Advice- NICU, newborn travel

[caramia]

I have all kinds of questions, so I hoped you wise ladies would have answers. For background, I'm 27 weeks w/my first, who has spina bifida. On May 7, H & I are traveling to CHOP in Philadelphia for monitoring. I'll stay there until baby is born. She'll need spinal surgery ASAP, and maybe a shunt installed for hydrocephalus, followed by a NICU stay. She might be premature depending her health. Right now, she's measuring 2 weeks behind, so I'm assuming she'll be small. Once she's out of the NICU, we'll fly back home (two 2 hour flights + layover). So...

1. I'll be in Philly for up to 10 weeks before baby comes. H is coming home, then flying back to Philly later. He'll bring the car seat & diaper bag then. What should I pack in the diaper bag for the NICU stay and flight home w/ baby?
2. I thought wearing the baby on the plane would help calm her. I have an Infantino Sash Mei Tei & a Seven Everyday Sling. Both say the lower limit is 8 pounds. Any suggestions for a newborn carrier for an even smaller baby? I know she could be 8 lb but I wanted to look into a carrier for a smaller baby to be prepared.
3. Any tips for traveling with a newborn? I think the oldest she'll be is 6-8 weeks when we can come home, but earlier is possible.
4. Any NICU tips? I want to breastfeed & the NICU has pumps available.

Thank you! I'm dealing with all this by controlling what I can.

[wavepool]

I don't have any newborn traveling tips, but for NICU, you don't need much for the baby. Bring a few blankets, bows, and outfits that you want her in once she is in special and family care. I also read a lot of books to O when he was in there, so maybe some of those? You should get enough diapers and wipes when you leave the hospital to get you home. If they're not giving them to you, ask for them and they will. If you have a Kindle or iPad, bring that! Long hours sitting by the bed.
For NICU pumping, bring steamer bags. Ours had some, but not always, but they did have a microwave to use for cleaning. I also asked them for two sets of pump parts, which they gave me. Buy some sterilizer pump wipes to use, too. They have all the bottles, lids, and bags for you to pump in to, so you shouldn't have to worry about bringing any pump supplies, except a pumping bra! Buy the simple wishes hands free bra from Amazon!
I also used the lactation consultants a lot. They would come to feedings and help out, which was really great and made me feel better about how it was going.

You'll be in my thoughts! I hope the time passes quickly for you and the best wishes for health for you both!

[caramia]

Apr 26, 2015 13:35:59 GMT -5 @fivedogs said:

I would plan to use the carseat on the plane, and hold her if she needs comforting. You can talk to the pediatricians, but it doesn't seem like using a carrier for that length of time would be a good idea for a newborn after two surgeries, especially if you have to keep her in certain positions due to her condition. A car seat is safer for all kids, but particularly for kids with certain health issues and special needs (low tone is one).

thecarseatlady.com/airplanes/

csftl.org/leaving-on-a-jet-plane-the-csftl-guide-to-safe-air-travel-with-children/

I was hoping you'd respond! That's a good point. So we'd need a seat for her & the car seat, wouldn't we? I'll make a note to ask her doctors.

[caramia]

Apr 26, 2015 13:32:05 GMT -5 wavepool said:

I don't have any newborn traveling tips, but for NICU, you don't need much for the baby. Bring a few blankets, bows, and outfits that you want her in once she is in special and family care. I also read a lot of books to O when he was in there, so maybe some of those? You should get enough diapers and wipes when you leave the hospital to get you home. If they're not giving them to you, ask for them and they will. If you have a Kindle or iPad, bring that! Long hours sitting by the bed.
For NICU pumping, bring steamer bags. Ours had some, but not always, but they did have a microwave to use for cleaning. I also asked them for two sets of pump parts, which they gave me. Buy some sterilizer pump wipes to use, too. They have all the bottles, lids, and bags for you to pump in to, so you shouldn't have to worry about bringing any pump supplies, except a pumping bra! Buy the simple wishes hands free bra from Amazon!
I also used the lactation consultants a lot. They would come to feedings and help out, which was really great and made me feel better about how it was going.

You'll be in my thoughts! I hope the time passes quickly for you and the best wishes for health for you both!

Thanks! I added steamer bags, wipes, and the bra to my Amazon cart . This is a dumb question, but do you wear the pimping bra all the time or change into it when pumping? I'll also pack some books- I've already bought waaaaay too many, so I'd better get my money's worth.

[wavepool]

Apr 26, 2015 13:51:20 GMT -5 caramia said:

Apr 26, 2015 13:32:05 GMT -5 wavepool said:

I don't have any newborn traveling tips, but for NICU, you don't need much for the baby. Bring a few blankets, bows, and outfits that you want her in once she is in special and family care. I also read a lot of books to O when he was in there, so maybe some of those? You should get enough diapers and wipes when you leave the hospital to get you home. If they're not giving them to you, ask for them and they will. If you have a Kindle or iPad, bring that! Long hours sitting by the bed.
For NICU pumping, bring steamer bags. Ours had some, but not always, but they did have a microwave to use for cleaning. I also asked them for two sets of pump parts, which they gave me. Buy some sterilizer pump wipes to use, too. They have all the bottles, lids, and bags for you to pump in to, so you shouldn't have to worry about bringing any pump supplies, except a pumping bra! Buy the simple wishes hands free bra from Amazon!
I also used the lactation consultants a lot. They would come to feedings and help out, which was really great and made me feel better about how it was going.

You'll be in my thoughts! I hope the time passes quickly for you and the best wishes for health for you both!

Thanks! I added steamer bags, wipes, and the bra to my Amazon cart . This is a dumb question, but do you wear the pimping bra all the time or change into it when pumping? I'll also pack some books- I've already bought waaaaay too many, so I'd better get my money's worth.

For the bra, I just left all my clothes on and had the pumping bra in my bag. I would pull my shirt up/to the side, pull my nursing bra cups down, then zip the pumping bra right over the top of all that. It was nice because then I'd just close my eyes for a bit, read, make a phone call, anything to not just focus on the pumping part.

[formerlyllizzyb]

I'd suggest a moby or stretchy boba wrap.

[sarahsas]

Know that in the nicu she probably won't be able to wear clothes due to all the monitors/IV/wires. Cute hats and blankets are all you could add to make it personal. Once my baby lost a few wires they put one of those little snap shirts on him like a toga (only went over one arm). Our NiCU provided me with equipment to clean my pump parts and everything I needed to store it. Bring lanolin for your nipples- use it even when not sore, they help prevent soreness and cracking (which can happen while pumping for sure!)

Anything else to make yourself comfortable while he is in the nicu too. I liked slippers - more comfy!

My baby was only in the nicu for less than a week, but a lot of the families with babies in for a longer period made signs and banners with their baby's names and info on to make the nicu room more homey. So maybe some markers or something to make one of you're interested!

[kershnic]

For the Ba

[longtimenopost]

DD is a former 26 wkr. We spent 12 wks in NICU and she has hydro and a vp shunt. Thought dump:
-I agree the nicu should have all the pump accessories and cleaning supplies you need.
-I had about 3 simple wishes bras and initially wore them under my shirts so I could just lift and attach. When we started trying breastfeeding, I wore nursing tanks and would unlatch the panel and put the bra on over to pump.
-Bring a button down or shirt with a deep V for kangaroo care.
-definitely bring a tablet to read or stream Netflix.
-you'll need comfy clothes and slippers with solid bottoms.
-I started wearing DD in the ktan at about 6 lbs.
-I would get baby a seat on the plane so you can put her down while she's sleeping.

Let me know if you have any questions!

[kershnic]

For the baby for the NICU and plane ride you won't NEED much of anything since the hospital will provide. Pick out a coming home outfit for sure, and you may want to use some personal touches like hats and blankets while you're there but they're not needed. My babies were under lights for jaundice for a good part of their NICU stay which meant no clothes were allowed. Also until lights were off and iVs out only clothes with snaps were allowed.

I agree w five dogs about the car seat - at least ask her doctor - but remember that using a car seat means you have to buy her a plane ticket.

Are you staying at Ronald McDonald Hiouse or something like that after baby is born? You'll have a little time to shop if you need because you'll need a break from the hospital.

For your bedrest time bring lots to do - books, iPad, etc. Also bring an eye mask, hospitals are hard to sleep in.

[kershnic]

Oh NICU advice!

Yes - shirts that button or zip down the front so you're not naked while doing skin to skin with baby.

Also yes to simple wishes bra. Know that you need to pump 10-12 times per day to bring your milk in and build supply. They may be slow to let you start bfing but don't freak out about it, babies can learn even after getting used to bottles. We requested that they use slow flow nipples on bottles and the nurses acted like we were crazy but I'm so glad we were able to stand our ground on that. At my NICU they theoretically supported breastfeeding but I felt I had to advocate to get them to pay attention to it. Be polite but ask them every single question you have. Ask what you can help with. Probably this will be feeding and diaper/temp on a strict every 3h schedule. If you don't like the nurses answers about something medical ask to speak to the neonatologist. But do make friends with the nurses. They run the show and can make your life pleasant or not.

[Brie]

I'm not sure what your living situation will be, but I'd recommend looking into a Ronald McDonald House near CHOP for while she's in the NICU if that's an option. It's a great organization.

[CloudBee]

I wonder if a rental car home over 2 days would be easier on all of you? She will probably still be sleeping long stretches, won't be exposed to as many germs (possible preemie, surgery, etc.), and you may have a lot of stuff accumulated by the time she's discharged.

I'm not sure if I would bother taking the slings with me at this point. I would wait until birth and then have a friend send a handful of items in the mail a week before discharged. Maybe snag a few flat rate boxes in advance, and lay a few undecided items you might want on the guest bed at home?

Regarding pumping supplies - I would actually expect the hospital, especially CHOP, to be able to manage your pumping needs. Large hospitals usually cater to pumping moms in NICU's. I never had to sterilize parts when I pumped in the hospital. You might want to call and ask questions. I was also given 2 sets of parts when we were in the hospital, and the hospital gift shop had nursing bras and Medela supplies. Might be worth a call to get more insight.

Ask about laundry facilities for personal items during your stay, and as @brie mentioned, look into the RMD House. You may be able to connect with a coordinator in advance to walk you through the process. They also are known to make their laundry facilities available to parents who are staying with their children in the hospital for extended periods of time. So even if you are able to sleep in a room at CHOP itself, alongside your baby, you may want to tap into RMDH resources. A friend recently did this when her daughter was in the hospital for 2 weeks.

Remind yourself that you can order everything and anything on Amazon, and have it delivered to the hospital. You're going to be far from home, so less will be more. Wait until you have a better sense of what will work for your daughter, before buying more else. If you haven't bought the car seat yet, you may want to hold off on that, too, and have it delivered to the hospital. If it's from TRU, etc., return it locally and re-purchase before you flight or drive home.

[Poppy]

No experience with NICU, but you might like the soothe shirt (it's also a nursing shirt). www.amazon.com/gp/aw/d/B00P9WCOP8/

[SallySparrow]

Our NICU supplies anything needed for pumping/breastfeeding moms and we strongly encourage it. And we're kind of little and in the middle of nowhere, so I have to imagine CHOP would have what you need.

As far as clothes for baby, gowns are better than anything with buttons just because of all the wires. Snaps are fine, just a convenience thing.

And ditto taking care of yourself, too. I'm a NICU nurse and it kills me to see our moms running themselves ragged when they really need a good meal and some good sleep. Especially if you want to BF/pump. I swear no one will judge you for taking time for yourself, too.

Good luck! I hope your stay goes by quickly.

ETA: and ditto gravy about calling to check in if you aren't there. We are never too busy to give you an update, there is never a silly question. That's what we're there for.

[hopecounts]

a suggestion to help with bringing in your milk while pumping, if possible use your phone to video the baby so you can watch her while pumping. If this isn't allowed there's an app that has video/recordings of baby's that might help until you can
The 'mom' hormones that kick in from seeing your baby or hearing any baby cry will help get things going.

[Deleted]

Good luck!

Advice for pumping--be religious about your schedule. It is so hard to do but I really wish I had been better because I ended up getting mastitis I think partially because my schedule was wonky. Seriously always pump every 2-3 hours.

Once you get masters or plugs they are way more likely to reoccur which sucks.

Ask for a lactation consultant to sit with you the first day and make sure you have the right flanges and help you figure out a good speed setting.

I agree Simple Wishes bra is the way to go. I bought two so I can have one in the wash.

I also recommend lecithin supplements. They have almost no negative side affects possible and can help prevent plugs. I didn't have a NiCU baby, so you may want to double check.

Drink TONS of water. Gatorade has been good for me too.

[Pilsy]

I'm a lone wolf with my love for the PumpEase bra, rather than the Simple Wishes. Check it out if you're still in the market.

I'll keep you and your sweet girl in my thoughts and prayers. You are a brave, strong mom!

[penguingrrl]

It seems like everyone has given you wonderful advice, but I wanted to let you know you and your baby are in my thoughts. Sending vibes that all goes as smoothly as possible for both of you!

[sent]

Our NICU gave me as many pumping parts and bottles as I wanted, but no cleaning supplies. It would've been very helpful to have a bottle brush to clean all those parts all the time. They did give me green Palmolive soap which was fine, but I really needed a brush. Also you can refrigerate parts between pumps. Put them in a ziplock bag in the fridge. After a while, pumping takes a toll on you so not having to wash parts all the time will help. You need to pump at least 8x a day. Your body has to build prolactin receptors and the frequent pumping is how it does it. I didn't believe the LCs because they couldn't give me any science behind why I had to pump so much, just that I HAD TO do it. I didn't believe them and my supply probably never got as high as it could have. Also our NICU had everything and we were only allowed to supply blankets and hats for personalization. I would check first what you can bring for the baby.

It is hard to convey this now since your baby isn't here yet, but my baby was sent home at 4 lbs and given an ok to breastfeed. It was a miserable experience for us. She wouldn't get full and I truly believe it is because she was too small to breastfeed like a 7 lb NB would. I wound up pumping and feeding her this way for months. I'm just putting this out there because if things are stressful, no need to add another stress to it. It is ok to pump and bottle feed if that is what is working for you and her when you leave Philadelphia for home.

Good luck and can't wait to hear your updates!

[celiacmom]

I'd love to send you some lactation cookies from my business when you deliver (or prior to delivery) as a gift. Please pm me. You and your family are in my prayers!

[jessnpaul]

One thing about the spine surgery - will she be in some kind of brace? My son had spine surgery when he was little (before age 2) and he was in a brace for 3+ months. That might affect how you are able to take her home so make sure you know this beforehand.

If she does need a brace, make sure you get onesies that wrap. Like this: www.diapers.com/html/sg/kimono-style-onesies.html. This will make your life (and hers!) so much easier!!!

[caramia]

Thank you! I knew you guys would know everything

I'll hold off on buying anything else until I know what CHOP provides & have a better estimate of how premature/small she'll be. Unfortunately, we already have a car seat, purchased before her diagnosis...that's what I get for being prepared. Hopefully it'll still work.

We're on the wait list for the Ronald McDonald House in Camden, NJ- the one in Philadelphia doesn't allow pregnant moms to stay there. I looked into driving & it's about 33 hours non-stop, so I don't think that's going to go over well - it would take like 5 days with stopping to feed baby & give her a break from the car seat I'll have to check on any time limits she'll have in the car seat too. You guys have given me a lot of good stuff to think about. I'm probably just going to print this thread out & put it in my notebook that holds everything of importance.

[caramia]

gravytrain225, thank you for responding. I remember reading, and crying for you, when your son was born. You inspired me then, and I hope I can handle all this with 1/2 the grace you showed.

[jessnpaul]

We looked into staying at the Ronald McDonald House when my son had surgery in Philly however they would not guarantee us a room we had to call that day to see! This was the Philly location... not sure if Camdan is different.

[redheadbaker]

I know we don't "know" each other, but if you need anything -- someone to deliver snacks, reading material, just someone to visit and talk to -- feel free to PM me. I'm just a short ride from CHOP.