Yesterday was the day Baby Z was scheduled to be delivered. Instead she was one week old.
I was discharged on Wednesday, but allowed to stay another night to recover and be close. That night was a lonely one in the hospital. I spent as much time as I could in the NICU, visiting with our girl, holding her when I could. I knew it would likely be my last chance to see her during those quiet evening hours, until we could bring her home.
Mac hadn’t even had the chance to hold Baby Z, so Thursday afternoon I took Jaye down to the courtyard to play outside so he could visit with Z. As I stepped outside and felt the sun through the summer fog, I realized it was my first breath of fresh air in a whole week, since I was admitted the week before. That day, one week earlier, my very brief surreal moments outside were all experienced outstretched on a gurney, going to and from each ambulance. Who knew then what lay in store.
With all the emails, texts and tweets since then, it’s hard to remember what updates I’ve provided about me and Baby Z. But I’m too tired to go back and read what I’ve written this past week. So here’s the update about our little girl (maybe in too much detail?).
We are very lucky, though I’m not sure what luck has to do with it. We are very fortunate. We are very grateful. Still, we don’t know when she’s coming home.
When I saw Baby Z’s chart, her primary diagnosis for admission was “prematurity, respiratory distress.” Born at 33 weeks and 3 days, she weighed less then four and a half pounds. Yet she is doing surprisingly well. She is still not ready to come home, and won’t be for a little while. Whether it’s a week or two or more, we don’t yet know. There are certain milestones she needs to achieve before she can be discharged. While she is already doing many of those things, no one can say how long the rest will take.
First, she needs to be able to breathe on her own. Amazingly enough, she is. The steroid drugs they injected into my ass must have really helped her little lungs develop. I had one round (2 shots) 24 hours apart when I was admitted at 28 weeks. They began a second round when I was brought to the hospital last Thursday, with the second shot administered just a few hours before she was born. After birth, they covered her face with a respirator, aka CPAP, which helped her breathe. When she was just one day old, they replaced the mask with a simple oxygen tube in her nose, like the one I had. That night, she pulled it out, and she has been breathing on her own ever since.
Most babies her age experience periodic breathing episodes or apnea, where they stop breathing for a stretch of time. The alarms on their little monitors go off if it happens for 20 seconds. They need to have five days without such incidents to be cleared for discharge. Baby Z has never even had one incident.
Second, since they are so small, they need to maintain their body temperature outside the isolette and sleep in an open air crib without artificial heat. This is often a matter of trial and error. Since they took Baby Z out of the box on day 5, her temp has been pretty good, as long as she stays swaddled or wrapped well in blankets.
Third, she needs to be able to tolerate her feedings so she can grow. Since their bellies are so tiny, they try to slowly stretch them with fortified feedings every three hours, in increased amounts, depending on their weight. For a few days she had trouble with the increased amounts (i.e., it remained in her belly or came up). Every spit-up seemed like a setback. But she seems to be doing better and has already regained her birth weight, growing a few grams every day.
The problem so far is related to the last milestone, which requires her to be able to feed through her mouth. She is so tiny and sleepy and her muscles simply aren’t developed enough to suck and swallow for very long, if at all. She just can’t eat a whole meal by mouth, so she is fed through a tube in her nose that goes down to her belly. We’re working on feeding by mouth, but it is slow. Forget what I ever thought about breast or bottle feeding. She will inevitably need a combination of both. Plus every meal is fortified with extra protein and calories so she can grow. Right now, we just need this girl to eat.
The hospital is very supportive of breastfeeding, encouraging moms to establish a good relationship with the NICU babies whenever possible. But like other babies her age, Baby Z just isn’t there yet. The idea now is to try the breast or bottle before every other meal, to give her a chance to develop those skills. She has shown interest — it thrilled me when she latched on for the first time, just for a few moments — but it has been inconsistent. Sometimes she is just too sleepy. Sometimes she is alert and learning to try.
As we sit there together trying to nurse — in front of nurses, doctors, parents and whoever walks by, pretending this is such an intimate and sacred act — I talk to her. Come on baby, I tell her, give it a try. This is how you’re going to get big and strong. You have to get big and strong and learn to eat so we can take that tube out. You have to get big and strong so you can come home with mama, dada and big sister. And I find myself repeating it, over and over. Big and strong, baby girl, big and strong so you can come home. Sometimes her eyes open and she looks right at me. Sometimes they brighten and she opens her mouth. Sometimes they slowly close and she falls back asleep.
It’s only been a week but it’s a slow process. They can’t tell us how long it will take. We don’t know whatever other setbacks may lie ahead. But we are hopeful. We hope to bring her home soon. It feels like an eternity right now, when we walk out that door each afternoon. I wish we could go earlier and stay later, but we have to provide Jaye some sense of normalcy. It’s been hard on everyone, and no one is really getting what they need. But it is what it is.
Thursday afternoon we were getting ready to leave the hospital. I’d been awaiting that moment with a sort of dread. Yet Baby Z had a good report, I got to spend some time with Jaye playing in the courtyard, breathing fresh air. I was going home with my amazing husband, or if not home, to my family’s house where we would be well cared for. I was feeling pretty good, but tired. As we approached the front door, I was surprised at how remarkably calm I was.
Then I walked through those doors and into the outside world, and as it hit me the tears came. I was leaving. She was staying behind. She was upstairs in a nursery crib, left among other sick babies to be tended to by nurses. We don’t even know when she’s coming home. But we had to go. I stopped walking to inhale some fresh air. Mac held me tight. He offered to bring up the car but I wanted to walk. I looked at the time and saw it was 4:05 pm, which meant it was about 4pm when we walked out those doors — it had been exactly one week since I was admitted at 4pm last Thursday, exactly a week before.
What a week.