Family, high risk pregnancy, managing expectations, NICU, preemies, pregnancy, premature, premature babies, rough starts, supporting families
My twin daughters Fiona and Daphne were born at 31 weeks this February and were teeny tiny perfect little peanuts. We’d known from early on in the pregnancy that the girls would be facing a long NICU stay, and I think the advance warning was 100% key to my (relatively) stable emotional and mental state throughout the ten weeks we spent on the NICU.
But prepping the people around me was hard. I kept telling my dad we expected the girls to be about three lbs (1.5 kilos) and he would make a choking noise on the phone which, frankly, was not helpful.
In one memorable conversation, I said ‘we don’t know when they will come home even after we have a c section date’
He said ‘oh yeah, because they’ll be in the NICU for a few days.’
‘No, Dad. We’re hoping for 4-6 weeks in the best case scenario.’
I mean, how would he know? He was just worried, as of course we were too. But managing other people’s expectations gets exhausting really damn fast, especially when you’re working so hard to manage your own. So here is a list of NICU do’s and don’ts for family and friends.
1. For the love of god, don’t ask when the baby/babies are coming home. Do not do this. DO NOT. I know it seems like a totally innocuous question but a. everyone asks and b. as with many long-term hospital stays, the kids are in there until they get discharged. Something can go wrong up until the moment you walk out the door, and I spent most of the ten weeks holding my breath. In Fiona’s case, she had a final, pre-discharge blood test – at which we discovered she was anaemic. She spent another week in the hospital while they monitored her haemoglobin levels.
The best analogy I have come up with, for those of you with friends in academia, is that it’s like asking a PhD student when they are going to graduate. The answer is ‘as soon as possible.’
2. Don’t expect photos. Even the relatively healthy babies are often hooked up to a lot of crap – oxygen, breathing, heart rate and apnea monitors are pretty standard. Really, really early babies are often a non-skin colour – blue or translucent – and breathing apparatus obscures their faces anyway.
3. Hopefully this goes without saying, but do your best not to express alarm at a baby’s weight or age at birth. Daphne was under two lbs. I know that’s tiny. I dislike telling people because they look so startled. But of course, not all NICU babies are early; some have a rough start for other reason. A friend recently spent nearly three weeks in the NICU with a past-term baby, and the most alarming thing I witnessed in the NICU was a 37 weeker rushed in from labour & delivery (thankfully, that baby was home in under a week).
4. Do all the things you would normally do for parent of a newborn – bring food, send cards, keep in touch via text messages (I personally loved texting – you can’t speak on the phone in the NICU, but texting was allowed. When I was spending hours in a hermetically sealed room, with alarms beeping around me, I was beyond grateful for the friends who sent me chatty texts, especially when they kept texting over a period of hours or days). Basically cultivate the same ‘it takes a village’ approach that you would if the baby was at home. Virtual support is still support, and it’s something you can offer even if you are far away or pressed for time.
5. Don’t assume the mum is getting sleep because the baby isn’t home. You are strongly encouraged to pump breastmilk for NICU babes, and for first time mums especially, it can be stressful and time consuming. And it has to happen on a regular schedule – so even if the kid is in the hospital, there is a good chance the mum is getting up every four hours to milk herself.
6. Do send media recommendations. I found most books to be a little too much for me, and I didn’t like to bring books into the sterile environment anyway – when I read them, I read them on my phone (sterilised daily with a Clinell wipe)(my husband brought gross dusty paperbacks in all the time, though, so – personal preference). But I read longform journalism, listened to podcasts, and while I was expressing I watched Netflix shows that I’d cached on my phone.
7. Don’t send pics of your healthy baby, if you have one. A friend sent a pic of her healthy, smiling newborn with the caption ‘forgot how great these smiles are!’ And I wasn’t angry, exactly, but I had two kids hooked up to machines in incubators at the time and I had a hard time mustering enthusiasm for her sweet healthy baby. I’m not proud of myself – I wish I had been more generous of spirit – but I don’t think I’m alone among NICU parents. Stupid healthy babies and their stupid clueless parents.
One in ten babies are born early or unwell, so hopefully this advice will never be pertinent to you, but odds are it will. That said – to avoid ending on a dour note – most NICU babes are just fine. A rough start doesn’t necessarily dictate what happens when a baby goes home, but it sure does suck while it’s happening, and having the right kind of support can be a huge help.
Kathy Dudgeon said:
Thanks so much for sharing Snacks & Adventure. It’s great to hear about the girls and the progress they’re making. I apologize if John or I contributed any insensitive replies – we know this is tough journey and want to be supportive.
If you have a chance, can you change my email from email@example.com to firstname.lastname@example.org
I don’t receive sbc emails on my iphone and I only check it on my computer a few times a month.
If you don’t have time to do it – no worries.
Hugs to you & family,