advice compiled from nicu nurses across the country... believe me.. they've seen a bunch of us crazy eyed parents... they've got some good advice here. (and ways to make their jobs a little easier.) take heed.
- take care of yourself! moms, that means you need to take your pain meds, get plenty of sleep and make sure you heal up. the baby nurses don't want to have to work on adults. if you pass out in the nicu it ruins their day.
- take a break from the nicu. one nurse said:
"You still have your outside life and possibly your other children. Your other kids need you too. This is an emotional time for them and when mommy and daddy are at the hospital with the baby all the time it can make them more anxious. You need a break once in awhile to keep your sanity, don't feel guilty if you need a break. Realize that your worth as a parent isn't tied up in how much time you spend at your baby's bedside. I hear moms tell me all the time that they feel bad because they aren't at their baby's bedside all the time. Please don't feel bad about that, you have got to take care of yourself and your family too."
- admit you've got a problem. it's the first step right? well, you've got a baby problem, a time problem, quite possibly a financial problem, a logistical problem and a heartache problem. you're going to need time to get over not only regular ol "baby blues" but the loss of your delivery. for dads this isn't as crucial... but you'll experience some of it too (maybe only in fallout from your wife). mommies we've spent MONTHS preparing for our little one to come.. gearing up in our mind for the delivery, decorating the nursery, being showered, dreading stretch marks, taking classes, reading books... all of that.. then.. wham. that picture in our mind is eaten by cookie monster. just ripped out of our hands and gone. and we've got to deal with the fact that we may not have the stretchmarks to wear with pride. we may not have the natural childbirth. we may not have the perfect homecoming a few days after delivery with the stork sign up in the yard. heck- most people will forget you had a baby by the time you bring them home! (if you're in there for a stretch like we were.) so grieve. cry. let it all out. and don't be ashamed to seek counseling.
- join a support group. many nicus have scrapbooking or parents' groups. join up! at the very least i would recommend a message board online. i love my bumpies. and also enjoy some time on babycenter. if it's possible and not too weird, it's also nice to talk to your baby's pod mate, or roomate, or next door neighbor. chit chat with parents while scrubbing in. i've gotten to know some of the mommies from my nicu, and have really enjoyed the time talking to them, and even rooming in with one. (thanks patty!) this especially goes for those of us spending MONTHS in the nicu. you're going to be seeing a lot of each other. might as well enjoy some conversation. but remember not to get discouraged by their baby's progress. (a lesson i had to learn- patty!)
"While we encourage you to form supportive relationships with the other families, don't get caught up in comparing progress. Your baby is an individual and may have an easier or harder experience than your friend's baby."
"A good NICU parent is the parent who knows their own situation and hurdles, and doesn't compare to the hurdles of another. No two NICU babies are ever alike. There are always extra variables! While all of us in the NICU have a common bond, the life of a baby who is sick and faces odds, we each face our own personal struggle, our own hurdles. So always remember we can never judge one baby's prognosis by another's, or one family by another."
- if you have a problem with a nurse, talk to someone about it. the charge nurse or head nurse or nurse manager. they can actually fix the problem most of the time. this is something that was listed by multiple nurses. we definitely had nurses that were "banned" from caring for our daughter... all for reasons of incompetency, not friendliness issues. (of course, if they were really incompetent i suppose they wouldn't have a job would they?) it can be tempting to bad mouth a nurse to the other parents, but fight the urge. if it's something dire talk to someone in charge.
"Try not to compare your experiences with specific nurses with the other families. Every nurse is different -- with different personalities, good days and bad days and different responses to stress. Give each family a chance to form their own opinions, based on their own experiences."
"There are lots of "right ways" to do things. Some nurses may chat with you about everything, others may simply answer your questions. One nurse may seem quite serious and detailed, and another carefree and relaxed.....all may be giving excellent nursing care."
- trust. this is suuuuper hard. but something that you just have to give yourself over to. try first by opening up to a nurse that seems friendly and competent- they're the ones that made me feel the most comfortable and helped me to rely on them without hating them. (which sounds weird... but after all, that's MY baby they're keeping in there!)
-ask as many questions as you need to to understand... it is OVERWHELMING, and it will be for a while. but it does get easier. if the nurse doesn't know, ask her to find out, or speak to the doctors.
"In my opinion, the best NICU parents are the ones who can be abreast of their babies' care and gain knowledge. They are active, in whatever capacity they can participate, in understanding therapeutic care."
-keep a journal. this is something i tried to do about 6 times. i'd start and stop. i really wish i would have kept with it. it's something that will prove invaluable to you in dealing with your baby's care. continuity is the number one complaint with every single mommy i talk to. EVERY single one. it did help me on one occasion when night report had been passed on erroneously, then the day nurse didn't know wren, and then gave report to the docs, who then made a decision based on that. luckily i'd kept my trusty notebook around that time and could show them just how her sats had been trending, the oxygen requirement she had needed, the meds she'd been on... etc. etc. i'd recommend keeping track of feeds, oxygen issues, spit ups, toleration of meds/fortifiers, diaper issues, etc. especially the things that are pretty subjective from a nursing perspective. also, if you're there for an "event" and know much about it... you can keep track of those. we had one nurse who was just a nervous nancy, and would chart every cyclical desat as an "event"... leaving the doctors wanting to practically re-vent our poor kiddo. (but really, it was just that particular nurse's unfamiliarity with our daughter.)
-if you can tell there's something "different" with your baby, let the nurse know. you won't feel like it at first, but after a short while you'll come to find out you know your baby better than anyone. any given nurse may only have a baby once or twice in their entire stay- but the parents see the baby much more frequently and for longer periods of time.
"The best NICU parents respect the therapeutic opinions (the wise ones) of the medical core team, however, aren't afraid to ask questions and be proactive in the care of their children. "
- give that baby breastmilk!
"If you are physically able to pump then do it! This is something only you can do for your baby. You must pump frequently! Just as if you have a hungry infant wanting to eat every 3 hours. I have had mothers tell me they pump twice a day then express shock that as the baby grows they can't pump enough."
- don't worry about the other patients. this is especially pertinent in open units. don't judge the parents who aren't there, they could be back at work, saving up FMLA for when baby comes home, or they could have other small children at home. if you overhear something about the condition of another patient, keep it to yourself.
- act accordingly in the nicu. i've heard some horror stories from people about families fighting, and people being rude... just keep in mind where you are and what's going on. remember to listen to the nurses, and follow their instructions. as parents this was very hard for us.
"Stay off your laptop and cell phone while holding your baby or sitting by the isolette. We don't mind you sitting, but to an extent it looks like you are actually working at the bedside and trying your best to eavesdrop. Lower your voice, other parents are in the room. Their baby might not be doing as well as yours, show them respect as well."
"Remember and understand that your baby is our first priority....even over your feelings. If we have to tell you 'no holding for now' or please be less noisy, we are definitely not trying to hurt your feelings but are only acting in the best interest of your baby."
- act accordingly in regard to visitors. this means limiting them sometimes... this means educating them on how to handle your baby...educating them on infection control, how to scrub in, keeping them out if they're sick... and educating them to not ogle the other babies or ask the nurses questions about them.
- bring your baby back once in a while. almost all the nurses i spoke with expressed their joy in seeing their work later on down the road.... happy and healthy! it gives meaning to all their hours of work on our little ones. (and as a mom, it's nice to go back to the scene of so much grief and show her off- 7lbs now!)
friends it's going to be a long road. but trust me, it will end- i promise.
a big thank you to all the nurses who gave their input to make this post possible!