Last week I posted Part 1 of my NICU Survival Guide (What I Wish I Had Known). The fun continues this week with Part 2! There are so many tips and tricks I could share but I think self-care is a huge aspect of surviving the NICU. I also think it is a baffling aspect to all new parents, especially those that have been thrown into the unpredictable and chaotic world of the Neonatal Intensive Care Unit.
If you have a friend or family member dealing with a loved one in the hospital, help them make time for themselves. You can take them out for coffee or watch their child in the hospital so they can go for a walk outside. My sister-in-law, who lived in a different country than me, once sent me a new wallet filled with money just for ice cream. I hadn’t yet given myself permission to leave and take an ice cream break but when it felt like the walls were closing in, that was exactly what I needed. One of the hardest things to do is leave your child behind in the big, scary, gross smelling hospital. Help to lessen that burden for new parents by encouraging them to do something fun with you, or by taking a shift at the hospital so they can take a break.
Warning: the following "Click Here" link may trigger strong feelings if you have been through a similar situation. It is an honest and raw snapshot of what my life looked like as a mom with a critically ill baby in the PICU (Pediatric Intensive Care Unit).
Click Here to view a picture of Mason and I with Austin in the PICU at 5 months old. This was right around the time when I received the wallet full of money for ice cream. If anyone needs an ice cream break, it is this chick right here. You would not believe how much energy it takes to smile and pretend like life in the PICU is just fine.
If you suddenly find that you, yourself are the new parent of a tiny human in the hospital, check out my third survival tip, below.
Survival Tip #3. Remember to eat.
This one sounds simple but I forgot to do for about a month and a half at the beginning of our NICU journey. I have never been good at taking time for myself and when I was confronted with my tiny babies who were struggling to breathe and eat, I didn’t get any better at it. We were in the NICU for the long haul, however, and after 7 weeks of spending 12 hour days in the NICU without eating or resting, I needed to re-group. A NICU nurse very firmly walked me to a hospitality facility on the hospital campus and told me to eat lunch (shout out to the JW House at Kaiser Santa Clara!). First of all, I was pumping breastmilk for two babies and needed fuel. Second of all, I was a new mom in an unfamiliar and actually quite frightening world, trying to advocate for my new tiny humans. I needed to take care of myself so that I could take care of my babies.
My husband and I also needed to take small breaks from the NICU to avoid burnout. The night before Twin A was discharged, our NICU nurse told us to go out for dinner. I thought she was crazy! I was planning on washing and disinfecting every inch of our house for the fifth time before bringing our 5 pound baby boy home! Our nurse was right, however, and I’m glad we listened to her. My husband and I went to dinner at the Olive Garden (I was still living in maternity clothes and track pants so we didn’t get too fancy) and it was the perfect chance to relax and hit the reset button. Life moves so fast and it is incredibly easy to become consumed with the tasks involved in caring for a medically-fragile baby. Carve out time for yourself and your partner when you can. Life isn’t going to slow down when you bring your baby home.
p.s. you need to take breaks so that you can still see the humor amidst the chaos (Sorry, Austin).
Survival Tip #4. Once you’ve eaten, introduce yourself to your NICU roommates.
NICU Dads for the Win!
It was during a quick trip to the hospital cafeteria when I first introduced myself to another NICU family. I didn’t know if I was even allowed to introduce myself to other families in the NICU but I am so glad I did. The new parents were wonderful and we hit it off right away. I still keep in touch with them and they were vital to combating the isolation of the NICU. Eventually, I started introducing myself to more and more families that I saw around the NICU. We bonded and became resources for each other as we were all trying to figuring out this new world together. Those families became some of my best friends. Now that my twins are healthy, thriving two year olds, new friends don’t understand the Hell we went through. I treasure my NICU friends because we celebrate the smallest victories, understanding how insurmountable it all felt at the beginning. Do whatever you can to connect with other people who are going through the same journey as you (support groups, facebook groups, friends of friends…). The emotional toll of our NICU journey still weighs on me today and I lean heavily on my friends who walked the same path as us. They understand my pain, fear and irrational joy for the smallest victories in a way that parents with healthy, full-term children may not. They say it takes a village to raise a child and I think it takes a village to survive (and embrace) the NICU.
Survival Tip #5. Take what you like and leave the rest.
On a more practical side, take all of the hospital supplies that you can! This tip is more prevalent for the Mother-Baby floor when you first deliver and the pediatric floor if you end up there after the NICU. Take everything with you! A friend of mine once said that when something is opened, the hospital cannot reuse it (i.e. diapers, wipes, baby shampoo packets, absorbent liners placed the mattress and bedding…). We were told to take everything except the linens (although we did end up with a few baby blankets from the hospital, shhhhh). When Austin was finally discharged, he still frequented the pediatric floor for infections and follow-up surgeries and I usually had a list of supplies we were running low on.
On a more sentimental note, keep all of the memories and friends that you met and try to leave all of the bitterness, pain and fear behind (easier said than done). To help preserve our fond NICU memories, I took pictures, videos and memorabilia. Our hospital days were such a blur that I now rely heavily on pictures and videos to spark my memory. I kept a tiny ankle blood pressure cuff, a small 60 mL baby bottle and a micro-preemie diaper. A fellow mom of multiples suggested taking pictures to celebrate all the milestones and “firsts” you encounter in the hospital (i.e. first bath, first bottle, first day off oxygen). Each of these moments mark a victory that you probably won’t have time to celebrate until you are reflecting on your journey months later. You will not be stuck in the day to day life of the NICU forever; keep parts of it to remember later. Your NICU baby is a miraculous little fighter and he/she will be an inspiration to others as they grow.
Celebrate the progress!
As for the memories and moments you didn't like, accept that they are a part of your story but try not to carry them with you into the future. I think this is an untold reality about having a premature baby: NICU bitterness is real. Most parents of preemies missed their baby showers, maternity photos, newborn photos, the "Golden Hour" after delivery and maybe even the whole newborn phase with their child. It has been two years and I still find it challenging to relate to new moms who only have one healthy baby (just ask a good friend of mine who witnessed me burst into tears a month ago when I was asked about who was in the delivery room with me- no one!). The bitterness, pain and fear can really take hold. I work hard to not diminish that, but to remind myself that it is of no use to me now. Now, I have two adorable children, a loving husband and family and friends who want to make new memories with me. That is what is important and that is what I want to focus on. My mantra is, "take what you like and leave the rest behind" (literally and figuratively).
There are so many other lessons and tidbits that I learned along the way but I think these would be my Top Five Tips.
Survival Tip #1: Stop and take a long, deep breath.
Survival Tip #2: When family and friends ask how they can help, point them to Amazon.
Survival Tip #3: Remember to eat.
Survival Tip #4: Once you’ve eaten, introduce yourself to your NICU roommates.
Survival Tip # 5: Take what you like and leave the rest.
If you find yourself holding your tiny baby in the NICU, hang in there and remember to breathe. NICU babies are some of the toughest humans around and your NICU care team is full of warriors fighting to protect your baby. Trust your instincts, take a moment when you need it and lean on those around you.
Thank you for reading my blog post about tips for surviving the NICU. If you have, or have had, a baby in the NICU or loved one in the hospital, I would love to hear your tips as well.
A Proud Parent of two, determined, NICU Grads
#fightlikeapreemie #preemiepower #milliondollarbaby