One of the mom groups I belong to on Facebook is focused on providing information for breastfeeding mothers. I’ve learned a lot of good things there, but like any destination on the web, you find a mix of people who provide helpful, factual advice and people who, to be kind, don’t.
I’ve noticed quite a few questions on there lately from NICU moms who are doing their best to navigate that scary medical labyrinth with their tiny baby in the center. I try to answer where I think I can help, and I see other NICU veterans do the same. But it also seems like for each of us, there are three other well-meaning but misguided people who are pushing information that will likely end up frustrating the NICU mom if not outright setting her up for failure. And since I just so happen to have my own little platform here, I thought I would take a few minutes to put together a “5 Things Not To Say To a NICU Mom”:
OK, not a really far throwback, but this hat doesn’t fit anymore so I guess it counts 🙂 This was the day that we started his 48 hours to home countdown, he gave me the OK sign to let me know he was ready! And to go a little further back, this was from his ultrasound:
I knew he was going to be a character the minute I saw that thumbs up!
I already mentioned how grateful we are to the staff in the NICU who helped us get through our days there. I can’t stress enough how great they were, and would definitely tell anyone with a high-risk pregnancy to go to Lehigh Valley and know you will be taken great care of!
Of course, our family and friends were right there with us the whole time too. I would have lost my mind without all of your support, and I am so grateful to have you all – thank you! The other group of people I am so grateful for are the “been there’s” who helped us navigate this scary new world of medical terms, endless commuting, and all the emotional trauma of having a baby in the hospital for long periods of time. Paul’s cousin Angelique not only gave us good advice, but helped explain what was happening to Paul’s parents as PJ progressed. A friend from high school, Andrea, who I’d stayed friends with on Facebook, reached out and shared her story with me of having a baby in the NICU the year before and gave me lots of good advice for getting through it. Another friend and former work colleague, Adrianna, put me in touch with Ashley who also went through this last year and was so sweet, even though we’ve never met! One of my hopes for this little blog is to reach other NICU families who may not have the kind of support that we did, and for it to help them feel a little less alone. We know how hard it is to go home without your baby, to have strangers (even wonderfully kind ones) telling you when you can and can’t interact with your baby, and to celebrate those little moments that most people don’t even know exist because for most people, it happens inside your belly instead of in front of your eyes.
It’s a club no one asks to join, but once you’re in, you’re in for life.
If PJ’s first week in the NICU was the hardest, the last one felt the longest. On the one hand, I was really happy – he was making so much progress! He’d hit his targets for age, temperature, and had been moved into the “almost ready to go home” wing of the NICU. Yay PJ! Although how he got there is one of the things I will embarrass teenage PJ about (tee hee!)
I cannot say enough good things about the nurses and other staff at the Lehigh Valley Cedar Crest NICU. They supported and cared for Paul and I through PJ’s whole stay, and encouraged us to help take care of our baby at every opportunity.
Teaching PJ to eat has been by far the most difficult part of our journey so far, and it’s a big factor in my decision to start this blog. I was lucky enough to have Kym to help me figure it out, but when the inevitable middle of the night question came up, who do I turn to but Dr. Internet? Which made me even more grateful for Kym because, as it turns out, there are next to no resources that deal with teaching a NICU baby how to breastfeed. I am certainly not an expert, but I hope that sharing our experience helps someone else on a 3 am info hunt!
PJ’s first week in the NICU was really hard. The first hurdle was seeing him under UV lights, hooked up to monitors and oxygen, and how very, very small he was. (Yes, that’s him sleeping with one foot straight up in the air – as Paul put it “Lounging like he owned the NICU”!) And yet, he was one of the bigger and healthier guys in his group. One little girl was a few weeks old and not quite 3 pounds yet, another was on so many machines you could barely see her crib. Scary stuff!
Over the next couple of days, my cousin and two friends from high school also had babies. I cried at each and every “going home together” picture. I begged the doctors to keep me in the hospital at least until I could hold my baby, but they had to discharge me anyway. Luckily, the wonderful Lehigh Valley NICU has overnight family rooms available and I was able to stay one extra night under the same roof as PJ. It wasn’t enough, but helped me get in a mind frame where I could leave the hospital and come back for visits. And honestly, I was glad to get out of the Mother-Baby Unit because it was sooo hard to watch all those other families get to cuddle their little ones.
I graduated to a cannula for one day!
Medically, PJ advanced the same way I see him developing now – a lot of nothing new, then BOOM, huge progress! He spent most of the first week on a CPAP oxygen mask, beeping like crazy every time it came off. Then, he apparently decided room air was good enough and started breathing regularly. They gave him a cannula for one day, but he really didn’t need it. Check one thing off the “going home list”! Now he just needed to maintain his body temperature, learn to eat, and age up to at least 35 weeks gestational age. Easy-peasy! Hahaha…