We were released on Friday with a handful of prescriptions and care instructions. The next week was long and incredibly taxing. I was overwhelmed with both a feeling of gratitude that my baby was going to be fine and with an uneasy terror that if we'd lived in a different time or a different place or if we hadn't taken her to the hospital, she would have died. I love living in a time with so many medical advances, but in a weird way it feels like playing God.
Jayne still wasn't sleeping well; the antibiotics ravaged her GI tract, and she just couldn't get comfortable. She pooped constantly, and her little bottom was raw and ulcerated. We went through 20 diapers a day. My head buzzed atop tightrope-tense shoulders and my eyes ached from constant sleeplessness. I broke down multiple times, at one point crying tears that had nothing to do with emotion for nearly 24 hours straight--it was like my body was telling me I was sinking by springing a leak. I was so spent that I couldn't fall asleep--a cruel, spiraling irony. I found that gratitude for a living baby and bone crushing exhaustion are not mutually exclusive. I wasn't a good mother to Kate, and I couldn't take care of myself, let alone two tiny girls. I gratefully accepted dinners and playdates for Kate from wonderful friends, Jay did what he could while he was home, and even though it all helped, none of it was enough.
I know this is personal, but draping reality with doilies and daisies isn't my style, and I don't want to paint over the situation with high-gloss varnish. It has been hard. It is getting better.
Since being released from the hospital, Jayne has had more tests and doctor appointments. She will take prophylactic antibiotics and be reevaluated after a year. There is a chance she will need to have surgery in the future. She had finally adjusted to her original antibiotic when we had to switch to a different one, so we went through another bout of diarrhea and sleeplessness, though it's much better than it was the first time.
Living in the hospital for several days taught me how to be an advocate for my child, especially toward the end of our stay. I think I drove the doctors and nurses crazy with all the questions I asked, but I didn't care. I stayed on top of Jayne's meds and called as soon as she was due for more. If she was sleeping, I asked the nurses to wait on taking her vitals until she woke up. Sometimes I would make them wait for a few hours if she was taking a long nap--since she was in stable condition, her rest was my priority. If a nurse or tech came in to run tests on her, I always asked how long they'd been working with kids and if they had frequently done that procedure on tiny babies. When a nurse came in with a student, I allowed the student to stay and watch but insisted the nurse do the procedure. I called the nurses whenever I needed anything and requested to speak to the doctor when I hadn't seen her in awhile. I wrote things down and called competent friends and family for second opinions.
I lost all sense of "modesty" and nursed Jayne when she was hungry regardless of who was in the room. I slept during the day when I could (which wasn't often) and barely held on to my sanity most days until Jay came home at night. I took showers and choked down hospital food and didn't leave Jayne's side. I couldn't.
Our journey isn't over, but the hospital stay is. I am so grateful things played out the way they did. My heart is full, but there is a shadow there now from the knowledge that there are millions of mothers throughout the span of history who lived my experience but had different outcomes. If any of the variables had been different, Jayne could have, would have, died.
But I lived in America in 2014; I noticed Jayne had a fever; I knew to take her to the hospital; she responded to antibiotics; everything worked out. And now she's a completely normal almost five month old with a huge open-mouth grin. You would never know that she once tiptoed around death's long shadow.
And I have the luxury of productive exhaustion, of complaining about diaper blow outs, of watching my baby's eyes grow heavy over the video monitor. I have the uneasy peace of knowing I could have lost her but didn't.
Tonight as I walked Jayne to her room, she snuggled into my shoulder in slumber, curled like a comma against my chest. I stood by her bed, my heart aching with a love that filled the room, my lips pursed in a silent prayer of gratitude for all the nights like this, for all the nights she's mine.