Looking after our own needs, and Lena's, is complicated by not being able to address most of those needs while we're with Clem. My image of wrapping the second born baby in a carrier and, for at least some of the day, going about family life? Not possible in NICU. The normal, completely expected and valid, adjustment behaviour of the first born, that at home we could let run it's full expression in the safety and privacy of our home and garden? Yeah, not so much. No one wants to see a room full of babies woken up by a fractious pre-schooler. I can't even throw together lunch or a load of washing while chatting with my newborn, let alone sleep when the baby sleeps. And so our family life right now is disjointed and exhausting, without any of the benefits that clever multitasking might bring if we were at home.
Clem is gradually starting to spend more time awake and therefore also needing more comfort when he gets unsettled which, although still complicated with all the wires and tubes he has attached, can now finally involve more holding him without causing too much more pain.
We have however settled into somewhat of a daily rhythm. Most days, Mike goes up for the early NICU shift while I pump and Lena sleeps in. Then Lena and I spend a little time together getting ourselves up, having breakfast etc. before both heading up to see Clem for a little morning family time. Approximately 12 minutes later Lena has had her fill of listening to beeps and pings and looking at a baby she can't cuddle as much as she'd like to. So Mike and I do a weird dance of taking turns taking her out to the courtyard, having a snack, all while trying to both be present for the illusive 'rounds' where updates on Clem are shared between Drs, surgeons etc. These run on some kind of mysterious schedule where it's impossible to predict when they might get to your baby. However they are worth waiting for as they're very informative and give our days some kind of direction and focus, getting the overview of how Clem's doing and a sense of the plan for the day. Everything's day by day here.
If Clem is settled we often manage a family morning tea/packed lunch in the NICU parents' room, before I pump again, and then Mike and Lena head back to our accommodation and I stay with Clem. The staff aim to avoid any non-essential procedures or disturbances from noon to 3, so I aim for a nice long skin-on-skin cuddle at that time which Clem shows his appreciation of by sleeping almost the entire time in my arms.
Sometime after that when either my hunger or bladder reach a critical point, I reluctantly detangle myself from baby and wires and tubes and try to resettle him back in his bed. Sometimes he's so drunk on cuddles this is surprisingly easy, whereas other times he's cranky and wants to be put down even less than I want to put him down. While he's awake we do his 4hrly 'cares', which involve changing his nappy, switching his oxygen saturation sensor to the other foot, taking his temperature, cleaning his eyes, and doing his mouthcare. Mouthcare is definitely my favourite as while he's technically still nil-by-mouth, we are able to wipe some fresh breastmilk or precious colostrum that I've saved onto his lips and tongue, which he loves.
Somewhere in there one of us tries to catch the afternoon dr's rounds, and then, once he's settled, I pump again before heading back to our accommodation for some dinner.
After dinner we all head up to the NICU to read a bedtime story with Clem, and enjoy a few more moments of family time. If he's unsettled, one of us will stay with him while the other heads back to help Lena get ready for bed.
While I do get up and pump during the night, it is strange to have a newborn and not be feeding and settling through the night. But somehow it doesn't mean we're getting much more sleep, and I would give anything to be up hourly if it meant our baby could be well and with us all the time.
...and repeat. It's very Groundhog Day, and there's no day off in sight for any of us, least of all Clem.
On the positive side, Clem has been started again on very small amounts of breastmilk which are given via a long tube that goes via his left nostril all the way down through his stomach and past the repair in his jejeunal intestines. This way the milk doesn't put any pressure on the healing surgery sites. The aim is to slowly bring him up to full feeds via this tube, at the same time reducing, and then stopping completely, his IV fluids and parenteral nutrition. Once this is achieved, we will start slowly introducing feeds via the tube in his other nostril that just goes to his stomach. This will be the big test of the repair site! And once we know that it works, we can finally start breastfeeding for real.
It's a long road but at least it seems we're making some progress along it now. We still have no idea when we will be home, but if we escape further complications, it's looking like weeks rather than months.
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