Saturday, April 2, 2011

set backs


Here are some things you should know about Davy........ 1. she is very inconsistent, 2. expect the unexpected and 3. that we are always doing two steps forward and then two steps back. So when these thing DO happen, I really should not get upset because it's really her M.O.
I also notice(and tell me if this happens to you) that as soon as I really start to brag about a child's accomplishments, they quickly stop doing the accomplishment. SO NO MORE BRAGGING RUTH!!! When am I going to learn?
Alrighty then, we all know how well Davy has been with eating her grub. We have been working on this for the past couple of months. She has surprised pretty much everyone by how much she loves it and her actual ability to eat. I have to say it has been so freeing to not have to hook her up to machine every couple of hours. I swear Davy even seems happier since she has been eating by mouth.
When a baby has eating issues like Davy, you first need to make sure that it is safe to feed her. A test called a modified barium swallow is usually done before feeding therapy starts. We obviously are a little late with this as we just had it done on Tuesday. During the test, they feed Davy 3 consistencies of liquids, a puree and a solid, all while taking an x-ray of her throat.
I have to admit I was WAY confident walking into this. Davy has been doing amazing with purees and showing NO signs of aspirating. Then, during the test they even spoon fed her the liquids, So I knew we had it in the bag. The test lasted all of 5 minutes. I even joked to the doctor on how fast it was.( I am so dumb) The therapist had me go to the waiting room to wait for the results. While in there I struck up a conversation with a NICU mom. She was telling me all about her sweet baby and how he could go home as soon as he learned to eat. I told her all about Davy. And how some things turn out a little differently then you expect, but that it's OK. What seems scary at first becomes completely normal. Like feeding tubes, not so bad, right?
Well then the therapist came back and asked me to step outside...wait, what?!!!! Outside?!!! I know what that means..... baad news. I don't wanna go outside!!!
She told me that the test can be very quick for 2 reasons; the baby is a champion eater or it is too dangerous to continue. And unfortunately it was too dangerous for Davy to go on. She was silently aspirating on everything they had given her. Cue shocked face, followed by Mom tears.
I did NOT expect this. I was SO sure Davy was doing well. She said that we couldn't have known cuz she should no outward signs, hence silent aspiration.
So we are no longer able to feed her anything by mouth. And she will need to have a lot more therapy. I was completely devastated. Especially seeing how miserable Davy is being back to only tube feeds. She really is missing her cheetos. We are trying to distract her when we feed her by taking her on walks. You all know how Miss Davy has a love affair with her stroller. It seems to do the trick.
Now I am just focusing on the positives. Thank heavens we caught this before Davy got pneumonia. We really avoided a catastrophe. It really is a blessing.
Modern medicine is amazing. I am thankful for tubies, without it my daughter would not be here.
Those are some pretty convincing positives.

26 comments:

steelebjm said...

Poor Davy, poor mommy. Hugs. :(

Kristy said...

You don't me, but I am a regular reader. Don't even know how I stumbled upon you. My heart broke for you and sweet Davy just now. You will definitely be in our prayers! Hang in there :)

Janae said...

I'm so sorry

Melany said...

aw, that's a bummer. i guess it was a good thing they did that test! modern medicine is truly a blessing.

Red She Said said...

One of your sentences jumped out at me here - "I am so dumb" - what the heck Ruth! I know we don't know each other but seriously, how were you supposed to know? With all that Davy has going on, you have every right to brag, jump for joy, joke, be upset, cry, etc. Just keep rolling with the punches, being an amazing Mom with your amazing family and the rest of us will keep cheering you all along during the process. Keep rocking those sunglasses during those walks too. ;)

Red She Said said...

P.S. Whenever I need a quick pick me up, I go here to laugh (don't be turned off by the name of it): http://www.sexypeople-blog.com/ Something tells me you may appreciate it too.

jojo said...

*Sigh*

*Hug*

Sending prayers your way today. Lots of them!

Monica said...

Small consolation and I don't mean to be trite, but at least she got to enjoy her birthday cupcakes. I second the amen for modern medicine. Hope she is back to eating soon.

Rochelleht said...

Bless your heart. I'm so sorry for the setbacks. I know them well. Totally remember the gastric test. I used to have to thicken all Ethan's liquids. He aspirated all liquid. It sucked. But no feeding tube. Somedays, maybe that's easier... ??

Good luck and I'm so glad you caught it!!!

Amber said...

I got to your blog in a round-a-bout way from gabbafriends.com. My son was premie and aspirated his food his first year of life. We ALMOST got to the g-tube faze, I can't imagine what you're going through, I know what I went through was so frustrating. All I can say is to enjoy the precious hugs you get. The time you share w/ Davy now brings you closer to the future. My son is undeniable attached to me because of all those patient days I had w/ him. Love the simple things.

Kyle Heck said...

That really sucks. I'm sorry. My baby is also a tubie and has had similar set backs. Love your blogs. So good to hear from someone in a similar boat as us and is as positive as you are. You are an inspiration. thanks :-)

-Sarah H.

Georgia said...

Finding the positives....that is what life is all about! So happy that they have a test for this Ruth.

Jessica Crozier said...

Ugh, what a disappointment. BUT, I DO know about the 2 steps forward, 2 backwards. And you have the perfect attitude…at lease you caught it before she got sick. At lease there's modern medicine. At least there's testing to detect this! You are a wonderful mom and Davy is making excellent strides, and will continue to do so in HER OWN TIME (a very hard lesson this type-A mom is still learning).

PilatesMom said...

Hugs from another failed swallow study mama, the direct quote "the worst swallow study we have ever seen." The great news is that you are doing all this work before Davy had an oral aversion...she will kick the next one, I just know it!!!

Wendy said...

I am so so sorry. Your attitude is awesome though. I almost cried with you as I read this. I hate setbacks. Praying that Davy will be eating everything with the rest of the family before you know it.

Polite Society Magazine said...

Oh man, Ruth. I'm so sorry to hear this. I can only imagine how mad Davy is about this. And you too. At least you get your walks in every day! (sarcasm) That little girl is going to grow up to be one tough cookie! And momma is too!

Christy

Kel said...

Gah! How frustrating for you all. I hope the cheetos are back on the menu soon.

Damaris @Kitchen Corners said...

Yay for Modern Medicine!

Damaris @Kitchen Corners said...

oh and Yay that Davy has health insurance too.

Ora said...

Oh, I'm so sorry you guys have had a setback. It is such a blessing that Davy was born during a time when modern medicine can help her. Glad you caught her problem early. Lots of prayers that she will get back into the cheetos game!

Reenie said...

Oh no...I'm so sorry.

kimmomofnine said...

Boo. Sorry to hear of Davy's setback, but so glad that you caught it (yeah for modern medicine!). I hope additional therapy does the trick, and quick, so she can get back to munching on Cheetos.

Marie said...

I can't stop reading your post! You are so brave and so is Davy. I have a little girl who's the same age as Davy. I always complain when it's mealtime because she throws everything on the floor. I'll do my best not to complain anymore. You are in my prayers.

Caitlin said...

This is such a bummer. She has made so much progress in a year and I am sure she will continue to amaze everyone in her second year of life. It still doesn't make up for this set back. The barium swallow was semi-traumatic for us. Della aspirated some because she was screaming hysterically the whole time. Things will get better.

Petie said...

OMG, that brings back so many memories with our daughter. Hang in there. Pretty soon all this will just be a memory. You are an amazing Mom and Woman. I am so happy I found your blog. I love following along and keeping your family in my prayers.

tracyjax said...

I keep forgetting to tell you but a couple weeks ago I had a dream that I came over for one of your kids birthdays and your back yard was HUGE....so huge that you had a pet elephant living back there. Ollie rode it out to show me.