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Daphne getting moved into special care!


So first of all, my post on do’s and don’ts for supporting families in the NICU has resulted in a few really sweet but totally unnecessary apologies. People took amazing care of us, and when missteps were made, it was always with the best of intentions. It was not at all my intention to make anyone feel guilty because my overriding sentiment is that people were amazingly kind and generous with us during the ten weeks we spent in the NICU. Which is particularly worth mentioning because that sort of emotional support is hard to sustain for months on end.

Which brings me here. I asked my husband for tips on the NICU and he said ‘Don’t.’

Spot on advice, I have to say.

I was lucky (as these things go) in that I knew I was facing a long time with babies in the hospital. When they were born, they were pretty fetal. I found it relatively easy to leave because it was so obvious that they couldn’t come home. It was later, when they looked and acted like regular babies and we had been in the home stretch for weeks that I began to really ache to have them home.

I prepped for the NICU by reading Alexa Stevenson, who wrote the book ‘Half Baked‘ and also gave a useful interview at Alphamom.com (I actually read the book twice – once while pregnant and once while in the NICU). I also listened to a really lovely interview with Rob Huebel on Longest Shortest Time, a parenting podcast that has hit some really high highs in the course of its five year (?) run.

Forty percent of NICU parents have some sort of PTSD (my coping strategy is…well, this). Here are the things that helped me (worth noting: I’m an urban planner, not a medical professional, so all the medical stuff in here I either picked up in NICU or googled. I’m pretty sure its accurate, but…).

  1. SLEEP. This one is pretty obvious, but it bears repeating, because if you have just given birth you have Hormones, and you might be expressing, and you might still be staying in the hospital or a place that isn’t home, and you are going through something that is just ridiculously stressful – but sleep (and self-care in general) is pretty critical.
  2. Express breastmilk (this one is for the birthing parent, obviously). Fed is best – I’m not hating on formula per se – but babies that receive milk in the NICU are less likely to develop infections. Infections are the worst. They can set your baby back weeks, and in the worst case scenario they can be fatal. Furthermore, breast milk is medicine. Some parents won’t even be able to hold their babies, but this is something you can do that is concrete and incredibly useful to your child. Its also good for women: it reduces the incidence of post partum depression; it burns calories and helps shrink your uterus; breastfeeding (if/when you get there) releases oxytocin and helps with bonding. There’s another weird thing about pumping, though, that I didn’t expect: most of the socialising I did with other parents, I did in the expressing room. I didn’t make any lifelong friends, but I did make some Facebook friends, and I was grateful for the interaction with people who knew what I was going through. Our hospital had a small room with three little cubicles separated by sheets, and while I often listened to podcasts or watched shows on my phone, I would occasionally chat with other women through the curtains. I suspect American hospitals don’t have pumping rooms (because babies have rooms rather than bays), so this may not be relevant to you.  But my point is, there is value in NICU solidarity, and there will always be ‘long termers’ both ahead and behind you. Its not a community anyone wants to be part of, but knowing other parents on the ward is certainly useful.
  3. Don’t be afraid to advocate for your baby, or to ask questions of the staff. My girls were on high-flow oxygen forever. FOREVER. They kept taking Fiona off high-flow, only for her oxygenation to dip into marginal territory. Her monitors would alarm on and off for an hour and then they would hook her back up. Finally, one day, as they prepared to turn her machine back on, I said ‘could we try low flow?’ (low flow is what you think of when you hear someone is on oxygen – tiny little nasal prongs that hook over the ears). Low flow is better because its easier on their lungs, it makes them much easier to handle (better for parent cuddles) and, on our NICU, it meant they could be moved into Special Care, which was quieter and calmer and less stressful for everyone. Anyway. Fiona killed it on low-flow. And then, a couple weeks later, almost the exact same thing happened with Daphne, except this time I spoke up earlier. The staff know what they’re doing, but you know your child best.
  4. If you live far away, or are unable to spend time at the hospital, ask if there are ‘cuddle clubs.’ Babies benefit from being held – they gain weight more quickly; their blood oxygenation goes up; and their breathing rate can slow too. A cuddle club is a program where volunteers hang out with a baby for a couple hours – the same way a parent would. The nurses will hold babies when they can, but it never hurts to ask for more.
  5. You can always call the NICU. I tried to call when I was pumping, or before I went to bed at night. The reports got less detailed as the girls got bigger and healthier – after Fiona moved into Special Care, I called and the nurse was like ‘…yeah, she’s fine. She’s settled and sleeping.’ and that’s when I realised we had entered a new phase of the NICU journey. But it meant that I never went to sleep worrying that I was missing something, and it also meant that I knew who the nurses were, and they recognised me as well. Once they started breastfeeding, I called to let the nurses know I was coming, and that was really helpful for the staff. Its also THE WORST when you show up to breastfeed your kid, only to realise you’re a little late and they’ve just been given a feed by the staff. The staff hate it too.
  6. Please please please take care of yourself (see: SLEEP). Eat real food, seek help if you need it (most hospitals offer grief counseling and/or have counselors on the NICU, which you may as well use, since its there and you’re clearly going through some stuff)(even if you don’t, make allies in the NICU. I was so grateful for a lot of the staff, but particularly the breastfeeding consultant and speech and language therapist, both of whom had more flexible schedules than the rest of the staff and were more available to answer questions and help  me chart a path through the NICU).
  7. Get some fresh air. NICUs are hermetically sealed so if its gorgeous outside, take a walk. In fact, unless its a torrential downpour or subzero degrees (Fahrenheit), I would suggest spending some time outside.
  8. Accept help when it is offered, and remember life is long, and you can reciprocate later. People want to help, so let them.

It turns out I had to really curb my instinct to write a LOT about boobs, so I think I’ll write more about that next time…? Lucky you.

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