks for you and all you are going through. Stay strong.

Amelia said...

She's beautiful.

Kristinmo said...

Jen- I am so sorry. If anyone deserves a break, it's you, Mark and sweet little Ainsley.

Michelle said...

De-lurking here! Just wanted to let you know I'm praying for healing for your sweet baby. I can't imagine what your family is going through. She is really precious!

Laurel said...

What everyone else said. I am so sorry your beautiful little baby is having to go through so much, so early. My heart breaks for her as well as you and the rest of your family. My prayers for her healing and comfort. And big hugs to you from me, a total internet stranger.

Cindy said...

My gosh. I'm just so sorry that she's been struggling so long. As much I hate to hear she'll have to get a trach and vent...it's totally the best solution for her to rest and heal, and grow.

Please know that I think about your family EVERY day, and am praying for you and your sweeties. <3

Robin said...

I'm praying for your sweet baby and your entire family to keep strength to get through this. You're doing great, Mama, and she is so lucky to have you.

She is beautiful.

nyanarose said...

I've lurked for a while and I've commented a few times, and I'm just in awe of you. I've been in for 218 days and we're bringing our babygirl home on Friday. We've had a loooonnnnng road but through it all, we've only had a g-tube surgery and a whole lot of hurry up and grow.

You don't know me and you don't need platitudes but you just do it because you have to. We just did our care-by-parent weekend proving we can do it all ourselves, and it's amazing how comfortable you get with all of their care. We're bringing a Bipap machine (non invasive ventilation) home with us and litres and litres of O2. People ask me how we do it and I had it easy. And I don't have another one at home. AND I don't go to work every day. You're amazing. And you can do this.

Oh, and Suck-A-Duck might possibly be the best invention ever. Nyana loves hers.

clearness said...

Her cheeks alone look like they weigh 6 pounds each. I just want to gobble her cheeks and smooch on them. Lots of prayers for your little angel. And you and your family.

Vaso said...

My thoughts are with you and your beautiful daughter! Do what your gut tells you to do. Mother's instinct is always right... You're doing great and she'll eventually make it home. This whole thing will be behind you...

mrsyak said...

So sorry. Terrible to be faced with such a choice. Prayers indeed.

Garbage Guru's Wife said...

I've been following your blog last summer and I want to tell you that I'm sure it must be so hard, but you are doing an amazing job being there for your strong little girl.

babycakesandwafflefries said...

I can't finish this post without crying. And I've tried three times now. Know that you are in my thoughts, prayers every single day. She is the boss, and you are absolutely amazing. Your strength and levelheadedness just inspire me and Ainsley continues to be one of my heroes.

Love to you all. Honestly, I mean it.

Grade A said...

Ainsley is one tough cookie–but look at her mama–no surprises there!!

afeeleys said...

I'm so sorry. I hope that the trach gets her where she needs to be.

terralhill said...

I can't wait for the day when you do a blog about Ainsley being home! We think of you guys often and I try to keep up with her progress on FB and through your blog!

krlr said...

I wish I could do something. Leaving uplifting encouraging comments just seems weak. All I got though - Grow Baby Grow!

Emily Erin said...

Just like everyone else, confirming that this.just.sucks.(lots).

I am thinking of your strong little girl and hoping that the vent will allow her to grow as she needs too. Sending love and light in what can be a very dark place.

Sue said...

Just reading about it is exhausting. I'm so sorry she won't be coming home any time soon, but I'm glad she's made it through her surgeries and I hope the vent helps. She looks lovely.

Miriam said...

Your strength is amazing. So is Ainsley's. Although I rarely comment, I always hope for the best for your family. Sending hugs and all good things your way.

amazingk8 said...

It sounds like absolutely the best decision. She's so beautiful - you are all in my thoughts. I hope the surgery goes smoothly and she growsgrowsgrows!

amazingk8 said...

i mean it. i hope she has the surgery and asap everyone is like DAMN - all you gotta do is look at that baby funny and she gains a few ounces. that is what i will spend my time praying for.

KatieR said...

Jen, You are an amazing mom and I know you will make the best decision for Ainsley. She such an amazing fighter with the best expressions! I am just in awe of your strength. Could luck with your consult. We're keeping you and your beautiful family in our prayers.

jaysaint said...

I'm sure Ainsley will be well served by your decisions, as she has been all along. Lord knows the baby could use a break. You too.

Roadblocks and Roller Coasters said...

I am thinking of and praying for Ainsley and your entire family! Ainsley is one tough cookie like her momma and I pray she's able to come home soon.

Jennjilla said...

That is one cute boss!

Praying for y'all! Jenn

JoyAndSorrow said...

She is just so precious, and I am truly sorry she has had to go through so much. You all have.
~Lindsay

Erin said...

I tried the breathing thing, just for kicks, and your littel girl is tougher than I oculd imagine being in twelve lifetimes.

You know when she smiles? Think of that.

--Erin

B's Mom said...

I hope one day you are telling Ainsley's kids what a fighter their mother was when she was a baby. She's going to have one hell of a story to tell. Keep us posted.

Jamie said...

You're all in my prayers! God Bless precious Ainsley and your whole family!

thirtiesgirl said...

Also sending my love. You (family) and Ainsley are soo strong. Hoping she is soon able to come home.

Melanie said...

I follow your blog religiously and my heart continues to go out to you.

On a different note, I follow another mommy blog about baby lung stuff. May be similar, may be totally different...but...check it out.

Lil Bennett has lung stuff and maybe new mommies can support each other...

http://our-journey-to-parenthood.blogspot.com/


Hugs!!!!
Melanie

Brooke said...

Oh, Jen, I'm so sorry that things have been so difficult. It's just not fair. Do what you think is best for Ainsley, because you do know best. I'm thinking of you!

mizbiz said...

jen - i've followed your blog for awhile now and i know it doesnt seem like enough, but i'm constantly thinking of you and your adorable family. i will keep praying for some good news for you and little ainsley. she deserves a break. you are such a fighter - we know where ainsley gets it from. hang in there. love over the internet!!

Megan682 said...

Hi Jen,

You don't know me, but my sister is a friend of one of your friends and I've been following your blog for a little while now...mostly in tears!

I used to work as an Early Interventionist, working with children with special needs and those considered at risk. I worked with a little girl who was in the NICU for the first 11 months of her life and she came home on a vent at 11 months. She had never been outside, never seen the sun, nothing. But, she did great. Once she was home and she had therapists working with her every day, she just excelled. She wasn't on the vent long and she eventually was off it altogether and did so well!

I don't know if it's much...but I just wanted to provide you with a little encouragement as you guys make this tough decision!

PJ said...

I am so looking forward to the day when you can bring her home. What a happy time that will be!

I am also so sorry that it's been such a rough road. I can't even begin to imagine.

She's such a fighter though.

My heart goes out to you guys.

Jaci said...

She looks so rolly polly adorable in her pictures.

It sounds like you're making the right choice to put her on the vent. 17 weeks...wow, Jen. Just wow.

I wish I lived near you and could help in some tangible way.

raisingmiles said...

I can't believe she's only 6 pounds. From the pictures, you would think her cheeks weigh 6 lbs! Big hugs for you guys and here's hoping for a good consult.
xoxoxo

Courtney said...

Saying prayers for Ainsley and for all of you as you keep on keepin' on.

VuSquared said...

*hugz*

Wendy said...

Thinking good, easy breathing, easy surgery, grow big and huge and strong thoughts for you and precious Ainsley.

Amy said...

What an adorable face that girl has. Very expressive :) I think she looks a lot like Olivia!

I'm so glad her stenosis surgery went well. I don't even know you, and yet I worry about your family...odd how the internet works.

A trach sounds so awful, but in reality once it's in, it's so much LESS awful than the tube, and so nice to see a baby's face instead of cannula.

The very best possible outcome is what I wish for you and your family.

Cassie said...

Jenn I am so sorry that you have been on such a yo-yo course with your new little one. I really, truly hope that things get better without backsliding. I've seen a lot of patients in the clinic I work who used to have trachs and don't any more and are doing great. I hope your little one falls into that group. Thoughts are with you and your family! She is adorable!

DonnaZ said...

YOU...and SHE....AMAZE ME. Nothing more to say.

Nic said...

OMG, this sucks. I am sorry all that you are going through.
Thinking of you guys.

Courtney said...

You are so strong - just like your itty bitty girl!

My sister went through something similar, but different, when her baby was a year old. My niece acquired a fatal breathing problem and was burning every calorie she took in (and then some) just to breathe. She did not get a trach. She was absolutely unable to grow and is tiny to this day at 7 years old (cute as can be though). If they would have had the option to trach her, I think they would have done it. It broke their hearts to watch her work so hard just to breathe - especially when it became clear that she was not growing at all. I mention this because I know that they wish they had had the option you have.

As a side-note, my niece thrives today and only suffers from minor asthma. Young babies can get through anything - and Ainsley will do the same!

You are making the right decision for your child - mothers always do!

MissMVK said...

She is so freaking cute in the video. It is heartbreaking to watch her work so hard to breathe and you described it perfectly. You will make the right decision for Ainsley because you are making it from a place of deep love. Thinking of you and your adorable baby girl.

Pinky said...

I hope they find what works best for her. I see her pictures and I feel her pain, I am almost in tears for both her and you. I know it's not easy seeing your baby like this and everything she is having to go through, but she is a fighter.

WannabeMommy said...

I am so in awe of your strength... you are my idol. I'm pregnant with my first and can't even fathom dealing with what you are going thru. God bless you and your family and especially little Ainsley!

Dora said...

Jen, I've been reading, but just haven't known what to say. I'm so terribly sorry this is so hard for Ainsley, and so hard for all of you. She's a beautiful girl, and you're doing amazingly through this never ending crisis.

Chris and Annalisa said...

Oh my gosh, Jen. I am so so sorry. I can't even imagine how frustrating this must be, to feel helpless. We are praying for Ainsley!

Andrea said...

Jen, you are an amazing mom and woman. I know holding your shit together through this every day takes work. It totally sucks to making these decisions.
Hoping and praying for perfect surgeries and lots of steady improvement for little Ainsley. Sending hugs to your family!

Dre said...

Sheesh. The suck just keeps on coming, huh? Good thing you and Ainsley are both rock stars and can get through this spectacularly! Still thinking of you all...

Janis Maz said...

You can do it and so can she...strong people you are. She's gonna be a good grower, just needs the chance.

Milla said...

You are all amazing and strong and beautiful and I am thinking my best thoughts and sending all the love that I can. You don't need to know how you're going to get through it, you're already doing it. You're amazing. Oh and I love your crappy blog.

alison said...

You're never far from my thoughts, and always in my prayers. She is going to grow like a rockstar very soon. Maybe we can make some onesies with panels for weights to help beef her up? ;) You're such a good mom. Keep swimming, you've got this.

Mariesa said...

I'm sorry you and your family are going through this. I'm sending good thoughts to all of you.

Clair said...

Oh Jen,
I too am typing this with tears running down my face. I wish there was something I could do for you, some way we could provide some relief for you.

Your daughter is beautiful and you are an awesome mama. I don't know your personal beliefs, but I think Heavenly Father knew exactly what he was doing when he sent her to your family.

Thank you for taking the time to update us.

Much love and prayers
Clair

Could I send you a gift card to a local restaurant so you can at least get a break from cooking / figuring out dinner one night? Email me at 5jrdns at gmail dot com if you would like.

Momma La La RN said...

I have been following your blog for a little while, but never posted..till now...
I am sooo sorry that your all going through this trial... I am sooo hoping that with the Trach it allows her to gain weight like crazy... and then getting up to 12lbs won't seem like such a large hill to climb!
Your all in my thoughts...

Greta said...

Plain and simple, you are a rockstar.

I really hope things just get better and STAY better!!!

Traci said...

Jen my heart literally aches for you and your family. You all are amazing and doing everything you can for your precious girl. I think of you constantly!

EB said...

Your strength amazes me.

lori said...

i am sad to read how hard things are for ainsley and for you guys as you support her and make these difficult decisions. in the end, though, i am just thrilled to be reading about ainsley's progress no matter what shape it takes. i hope you all get time to decompress and take care of yourselves...i am sure that your needs are way at the bottom of the list 99.9% of the time...just hope that there's some kind of reprieve for that .1%.

Suzy, Not a Fertile Myrtle said...

Thinking of you and your sweet girl today.

MaryBeth said...

I am sorry that she has had such a tough road- that just stinks. I know a trach is very very scary (even for the nurses). But the wonderful news is that when your sweet baby girl decides that breathing is such a big deal anymore- you can get rid of the trach. It doesn't have to be a lifelong thing (although, again, I understand even if its for 1 week it is still sooo scary!). My thoughts and prayers are with you! I can't wait to hear the update when you say that she is ready to go home! :)

PhaseThreeOfLife said...

I cannot imagine how difficult this is for you. I cannot imagine how hard it is on HER. Thinking about you and your and hoping this next procedure really helps turn things around.

Stacey said...

Thank you for the cute, cute, cute video! Miss Ainsley is definitely a fighter.

alicia said...

That girl? She has amazing parents. She is so beautiful despite the ugly of her story so far.

Can you imagine what she's going to do with her life? It's likely to astound us all.
Good luck to you, your husband & your gorgeous girls. We're here, rooting you on from inside The Internets.

Katherine said...

Jen,
I can't imagine what you are going through (your words do paint quite the picture, but I bet it's a million times harder).
You are amazing. Your husband is amazing. Olivia is amazing. Ainsley is a miracle (and amazing). And Evelyn an amazing little angel.

Bree said...

Hugs to you, Ms. Ainsley, and your whole family. Just thought I would leave a link to a blog written by a tracheostomy mom: http://trachties.blogspot.com/. I hope some of her info might be useful to you. Stay strong, mama!

Fran said...

Jen,
I know you don't know me, but I recently stumbled upon your blog. Just wanted to let you know that I am sending up prayers for you and your precious baby girl.
~Fran