Sunday, March 11, 2007

When Z. came home (long even for me)

So I wrote all this stuff about my labor in the run-up to Z.'s birthday, and I ended the story with Z.'s transfer to a hospital across town. It was a week before she came home.

That was actually the horrible part. The length of my labor alone wouldn't have wrecked me if I'd gone home with a baby, but I went home without one. She wasn't even in the hospital with me. I checked myself out 12 hours after giving birth because that was the earliest moment I could, and there were things we needed to do: collect a breast pump, see our lawyer about protecting A.'s parental rights. The NICU at hospital #2 had made it clear over the phone that they didn't want us to come in and break down, and my father was on his way up to see the baby, so we waited until dinner time and tried to rest.

I had so much adrenaline still in my system from the birth and the crisis immediately after that I didn't realize how much my body had been brutalized and how little I should do. I think we walked something like 4 blocks from the garage, stopping for sandwiches on the way. I shuffled. We were so green at being NICU parents that we didn't know where the hospital's garage was or where the night entrance was. We wound up going in through emergency and crossing another city block indoors before we found the NICU. We had to scrub in, and fill out forms, before we were led back to her nursery. I picked out Z. immediately even though I had seen her for less than an hour, total, since she was born. It was like there was a spotlight on her.

I remember the first few times I touched her head, understanding that my hands had instantly found a new way to touch. It was through this touching that I understood I had a daughter, and myself to be her mother, irrevocably changed.

Z.'s umbilical stump had been shaved off so they could use those veins for IV fluids. She also had a hep lock in one hand, and electrodes all over her monitoring everything. We had to ask a nurse to pick her up and hand her to us to hold. The machines would make this "enh-enh" sound if she was disconnected. The phenobarbitol had been discontinued after her transfer, but there was still plenty in her system and she just slept. I know newborns sleep a lot, but this was maddening. I so wanted to see her eyes, and the few times she did open them in her first couple of days the drug meant that she was more likely to roll them back into her head than engage with me. We were told that usually if you have a seizure from lack of oxygen, other systems are also damaged because the body has shunted oxygen away from other systems first to protect the brain. So the IV was to give them a chance to see if there was damage to her GI tract before starting her on "solids"--in this case, my breast milk.

We had friends whose baby had been in the NICU of another hospital for bilirubin, and they had told us of the miseries of camping out at the hospital but raved about how good the nurses were. Not so at our NICU. The first nurse we had was a grown-up, and compassionate. She gave us one of Z.'s NICU blankets to take home for our dogs to smell. We never had her again. There was one nurse we had twice who also talked to us and learned our names. She was the one who told us that the full-term babies (like Z.) broke her heart because they weren't supposed to be there, and also that she used to work L & D and loved doing midwife births.

We probably had at least 10 nurses in the week that Z. was admitted and not another one of them learned our names, though we learned each of theirs. Most of them were about 24, with no kids (their gossip was all about engagements and honeymoon plans), and they called us "Mom." They only learned Z.'s name after we put it on her crib in 3-inch high letters. Since they usually were assigned to her only once, they usually had learned her case for the first time at rounds a few hours before we spoke to them. Yet they spoke to us as though they knew more than we did, we who had memorized every detail that came our way, whatever our lack of medical education. By contrast, the neonatologist and PA we saw most often were great.

The doctor had a lesbian goddaughter who was trying to have kids, so she identified with us, and she also showed great respect for our midwife. On the second day we met the midwife at the NICU, and she showed me how to use the breast pump properly (I'd already been at it for a day by that time), and reassured me that if all I was getting was colostrum it was wonderful stuff and they would still be able to use it. Then we sat holding Z. and talking, and the neonatologist turned up and pounced on the chance to hear about the birth from our midwife. Z.'s high Apgars had been bothering her. The story didn't add up to the diagnosis because she hadn't been without oxygen long. "Newborns," the neonatologist told us, "make all sorts of funny movements," and perhaps something had been misinterpreted as a seizure. What made more sense to her was that something, maybe just mucus, had partially obstructed Z.'s airway, and had been dislodged in the resuscitation process. This made so much sense to us, and yet Z. was still hospitalized.

In the immediate aftermath of Z.'s crisis, while we were still at hospital #1 but after Z. has been transferred, one of the staff midwives came by to check on me and said "some babies just punk out on you." I was completely bewildered by Z.'s punking out. She had made it through all those days of labor with a rock-steady heartrate. She had come out as perfect as you could ask for. She had started to nurse. And then she was grey and limp and taken from me and that possibility just hadn't been on my radar screen. All through the pregnancy I would worry if her usual hyperactivity slowed down, and the heartbeat at the next prenatal would reassure me. How could I have not been worried about her punking out? I have become, in the aftermath, a world-class worrier. And yet, I was never fully convinced of the seizure, even when I thought it had happened in NICU #1. Or at least, I wasn't convinced of what it implied: that I had a potentially very sick child.

Unfortunately, we saw a lot more of the nurses than the doctors. We would show up, I would hand over my labeled breastmilk containers and get more empty ones, we would go to Z.'s warmer, then isolette, then crib. She was in the sickest baby nursery for most of her stay, because of her diagnosis. We would find out about tests that had been done since our last visit, and the results would be negative, but someone would want to run them again when her phenobarb levels were lower. Her levels came down slowly because her little newborn liver wasn't functioning efficiently yet. The neurologist called her a normal sedated baby.

One time we came in to find her sucking on a pacifier taped to a rolled-up blanket. I tore it off in a rage. Her nurse said that she had been crying. So pick her up! I wanted to shout, but instead I explained that we weren't going to be giving her a pacifier at home so we didn't want her to have any in the hospital. (We held out on binkies for 8 months. Now she is seldom without one.) We became less deferential about waiting for a nurse to give us the baby. We made black-and-white pictures for Z. to look at. We asked, and asked, and asked, to be booked into the overnight room.

Z. finally opened her eyes to look right at me. They were this pure, pure charcoal grey, a shade you'd never see on anyone older. (Now they are a rich, cinnamon-chocolate brown.)

On the Saturday after Z. was born, she was started on a protocol to move her to what the NICU called solids. It involved giving her set amounts of milk or formula every three hours and increasing the amount every 3 feedings. I was three days post-partum and counting my milk output in millilitres, but we had a fair amount already frozen and specified that we wanted her to have breastmilk only. The protocol was designed for preemies who can't lose a gram, not for full-term babies who are fully equipped to lose a couple ounces while Mama's milk comes in. It turned out to be the most brutal part of her stay for me.

We went to shul so I could bentsch gomel, and then we headed to the hospital in high spirits, since we saw this as the first step in getting our daughter back. And yes, that was how it was: the hospital had our baby, and we needed to jump through certain hoops to be able to take her home. As it happened, my mother had been visiting Z. and was still there when we arrived. When she left, the nurse of the day who had been hovering came over and said "Mom? There's a problem with your breast milk." Apparently, Z.'s urine had tested positive for marijuana, therefore my milk wasn't fit to feed her. I hit the roof. A doctor--not our friendly neonatologist, but another one--was called in to deal with me, the crazy mother. She asked me "When was the last time you smoked marijuana?" I said "When I was 26!" She said "Oh, 26 weeks of pregnancy?" I said "No, 26 years old!" She laughed nervously. I said "There's a problem with the test! Call the lab!" She explained the difficulty of finding someone at the lab on a Saturday. I said "You think marijuana stays in the body for seven years!?!" She allowed that was unlikely. I said "If she's positive for marijuana, it didn't come through my body! And she's been here since she was five hours old!" She said "Ha-ha, our nurses toking up, ha-ha," and called the lab.

Two samples had gone in with Z.'s name. One tested positive for THC, one for barbituates. Which one was really Z.'s? Remember the phenobarbitol? We started the protocol with my breastmilk. But the nurse said the frozen colostrum was too hard to get out of the container.

The protocol called for bottle feeding to monitor the exact number of millilitres the baby drank. So Z. started on bottles. When we were there, we gave them to her. When we weren't, we sent breastmilk down via friends and family. The amount required per feeding increased faster than my milk production. While we were at the hospital on Sunday I broke down utterly and completely. A. held me and took me out of there. We walked a couple of blocks to a pizza place to talk away from the hospital. I didn't recognize myself in the mirror. I couldn't keep up with the milk. I wanted to take Z. home. I felt like I had been hit by a truck, physically and emotionally, and no one was letting me rest.

I decided to let them use formula if necessary to finish the protocol so I wouldn't lose my mind.

On Monday, the protocol was done, the IV was out, and I could put Z. to my breast. She ripped a line of blisters across one nipple and a bruise across the other. Because I hadn't given birth at hospital #2, their lactation consultants didn't know there was a breastfeeding mom in the NICU. (The lactation consultant at hospital #1 had very unhelpfully showed me a breast pump and said "If I can figure it out, you can.") It so happened that my doulas' work with a lactation consultant at hospital #2 as another one of their backups--but she worked the regular delivery floor. She came to help me out twice, but it took a bunch more consultations and a few more months before I could breastfeed her without pain. And then there was the nurse who told me at the third feeding that Z. had been crying after the last feeding, so she'd given her another 60 mils in a bottle because Z. was hungry and I should feed her more next time. This childless woman ten years my junior who didn't bother with my name gave my daughter a bottle after I was breastfeeding her, wiping out what was left of my reserve breastmilk in the process, and she told me this by way of accusing me of being a bad mom. And I felt guilty.

Finally, after asking every day, we got into the overnight room on Monday night--with Z. breastfeeding, our priority was higher. The overnight room consists of a glorified closet with two inflatable mattresses perched on folding cots, and a bathroom attached. It's in a corridor outside the NICU and they phone you to come over, get buzzed in, wash your hands, and nurse your baby. Two moms are supposed to share it. Two moms who've never met, with infants on their own different schedules, getting phone calls all night long to come over and nurse. A. had the option of staying in the family lounge in the NICU, which has two armchairs that folded into beds, but they were already staked out and the lounge was well-used until fairly late at night anyway.

I went to the charge nurse to plead my case, explaining about the 75 hour labor and the round-the-clock pumping and how not-good my emotional state was. It turned out the other mom's baby had already been moved back to the regular nursery in preparation for release, and the charge nurse found somewhere on that floor for the other mom to sleep. Hooray for the charge nurse! Once we got into the overnight room, we just didn't leave.

Z. came home on Wednesday. My midwife put me on modified bedrest for two weeks. The next time A. went out, the car was missing. And our insurance had lapsed because I hadn't managed to switch my license back to PA. I was pretty sure someone was trying to make me insane. (It turned out in her strung-out state, A. had blocked a neighbor's driveway, so the car had been towed--and not even to a city lot, so we got it back without proof of insurance.)

In order to put the baby on A.'s insurance, we got my chart from the birth, which was also Z.'s chart. It indicates a seizure on my breast. But all she did was go limp--if the L & D nurse hadn't been taking her footprints no one would have noticed right away. A couple of times in the newborn period, while she was sleeping Z.'s hands would twitch spastically and rhythmically, but when I held them it stopped. At two months, we followed up with the neurologist. He described the diagnosis as an "overcall," and assured me that if the twitches stopped when you held her, she wasn't seizing.

My mother wanted me to promise never to try for a homebirth again. She thought that if Z. had punked out at home we would have lost her. But I think just the opposite. I think we all paid for my transfer to hospital through Z.'s hospitalization. At home, the midwives would have intubated her and given her oxygen. We would have had to transfer to the hospital for two days of monitoring. But no one would have diagnosed a seizure that didn't happen, and it would have been a very different thing.

At the end of that whole week, at the end of the month where we cried every day, after the months-long lactation nightmare eased, I still felt haunted by an alternate universe where Z. had died. I couldn't make emotional sense of everything that had happened and my fine, healthy child, even though her health feels like a vindication of what I knew all along. I cry easily. I am highly susceptible to sentimental picture books about infants and New Yorker stories about dead children and dead parents. Every time I enter an intersection I imagine the car that's about to slam through ours. I am sure unexpected phone calls will bring bad news.

Z.'s first year was taken up largely with planning and opening the store. I wasn't much good at being a stay-at-home-mom, and things got better when she began daycare. She started talking around 10 months, walking at 14. A. was home with her for the summer, which meant I could put in longer hours at the store. I was pretty wiped out by August, desperate for our vacation. Z. was sick the entire week. I came home more desperate.

On the weekend before Labor Day our dog died. She died of everything, really, from a brain tumor to various organs failing, but it started with a series of seizures. They were silent and scary and they didn't stop when you held her. I was terribly sad.

A month later Z. pushed her stroller down the five steps from our yard to the sidewalk and went flying headfirst after it. I learned that if the worst happens to her I will watch and not turn away because until the moment she landed it looked like she would come down on the top of her head. She twisted and caught the impact on her ribs and left elbow, which broke in two places. She was in the cast for a month. Around the time it came off I started seeing someone for therapy. Then the retail season overwhelmed me and made me manic and sleepless.

Finally, we made it to my parents for Christmas, and Z. fell on a playground and broke her two front teeth. I wasn't there. I was out shopping, blithely, and came home to find her bleeding and her beautiful smile changed. I was distraught. A. was distraught. We had been planning to leave that day, and stupidly we went ahead with that plan. A block from my parents' house, at a turn she's probably made a dozen times in the six years we've been together, A. made a left into a stream of cross traffic. I was in the backseat holding a popsicle to Z.'s bleeding mouth and suddenly cars were bearing down on us--on Z. in her carseat. Somehow we weren't hit: one car braked, another swerved. I went into hysterics. Of course we spent the night at my parents'.

One week later Helen Hill was shot by an intruder in her home in New Orleans. Many many people have written about it; her memorial site is really wonderful. I knew Helen and Paul in college. Paul was one of the first people I met, on a bus ride to DC in the fall of my freshman year, and we did peer counseling together. Helen I knew through her roommates. I spent more time in their room my sophomore year than I did in my own. It was easy to underestimate her until you had seen the full extent of her talent, because she was this little, cheerful Southern pixie, but she was enormously talented and also had a jaw-dropping gift for inclusiveness that she shared with Paul. The summer after they graduated I spent a lovely week with both of them in New Orleans along with about a half-dozen other houseguests who happened to arrive at the same time, but over the years I had lost touch. I didn't even know they had a son until I heard about Helen's death. It turns out the first half of my pregnancy was the same time as the last half of Helen's, and now her baby no longer has his mother. It is as though my nightmare found my old friends instead of me.

Helen's death is why I am blogging. I started by checking the bloggers who were writing about her, then started reading more. I used to be better at writing in my journal, but lately I've stopped. I think the blog is more compelling because I know people are reading--mostly (at this point) people whom I know and love.

Since Helen died I haven't been back to therapy. I was just too sad to know where to start talking. But on Z.'s birthday my therapist called to see what was up with me, and I'm going to start again on Tuesday. I hope it takes better this time.


Phantom Scribbler said...

Ah, S., I'm so sorry. I hope that the therapy, and the blog-as-therapy can help you work through some of the trauma of that time.

Particular sympathy on the breastfeeding issues. I had a line of blisters with Baby Blue, who was relatively trouble-free as nursers go. With LG I landed back in the ER at one week postpartum with mastitis and nipples so scabbed over that no milk could come out. (We had to wean him, and then re-establish nursing after the scabs fell off.) Really, they don't warn you that establishing nursing may be more painful than labor!

S. said...

Ouch, Phantom!

I think having a hard time getting going may make you more reluctant to wean. Not that Z. shows any interest in giving up the last few nursings, but man oh man, I don't want to start from scratch again.

niobe said...

I was holding my breath, waiting for the inevitable tragic conclusion, for the title about Z coming home to prove to be sadly ironic.

I guess I've been reading too many dead baby blogs when something resembling a happy ending seems remarkably like the twist at the end of an O. Henry story.

S. said...

Niobe, thanks for reading and for commenting.

Scrivener said...

What a heartbreaking narrative. Hope the blogging, and the real therapy, helps.

S. said...

Thanks, Scrivener. I think more sunshine will help, too. This was such a crappy fall and winter that anything that feels like it's ending is helpful.

Magpie said...

What a saga. The NICU stay sounds like it was both awful and unnecessary, a double whammy. I hope that this spring (whenever she arrives!) and summer are healing for you.

S. said...

Thanks Magpie--I wish Spring would just settle down and proceed, already!