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Tuesday
Aug022011

Survival Guide to a Hospital NICU

On July 8th, Kio Stark and I had a baby named Nika Stark Pettis at a hospital. We had been camped out there since Kio was on bedrest for about 6 weeks before the birth and Kio had the baby about 7 weeks early which is pretty early. Then the baby spent 6 weeks in the NICU. (Neo Natal Intensive Care Unit) It's a total relief to have her home. I'm not very impressed with the state of hospitals and health care. If there is one thing that could be improved, it would be redundancy in the transfer of patient data from one shift to the next and from one doctor to the next and from one nurse to the next.

I learned a lot about being in the NICU by being an obsessive dad at the NICU and so I figured I'd share some tips and tricks for surviving the NICU here for others. This is going to sound pretty intense. NICU's are intense places!

Here are my rules for being an obsessive dad in the NICU:

1. Always have an advocate with you at the hospital. This isn't really a tip just for the NICU, it's for everyone. Hospitals are stressful places. This experience taught me that every one who goes to a hospital should have an advocate with them that takes notes, helps figure out what doctors and nurses mean, checks on medicine side effects, and can remind nurses and doctors of the plans for the patient including the times medicine is given and just to keep everything in line.

2. Professional patient advocates are there to help when things aren't right. If something is not right, you've got to be the advocate and get your baby the help they need. Don't assume that someone else is looking after your baby. If something isn't right and does not get addressed, there are patient advocates to help you make sure the issue is addressed. Ask for directions to the patient advocate office, it may not be easy to find or in an obvious place in the hospital.

On the second day that Nika was in the NICU, I arrived after a shift change to find the monitor flatlined. I quickly checked her breathing and pulse and found that the baby had been unplugged and there was no one in the room with her or the room outside. From the datasheet, she'd been unplugged for over an hour and even with the backup systems including remote monitors, nobody had noticed. I blew a gasket when the nurse made excuses about how busy she was, how the technology isn't reliable, and how they were understaffed. I went to a supervisor, who didn't actually have time to get to the bottom of the situation and then the managing doctor who didn't get back to me after saying he would look into it. At that point I went to the patient advocate office and a patient advocate helped make the issue real and made sure it didn't get swept under the rug. Every hospital has a patient advocate office. The patient advocate made sure everyone knew that a mistake had been made and it wasn't going to just get swept under the rug. I had already learned from the pregnancy that hospitals are horrible at data transfer across shifts, but it was pretty stressful to realize that all the technology in the world can't be a redundant life support network if humans are neglectful. If I couldn't depend on the NICU to be a redundant life support system, it meant that I had to be there all the time.

3. Be there as much as possible. After that experience, I made sure to be there as much as possible. We figured that if me or Kio or Grandma was there, there will be at least one person there to make sure the baby is breathing and her heart is breathing. NICUs are very busy places, and after spending a lot of time there, I can say that they never have enough people and the technology isn't failsafe. Alarms go off so often because leads become disconnected that there can be a long time between an alarm going off and anyone responding. If you're there, you can take your baby's pulse or feel her breathing and apply cpr if there is a problem. (Never had to do this thankfully!) Get trained to do this. It's easy. 30 chest compressions, 2 puffs of breath. Kio and I are super lucky and Grandma was able to be at the hospital a lot which was a huge blessing. Huge win for us and huge win for Nika to have someone with her a lot of the time that she was at the hospital. We also ended up staying at a friend's place and then after that we used craigslist to find a sublet across the street from the hospital so that we didn't have to spend hours a day communiting from home during the time Nika was in the NICU and therefore we could spend more time with the baby.

4. Take notes on everything the nurses and doctors say. Hospitals haven't set up a reliable and redundant data network to transfer information from one shift to the next, so you have to be the data network and tell each nurse and doctor all the details of what's going on, what medications are involved and how often they need to be given. Find out when rounds are and be there for them. Rounds are when they come around and talk about your baby and make decisions about when things happen. Nurses end up carrying a lot of weight here. Pretty much the doctor says, "what should we do?" and the nurse decides. Very often, the nurse has only been around the baby for an hour or two and makes decisions. Often times, you'll have to remind them about things that are scheduled to happen. I had many times where I had to ask them to stick to their own timeline. While taking notes, ask for last names when you write their names down. Taking full names gave them notice that they were accountable and was the most helpful thing I did in making sure that Nika got good care. Ask for timelines and checkpoints and rules. They kept saying that when she gets to 4 pounds she'd go home, but the reality is when she got to 4 pounds she has to have a sleep test and a number of other tests.

5. There are no rules. Nurses and doctor said absolutely conflicting things about when and why things happen. This is actually kinda disturbing because it means that the internet might be more reliable for information about many things relating to the health of your child! We went home one night after being told that it would be days before she'd transition from an isollete incubator to an open bassinet. Then the next morning, the morning doctor had her decided to put her in a bassinet.

6. Transition times are dangerous. At the hospital I was not allowed to be there from 8-9 am and pm. There were a few times where they would ask me to leave at 8 for the transition and I had to basically say to the nurse, "you're about to go home and the next person isn't here to take over from you, I'm staying until I can transfer the data since you still don't know who the next nurse is and you're leaving."  To they're credit, they figured out that I'm a bit of a stickler for this and that I also am a source of some random chocolate, cookies and overall friendliness, so unless it's a nurses first time with me, they know my routine. If I could go back in time, I would have brought more cookies. 95% of the nurses and doctors we dealt are top notch human beings full of caring and love for all babies and these folks deserve as much chocolate as they can eat.

7.
Don't accept things that aren't right. I had one nurse who was not very awake and I think she was on some sort of heavy medication. I caught her touching the baby and then touching the garbage can lid with her hands instead of using the foot pedal and then not using purell and touching the baby with dirty hands. after she did it a 3rd time, I finally confronted her and later pulled the managing doctor aside to say, "This woman is not very awake and every time she's my baby's nurse, I have to watch over her like a hawk to make sure she doesn't do things that put my babies life in danger." After that conversation, the nurse took a month long vacation. Again, remember there is a patient advocate that can help if you don't feel your issue is being adressed.

8. Make friends with the other parents at the NICU and exchange phone numbers. You can be there for each other and let each other know that something is wrong faster than the staff.

9. Ask for a tour of the place. We found out a month into being there that there was a room for parents that had it's own bathroom that was cleaner than the public toilet on the floor. We also found out at the end of our time there that there were showers and towels and a computer with a printer and scanner for parents who were there all the time and it would have been great to have known those things from the beginning.

I feel so thankful that Nika is doing great now. She's been a fighter since day 1 and now she's 7 weeks old and is growing more than an ounce a day. She came out at about 2.6 pounds and is now 4.8 pounds.  She's beautiful, I love her so much and am filled with happy daddy vibes a lot. Photos at http://flickr.com/bre.

References (58)

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Reader Comments (17)

Bre:

Thanks for sharing this. The more parents blog about these experiences the more people will know they are not alone and have greater information. Nina and I nearly had our second prematurely (10 weeks early). If Nina hadn't insisted that we try pretosin a second time, they would have induced.

I noticed you didn't share your hospital. Did you get a sense of whether any of your issues were hospital specific? I'm stunned how hard it is to find information about hospitals and doctors transparently the way you could about say, restaurants.
Aug 29 | Unregistered CommenterAaron Cohen
Thanks for the trip down memory lane! Helpful tips.....my son, who started out with 3 weeks in the NICU is a strapping almost-teenager. Taking nothing for granted.
Thanks for this post. I've spent quite a bit of time in hospitals with my daughter, including time in the NICU. I'd argue that these tips are important regardless of whether you're in the NICU or in the regular Peds ICU. This is a great survival guide for parents in these situations.

One thing I'd reinforce is the importance of speaking up. As you point out, things are rarely as cut-and-dried as they seem to be when presented to you by a clinician. Asking questions and on occasion, pushing back, are perfectly acceptable things to do. The only regrets I have from those times are when I didn't push hard enough on something I suspected might be wrong but wasn't sure about.

Finally, I will say that our NICU experience was in general, much more positive than yours. We were at MSCHONY at Columbia Presbyterian. The NICU is immaculate, quiet, cosy(!) and very welcoming of parents, who are allowed to be there 24/7, as long as they're willing to help with the baby's care. The medical care was also outstanding, and I didn't observe anything like the level of carelessness described above. I'm sorry that your experience was so rough. The last thing you need to be worrying about when your baby is in the NICU is whether your nurse is washing her hands!
Aug 29 | Unregistered Commenterhkd
In addition to the act of just taking notes, it's best to take them in some kind of bound volume that can be passed off to the next watchdog so that the the mom/dad/grandma network has good continuity and data transfer across shifts.
Aug 29 | Unregistered CommenterDave
Great comments and suggestions. You definitely have to take a pro active approach to your patient care. The systems aren't in place to do it very well. As you say, most of the staff are incredibly caring and good people, but between long shifts and poor technology systems there is much to be done to improve it.
Aug 30 | Unregistered CommenterJohn Lynn
My sister has been an RN in the NICU for 30 years and I can tell you that your comments are spot on. I just had a discussion with her this week about the record keeping. You are right as to the transfer of information into the records and the hand-off from one shift to another. It's not that they are lazy, just not staffed. She keeps a lap top on a cart with her and enters all information as she goes along. Also, the last few hours of a shift can be problematic. My sister works 12 hours on for 3 days and 4 days off. Toward the end of the shift they can be very tired and at the end of the 3 days on they can be very tired, especially if they work the night shift and haven't been getting their sleep in at home.
Oct 8 | Unregistered CommenterJohnnyL
Thanks for sharing this. My NICU experience (which lasted 46 days for twins born at 31 weeks) was WILDLY different and substantially more positive than what you post here. I will go on record and say that the Brigham & Women's Hospital NICU and the Emerson Hospital Special Care Nursery (where we were fortunate to be transferred) are top notch care facilities where much of what you describe here would never ever happen in a million years. It makes me sad that you experienced so much difficulty because the NICU experience is hard enough. Glad that your baby is doing well!
Dec 1 | Unregistered CommenterGigi
Just a heads up... CPR on babies is not the same as on adults. You could hurt or... if improperly performed! Get special infant training and it may even be different for a baby in the NICU. Glad she's back with you!
Dec 8 | Unregistered Commenterkendall
We were in the hospital for 5 months with a 23 weeker who is doing amazing at age 3, no one ever knows! This is going to be such helpful info for a family in need. I wish you had posted before 2009!!!
Aug 29 | Unregistered CommenterTP
Were you at a Kaiser hospital? They have a lot to learn! Very disorganized and we supposedly were in one of the best facilities!
Aug 29 | Unregistered CommenterTP
They call it "Practicing Medicine" for a reason: it is always practice. :(

Disclaimer: While I don't have NICU experience, I've been on the healthcare side and also have had experience on the ICU side.

It sounds almost sarcastic and perhaps a bit dark, but never - ever - trust what a nurse, doctor, or even the internet says 100%. As with the news, get your information from multiple sources, and question as much as you can.

From personal experience, I have to agree with the author in that:
- Answers from Nurses differ from Physicians a majority of the time, sometimes drastically
- Nurses try.. half heartedly.. to transition information from one shift to the next, but they rely entirely on the chart. SO MUCH NEVER MAKES IT TO THE CHART which causes each nurse to be re-educated about the patient.
- Not all nurses and physicians are nice and like to be questioned. From personal experience, a fair percentage of nurses get easily ticked off when you start questioning their responses. Nurses are as "Type A" as physicians. Physicians, for the most part, tend to embrace patients who are truly interested.. no one, however, likes someone who badgers.
- If something doesn't feel right, IT PROBABLY ISN'T RIGHT. Say so.
- Healthcare is all about information, so the more information that can be provided, the better.
- It is highly emotional. It can be life and death. Really. Don't hide those emotions. This is the one time you want to be heard and noticed. Just don't lose hold of rationality.

Bre: great article and I am glad this is out there. The presumption is that healthcare professionals know all, when the reality is that they are human, make mistakes, and benefit greatly from as much input as possible.
Feb 20 | Unregistered CommenterRich
This is something that, unfortunately, happens anywhere in the world and it definitely isn't hospital-based. Thank you for trying to raise awareness, the truth is doctors really do their best but sometimes don;t have specific answers. They have to make decisions in a short amount of time and without having tests or anything similar.
This is a survival guide but I am not able see any working tips which can help me for long term survival.

What do you say? Do you have any other link to share?
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