Ella starts waking up at about 5:30, and starts feeding next to her mother in bed. She clusters a few feeds together before she really gets up between 9 and 10. I’ll generally get up to change a diaper around 8, then drink coffee, read email, check blogs, and do a little work on my online course.
We aim to arrive at the hospital at about noon, since that is usually the first that Will wakes up. So we’re hustling around the house a couple of hours before that, feeding Ella and changing her and cleaning her up, packing her stuff for the day and just generally getting her ready. Keeping an eye on the clock, too, for we need to find a good window to get her to the hospital before she gets overly hungry again. In the meantime, we’ll try to hang out and play with her a little bit.
At the same time, we’re of course feeding and cleaning ourselves. Plus packing up some food for the day and trying to find some comfortable clothes that will still make a decent impression on the medical staff. At some point, The Wife will need to sit down for 30 to 45 minutes and pump some milk for The Boy. Plus the normal fun of dishes, and picking up dirty clothes, and all of that.
I throw our four bags into the car to drive the 35 or so minutes into the city (thankfully, there’s little traffic in the middle of the day). If we time it right, Ella usually sleeps, and gives us a chance for some conversation or quiet.
We park the car (the garage is free here!), and pull out all of the bags and stroller and assorted stuff, and make our way past security and up to the unit. Sneak a peek at The Boy, then wash our hands (which we’ll probably do 30-40 times over the next ten hours), then say ‘hello’. Check the level of oxygen (O’s) he’s getting (we’ve tried to wean him, but he still needs a tiny wisp) against the oxygen saturation in his blood (sats), plus his heart and breathing rate. Then do a quick assessment of his general state vis-à-vis feeding. Speech Therapy (the team of specialists who preside over bottle and breast feeding) have recommended that – due to his heart and cleft issues, along with some peculiar feeding concerns– only parents and speech therapists feed him. Which is both a great honor and a huge responsibility, as it is important that he have consistent and positive experiences with the bottle to allow for growth and language development and a whole bunch of other stuff. Plus, it is some of the only time we will get to simply hold him.
He’ll get two ounces of breastmilk every three hours, whether he takes a bottle or not. Whatever he doesn’t take by mouth (if he’s sleeping, or just uninterested, for example) will be delivered by syringe pump through a nasogastric tube (which goes up his nose and down into his stomach). So we have a window of about 45 minutes to give him a 30 minute feed (and never longer, due to his lack of endurance related to his heart condition). We use a Haberman Feeder, which is a genius invention that allows a baby like ours to take milk by mouth even if he can’t produce a suck. Whoever is giving the feed needs to watch his subtle cues to know when to squeeze the modified nipple to deliver a few drops of milk into his mouth. Which can be a bit tricky as some of his aversion to oral stimulation can sneak up on you. But assuming he is willing and not gagging at the sight of the bottle, the Haberman helps cope with low energy and a lack of suck. Unfortunately, this also means that it is the perfect device to drown him. So the feedings are quite stressful, though it is necessary to find a kind of Zenlike calm to face the challenge and help him through the inevitable chokes and gags and heart rate drops. As a result it’s fairly taxing for both the feeder and the feedee.
Once we’re done with the bottle, we change his diaper (quickly and smoothly, to avoid a big reflux of milk), fortify the remainder of his breastmilk with powdered formula, load it into a syringe, set up the pump, check his N-G tube for placement, and fire away. We’ll also give any meds that are scheduled. If he’s still awake, we’ll gently pick him up and sit with him until he falls asleep. If he’s upset, we’ll do our best to calm him down (to conserve his calories). He’s very observant and loves looking around, but he’s just beginning to be interactive and finally learning to enjoy being held.
In the midst of all of this, of course, we’ve got another plate spinning: the lovely Eleanor. We’re constantly checking on her for hunger, vomit, messes, fatigue, and cheery playfulness. Mixing up her cues can leave her poopy but asleep, exhausted and overstimulated, burped but gassy, and other unfortunate combinations. But mostly, she keeps us entertained, with her cute faces, heart-stopping grins, and ridiculously overstated bowel movements. Besides looking after Ella, we’re always looking for a chance to eat something ourselves, and for a few windows in which to do some (more) pumping. On most days, we take the stroller out for a turn around the block.
So, feeds at 12, 3, 6, and 9, with departures for shift changes at 3 (this makes the 3 o’clock feed existentially challenging) and 7. Speech therapy will come by to feed Will and/or consult with us at either 12 or 3, and we’ll try to be around for impromptu meetings with the doctor, nurse-practitioner, social worker, case manager, physical therapist(s), respiratory team members, and nurses. When we’re at bedside, the nursing staff is gracious enough to allow us to take the lead in his care, so we’re learning a lot.
If we’re lucky, the 9 o’clock feed will go smoothly, and we can say ‘goodnight’ to a sleeping Boy around 10:30, put a sleeping Girl in the car, and hit the road. If we’re unlucky, we’ll stay a bit late and/or sneak in another feed for The Girl to tide her over for the ride home. On the way, we might stop for groceries, diapers, or other supplies. Or maybe an ice cream cone. Getting home means cleaning up and resetting for the next day, plus feeding and burping and changing and diapering. And convincing Ella that that the anxious feeling she gets just after midnight is not a second wind, but rather utter exhaustion. One final pumping session, and we usually get to bed around 2, after I post something on the blog that I wrote in fragments (often with one hand) through the day. Ella will wake up between one and four times during the night, but The Wife generously allows me to sleep through most feeds.
Taxing? I guess. Overwhelming? Not usually. Mostly, we’re grateful: glad to have the time and resources and support to spend so much time with our kids. Thankful for the opportunity to get to know our son, and to learn how to care for him, and to enjoy all of it through the eyes of our daughter. Grateful to have two long-awaited children, and friends and family with which to enjoy them.