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Wednesday, November 19, 2008

It's a HUGE day at the McCarthys

Sorry for the long-time now post.

Kaitlyn ended up giving her cold to both Brian and I, but I got it bad, still have it a week later. My voice is shot and I can hardly sleep with all the pghlem. Kaitlyn got so bad I took her to the doctor last Friday and she had an ear infection in one ear as well as a sinus infection. SO back on anti-biotics she went.

She was a bit of a night-mare all weekend, whiny, not my sweet Kaitlyn, I kept forgetting that she was probably just not feeling well, so it made things sort of tough. By monday, however, she started feeling a lot better, but then the runs started. This antibiotic she's on makes her poo green and explosive diarrhea (poor baby).

Today, while Kaitlyn was at the park with our nanny, she started complaining that her tubey-tube hurt. She had said it to me too the day before. I think the anti-biotcs are messing with her entire intestinal/stomach area. She also suddenly broke out in a horrible yeast/diaper rash. It came quickly, even on her thighs, poor baby.

I made the decision on the spot to take out her tube. It was time to replace it again. It just didn't make sense to me to replace it, knowing that we weren't using it any more and that I had no intention of using it again.

The docs weren't on board with it coming out, as they are concerned about her not gaining weight. Well, I've done the whole gtube thing on my own, tackling everything from what we feed Kaitlyn to finding her therapy. Why should this be any different? I listened to my gut and it said no problem. Get rid of the tube! Maybe that 5cc balloon in her tummy (that holds the mic-key button in place) is making the pghlem and taking up valuable space anyway.

My feeling is this: she eats quite well (when she wants to and is hungry), she isn't vomiting any longer, there is nothing physically wrong with her, so why do we need a feeding tube?

So out it came! She was crying (due to the diaper rash, the tube hurting her and needing a nap). I had imagined in my head what the momentous day/celebration would be and this really wasn't the way I had planned.

But the tube is out! It seems so anti-climatic! It wasn't that longer that I was "complaining" that we'd never get Kaitlyn to eat or stop vomiting. I had laughingly imagined her going to college with her feeding tube, that's how impossible of a feat it seemed to me.

I wanted this to be a big deal! I wanted fanfare and hoopla - mainly for all the crap I had to deal with for the past 3 years. My pain and suffering. Kaitlyn insufferable vomiting. All the crap! so much crap - it's hard to remember it in some ways, (which is CRAZY). Instead it was tears from Kaitlyn, I pulled the water out of the balloon with a syringe, sopped up a bit of food around the site, slapped on some gauze, tape and that was that!

Now we have to wait a month to see if it will close on it's own. I've been told that about 50% of them close on their own, and 50% need surgery to close. Hopefully we'll be the former.

Let this be hope for all my fellow micro preemie moms who have kids with gtubes. All my other friends kids with feeding tubes. it can happen! Even when nothing is improving and you are stuck in the same old grind of pushing in food and slopping up vomit. You CAN get your kids to eat!

Don't be complacent if the docs don't know what to do. Research! Ask a lot of questions! Be patient. Work hard. And eventually you too can be rid of tubey-tube!

Not a happy Kaitlyn right before I took out the tube


The last look at Kaitlyn's feeding tube
No Tubey-Tube!
Taken 6 hours after removal, so far no food leaking!


21 comments:

The Truames said...

Woo Hoo! Way to go, Mommy and Kaitlyn! You are an inspiration! xx oo Anneliese

Billie said...

Congratulations Kaitlyn and family! Liz, you have done such an awesome job learning and researching how to help Kaitlyn, never taking NO for an answer. I admire your perseverance:)

Way to go!
Billie

Anonymous said...

I am so happy for Kaitlyn for you! NO MORE TUBEY-TUBE!!!!!!! I LOVED hearing her talk!!! I am curious as to whether her voice will get more audible over time.

Stephanie C

Kathryn said...

YAY!!!!! I am soooo happy for you both! congrats!!

Anna said...

CONGRATULATIONS! And she is so sweet!!
I have only one remark, regarding the antibiotics. And I apologize if the comment is stupid and obvious.Why are you assuming that she has to put up with all the intestinal problems due to the antibiotic? You can ask your doctor to change the antibiotic to a different group. My youngest daughter had the worst intestinal problems when they prescribed an ampicillin for her ear infection, after two days I complained about the diarrhea and they switched over to a cephalosporin...no problem, poop back to normal. Also, make sure she gets pre-biotics.
All the best,
Anna

liz.mccarthy said...

unfortunately this is her life-long voice.

liz.mccarthy said...

anna, funny you mention that my husband is at the pharmacy right now getting a new rx picked up. I hate changing half-way through, but we have enough issues with weight, we don't need her to poop it all right out of her!

Catherine Chandler said...

Liz, CONGRATULATIONS!!! I'm so happy for you guys! It's so cute watching her talk about the tubey-tube and the light bulbs. You deserve fanfare and hoopla for the removal! YAAAY!!!

As far as her voice, I remember a girl in my middle school had a really soft voice, and I remember talking to her about it--I can't remember why she had such a soft voice, but she said she'd had it since she was little. And people loved her, the teachers helped her when it was her time to speak (keeping class quiet so we could hear her, etc.), and she seemed very happy.

Thank you so much for sharing your journey with all of us...it is inspiring, to say the least!

Chantal said...

Whoooo hoooooo!!!! No more Tubey-Tube!!!!

Yay for Kaitlyn reaching this wonderful milestone!!!

Are you going to do something special with the last one? Save it as a memorial?

Liz, you must just have been soaring to be able to take that tube out!!

Good bye, Tubey-Tube, and thank you for helping Kaitlyn reach the point where you could go. I'm sure you will not be missed!

BusyLizzyMom said...

Wow, it is amazing how far she has come. I so remember reading all your posts about her eating (or lack of). I am sure back then you never would have thought it would happen.
Congratulations on such an amazing milestone.

Anonymous said...

Liz & Kaitlyn: Congratulations!! That is great!! Also, whenever I put Conner and Jordyn on antibiotics, I put them on pro-biotics, too and just slip it into their milk or juice. No diarrhea! Just a thought! Take care! Kelly & crew

Kristin said...

WOOOOOOOOHOOOOOOOOOOOOOO No more tubey tube!

I love the comment about the lightbulb needing batteries, made me laugh - everything in our house needs batteries apparently. It was kinda like watching Presleigh with her touch touch touch and holding everything in her hands and I dunno, whats this.. :-)

YAY three cheers for bye bye tubey tube.

Jennifer said...

YAY!!! I have dreamed and prayed for this day :) I am sooo happy the tubey tube is gone finally!!

CONGRATS!!! Kaiti you have come so far! And Liz, you are amazing! I know I say that in almost every comment I write but it is 100% TRUE! I don't know how you do it :)

mommycupcake said...

Oh m'gosh, Liz, what big hugeness just sneaking up on you! It must be completely surreal.

I hope things continue to go well with Kaitlyn's eating. If she can be so sick, needing antibiotics, intestinal upset and all that and STILL you were confident to take out the tube, well, it seems that there is no doubt that it was definitely time and you did the absolutely right thing.

The battery thing cracked me up, too. I didn't realize that is a universal kid thing - my son also says that whenever something is broke it "needs batteries." Too funny.

Oh, Liz, i'm so happy for you. :):)

-Sara

Anonymous said...

Congrats to all of you!Kaitlyn looks very healthy and she grew a lot!Looks like she's been enjoying her food nowadays. All toddlers fight with food sometimes and Kaitlyn had food aversions but amazingly she improved a lot in very short time!You are a very lucky person who can provide so much milk for your baby and Kaitlyn is developing normally.At one time you had hard time but it's no more and all the preemie moms had hard time too and they are still struggling!

Trisha said...

YEAH Kaitlyn! YEAH Liz! That is SO AWESOME! You are such an amazing mother. I really look up to you! All that hard work has paid off! What an great day for you all!

Anonymous said...

I am so happy for you all, too. I remember our "day" so well - and it was very similar, kind of anti-climatic. And my daughter's doctor, wasn't too excited about taking hers out, either - he wanted to wait another three months, even though we hadn't used it in the requisite three months, and I didn't intend to ever use it again. And we just decided we would spoon feed her the rest of our life if we had to -it was time! And that was three years ago, and we have never regretted it. Congratulations, I know how hard and how long you have worked. No one in the "real world", who doesn't have a vomiting, tube-fed, and/or food-refusing child really understands what you have been through to get to that simple moment. I am glad you get a little of your hoopla via the Internet, and I hope you will get some at your feeding support group. And by the way, Sarah's (my daughter) tube site didn't close on its own, and the surgery to close it was such not a big deal (we were literally in and out in just over two hours).

And as for Kaitlyn's voice, Sarah also has a paralyzed vocal cord, and I know that not all children are the same, but Sarah's voice has really gotten stronger the older she has gotten. She still has a soft voice, but as she has gotten older, the right cord has gotten stronger and more able to reach over and compensate for the paralyzed left cord. She has also gotten stronger lungs, and the better her breath control and her language skills have become, the stronger her voice has gotten. I know that the same may not be true for Kaitlyn, but it is a possibility. Sarah still has a much softer voice than any of her friends, but these days unless you really know that her cord is paralyzed, you wouldn't really notice right away when you meet her (she is five now.

Shellie

The Microblogologist said...

Yeah, congrats!!!!! This is great news, hope the good news keeps coming as your family has been through way more than enough of the bad kind! Both of your kiddies are adorable as always =)

Julie said...

Liz- I have followed your blog now for a couple years and am so happy that tubey tube is finally gone and sweet Caitlin is just ADORABLE!!

Shannon and Carey said...

Liz and Kaitlyn,
WOOOOOOOOOOhOOOOOOOOOOOOOOOOOO!!!!!!!!!!!
Does this call for celebration or WHAT!???????????!!!!!!!!!
I am so happy for you! I have read your blog for quite some time and this is awesome, wonderful news.
Really, I couldn't be anymore happy for you guys. You do such a great job informing us all. I know there are so many who appreciate this.
Kaitlyn, way to go baby girl. I am so proud of you! Hope your belly is ok.
Love and kisses and bye bye tubby tube.
-Shannon in Austin.
Did you have a ceremony? Like throwing it in the trash? Seriously.

Kathy Ramsey said...

First off, virtual streamers and confetti and balloons to you and Kaitlyn!!

But being a generally snarky person, I just have to bring up--was there EVER a doctor who was supportive of removing a G-tube? I've never heard or read of it. It's just completely indicative of how unprepared GI doctors are to deal with feeding issues. The removal of our daughter's G-tube was also left completely up to us and happily turned out great, with no surgery needed to close the site. But the doctors were completely unhelpful in the decision-making process.

Anyway, I feel like I should write an ode to the G-tube, a lifesaving device, but at the same time so despised and resented (I'm speaking for myself here). I'm grateful we intersected with a period in history where G-tube insertion could allow us to take our daughter home and feed her, but ecstatic to get rid of the damn thing and never look back.