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.