life beyond the NICU

T has been home for a full 24 hours now and it still feels like this is all a test. I was texting with EJ about this last night (because once again our lives have intersected and we are kind of going through similar journeys – although I won’t pretend to know how much strength it takes to make it through a 4 month NICU stay!) and she said she and her hubby are going through the same thing with their little MB.

It totally feels like the NICU is going to give me a grade on how well I do and every feed I worry that we’ll “fail” and they’ll take him back! As though they’re still here somehow watching over our shoulders waiting to swoop in and rescue our baby from his rookie parents.

It goes without saying that going home from a prolonged NICU stay is NOTHING like going home after spending a couple days in postpartum with your baby. I have no idea what it’s like to stay in postpartum with your baby but I imagine you feel as though the baby belongs to you and you get to decide what happens to your baby even though the nurses are there to help.

In the NICU, as much as the nurses and doctors may try to give you the sense that you are the parent (i.e. for awhile we were the only ones allowed to hold/touch him without wearing gloves/gowns when his immune system was at it’s weakest), inevitably you end up feeling as though your baby is not fully yours because you do have to ask permission to do things like hold, feed or change him. There were definitely times when nurses asked us not to hold him because they wanted him to get good rest so he’d be awake and alert for his next feed, things like that which I imagine don’t happen when you have a “well baby.” Add to that the fact that someone else is making all the decisions around his care, i.e. what kind of formula he will eat, what his eating schedule is, how often his feeds will increase, when he can be in room air, when he can be in an open crib, etc. and it’s impossible to feel that sense of ownership that non-NICU parents must feel right from the beginning.

As hard as it is to feel like your baby is not completely yours, there is a silver lining. Spending so much time in the NICU with the nurses means you have weeks (sometimes months) to learn from people who take care of babies for a living, how to take care of your baby. You spend so much time learning about your specific baby before you ever have to care for him on your own. We learned T’s wet diaper cry, his hungry signals and about his deep love of his paci all while we were still in the NICU and I think it helped us know what he was asking us for last night.

On the other hand, when you’ve been in the NICU for an extended stay, it is scary as hell to suddenly be on your own. We’ve gotten so used to the monitors and the team of NICU nurses always ready to swoop in that it’s pretty terrifying knowing you don’t have that even if you don’t really need it. Our nurses were pretty hands off with us during the last week or so because it was clear that T would be going home soon. They let us take the lead, changing him, checking his temperature, feeding him, burping him, deciding if we wanted to hold him or just let him sleep in his crib. We did most of it on our own for the hours we were in the NICU but I guess it’s just different knowing that they’re there and now they’re not.

Beyond our adjustment from the NICU, there is T’s adjustment. And clearly he is needing to adjust.

We had to sleep with the TV on and for most of the night also had the light on. When we turned everything off he fussed and was so unsettled, when we turned things back on he calmed right down. Our poor boy spent the first three weeks of his life in an always lit, usually noisy NICU (beeping monitors do not phase him one bit) so it was to be expected that going from that to a dark quiet room would feel completely alien to him but it wasn’t something I thought of until EJ mentioned MB had a hard time with it on his first night.

It’s also REALLY hard to figure out how much clothes he needs to be wearing. The rule of thumb they tell you is one layer more than what you’re wearing but our room is so friggin’ hot (we have the space heater turned to 72 degrees) that Paul and I are literally in underwear and we’ve got him in a onesie + fleece swaddleme and his feet still feel cold. Tonight we’re going to torture him by taking his temperature (which he hates with all the hate his little self can muster) after having him wear different numbers of layers of clothes.

We’ve been trying not to hold him to sleep too much because we don’t want him to get used to it but his sleep quality just doesn’t seem very good. I finally caved this afternoon and let him lay propped up on my legs as I watched TV in bed until he fell asleep and that seemed to do the trick. I think he’s either cold or the adjustment home is making him feel insecure.

Another thing that took me by surprise, I was expecting that once he came home I’d have to pump less because I could breastfeed him a couple times a day. That would be true except my bo.obs think that EVERY TIME he cries he must be hungry and immediately start to drip all over the place. So I’ve actually had to pump more frequently because a) he’s not hungry every time he cries and b) breastfeeding tires him out too much so we have to give him the bottle as well to make sure he’s getting enough each time he breastfeeds.

I cannot wait until he’s a bit bigger and we can attempt exclusive breastfeeding (well, except for those six hours after I take my meds)! But I have a feeling that won’t be for awhile given he is only 5.5 lbs right now.

Anyway, just a few thoughts on our first day as the only people looking after our little man.

Oh and funny story, my first solo diaper change this morning (Paul’s leave doesn’t start until tomorrow and my mom was still on her way over) became three diaper changes. He was fussing and doing the wet diaper cry/kick so I changed him. About a minute later I hear a noise that clearly indicated POOP. I took a peak inside and yup, poop. He started freaking out so I only waited about a minute or so (rookie mistake) before I changed him again. Another minute later and once again the ominous sound of runny poo flying out of my baby’s behind. Took another peak inside and another small pile of the green stuff was staring right at me. So I changed his diaper like 3 times in under ten minutes.


T says it’s rough having rookies for parents


  1. Lian says:

    I really enjoyed your post because it helped me understand what a unique challenge it is to bring a baby home from the nicu vs your typical hospital nursery. The best mom who could describe the difference is one who’s done both, but I tried imagining another one of my babies in the nicu and what exactly would make me feel helpless, angry, and like I failed. A huge loss would come from not only of having a normal hospital stay (and honestly most HK hospitals including the one I went to did not provide the option of changing, bathing, sleeping, or plain hanging out with baby, so not losing much), but of losing those last pregnancy days. For one, a nicu baby somehow belonged in the nicu for weeks, but she’s really suppose to belong in me and with me. Second, nobody, much less strangers is suppose to have the privilege of knowing all of those little details about MY baby. And last, how is it that a nicu became a better place than my womb? For a typical pregnancy, you feel triumphant that the baby is finally out, but for a high-risk one, you feel bad. That is just a hard first step but I hope they will be just a memory as you reclaim your place. To end my long sharing, I laughed at the whole temperature thing because we always joked about how sleepless we were in the beginning asking each other “do you think she is cold? Hot?” I was so naive about all the babycaring because the nurses did all of it and just handed her over the last day. I was so clueless I didn’t even know to ask…

  2. the wingless one says:

    Thanks Lian. From talking to other NICU moms it seems like something that makes it all the more difficult is when friends and family don’t try to understand what it’s like. I’m really lucky to have a friend like you who even though you haven’t been through it, still tries to understand and be supportive. Hopefully we can get the kids together on video chat soon 🙂