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Baby registries/showers -- what was/wasn't actually useful?

post #1 of 8
Thread Starter 
Baby Fiona has a Giant Omphalocele, and will be born and immediately transferred to Children's Hospital, where she will be for an undetermined period of time. When she comes home, she'll still be possibly/probably medically fragile, at least needing some extra care.

What baby registry stuff was most or least useful to you?

I already know the clothing stuff, because she will need larger sizes (for room for the omphalocele and its dressings) and access to the omphalocele.

We've added stuff like moisturizing hand sanitizer, but I don't know what would be most or least useful.
post #2 of 8
Hugs mama. I'm sorry you're going through this.

My friends' daughter was born with omphalocele. They put together their registry without any changes and registered for all the usual baby stuff. Their daughter was in the NICU for the entire treatment/surgery and was able to wear "regular" preemie clothes when she came home. While in the NICU, she wore some larger clothes, but they mostly stuck with the hospital-issued stuff.

If you are going to breastfeed, this could be one area on your registry where you might want to splurge a bit. Pumping/breastfeeding in the NICU and during those first few weeks at home is NOT easy. A nursing pillow, lots of breast comfort/relief items, and a nursing stool are all things that really helped me.

Other things that helped with my little guy was a co-sleeper (since I just didn't feel comfortable having someone so itty bitty in bed with me during those early months) and an inclined sleep positioner. The NICU staff said the inclined positioner wasn't necessary, but he slept on an incline during his entire NICU stay and we decided to continue that at home for extra comfort.

You *could* also stock up on preemie diapers. We had to use preemie disposables diapers for awhile, then were able to move into cloth once he was able to fit into the preemie prefolds.
post #3 of 8
Thread Starter 
your friend probably had a smaller omphalocele. Fiona won't be able to have surgery for 6 months to 3 years, and in the meantime, babies with giant omphaloceles look like pregnant babies, because of how much it protrudes.

Apparently, cloth diapers don't fold out of the way easily enough to protect a giant omphalocele, plus frankly, I'm going to just have too much on my plate to handle CDing this one.

Hopefully, she won't be a preemie. We're hoping it stays safe in there for her to make it to 37 weeks.

We'll be sidecarring, as she'll have too much going on for me to feel comfortable bedsharing (which I did with DD for 3 years). And we'll almost certainly need an inclined sleep positioner, because these babies tend to have bad reflux.
post #4 of 8
Quote:
We'll be sidecarring, as she'll have too much going on for me to feel comfortable bedsharing (which I did with DD for 3 years). And we'll almost certainly need an inclined sleep positioner, because these babies tend to have bad reflux.
Fisher Price has a new product that's in the aisle w/the bouncy seats at Babies R Us. It's made for new babies to sleep in and it's inclined for reflux--it also happens to have passed the same standards as bassinets. Mom bought my sil one for their new baby, and I'll definitely be getting one for our new babe. I wish I'd had it before w/my preemies w/reflux. It also folds flat to slide under the bed (and it's easy, too!).

I definitely would want one of those AND a Nap Nanny (inclined sleeper, but appears safer than the usual ones!).

A wipe warmer has definitely been nice w/babies who chill easier than most, too.

hths

mrsfru
post #5 of 8
I know the OP was more about baby stuff but as a Mama of a Prem who was hospitalized for one month may I suggest putting the word out for:

- a parking pass (or cash for a parking pass). Parking in hospitals is expensive and as Fiona will be in for an indeterminate amount of time, a parking pass will become your best friend.
- gift cards for nearby restaurants. I know, I know...its not for Fiona. But NICU life is stressful - coupled with pumping/taking care of your older kiddos/general life...a meal you can grab nearby and scoot back to the hospital in invaluable! Precooked, frozen meals from the cooks in your family/friend circle would be most welcome as well! A well fed Mama is something Fiona will need!
post #6 of 8
you might try registering with http://www.depositagift.com it's a cash gift registry so you can register for the idea of what you want, but receive the gift money and then you can buy what you need as you go. i imagine there will be a lot to learn. so sorry you are going through this.

i learned about deposit a gift from daily candy yesterday. i think we'll use them too. so much more eco friendly and simpler: http://www.dailycandy.com/kids/all-c...-Cash-Registry
post #7 of 8
I would definitely look into getting a Nap Nanny. This was one of the most amazing things that I bought for my daughter when she was born. She had some trouble sleeping and when we started using the Nap Nanny it was like she was a different baby. She now sleeps through the night every night! So many moms agree with me, definitely look into it! The cover also comes off so you can easily wash it, which I do all the time, to kill the germs. We bring it everywhere with us because it's so light and my daughter loves it so much. Good luck with everything!
post #8 of 8
Quote:
Originally Posted by sparklett View Post
If you are going to breastfeed, this could be one area on your registry where you might want to splurge a bit. Pumping/breastfeeding in the NICU and during those first few weeks at home is NOT easy. A nursing pillow, lots of breast comfort/relief items, and a nursing stool are all things that really helped me.
If you decide to pump, I would definitely go all out on a pump. I found it much easier to use my own than the NICU pumps. Honestly, in retrospect, pumping for a NICU baby was so hard that I'm not sure I would have the strength to do it again.

Fiona has a wonderful strong mama in you. She's very lucky to have you.
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