baby registries for babies w/medical issues -- what is/isn't useful?

[CorasMama]

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.

[MotherWhimsey]

I'd find out what food options are near to the hospital where she'll be and ask for gift cards for those. That way you don't have to worry as much about that.

gas cards are good like that too

blankets, even if she can't wear clothes for a while, it's nice to have pretty unhospital looking blankets around.

picture frames and decorations that you can put in your space in the hospital and then move to her room at home when she comes home. It makes the hospital a lot less bland looking. It might seem silly, but it really does help to have your own stuff around.

A couple of diaper bags. Depending on what her long term needs are when you come home, you might need more than one diaper bag. We still have a couple. We have one for regular diaper bag stuff, one for IV supplies, and one for feeding stuff. That way you can just grab one if that's all you need or you can grab them all.

A really nice baby book. It might not be something that you can handle doing at first, but eventually each little inchstone becomes a HUGE thing to celebrate and it's nice to see the progress in one place.

A sewing kit. Sounds really odd, but depending on what she needs and for how long, you might need to alter her clothes. So a nice travel sized sewing kit with something like stitch whitchery in it is nice because you can cut holes where you need them and patch up the edges. It feels nice to have clothes that don't annoy the heck out of you because they don't work well with tubes.

Hats. A baby can always wear cute hats and headbands. If she can't wear any other clothes, she can still have a smashingly cute headband on.

A hand/foot print casting kit.

Pumping stuff like nipple cream if you're planning on pumping. She probably won't be able to have enteral feeds for a while and you'll probably have a killer stash going.

Stuff for you! Books, a nice journal, a camera if you need it. Bathroom supplies for you is important too. A nice hot shower with fabulous shampoo and soap can make you feel like a new person. Some heavy duty lotion for your hands because you'll be washing them a TON. Something like Eucerine lotions or vaseline heavy repair works best.

Diaper rash ointment. For some reason it's a pain in the butt (pun intended) to get a hold of basic things like this. If it's not ordered by the physician, they can't give it to you and sometimes all they have for the basics is vaseline.

A boppy if you don't have one. It can be easier to hold her if you have a way to prop her up in your arms so that they don't feel like they're going to fall off.

[MotherWhimsey]

oh, and this isn't exactly a registry thing, but one thing I wish I had though of keeping together in the beginning. Make yourself a bag of stuff that you don't particularly want to ask people to bring you. Lots of pads, hemmrhoid cream, tucks pads, stool softener, immodium, any other meds, a ton of panties, and breast pads. It's nice to know it's all there if you need any of it and not feel like you have to ask someone to bring it.

[KatWrangler]

Would gown sleepers work?

http://www.amazon.com/Baby-Jay-Kimon.../dp/B0029NAB00

What about socks?

[anj_rn]

Ok here is my list:

Things for the hospital: Gift certificates for restaurants, paper goods, snacks/drinks, pumping stuff, socks, hats, blankies. I had some mom's who brought in baby quilts and covered the isolette with them. It made the little corner of the NICU seem more like theirs.

For home:
regular baby stuff: clothes, diapers, wipes, bouncy seat, car seat, diaper cream, crib sheets, etc. LOTS of receiving blankets

special stuff: clothes for bigger sizes (I love getting mix & match stuff, so I can just change the shirt or pants out, chux pads (these are big waterproof pads they make them in washable & disposable) I put them in the crib with the blanket on top and then the baby on top, that way if we have a major leak, we can just change the blanket & chux not the whole bed. It also protects my bed if DD is snuggling with me)

I could not make it without this bag from Land's End. http://http://www.landsend.com/pp/Na..._to_0000000784

You can get it monogrammed. I have the medium open topped, and I can carry her medical supplies and diaper stuff, it has great pockets. I actually want a zip top bag for travel as well. They are very sturdy.

[sapphire_chan]

If you'll need access to her abdomen, my vote is for pants with attached feet and you can cut off onesies to make t-shirts.

[MotherWhimsey]

oh, and i'd say avoid zippered clothes (like those footie PJs) and go for snaps instead, cause you can just snap around tubes, but you can't do a whole lot with zippers and they're a pain in the butt. You have to cut holes and unhook stuff and poke it through the hole and then rehook and zip.

[starlein26]

You've gotten great advice!

The only other thing I can think of...since the days and nights are long is some type of entertainment for you/dh (books/magazines/wireless computer/dvds).

Big, big hugs...

[skybluepink02]

Originally Posted by sapphire_chan

If you'll need access to her abdomen, my vote is for pants with attached feet and you can cut off onesies to make t-shirts.

I agree except for the attached feet. They'll probably use a foot pulse ox. and will need access to her feet. Pants and shirts and socks are best in the NICU, or gown sleepers, or footie pajamas with snaps, because you can unsnap just her foot, or just her tummy and you can lead wires through the holes between the snaps. My NICU said absolutely NO zipper sleepers because they can't work the wires around them.

[UptownZoo]

My favorite idea, for families that are close enough to the hospital to be staying at home, is a food shower. Having a freezer stacked full of homemade meals (ask that the directions be taped to the top) prevents you from living on eggs, sandwiches, and pizza for weeks on end.

[CorasMama]

re attached feet. The woman who gave us the NICU tour suggested we use their shirts, if she'll be wearing one at all, but add color and personality and warmth with our own hats, socks, and babylegs. The socks + babylegs means they can have easy access, and apparently the babylegs are good for holding tubes and wires and whatnot out of the way where they won't get pulled on.

[MotherWhimsey]

I totally forgot about babylegs. they are teh awesome!

[preemiemamarach]

Originally Posted by MotherWhimsey

I totally forgot about babylegs. they are teh awesome!

Amen to that! Honestly I don't think we could ever have too many babylegs. In fact, I've been meaning to get some toddler-sized babylegs to use when DS is hospitalized these days, as they make diaper changes so much easier than hospital pajama pants do.

Another two things I would recommend- pacifiers and receiving blankets. Since Fiona will be NPO for a while, the pacis can help satisfy that sucking drive. Hospitals generally only have one type available, so it might be nice for someone to do a paci bouquet with multiple types to see what she ends up liking.

I am thinking of the receiving blankets for after she comes home- they are fantastic, rolled up, for sleep positioning.

Oh- if you are a coffee drinker, and they happen to have a coffee shop in the hospital, get gift cards to it! There was a Starbie's in the hospital where DS was born, and I probably spent $10 a day there while he was in the NICU. Also wouldn't be a bad idea to get vouchers to the hospital cafeteria, too. You could have a family member contact social work at the hospital now to find out how to procure them, then the family member can pass that along to everyone else.

WARM slippers. My feet stay cold in the hospital year-round, and there's something comforting about having night clothes on at night so you have some differentiation between night and day, as they start to all run together.

Last thing for now- and I just thought of this four days ago- linen spray. I was in a sleep room in the hospital Monday (DH stayed with our son), and it was nice- except the linens smelled strongly of the hospital. It would have been nice to have a little scent of home on my pillow.

Oh, one other thing I've started doing that isn't really a registry thing, but just an organizational thing- I keep an inventory in a suitcase pocket of what I need for an inpatient stay. Mine is something like:

-underwear for me
-socks for me
-pajamas for me
-2 changes decent clothes for me
-phone charger/laptop and charger
-3 changes clothes for baby
-3 changes clothes for toddler
-DVD's for toddler
-emergency cash ($50)

you get the idea. There are three benefits to doing this for me- first, I can keep the suitcase mostly packed all the time and not have to freak out when we have an urgent admission. Second, I don't have to *think* when I refill the suitcase, I just follow the list. Third, if I need for someone to pack it or refill it for me, they have a list to follow.

if there is ANYTHING you must have (medication, special diet, etc.), make sure there's an emergency supply in your bag. My poor husband had to drive 5 hours in a blizzard to get some additional formula for my son when we forgot it over easter weekend last year. I now have cans squirreled away everywhere.