Calling all micro preemie parents

We need your help! The Zoe Rose Memorial Foundation is currently gathering information to include in our website. The Foundation's purpose will be to help/support/educate parents of micro-preemies (babies born at 32 weeks gestation and earlier). We will cover six major areas: prenatal (if diagnosed high risk), being in the NICU, transitioning home with your micro preemie, on-going care and support, fathers support, and bereavement support. We have ultimate plans beyond the website to be able to connect in person with families. I know when Zoe was still in the NICU, just having my Georgia PINES parent advisor come see me once a week was invaluable! But the thing is...parenting a micro-preemie(s) does not end when you leave the NICU...it really is just beginning and we parents still need all sorts of support and information for a long time to come. Because of all of the incredible and ongoing work and research the March of Dimes has done, micro preemies have better survival rates. Therefore we see this need to serve, support, and educate these micro preemie parents who have to parent in a very different fashion that those with term babies.

I've created a survey for any willing participants to fill out to help us hone in on the areas where these parents most need additional help and information. We had a very specific experience with our girls, and looking back we know what we wish we had known before the girls were born, we know now what would have been and what was helpful during their time in the NICU and getting them home, but every baby is different, every family is different, every hospital is different. In order for us to eventually reach the entire nation (and hopefully the world) and to be effective in our efforts we want to make sure that we address all of the issues that are most important to parents with micro preemies.

I've posted this survey among all of my multiples and bereavement groups and have already gotten responses! Thanks Ladies. So, if anyone else is interested in sharing their experience please email me and I'll send the survey to you. All information will be kept confidential and all questions are optional. We are so appreciative of everyone who has taken and will take the time to complete the survey. Once we are on the web we'll have a much more high tech way of doing this where you can just log on to the website and fill it out directly there...pretty cool things happening in our future!!!

1 comment:

Jill said...

Can you email me the survey again...it got lost on my computer somewhere (and I was 3/4 of the way finished completing it! Aghhh!) Thank you!

All time favorite video of Zoe!

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Bible verses that comfort me

"Yes, we are fully confident, and we would rather be away from these earthly bodies, for then we will be at home with the Lord."
~ 2 Corinthians 5:8

"Let the children come to me. Don't stop them! For the Kingdom of God belongs to those who are like these children....Then he took the children in his arms and placed his hands on their heads and blessed them"
~ Mark10:14 & 10:16

"...those who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint"~ Isaiah40:31