Neonatal and pediatric intensive care units can be intimidating places. Unless you are in the field of pediatric medicine, you are way out of your element and it can feel like they all know more about your baby than you do. I am going to share twelve tips that can make ICU time easier on you and your baby.
1. Understand your baby’s condition. Go ahead and google reputable sources. In the two hospitals we did time in, I got the clear impression that the doctors did not want parents reading up on the internet. They felt that it filled their heads with unwarranted hope and misinformation. I disagreed. Reading about cutting edge technologies or other children’s miracles and successes helped me to formulate questions that needed to be asked and to stay encouraged. It also helped me to stand up against doctors’ suggested procedures and care orders that I was uncomfortable with and not convinced about.
2. Try to be at your baby’s bedside for rounds (when the doctors change shifts they walk around the floor and share information about each child’s current status.) Every change or happening from the night before or planned for that day will be discussed amongst the doctors and nurses. This is your chance to be apprised of every detail concerning your baby. Some NICUs and PICUs do not welcome parent eavesdropping or participation during rounds, but don’t be deterred. Ask for a clear explanation of why you should not be there to hear the details of your child’s day. You are your baby’s primary advocate. It is imperative that you are able to hear and understand what decisions are being made and why.
3. If you do not already have a blog, set up a Caring Bridge type of website (easy and free) to communicate your baby’s updates to family and friends. Using social media to broadcast messages means you only have to say (or rather, type) the information once and everyone can read the news. It also provides a wonderful way for those who care about you and your baby to let you know they are thinking of you.
4. Ask the neonatologist or attending physicians for verbal notification of all written changes to your baby’s medication orders and care orders. Make sure you understand why the change is being made. Some hospital units are very open and will not mind you reading your child’s daily sheets which include all doctors’ orders. Other hospitals, or even other units, may not allow you to view your child’s paperwork without an attending physician present. It can be difficult to get a “date” with the attending physician to read up on changes. So, to avoid confusion about care and meds, I found it easier to ask to be notified of changes. If you find your request is not being honored, go higher up the chain. It is your right to know every detail of your baby’s care.
5. If your baby will be camping out at the hospital for a couple of weeks or longer, ask that physical therapy be provided to the extent that your baby’s condition permits. If your baby will not be fed by mouth for any period of time, request therapy to maintain oral abilities and interest. It may seem odd to focus on things like this when your baby is very sick, but it is important.
6. Bring your baby’s favorite music cds, a sound machine, crib mobile, hanging toys—whatever you can—to his hospital room. This is tough to do at first because it feels like admitting that your baby is not just zipping through. Once you get over that, you’ll be glad you did it. Your baby will appreciate hearing music instead of just the monitor alarms. Any positive stimulation is a good thing.
7. Be aware that you have choices concerning your baby’s feedings. You can breastfeed your baby if you want to. If you are told that you cannot feed because your baby is fluid restricted or must have all of his fluid measured, ask for your child to be weighed before and after breastfeeding to determine the amount of milk ingested. If your baby needs a higher calorie milk, you can use whatever formula you prefer including Organic Similac (which the hospital most likely has) or Baby’s Only Organic. If you are told your baby will be getting corn oil added to his diet, you can insist that a healthier oil be used. We agreed to organic olive oil. I would recommend requiring that no new “foods” be added to your child’s diet without your notification and approval.
8. Get to know your baby’s primary nurse. She will know everything that goes on with your baby and it is important to be comfortable with her. If you cannot build a good rapport with her, ask for a different primary to be assigned to your baby. A good primary nurse can make a huge difference in the care your baby receives. If the unit your baby is in does use not the primary nurse model, make daily notes of the nurses who care for your baby. You can refuse specific nurses if you feel uncomfortable with any of the care provided to your baby.
9. Purchase some front-snap/closure onsies and sleepers for your baby to wear in the hospital. These are the easiest to put on over and around wires and tubes and the easiest for nurses to break into for vitals checks. Seeing your baby dressed can actually help you to feel better and your baby needs to soak up those good vibes.
10. Ask about support resources. Is there a Ronald MacDonald house or family room (or the equivalent) nearby, are free long-term parking passes available, can breastfeeding moms get free food trays, what religious services are available, can long-term patient parents get cafeteria discounts, can hand/foot printing or casting be done?
11. Don’t hold your baby down to help with a procedure. In fact, if your baby is a newborn, do not be involved in anything that will be uncomfortable for him. Do not be in his sight or let him hear your voice during any procedures. Your baby does not have a built up sense of comfort by your presence like a toddler would. You do not want your baby to associate any discomfort or fearful feelings with you.
12. Keep a journal. Write down names of nurses, doctors, medications, and procedures. Write down your feelings, your questions, your hopes, and your sorrows. Things blur together in the hospital and it might matter at some point that you remember things accurately.
Do you have some good advice for parents whose children are in NICU or PICU? Please share in a comment or let me know if you have posted on this topic and I will link to you.
Lisa, over at Finnian’s Journey, shared these sage words in a comment on the NICU Tour post,
“I would just add that new parents shouldn't be afraid to advocate for their baby in the NICU. When you're surrounded by so many authority figures in white coats, plus dealing with post-birth hormones and fatigue and perhaps a surprise diagnosis of Ds, it's easy to forget that you're actually this child's parent and that you have rights. Do your homework. Not every procedure is absolutely necessary, and some aren't even necessarily in your baby's best interests.”
Cori's post: Begging to Bring Joey Home
Lisa's posts: Advocacy Starts Early
Hospital Stay/Learning to Eat
Sasha's post: Our Heart Journey: Things I've Learned