Tuesday, November 29, 2011

Advocating For Your Preemie

We are on our way to a couple therapy appointments in a different town. Since Jack's birth, we've been dealing with the reality of living in a small rural state. Minimal specialists, especially when it comes to feeding therapy, have made things frustrating to say the least. We thought we had to settle for mediocre therapy. We felt stuck, like there were no choices.

This didn't leave us with much hope for Jack's success and has caused more headaches and frustration than I'd like to admit.

About a month ago, being totally fed up and ready to give up, we heard that a feeding therapist had just moved to the state. We immediately called and got a session. This propelled us. We decided once and for all, to be Jack's biggest advocates. In doing so, we let go of some therapists and sought out new ones. We've  done this before with doctors. It's never been pleasant, but always been worth it . I don't know why it took us this long to realize that we had plateaued when it came to therapy. Things were easy, predictable, and safe. But they also weren't producing results.

We now only have one therapist left from our old team. We are choosing to seek out the best fit for Jack. If that means traveling for three hours, so be it.

Things we've learned:

1) Feelings are secondary to the health and well-being of your child. I know that sounds ridiculously obvious, but firing someone never feels good. It's awkward. But sometimes, it has to be done.

2) You expect all medical professionals to know their stuff. They've been through years and years of schooling and training. But every now and then, you come across somebody that doesn't seem to know what they are supposed to do or have the drive to do it well. That is your gut telling you as a parent that it's probably not the right fit. Listen to it.

3) Almost no therapist has ever willingly offered up that they weren't qualified to handle Jack's very specific needs. We would much rather hear from a therapist that they didn't feel comfortable, rather than having to terminate the relationship because of our lack of confidence. Only one person has ever told me she didn't feel qualified in a certain area of therapy. I could have hugged her when she told me! Since people don't seem to be willing to admit they may be wrong for the job, you will have to advocate even more so for your child. I know this is sometimes difficult because often, we are assigned therapists without much choice. Still, don't let bureaucratic hurdles get in the way. 

4) Talk to other preemie parents and find out what works for them. We found out about our feeding clinic through another parent, not our doctor. We found our new feeding therapist through a friend, not a doctor or another therapist. Talking to other parents helps immensely!

We are still learning these lessons every day. Many times it's trial and error, but we are hopeful in our new direction.

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Our Beautiful Family said...

This post made me cry. That sounds dumb I know. But, it brought me back to a lot of bad feelings and hard times. Although we do not live in a rural State, we do live in a rural area of our State. We live 3hours from any decent medical facility appropriate for Owen. It has been hard, especially with gas prices and a younger child, but we make it work.
Thank you for spreading the word. There are so many preemie parents who don't advocate. They sit back, like I used to, and believe all the professionals. Sometimes the professionals don't know what they are talking about but are ashamed to admit it.
I could go on and on about this subject lol

Jord said...

This pushes me more and more to work away from our home hospital and aim to always go to the children's hospital where Luke spent 3 months. When Luke was born, we were told we were in the best place. However, the more and more we visit our home hospital the more we are upset. Nothing reaches our expectations that we were given while in Indianapolis. We are honestly weighing our options to visit the hospital 3 hours away every time we have a problem from now on. At first I was afraid to speak up for Luke, but more and more I feel like I have to and want to. Thanks for the wonderful post. I hope Jack had good visits.

Michelle said...

I "fired" two nurses who I didn't feel were taking the best care of our twins in the NICU. I talked to the NICU coordinator to let her know I didn't feel good about leaving the NICU when those nurses were with our babies. I hated having to do it, but I was able to rest better at night with nurses who were good at their job. We also had to switch therapists for Cade for eating. With the first one, he made no progress. After changing to a new clinic and a new therapist, he began making progress with eating so much more quickly. It is definitely hard to let someone go, but you have to do what is in your child's best interest. Great post for new preemie parents. I wish we had switched therapists sooner.

Nik, Lindsay and Pierce Franks said...

So encouraging to read this. I think every preemie parent has struggled at some level with finding their voice for their child. So often it seems like the babies get funneled into a system and it can be so frustrating to think that you have little control over their therapies/outcome. Oddly enough, I read this post after just speaking with our early interventionist to let her know that we are going to try the Anat Baniel Method of therapy for a little while before jumping into traditional PT. Thanks for the encouragement!

Lindsay said...

You're SO right! Parents often intuitively know what's best for their children, and good parents will make sacrifices, hard decisions, etc. for the betterment of their child's future. You've been a great mama from Day One, Jessi. :)

Anonymous said...

This is true for any medical situation. My dad had a stroke when I was kid, and the family fired a couple of doctors because of the bad attitudes (they kept saying he'd never talk or walk again, today he does both).

Jenny said...

Isn't it hard to let go of that guilt about firing someone. We just keep thinking it's going fine, but forget it could be better with the right therapist. There are so many mediocre therapists and some great ones. It's worth effort to find the great ones. I totally agree that parents are the best references.

I found a great therapist for my daughter after reading this website http://www.childrenandbabiesnoteating.com/ . It helped me realize there are a lot of options out there and I didn't have to stick with what was close and easy.