I did something refreshing yesterday: I talked to someone. That is to say, I spoke with a real, live person who exists tangentially to our odd existence of hurry-up-and-wait. It was a pleasant experience, and got me thinking about where we are, and why. And it helped me realize that this little play-by-play may not be up to date, exactly.
First, if anyone out there is still praying for milk production, please stop. Please. The floodgates are open: The Wife is feeding both kids and storing a ton of the white stuff besides. All of the coaching and suggestions have borne fruit, in spades: a couple of nights ago, she paired some beer with granola and had us scouring the house for appropriate vessels the next day and night.
Speaking of milk, Ella is gaining weight, with a Buddha belly and chunky thighs to show for it. Will is eating a fair bit as well, but his weight is holding steady. With the new post-extubation workload and glitches with his feeding, he’s still hanging out at around five pounds. He has a nasal-gastric tube, which feeds milk directly to his stomach, and gets a feed every three hours. In addition, we’re working with him during each daytime feed to take a bit of a bottle. He has a special nipple that allows him to eat in spite of his cleft lip and palate, though right now it is a ton of work for a few milliliters of milk. In addition, his heart condition means that what would be a solid workout for even a completely healthy baby can be an overwhelmingly exhausting experience for Will. So we’re keeping a careful balance between asking him to eat by mouth (so that we can get him home) and allowing him his lazy feeds to gain some weight and strength (so that he can eat by mouth, and we can take him home). To that end, we’re getting some great training at HSC in this dangerous and challenging art of bottle-feeding a heart baby with a cleft.
Looking past our goal of getting Will home, we’re already thinking about his second heart surgery. His first surgery is considered ‘palliative’, which is to say that it allows him to stay alive and grow to the point where he can have his second surgery, which will in turn give him much better (but never completely normal) cardio-pulmonary function and will allow him to eat, grow, and live with more ease. The second surgery can happen as early as four months, but the surgeons like the babies to attain a certain size before surgery, which of course brings us back to feeding and growing. So, I guess you could say that all of us truly are in a hurry-up-and-wait mode.
Speaking of ‘all of us’, The Priceless Nana is, unbelievably, still on the roller coaster with us. Her presence has kept us sane and supported, and allowed us to take on all kinds of otherwise overwhelming projects. For example, she traded overnights with me when we were able to stay at Will’s bedside for about a week, and she’s helped us to work out a split-shift schedule where I come to HSC in the morning to feed The Boy, and everyone else comes in the afternoon/evening. We keep trying to send The Priceless Nana home, but she keeps pushing back the date. When we try to thank her for all she’s done and tell her that we couldn’t have made it without her, she mocks incredulity and says, “what? I haven’t done anything except hold my grandbabies.” Her endurance and love are quite beyond words.
We don’t know how long we’ll be in this current phase, but we’re mighty hopeful: Will is becoming an eager feeder, his bright eyes tracking the bottle and synchronizing his head and mouth to intercept the nipple and chomp away. If he’s not gulping down a ton of milk just yet, we know he will, and probably sooner than we would expect.