When you are a parent in the NICU, I want you to get in the habit of asking questions, because it is vital to your becoming informed about your baby so you can be her expert, her advocate. You may not have any medical knowledge, but you're now on a crash course to learning, and if you don't learn it you're missing the chance to take some control in this pretty out-of-control situation.
I want you to keep this in mind as you begin asking questions - think of yourself as one of the vital members of your baby's team. You may not have any prior experience, but if you think of yourself as one of the partners on her care team, you'll give yourself permission to speak up, to participate. Your role is different on the team, and you're the rookie, but your role is important and you need to take responsibility for getting involved.
There are ways to use diplomacy, grace when asking your questions - when you demand, or seem threatening or confrontational, you'll likely receive less open communication in return. If you can try asking with a genuine attitude of "I respect you and your experience and your knowledge to share" you'll get a whole lot farther.
So, print this list, grab a highlighter, read through all the questions. Highlight the questions that seem appropriate for you and your baby, and take it with you when you next visit. These questions may be for the nurses, the respiratory therapists, the doctors, the physical therapists, the social workers... find a helpful person and start getting knowledge!! Add your own questions, these are just starters to get you on the right track:
- What is that equipment? (bed, monitor, wires, tubes, pumps, etc)
- When can I visit? Who can I bring to visit, and if I should limit visitors, why? If family can't visit yet, is there a reasonable time frame I can give my family when they might be able to visit more?
- Can I hold my baby? If not, what is the reason? And when can I look forward to this, because it's really important to me?
- Can I call? What is the number, and are there hours when it is better to call?
- How do you assign nurses to care for my baby - will my baby have a primary nurse, or will the nurses change frequently? What do I do if I want to request a nurse, or request not having a particular nurse?
- Why does my baby do that? (make snuffly noises, tremble, cry a lot, not cry at all, sleep all the time, have alarms ringing a lot, spit up, etc)
- I really want to hold my baby as much as is good for her - what is the policy here for holding? Do you let parents hold skin-to-skin (kangaroo care)? What is kangaroo care? What is my baby's tolerance for being held?
- I really want to breastfeed - what is the plan for using my milk? How and where do I pump? How do I properly store my milk? When will I be able to try to put baby to breast? Do you have lactation consultants, and if so how do I get one to help me when it's time to breastfeed? What if I decide against using formula?
- When will you call me - for emergencies only, for daily updates? Do you have my cell phone number?
- Are there support groups in the area for families in similar situations? If not, any graduates of the NICU who would be willing to call & talk? (If they have no information, maybe tell them about this website so they can tell future families about this source of support.)
- Can you tell me some success stories of babies who have graduated from this unit with similar diagnoses?
- Can I bring drinks in when I visit? food? If not, where can I eat? Where might I store some food if I plan to visit for a long time?
- What are the names of the medicines my baby is on? What are they for? What if it does not work?
- What tests have you done on my baby - blood work? Ultrasounds? MRI? Xrays? Why, and what were the results?
- Can I please be here for ... baby's first bath? baby's first bottle feeding? baby's circumcision? (please know that even with requests such as these, things like this may still happen without you there if that is the norm for that particular unit, so try not to become too attached to these events. Remember, when baby gets past this NICU stage you'll have a lifetime of new milestones to reach together.)
- Can I talk with someone on staff about post-partum depression?
- Is there any kind of financial assistance available, for meals? for gas to drive to the hospital?
- Do you schedule care conferences? If so, when can we schedule one for our family? (a meeting with several of your baby's health care team)
- What if we decide against surgery?
- Can I leave recordings of my voice for my baby? Can I leave a cloth with my scent on it for my baby?
I would suggest that you keep in mind, when you are asking all of these important questions, that while it is the nurse's job to educate and inform, they do have many responsibilities to the babies, so please be understanding of their need to get other work done. Your flexibility, your willingness to ask what works well for the staff, while still asking for what you want, will help you in the long run. Some ideas along this line:
- "I want to visit more, how can I visit more often and yet not overstimulate my baby, not interfere with the health care team's schedule?"
- "I really want to get an update daily, what's the best time to do that?"
- "What kinds of cares can I participate in regularly (diaper changes? temperature taking? baths? physical therapy?), and how can arrange it so that it works well with my baby's schedule?"
That attention to cooperative teamwork really will make this experience smoother.
Here's my question to you: what other questions have been important to you? Have you found it difficult to speak up and ask?