Friday, June 27, 2008

Unintended Consequences

This week we got some inspiration to keep going at this blog. Ellie has settled down and is making very slow progress so there isn't a lot of motivation to update with the fine details of her feeding, pooping etc.

Then Abby went in to the monthly Omegaven support group that they have set up at Children's. She went in, sat down and make small talk with the one other woman who was in the room. As the meeting got tstarted the other mother introduced herself, where she was from and why her shild was on omegaven.

Then it was Abby's turn.

"Hi my name is Abby Brogan and our daughter Eleanor was born in April, 2006 with short bowel syndrome. She has been on omegaven since...."

Abby told me that she had to stop because the other mom was visibly upset.

"My baby is alive because of your blog."

No Shit. This really happened.

That is the story as Abby told me when she got home. If that won't get you thinking I don't know what will.

Then to compound that experience, Abby had to go to the 10th floor to return a DVD that we had gone home with last month. while she was there she met not 1, not 2 but four other families who are at Children's because of this electronic shortcut around mass emails.

They all thanked Abby personally for saving their babies. Holy smokes. Imagine what it feels ike to be someone who actually does something to save babies......

So now Abby is in San Diego at the Oley conference talking short bowel and tube feeds with the world. She is there for work and personally and I hope that she comes home with lots of swag for us.

She is contributing to the swag pile by handing out the line covers that I invented to keep Ellie from tangling herself in the three tubes that she sleeps with. My family made a bunch of covers in adult patterns and apparently they are very popular with the adults who are sick of people staring at their tubes as well as the families that are looking to keep their kids safe. Anything to avoid the bare tubes hanging out there. They are now being offered to every NutriThrive client in custom colors and designs. Either to help the tubes blend in or stick out, whatever you want. We are even looking into making insulated ones to help with freezing lines in the winter.

Another unintended benefit.

We can't patent them so might as well make other people's lives better.

Going from this:To this may not seem like a lot but it really is a nice thing, especially if you have three tubes at the same time.
We were handing our extras but, now we are out. I really think that Ellie's doesn't know what is in there when her lines are bundled. Amazing for an idea that came to me at three AM when I was neurotic about her wrapping lines around her neck.

So far so good on the homefront. Flying solo is interesting but tiring. Fortunately Ellie still sleeps 11 hours a night so I have plenty of time go catch up. We've got lots of things planned for the weekend so she should continue this trend.

My vacation starts in exactly 3 hours and four minutes.


Anonymous said...

Reading this blog post makes me happy... You guys ARE an inspiration, seeing pictures of Ellie makes me smile every time, and I'm glad you're seeing some of the happy benefits of sharing your story!

Mikele said...

What an amazing story.

Ben April said...

I'm sane today because of Tyler's blog which can be traced directly backed to yours. It's more than just Omegaven. "Blog Therapy" works too.

Morgan said...

Hello! I was doing research on Short gut and ran across your blog... We are considering adopting a one yr old girl with short gut and I am trying to do some research... Can you recommend any? Do you have advice or input?

Thank you SO much for sharing your story and your beautiful daughter with the world!

Susi said...

Yes, Brogan Family, you certainly have been an inspiration to so many. As I read the other blogs, I guess we are truly blessed to have Camden progress so quickly. Nana and Grampy have become fully trained in administering meds into the G-tube, making sure all plugs are covered and clamps checked! We can even change his dressing. Guess having the 3-month preemie toughened us up. Two million dollar grandkids is plenty. Today, Tonya is bringing up Madison's crib to camp for Camden when he is here. She is graduating, like Ellie, into a youth bed.
Life is pretty difficult for Mom and Dad with their work schedules, plus nurse Mimi expires tomorrow!! See why we are hopefully prepared to do some stepping in!!!
Weather has been so cold and rain every day, but we stay cozy in camp and surely do hope you make it up to Lake Wassookeag with your Nana and Grampy this summer, Ellie. XO from the Dexter Browns at Camp Two Loons.

Leon Jordan said...

Hi Gib, I've been reading your blog lately and really amazed how Ellie gotten big and stronger. She is doing so fine, she just keep growing up. I e-mailed Abby about the Nutri and I just missed her here in San Diego. I wish I found out earlier that she will be here for the Oley Foundation, it'll be so cool to meet her and talk to her personally since I haven't met any short gut family here in SD.But it was too late for me to go to the seminar. I hope there will be next time.
Anyway, I would love to have one your cool invention of your line cover, i like the design and color. I did try to cover my son lines before. I used the SE Pro Net. It was ok and easy to slide all the lines but the color is white and too bright. I would appreciated it if you send one for my son. Please e-mail me :).

Thank you for sharing your stories to us.
God Bless you!

Anonymous said...

The fun thing is that you'll never really know how many lives that Ellie - and you two - have touched. There are many. Your postings continue to inspire and give hope to parents when they see this adorable little energetic girl living her life. Thanks!

Anonymous said...

The line covers are truly a wonderful invention. Montana and I tried numerous different ideas to cover Nora's lines and none have worked as well as your line covers. It's amazing how something so simple can help so much with something so complicated. Thank you Brogan family for inspiring so many SBS families and being so generous in sharing the line covers.
Many thanks,
Thomas Family

Marla said...

You guys are friends of a friend, and while my daughter doesn't have short gut, she does have her own challenges to overcome. Reading your positive words and seeing your gorgeous daughter blossom is really helpful and - dare I say - inspirational to me. I send you all my best.