Communication with Parents

[Loralai]

I'm wondering about the communication in various NICU's with the parents. Does someone such as the Neo or NNP give the parents a call at least once a week to fully update the parents on the baby's status? Or is your NICU dependent on the parents calling in order to give them updates on their baby. For what issues do you feel would be valid to call the parents? Pulling blood out of a feeding tube? Collapsed lung? Test results for ROP or IVH?

I've recently had a 27 weeker, 1 lb. 11 oz. due to HELLP who is still on an oscillator after 5 weeks and on iNO for 4 weeks now. His first 2 weeks we received daily updates from a Resident and then our baby was switched over to the NNP's to look after him and all communication seems to have stopped. We've asked several times now if we could receive updates from them, not on a daily basis but if there are changes in his condition. The only time they'll call is when we let the nurses know that we haven't heard anything from them in 2 weeks plus. Otherwise we are left to call in to the nurses for any updates which are always brief. The nurses just go over his current oxygen settings, weight, how much his feedings is at, any residuals etc.

We've also expressed that we'd like more information on his prognosis but no one seems to be upfront with us. I know that in the NICU there's never black and white. That what they believe one day can turn a 180 the next. But we have concerns and the nurses and the NNP seem to avoid any questions concerning long-term and brush them off. I know there's never a guarantee but certainly a doctor or NNP should be able to give us more information for our particular baby? Concerns or side-effects of medication he's receiving? I believe we are having trouble interpreting information given to us as anything that's happened to our son and our questions are met with "this is common". His latest partially collapsed lung and possible infection we've been told by nurses is just "something we see all the time". And I know this is typical but certainly the cards start stacking against a baby's favor at some point and my husband and I aren't even sure that someone would call us or give us a straight prognosis if there was a serious problem at this point.

This is a unviersity hospital with a level III NICU. He's in very good care, and we trust the nurses. We are just frustrated by the lack of communication despite asking several times if we can receive updates if there is something that significantly changes with his care (i.e. lung collapse, bleeding from the stomach, etc.) and don't want to come off as overbearing parents. Is there any suggestion as to how we can possibly improve this communication or is this just the norm? I know that it can be very busy and want to respect the nurses and NNP's time.

[Finallyat40]

I don't know if this will be of much help or not, but on this forum, we are not to give any medical advice. What I'm hearing from you is that you're not asking for that, you're simply asking the best way to communicate with the staff that are caring for your baby and to get them to communicate with you. Here are a few thoughts:

1) When you go to the unit to visit your baby, immediately ask your baby's nurse to page the provider to the bedside. When they arrive, ask them for an update on his status for that day and his plan of care going forward. It also doesn't hurtto ask the nurse the same question, as each of them focus on different areas, so this might help with the completeness of the report.

2) Ask your child's provider (NNP) to schedule a family conference with your attending physician, social worker, NNP, the entire team, so that you can get some answers concerning the future. Don't expect a great deal of specific information out of this because these babies are so resilient and can overcome some major things, so you're most likely to get a range type of answer to your questions.

3) Keep in mind that you'll catch more flies with honey than with vinegar....I'm not saying you shouldn't ask questions, just try to keep them organized and realistic.

Congratulations on the birth of your son and always remember....You are his best advocate, so be sure and participate in his care.

Jamie

[SteveNNP, MSN, NP]

Sometimes it's helpful to put a little card on your baby's isolette that says something like " Please call my mom/dad if anything important happens!" and include your cell #. From a nurse's perspective, sometimes it's just plain impossible to call about every little thing that happens, like feeding intolerance, a routine blood transfusion, minor vent changes. Often the nurse has a few other sick babies to provide care for, and often the medical team manages 20-30 babies at a time. I agree that parents calling a few times a shift makes it easier to stay updated. We don't mind answering all your questions at all. I also think a family conference could be very beneficial in your case.....

[justme1972]

I had my twins in the NICU for over two months. I visited them daily (but I understand not everyone can make a daily trip, especially if you live far away from the hospital), and the hospital had a policy that when I made a visit, the bedside RN gave me a full, immediate update on my children. The conversation ended with asking me if I had any questions.

If I had a question and the RN did not know the full details of the answer, the Neonatologist or the NNP's were right there, and sometimes I would have to wait a few minutes while they finished with another baby (which I was always fine with...after all, my children weren't the only ones there), but I ALWAYS got an answer the same day.

I never once went home wondering how my children were doing.

Only one time did I have to take a situation one step up the chain of command, when my son had thrush for two days and there was no script for meds ordered, and I told them that I fully expected meds for that on that day, and I returned to make sure they were being administered.

Now, with that said, if you are NOT getting that level of communication, then you need to take it up the ladder. What you are describing to me, is unacceptable. You need to know if your child is gaining weight, if he/she is eating, if ANYTHING changes, you need to know. If the bedside nurse cannot communicate that to you, then I would seriously question how much THEY are getting informed of your child's condition to be able to take care of them properly.

[RainDreamer, BSN, RN]

I never call parents unless there's a major change in their baby's condition (and that call is usually done by the neo/NNP). For one, I would hate to call a parent in the middle of the night just to tell them that we've had to start a new IV, get a CXR, baby is not tolerating feeds, etc., as they can be updated on that in the morning or whenever they call/come in next time. I know the parents would have a heart attack if I called them in the middle of the night! Some parents do have specific instructions though to call if there are any certain changes that they want to be made aware of (I've had parents that wanted to be called any time we had to start a new IV, give blood, stop feedings, etc. ..... and that's fine, it made it easier for us because we knew exactly what to call for and we didn't feel bad about calling in the middle of the night).

Like the others have said, it does make it easier if the parents call throughout the shift, especially on night shift because then I know I'm not waking them up by calling just to update them.

When parents come in I always give them a full report on how their baby is doing. As a parent, you should DEMAND as much as a full report every time you go in there. If the bedside RN can't give you all the information you need, then ask to speak to the NNP that is covering. Don't leave there until you have all your questions answered.

Sometimes they will have "family meetings", in which the parents will meet with the neo/NNP, an RN, social worker, any specialists involved, etc. The neo/NNP, RN, social worker, or parent can request a family meeting. It just makes sure that everyone is up-to-date and on the same page.

If you are asking all these questions, demanding answers, and are still not getting feedback and answers, then I would do like the previous poster said and take it up the chain of command, as that is insane and unprofessional for this NICU to behave in that way!

Congratulations on your new baby, and please let us know what happens!

[LilPeanut, MSN, RN, NP]

Parents have to call, unless the child is crashing or needs consent for something. The only exception is if interpreters are needed for updates.

It may seem harsh, but if the parents don't call in, don't visit, there's an assumption that they don't want to know what's going on. We have a lot of kids who have been essentially abandoned in the hospital, and we'd be spending a heck of a lot of time on the phone if we had to call each and every one of them with changes. If they want to call us, we're more than happy to update them with as much info as they want. If they visit, they can talk to us, the practitioners and they are encouraged to be present during rounds.

[faithful11]

Both my kids are NICU graduates, from different hospitals and 3 1/2 yrs apart. That being said---both NICU experiences went well. The RNs WOULD actually call to let us know how the babies were doing at least once in a 24hr period, and BOTH of my kids were only feeder/growers---my daughter wasn't even on O2 and was just in an open crib thing. The RN would call to let me know if my breast milk supply in the fridge was getting low, or to let me know they increased the feedings, they called to let me know tests/lab results...they called to let me know on one shift that my daughter had sucked her thumb at feeding time etc. The neonatologist called maybe once or twice. With my son they called to let me know they wanted to start a PICC and with my daughter--it was because her tummy was bloated and looked ready to pop, and she had EXTREEEEME gas because I had eaten some of the wrong things (I was breast feeding/pumping.) and he wanted to do some barium enema or test to make sure everything was ok.

I understand that there may be times and/or situations which do not allow for the hospital staff to keep in touch as much as other times. Both hospitals of course allowed the parents to call as much as they wanted (you know, there was change of shift, but outside of that...and rounds) and I just was blessed that the nursing staff made the time to also call us pretty frequently. I was up there every single day minus one day for my son's 2 month stay, and the same thing for my daughter's 4wk stay.

Speaking of the card with the request to please call, one of the RNs suggested doing that, as well as leaving a disposable camera for their use to snap pics of the little one if a moment arose. Hence, I got a pic of my daughter's 1st attempt to suck her thumb @ meal time! :balloons:

ps---I want to say again, that I do understand that it isn't the 1st priority to be on the phone nonstop w/parents,and that there are more times than not, that time does not permit a nurse to hop on an outside call with a mom or dad. I love all the NICU nurses and appreciate the skilled and taxing work that they do!

[LilPeanut, MSN, RN, NP]

I think a lot might depend on the level of the NICU and the typical pt. population. If you are in a smaller NICU where the acuity isn't incredibly high, I can see that happening a lot more.

[Music in My Heart]

The only times we were called were either (a) when we left a message asking for an update from the doc or (b) he was going to be gone for a few days.

We were provided with an 800 number and encouraged to call any time and we did so, at least once per day over the 100-day journey.

When we visited (in our case, daily, because we were close to the facility), we would ask to see the doc - if he was in and had the time, he would come spend a few minutes with us.

Even at that, I sometimes felt like we weren't kept as well informed as I would've liked. It's hard, though, because they don't want to provide misleading information or engender expectations (positive or negative). And, they are busy as all get out.

Hang in there. Be persistent but be respectful.

[palesarah]

Parents have to call, unless the child is crashing or needs consent for something. The only exception is if interpreters are needed for updates.

It may seem harsh, but if the parents don't call in, don't visit, there's an assumption that they don't want to know what's going on. We have a lot of kids who have been essentially abandoned in the hospital, and we'd be spending a heck of a lot of time on the phone if we had to call each and every one of them with changes. If they want to call us, we're more than happy to update them with as much info as they want. If they visit, they can talk to us, the practitioners and they are encouraged to be present during rounds.

I think a lot might depend on the level of the NICU and the typical pt. population. If you are in a smaller NICU where the acuity isn't incredibly high, I can see that happening a lot more.

:yeahthat:

We expect parents to call or visit daily. If there are extenuating circumstances- parents live far away or don't have a phone- special arrangements are made. But we see or hear from the majority of our parents more than once a day. If they can't visit, most parents call several times a day. It's much easier on our unit for parents to call when it's convenient for them.

[Jerico, BSN, RN]

I seldom contact a parent. We take calls. A note left attached to the isolette is great - a good reminder to call.

Our unit is so busy that we rarely get a break OR lunch many days. If I have time I will take a call or call a parent back. Our babies change so FAST we only call if the baby crashes. If a baby steps down from Level III to II or II to I we do not call, but if a parent calls we inform them of the happy news.

We do not call to tell them bad news - ever. The neo or NNP calls that one.

There is a serious nursing shortage, I work 60 hours some weeks (5 - 12s).

[BittyBabyGrower, MSN, RN]

We expect parents to call for updates. If we don't hear from them in several days, then we refer to social work. We are a very busy level III and honestly, we don't have the time to call about every little thing, such as pulling out feeding tubes, restarting IV's, etc. We do have parents ask us to do so and we tell them that it is their responsibility to call and get the updates. We will call if there is a big change or the baby gets sick or sicker. If I called every parent for every thing, I wouldn't be able to take care of my babies, I'd have a phone plastered to my ear for many hours.

We always take calls from parents, if we are busy we will tell whomever answered the phone to tell mom XYZ and could they call back in XX minutes.

Our docs and NNP's are very good about calling if there are major changes, to get consents, and if we need to give blood products, things like that. But again, it is part of being a parent to be involved and be active in getting updated. Like someone else said, if a parent doesn't have a good excuse not to call or come in, and they just don't call, then the assumption is that they don't want to know, don't care to know and we refer them to social work, who will then call them and find out why they don't call or visit.

As your baby sounds pretty ill, I don't think it would be unreasonable on your part to ask for weekly team meetings to go over progress, tests, and plan of care. Take the bull by the horns, you are your babies advocate and you need to form a good bond with his caregivers so that you have a good port of communication open. Take a notebook and write questions down as they pop in your head and during the meeting write answers to them down. Also, try to stay away from the internet for your info...there is much misinformation out there and it makes us crazy!

Take care and congratulations on your baby!