I asked a NICU nurse just this question, what would you want parents to know?  She shared her wisdom, and here are some tips that this 20-year veteran has. A nurse’s tips for surviving NICU.

NICU life is hard, there is no question about it.  But, there are some things that will help you, some nurses tips for surviving a NICU stay.

There are emotions running rampant, tears too often streaming, decisions to be made and questions to be answered.  So many families who find themselves in this place don’t want to be here and don’t feel like they can clearly navigate the realm of doctors, specialists, nurses and constant beeping that is, life in the NICU.

What if you could just sit down and have a chat with one of those nurses, the ones that see your baby daily, they hand you the tissues sometimes or sometimes say the right thing at just the right time, what would they want you to know about surviving the nicu?  I did just that and here are some answers from my friend, thanks Kerri!

1. ASK

There are so many things you can ask for, and they will be provided, but you have to ask.  Maybe your stay was sudden and unexpected, it’s okay, ask if they have toothpaste and deodorant, most hospitals do.

Trying to sleep in a bedside chair?  Ask for an eye mask and a pillow.

Are you a breastfeeding mama?  Many hospitals will comp all your meals while you are feeding/pumping for your baby (the patient that they don’t have to feed formula to).

Did baby come before you ever got that car seat?  Just ask, often you can get help as those hospital bills are a cost, as is gas and other necessities you aren’t even thinking of, just politely ask if there is anything available that you need.

2. Babies of Actively involved parents do better

It can be so intimidating to just let it all happen, and sometimes retreat, but according to this nurse, the more actively involved you are the better your baby’s outcome will be.  I know it can be so hard to sleep in a chair, have other children at home, have no semblance of normalcy, however, when you are there decisions are not postponed and you can ask for what your baby needs.

Do you feel that something is not sitting right?  Ask for a second opinion and don’t take “no” for an answer.  Many children’s hospitals have multiple locations and if you are in a smaller one you can often ask to be transferred to a larger one free of cost for better care.

Make your baby’s small space seem more like home, a few pictures of mom and dad, a special blanket from home, do what you can to make the environment just a tad better.  Many hospitals have mobiles and other toys for baby to look at, some will let you bring these items from home, just ask.

3. Learn how to do it all

Start the classes on how to insert and change NG tubes, monitor oxygen flow, or care for your little one’s incision as soon as you can.  Often when you are hands-on and very involved, your baby goes home significantly sooner.  Stay round the clock for feeds if you are able, often your baby will respond better to you than a nurse and that is good for all involved.

4. Be involved in Rounds

All hospitals have rounds, depending on the hospital you may have to be more assertive in being able to be involved, but do so.  This is your baby that doctors are making decisions about and you need to understand the why and be involved, being a self-advocate never was more important than now.  Keep a notebook, write down terms you are unfamiliar with, write down names of doctors (there are always so many) and ask the nurses later to decipher if necessary.  Making sure you are present at rounds also keeps tests from being delayed, and decisions from being put off.

5. Keep a Question journal

Keep a notebook at all times, when you wake in the middle of the night with questions, write them down.  When you google and find concerns, write them down so you can ask later.  Keep it handy and refer to it often, that way in the sleep-deprived haze that you are in you can at least recall some of what you need to know.

6. Remind yourself that you are the parent

Yes, all of the doctors and nurses have a job to do, to help, but they do not know your baby as intimately as you do.  If you notice something, for instance, your baby will eat more when not under the phototherapy lights, or your baby seems very restless and gassy, advocate for your babe.  I was that mama who said that I would not allow frequent rectal temperatures as I felt them unnecessary, I had to very much advocate for this one because the response I got was “that is how we do it.”  I simply said, no, you can do that if when you take a temperature another way it appears elevated.  I felt that my little one didn’t need to be prodded there every few hours.

7. Take care of you

I know this seems silly, but it is so true.  Something as simple as good nutrition is very hard to get in the midst of a NICU stay.  When people ask what they can do, request homemade food, juice smoothies, drink lots of water, journal your feelings, and know that this will not last forever.