Saturday, July 14, 2012

Gastroschisis Awareness Day is coming up

So, if you've been following me for any amount of time, you'll know that almost two years ago, my daughter Ava was born with a birth defect. Her birth defect is called gastroschisis, where the abdominal wall doesn't close in utero and the intestines and sometimes organs are outside of the body at birth. I won't do a whole recap, but if you're interested, click this link to read up about our NICU experience.

 Ava spent 66 days in the NICU, and had 4 surgeries to fix her gastroschisis. We weren't even able to hold her for two weeks after she was born, so we wouldn't hurt her. She spent most of those two weeks sedated to keep from pulling on the silo bag/incisions.

July 30th is Gastroschisis Awareness Day. A few states have officially made it "Gastroschisis Day", which is awesome since there is no known cause for gastroschisis, and the rates it occurs just continues to grow. It used to be a 1 in 5000 occurrence. Then it was 1 in 2200. The rates just continue to rise.

So on July 28th, we will be joining a few other gastro parents in Fort Worth for the 3rd Annual Gastroschisis Awareness Celebration. Avery's Angels is the organization that provides so much help and information to parents. One of the things they do is send out care packages to parents, and as always, they are looking for donations. Some of the things they're looking for?


See all the wires that Ava was connected to? NG tubes, monitors, Gastro babies can't wear regular onesies, since they need a way to keep the wires free and it needs to be easy for the nurses to check surgery sites.

So one thing that Avery's Angels is always looking for is new and gently used button up onesies. A button up onesie is like what Ava is wearing in the picture. We also had good luck with two piece outfits (the tee or tank top with little shorts or bloomers). Just something that the wires can come out of. 

They are also looking for socks and mittens. The socks are great, not only for chilly feet, but they keep little fingers from pulling on their wires. I can't count how many times Ava pulled out her feeding tube or her NG tube, and it would be so stressful to her for them to have to reinsert it.

They are also looking for little hats and hairbows. You get so focused on all those wires and surgery sites, and it's nice to have a little accessory to make you feel "normal". I remember when our nurse put this bow on Ava, and it really brightened up our day. Instead of looking at all of Ava's wires, it was nice to be able to ohh and ahh over how adorable she looked.

Other items they're always looking for? Small toiletries for parents are always wonderful. Sometimes you spend hours up there in the NICU, and it's nice to be able to step out for a minute, rinse with some mouthwash and feel like a new person. Little notepads to jot down questions for the doctors are great too. Nothing is worse than waiting all morning to see the doctor, you see him for 5 minutes and completely forget what it was you needed to ask. Lastly, food and gas gift cards are amazing. We drove 80 miles round trip every day to see Ava, and that isn't cheap. Plus, hospital food gets old, and it was nice to be able to go through a drive through and get something to eat. 

Dear friends, will you look through your old baby stuff and see if there is anything you can donate? It'd be a good excuse to finally clear out all of that stuff that you've been meaning to go through. If you do run across something to donate, you can mail it to me (message me for my address) and I'll bring it with me to the celebration to donate. 

Every little thing like this makes a horrible situation just a little bit easier. Trust me, you don't know how hard it is until you've been there, and anything that helps is immeasurable, mentally and financially. 

1 people love me:

Jaclyn said... [Reply to comment]

I'm going through my 6 month old's closet today to clean out the stuff that's too small...we were so blessed with clothes from showers that I have several things she never even wore because she grew out of them so fast. I'm not sure how many button downs we have, but would love to send them to you.