Tuesday, June 23, 2009

A Dozen Tips for Navigating NICU/PICU

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.

Your Turn
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


  1. I'd recommend leg warmers as part of the hospital ensemble as well. They can often be placed to accommodate most tubes, etc. and can also be worn on the arms or legs.

    I would also reinforce the importance of the parent's role as advocate in these situations. You don't need to be a medical professional to speak up. You are a professional when it comes to reading your child's behaviors and changes in normal functions. I heard, "That can happen in babies with Down syndrome" TOO many times as a response when I would voice a concern. Be prepared to speak up with, "But it's never happened in MY baby with Down syndrome and I'd like the behavioral change documented." (The loud breathing our daughter was experiencing that was chalked up to her Down syndrome diagnosis ended up being labored breathing that resulted in a collapsed lung less than 4 hours after we voiced our concern.)

    The expertise you hold in your baby's usual mannerisms will prove INVALUABLE when you're in a situation where your child's body language, etc. are being read by strangers and asking that any concern you voice be recorded as documentation reinforces the authority you hold as a parent and also reminds those caring for your child that an existing record will show if your input isn't considered in the care choices being made.

  2. I have done a few posts on our NICU experience. See for example my entry on Friday June 19, OurbundleofJoey.blogspot.com. I will also be doing a post in the next few weeks about our fifteen day stay in the PICU when Joey was two months old. I pretty much camped out with him during this stay. I slept there twelve nights only going home the three nights my mom was willing to sleep at the hospital with him.
    I had to again demand to take him home. This time they were keeping him because he needed a very small amount of oxygen which, when I spoke to the right person, said could be provided at home. As a result they set us up with the equipment and discharged Joey. Once again it took persistence. It amazes me that they were willing to keep him in the ICU unit longer just so he could be on what the doctor considered to be a whiff of oxygen.

  3. We just had a very short PICU stay following surgery and it was wonderful from communication stand point. The first commentor's remarks are invaluable. At the time of d/c, our little one spiked a temp, increased heart rate, refused to feed, and just acted "strange". The nurse practitioner tried to tell me he was just constipated. I refused to let her write the d/c orders until I knew he was stable. She actually said, "I don't know what you expect us to do here that you couldn't do at home." Um, IV antibiotics come to mind.

    A short time later, the surgeon came in and was very concerned about him. I reported her actions and poor judgement and he assigned us a different nurse practitioner.

    Advocate for your child!

  4. great advice! I especially like that you should get to know your nurse. They can be an incredibly valuable resource. Also, the family rooms. That was our refuge in the storm.

  5. If you think you will get a lot done (knitting, reading) when by your child's side in the hospital, think again. Nervous energy tends to make you not get much done. And also know that when you finally DO get back home, you probably won't be back to normal for a week or two. You will probably get more than average phone calls, and again, letting go of the tension and the experience tends to make you less than fully functional for a while.

  6. This is great advice! Being educated on your child's condition, being an active advocate (which includes knowing who is caring for your child; being updated on all medications, orders, procedures & changes to the plan; and speaking up when necessary), looking to your child for cues and trusting your instincts are important for any parent who spends time in the NICU/PICU. I'd add: try to eat as well as you can. If you are going home (or if others have offered to bring you food), prepare (or ask a friend to prepare) healthy food for you to take to the hospital (cut up fruit and veggies, grilled chicken, muffins, etc.) Protein bars & nuts are great to bring as well. Drinking plenty of fluids (especially for nursing moms) is a must.

    Also, TOUCH your baby (a firm touch/hold is best, rather than a light touch which tickles), TALK to your baby, and LOVE your baby. Try to get skin-to-skin contact whenever possible (kangarooing--http://www.babylinq.com/kangaroocarebenefits-prematurebabyarticle-krisannecollard.aspx). Be there as much as you can. When you can't be there, the ZAKY (http://www.zakeez.com/en/zaky/zaky.php)is a great little item.

    In contrast to Cori's experience with Joey, we actually had a hard time convincing the staff that we should *stay* in the hospital a little longer (in order to leave without a feeding tube, which I felt was not only very possible, but also very important for Bridget to learn to eat by mouth).

    There are two posts on Bridget's Light which relate to our experience in the NICU (and learning about the importance of advocacy).



  7. sorry, the second link should have been:


  8. Thank you again for all the information you bring. I wanted to say hello. I hope all is well with you and your darling baby. My regards to your husband for father's day.

    God bless you.

  9. Our baby girl is currently in the NICU, and projected to be for a minimum of 1 week. All of the nurses, and the doctor, have kept us well informed and are quite attentive to any questions or concerns we may have.

    thank you though for the warnings! I now know what to look out for, and will continue to camp by her bedside until they kick me out during their shift changes!! :)


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