I’ve been trying to write this entry for weeks now. I’ve already talked about mental and emotional survival, but physical survival is also important. I’m short on time and brain power, so instead of trying to weave an eloquent cheer flag, I’ve decided to throw up bullet points in hopes that some other NICU parents appreciate the quick words as they sit in their own uncomfy isolette-side chair.
- Get to know your nurses. Seeing them as real people will help you trust them, plus talking to them about more than the babies will help you decompress and pass time.
- Spend as much time as you can and want in the NICU. Some people do well with less time in the unit. Others, like me, do best with as much time as possible. As long as you’re healthy – in body and mind – listen to your instincts.
- Learn about your babies as much as possible. Ask questions about their care. Watch to see how they act. Watch how they sleep. It is possible to bond through the isolette, but it takes a lot of patience and vigilance.
- Get your kangaroo on. Kangaroo care, that is. It’s good for you, and it’s good for baby. Breathe in that baby smell and revel in the tiny life of which you’re in charge.
- Accept free food. I don’t care if you hate meatloaf. If someone gives you free meatloaf, eat it and be thankful you can eat without thinking or doing anything more than chewing.
- Dress comfortably when in the unit. Don’t worry about impressing anyone with your stylish threads or even offending anyone with your ratty sweatpants. You can focus better if you’re comfortable. You can maneuver through wires if you’re comfortable. You can sit for more hours than you expected when the shit hits the fan and doctors and nurses are dancing around your baby, trying to figure out the unknown problem.
- Carry with you some thick hand cream. Frequent washing and sanitizing is brutal. Your hands will thank me.
- If the NICU has your cell phone number as your contact number, program a different ring for their number. Otherwise, you’ll have a heart attack each time Curious Family Member calls. Reserve those heart attacks for actual NICU calls.
- When the NICU does call, sit down and center yourself before answering. You don’t want to hear bad news while holding a sharp kitchen knife. The extra 30 seconds before answering is worth it.
- Bring your electronics into the unit. I can’t tell you how many times my iPod touch saved my sanity. From Angry Birds to streaming Netflix, the mindless activities helped pass the hours I spent in the unit. I always had one eye on three monitors, but having that other eye elsewhere saved me from completely losing my mind.
Readers, if you’ve survived the NICU, please feel free to add any of your own tips in the comments. I’m seven weeks out from our stay, and the sleep deprivation and sweet, healthy babies have clouded some of my memory. I’m sure I’m forgetting some vital advice.
If you’re in the NICU now, know you aren’t alone. I wish I could tell you we all survive, that we all find that elusive light at the end of the tunnel, but we all know that isn’t true. Take care of yourself and focus on the possibility of survival.
Sometimes that’s all you need.
I was in NICU for 59 days with Esther and William. I did all the things that you mention in your guide. I want to reiterate getting to know the nurses and understanding that they are there not just for the babies but for the parents too. They want to help you. They are on your side. I used to forget that sometimes. Always remember you are not alone and do be with your babies as much as you possibly can. Love them and know that you are their Mummy x x
Ah the hand cream… It was so needed. I actually had to bring my own sanitizing soap from Peter’s lab b/c I was allergic to the hospital sanitizing soap. Fun times but they reviewed it and approved it quickly. We were not allowed electronic devices, except cell phones for photos or actual cameras (your phone had to be off except for the camera feature). But I brought plenty of books with me.
At just over 3 years out from their birth, but 6 weeks short of 3 years from their discharye i still remember it like yesterday. I would add: take LOTS of pictures! Add something for scale reference. You will quickly forget just how small they were. Also: don’t hesitate to ask for assistance, you never know what’s available. Whether it’s vouchers for the cafeteria (ours gave $5/day for b/feeding moms) or pump replacement parts, you may find help.where you didn’t expect.
Your babies are beautiful!
My friend Mandy has started an organization called Survival Mode Parent (http://www.survivalmodeparent.org) which is an awesome way to help parents who have children in the hospital. Volunteers are matched up with people in their area who may need help. Mandy’s a rockstar and I hope this organization gets the recognition it deserves. Go sign up to be a volunteer now!
I left a disposable camera in Elora’s isolette and the nurses snapped pics all the time for me.
Also, I couldn’t hold Elora for the first six weeks of her life, so no Kangaroo care then. Instead I would read outloud to her. Kids books are boring and short, and she responded well to my voice, regardless of what I was saying, so I read all sorts of novels.
And because I couldn’t Kangaroo, they recommended bringing in little receiving blankets from home that I’d slept with so they’d smell like me. They said they comforted her
I made teeny tiny flannel ones, probably about 18 inches square. Because we couldn’t dress her, seeing her with her own special blankets instead of hospital ones was comforting to ME.
In addition to getting to know the nurses, get to know the other NICU families! Give each other support and encouragement and somebody to talk to – it can get lonely in there! (We ran into a family we met there a year later in Conor’s swim lessons!)
One thing I’d add re: the nurses – respect the shift change. They need that time without interruption (as much as is possible). I tried to use that time to go grab a bite to eat or go to the bathroom.
Also, I found the NICU nurses 1000X more helpful with breastfeeding than the “lactation consultants”. It really did seem to give them tremendous joy to see a NICU baby successfully nurse (finally). The LCs (when they actually showed up) didn’t really seem to give us much of a chance.
I’ve never been in such awe of knowledge, skill, professionalism, and grace under pressure as the NICU nurses we had. They were amazing!
You rock. That is all.
Assert yourself. You will get to know your babies the best and if you feel that they’re not getting the best, say so. It sounds like you had a good experience in the NICU…. well, the best it could be. We were plagued with a new nurse almost every shift. After 29 days in the NICU and almost 60 shifts, I think we had almost 25 different nurses. I got so sick of Nurse X saying, “well, he seems to be like this…” after they’d known my boys for all of 4 hours. We had to fight to push the nurses to offer the boys a bottle for ever feeding, so we could get them off the NG tubes and home with us. We knew they could do it, that they had the energy. And we were right. They were taking about 50% of their feeds by mouth and when we pushed for more on Saturday, they were going home with us on Tuesday morning at 100% of their feeding by mouth. It was eye opening.
I’m so glad you and your babies are all home safe and sound
I’m a few years (and a partner) away from having kids but if it turns out they’re in need of NICU care I’ll be checking back in with this post for sure
I love all these additional tips! I forgot one – if you’re breastfeeding and are given access to the hospital’s lactation consultants, use the crap out of them! Having constant breastfeeding/pumping help was a huge weight off my shoulders.
I would second the vote for assertion–not just with the nursing staff but also with any specialists and the neonatologists. I felt like our NICU staff communicated great as a group, but sometimes I would bring a detail up that one doctor mentioned on rounds that would cause the current doctor to either pause and think or consult his team a second time.
I would also encourage, where it’s possible, parents to ask for a consistent care team. We had two regular daytime nurses and two regular nighttime nurses and I still have a very special place for them in my heart. They were awesome and made some of my very worst days a tiny bit more manageable.
Eat. Especially if you are expressing. Buy snacks and put them in your bag to take to NICU, set reminders on your phone if you have to. I found it so hard to remember what time it was in NICU, so skipping meals was easy, and my thoughts were on expressing, dealing with doctors etc.
Write things down. Your own thoughts, what doctors or nurses tell you, so much happens, its easy to forget.
If you feel like you are not being listened to, write a memo to the staff. I did this a couple of times and found it worked well for me.