? about what to do with registry for baby with illnessXPOST

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? about what to do with registry for baby with illnessXPOST

Postby mrsjoh » Wed Jun 11, 2008 8:09 am

hello, I am sorry to ask this question, I just want to know other moms whose babies were given a life threatening illness do, do you register? Do I buy a crib, carseat etc? Also has anyone set up an account somewhere for donations, as I won't be working for a lot longer and paying for food, parking at hospital etc...

Baby will need open heart surgery at birth and then 2 other open heart sugeries at 3-6 months then at 2-3 years. There is an 80% survival rate. We are very positive and hoping and praying for the best,

thanks for your help!
Jasper born Nov 25, 2008-Feb 23, 2010 www.jaspersheart.com
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Postby dixiechicken » Wed Jun 11, 2008 8:50 am

My situation is a little different because we didn't know about a "problem" until Wade was born. However, I think you need to be prepared. So, if I were you, I would go ahead and have a complete nursery with all the fixin's! :D But, being the frugal person I am, I would definitely keep all receipts and packaging! :oops: And yes, I would register. Again, I would try my best to keep gift receipts and such. It really is truly amazing how generous people can be in situations like this. I'm sure there is a very tactful way to set up some kind of "fund" for your family for expenses. I know a friend of mine back home was going to do a local fund raiser for us--a community dinner of some sort--if we needed it. Our children's hospital didn't charge for parking if you had a child in the hospital. Having a child with special needs is a HUGE financial strain. There are many organizations out there that can help. Some are income based.

I had Wade 2 days before my school got out for summer vacation. The evening I got home from the hospital, a friend from work brought over a bag full of food gift cards! 8O Mind you, they had already given me an amazing shower 2 months prior. One day we were in the cafeteria at the hospital and I ran into an assistant from my school, and she paid for our meal! My neighbors loaded our freezer and fridge. People really do rise to the occasion. The generosity of other's was a real eye opener to me. I've never been in a situation where I really "needed" anything/anyone. I've always been the "giver". It's a humbling experience, and to me, a true testament of God's grace!

I'm so glad you have such a positive attitude, and I understand your need to be "realistic". But again, you need to have everything ready for your sweet baby! :wink:
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
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Postby tdegrand » Fri Jun 20, 2008 7:14 pm

We knew our late DD had a problem before she was born. However, we made the decision to prepare for her regardless of outcome. Unfortunately our situation did not turn out positively and DD only lived 2 hours, but had she been fine (which was very possible), I would have felt horrible by not preparing for her arrival. I definately don't regret preparing for her because now we are ready for #2 who is already on the way!! :) Good luck with everything and I hope that all turns out with the best possible outcome :) I don't think there is a right or wrong decision to make here, just which ever is right for you :)
Teri 33, Gary 38, Angel in Heaven DD Skye Elizabeth: 1/16/08, 6lbs 2oz, 18.5 in. w/ us for 2 hrs
DS Calum Anthony: 12/29/08, 7lbs 8oz, 19.75 in, born @ 35 wks 4 days!
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