NICU Survival Guide

No one plans to have a premature baby. No one gets pregnant and sets out to have their baby early. I hope. You plan your nursery, you plan the birth, you plan the coming home… and then something happens that throws all those plans out the window. Babies are good that way.  Some moms have a little warning that their baby is coming early and others, like me, get about 5 minutes notice before they are knocked out and then wake up a mom. We read books and websites and blogs about pregnancy and birth and new babies but none of those prepare you for your baby’s early birth and stay in the NICU. While we had a pretty “easy” time of it as far as NICU stays go, it still would have been nice to have had some form of guide book or tip sheet to help us feel more prepared. So I thought I would put together a list of things I wish I would have known or that I think are important. These aren’t necessarily in order, by the way. I’m definitely not organized enough these days for that.

• 1) Since you probably already have determined if you are going to breastfeed or not, make it clear what your decision is and what you will and will not allow. This primarily affects breastfeeding moms. Most NICUs will advocate for breastmilk and you will get the use of a hospital pump. Baby G had a feeding tube for all but a few days of his NICU stay. Towards the end he was getting his feeds from breast, bottle, and tube until he got enough stamina to do all his feeds from breast and bottle. We knew that in order to go home, Baby G would have to be doing all his feeds without use of the tube so that meant bottles when I wasn’t there. Since I had always planned to EBF (exclusively breast feed) this upset me but I understood the need. I found out about two weeks in that they expected him to go home doing half his feeds by bottle. This meant more pumping for me. *sigh* But I’m glad I found out then and not right at the end. I also had them wait on bottles until breastfeeding was established. This might have extended our stay a little but it was important to me for breastfeeding to be what he did first.
• 2) Find out the hospital’s philosophy on touch, kangaroo care (skin-to-skin holding), and parent involvement with baby’s care. This is important. You need to know specifically what they believe and what their expectations are. If they allow touching (hand-hugging) find out when this is allowed and what circumstances would prevent you from doing so. How often do they recommend/allow kangaroo care? Are the parents allowed to be involved in general care (diaper changes, baths, etc). Touch is good for your baby. Kangaroo care is very beneficial for you and the baby.
• 3) Ask for a tour. My husband got a tour the first night but it was several days in when I got mine. What are the different areas/rooms, what is the progression through the NICU, is there a specific waiting room, is there a lactation room or can you pump bedside? Are there lockers for personal belongings?
• 4) Find out about what days they do what and when they will be ready for certain milestones. When is bath night, when do they get to wear clothes, when do they get to be held by someone other than mom/dad? That way you can be prepared. Also find out what you are allowed to bring in. We brought clothes, hats, blankets, a boppy, my robe, etc (I used the robe for kangaroo’ing). Make things as homey as you possibly can. I even had a drawer of snacks.
• 5) Take lots and lots of pictures. We took pictures every day for 38 days. They change so fast and have so many milestones and things term babies don’t have. Get pictures at weeks and/or month milestones with something constant to show size (stuffed animal, toy, etc). We didn’t do this and I wish we had. Get pictures of their beds and all the apparatus. If nothing else, I think Baby G will want to see where he spent the first 5 1/2 weeks of his life.
• 6) Get into a routine. I went to the hospital every day and spent most of the day. But I had to figure out pumping, showering, puming, getting dressed, eating lunch, packing dinner, pumping, driving, etc. So we finally got into a routine of when we’d wake up and how we’d do stuff in order to get us to the hospital around the same time every day. It helped things feel more “normal.” And helped us get there on time.
• 7) Speak up. YOU are the parent. Don’t forget that. Yes, there are other people taking care of your baby at this stage of the game but ultimately YOU will be taking them home. The hospital may have helped them be born and be helping them live, but you gave them life. If you don’t understand something, see #8. If you think something is wrong or needs to be changed see #9. If you want to be more involved (#9) say something. You should fully understand the situation in which you’ve been placed and you have the right to tell someone when you feel something isn’t right or you don’t understand it.
• 8) Ask questions. Again, this is YOUR baby. Sometimes the nurses/doctors get into a routine and sometimes forget there are people (parents) running around that are scared and confused and don’t understand the terminology or what all the tubes, wires and machines are. Ask if there are pamphlets of info. Go to http://www.marchofdimes.com/baby/premature_indepth.html (general info) or http://www.prematurebaby.ie/glossary.php (glossary of terms). Educate yourself but still don’t be afraid to ask fifty million questions. It’s your right. And you’re paying to be there anyway.
• 9) Get involved. Do whatever they will let you do. We could change diapers, take his temperature, change his pulse-oximeter from foot to foot, bathe him, etc. But we didn’t start out being able to do these things. It took some time before I basically took it upon myself to do them and stop asking or waiting for them to offer. This was MY baby. Why shouldn’t I change his diaper or take his temperature? Some nurses would assume we would do these things and others wouldn’t even offer. With those nurses I basically just stepped in and took over. If you were home you’d be doing these basic things so why not get in some practice when all the supplies are free?
• 10) Speaking of free supplies… take whatever they will give you. When we left we got whatever was left in his bed. Diapers, wipes, nose bulbs, baby soap, etc. Stock up on whatever you can. Again, you are paying for it. Also, our NICU tossed anything that hit the floor or was considered “disposable.” We snagged a paci or two that went on the floor and brought them home and disinfected them. They don’t have the time or the resources for this stuff but I’m glad we did because his preemie paci was the only one he’d use for the first 6 weeks he was home. And you can’t buy them anywhere. Get as many as you can.
•  11) As soon as you are possibly able, get your baby’s footprints and handprints. Our NICU did not do this automatically. He was several weeks old and over a pound heavier when we finally got his footprints. He was home before we got his handprints. I wish I could have gotten them earlier. If you can, get them multiple times to show growth. If they won’t do it, do it yourself.
• 12) Preemie clothes. Don’t go crazy with buying preemie stuff. They grow out pretty quickly but you will want some things for them to wear in the hospital. Baby G got his first clothes about a week in but was only allowed to wear t-shirts or onesies (no pants or footies) due to his PICC line for the first few days. Pre-wash a few things with dye-free fragrance-free soap. Also, hang dry them. 100% cotton baby clothes shrink and you want to get as much life out of these as possible and don’t want them to draw up. When they are ready for footie PJ’s (one piece) go for the snap up kind, not the zippered ones. That way there are multiple holes for the many cords and line to come out of. Label the insides with your baby’s name and designate a place in the area for dirty clothes/linens so the nurses know where to put them for you to take home. We found Carter’s stuff to fit the best (with the exception of some of their hats) because they are longer and slimmer and have longer legs than some of the other brands.
• 13) Baby Gear. Not all carseats are rated for tiny babies. Ours (luckily) was rated for 4lbs and up. Make sure whatever carseat you have or have picked out can handle a tiny baby. We also found that removing the shoulder pads that came on the carseat helped the straps stay on his tiny shoulders better.We have a pack n play that Baby G thinks is a torture chamber. So he sleeps in a swing or a bouncy seat that looks like a bassinet. Preemies often have reflux so sleeping on an incline also helps. I read on several online preemie groups that people had very good luck with this: http://www.toysrus.com/product/index.jsp?productId=12413335.Baby G does really well being swaddled at night so we have Swaddle Pods and swaddle blankets we use every night.I bought a car seat cover (not this one but similar idea http://www.target.com/p/Itzy-Ritzy-Peek-A-Boo-Pod-Rodeo/-/A-13997784) which is great for when they come home and you have to go out. Keeps people from getting too close because you can cover them completely. They make winter versions too that are warm and cozy. I highly recommend one of these.Most infant carriers (ones you wear them in) are rated for 8lbs and up. Baby G came home at 5lbs 6oz. The very best carrier I have found so far is a Moby wrap. They look hard to use and take a few tries to get it right but it is by far my favorite way to carry him. It is secure and holds them nice and tight. Baby G will sleep for hours in it and I don’t have to support his head or worry about him falling out. Something else I highlyrecommend. There are about a jillion youtube videos showing you how to use them too. I prefer the folded method. Which will make sense if you get one.
• 14) Keepsakes. Snag whatever you can from the hospital that shows their size or stay. I snagged his first paci (tiny little thing), a preemie diaper (he came home in newborn diapers), his blood pressure cuff, his first hat, his C-Pap hat, his bili-shades, etc. I plan to do a shadow box of all these things. Again, just things I think he will enjoy seeing when he gets older. And I’m sentimental. And a little bit of a pack rat.
• 15) Baby book. I found a baby book online that is specific to preemies. It has extra info that normal books (and term babies) don’t have. It was created by two NICU nurses and you can find it at http://www.earlyarrivalinc.com/.
• 16) Keep a journal. This can be a journal for you, for your baby, of the stay… whatever. I wrote down everything that happened. I also was given a journal by a friend to write down my personal thoughts and I chose to use this to write to Baby G. Now that I’m home I haven’t written in it much but while we were there I wrote in it often. You need an outlet for all the things you think and feel. Writing them down is a good way to do it. It also helps you remember those early days that seem to blur by.

This is all I can think of for now. I’ll do another post about what to expect when your baby comes home. But it’ll have to wait. I’m still pretty sleep deprived so it takes me awhile sometimes to formulate coherent thoughts and then transcribe them grammatically and with correct spelling. I do have an infant you’ll remember.