Monday, July 22, 2013

Of social workers and leaving the hospital alone

About a year ago I was preparing to discharge from the maternity ward (actually, the maternal fetal medicine floor -- after delivery they'd returned me to the same floor where I'd been put on bed rest).  I have heard many NICU moms say that the hardest thing they had to do was leave their baby at the hospital when they went home.

That wasn't me.

And it's not that I'm not sentimental (I don't think that's it at least), it's that leaving him there -- it wasn't breaking any dreams. I hadn't yet had a chance to dream of bringing a bundle of joy home with me from the hospital. We hadn't made it that far. We hadn't even made it to a viable age. There was no cradle or changing table or carefully chosen clothes to greet him. Indeed, as I looked at him, he didn't look like a baby to me yet. Not really. He looked like a fully formed human, yes, with perfect nails and eyes that didn't yet open and mouth and lips and tiny tiny eyelashes, and fingernails thinner than crepe paper. He had beautiful silky dark hair growing in. But he was not a baby. He was too small to be a baby. If he came home with me, he stood no chance of survival. I knew that. And that trumped any mommy desires or hormonal impulses. There, in the hospital, he might become the boy, the baby, that I dreamed of. But he wasn't there yet. He was, nearly literally, only half-baked.

My time in the hospital, recovering from my c-section was surreal in some ways. And it wasn't just that I was very very sick. When the lactation consultant came by to help me produce milk, it was with a machine. She was not teaching me how to help a newborn latch. Indeed, she barely stayed. She walked in, saw that I knew what I was doing, asked if I had any questions, made sure I'd gotten something, and then left.  I never saw her again.

There were a lot of visitors like that. I'd learned with my first two children that many hospital personnel visit you those first few days after baby is delivered. They all introduce themselves, pass along some information, and then leave. "Hello, I'm Mary from records. How would you like your baby's name spelled?  Here's how to file for a social security card." or "Hello, I'm Jim. I am a specialist in how not to shake babies. Shaking babies is bad. Have you watched the (traumatic) video about shaking babies? (Did you know it can lead to brain damage?)  Please be sure to sign this form before you leave.  It says that you've watched the video and won't shake your baby."

The first time we had a child this signing-to-say-we-wouldn't-shake-our-baby completely threw my husband off. "People would SHAKE their baby?" he said, after he'd realized they weren't talking about bouncing babies or rocking babies, like he'd initially thought, but actually violently shaking an infant. Two sleepless months later and we understood a little better why someone like Jim walked in to all the hospital rooms.We decided that Jim's job was actually very important.

But the point is, you never see Mary or Jim or any of the others again. They come, they deliver their spiel, and then they leave. The familiar faces you see are those of your OBGYN and maybe the pediatrician.  Except I wouldn't get a pediatrician visit. My baby was under the jurisdiction of neonatologists, and they were seeing plenty of him.

So, when the social worker walked in, I had two reactions. The first very internal but intense reaction was "why is there a social worker in my room? I didn't do anything wrong. I didn't mean to have my baby early!" And then, once I realized that she had forms for me to sign that would help get Jonathan the medical care he needed, I relaxed a little. In my head put her in the category of Mary and Jim. I'd never see her again. She was just there doing her rounds.

Except that I would see her again. A lot. She became one of my favorite people in the NICU. So, word to all you NICU parents out there -- befriend your social worker. If you don't have one, you should, so find out why you don't. I'm actually glad I saw her a lot more often, because the eight state programs that Jonathan immediately (or within a month of birth) qualified for as a result of being under 1000 kg at birth?  They were difficult to navigate. "That helps with what?  How do I -- huh?" I barely understood when she explained it to me patiently the first time.  It would take another two or three times before I got it figured out. And my husband and I both have advanced degrees. (Me just barely, but it counts.) So, we're supposed to be smart people.

The social worker worked the social system where I could not. She had the energy and know-how to find Steve and me the resources we needed to manage NICU life. Our gas bills quadrupled (oh, I should add that to the list of things to buy parents of preemies -- gas cards!!) but she helped us navigate how to be reimbursed for our hospital trips.

Our NICU had this weird system of getting a primary nurse that seemed a lot like a poorly designed courting or match-making game. It seemed that just as Jonathan got sickest, all the nurses that knew him best got reassigned to other babies. I know a little of why now, but it was frustrating and hard. I didn't like continuing to meet new nurses, wondering if they  might be the one who would become his primary. I didn't like having to re-explain my son's temperament.

Beth, my social worker, helped me figure all that out. She knew who to talk to in the NICU, and advocated for me. She finally found me (three months into a five month stay) a person or two who would be primarily in charge of my son. I've never felt more unpopular in my life.  Three months to get a date for my son?  I thought he was something spectacular. Why didn't the nurses want to watch him, too?  But it wasn't him. It was the match-making game. I'm sure I'll get into this later, so I'll drop this thought for now.  But, the point is, Beth was my solution to this.

In short, she was amazing.

Social workers -- you are amazing.

Friends -- hug a social worker.  They are amazing people.  When you're down and out, they help pick you up. They help you figure out how to get the resources you need to survive.

So, even though I didn't think I needed a social worker, even though I felt a wee bit offended that they had sent me one (seriously, is child protective services next?!?) -- I'm glad they did. I cannot speak highly enough of that profession or the people in it. Social workers, you see us at our worst. Thanks for helping us make it through. Thanks for persisting when we act like we don't need you or don't understand the eighth time you've explained something to us.

I was preparing to leave my son at the hospital about a year ago today. I spent as much of the day in his hospital room as possible. On day two I had finally looked at the binder they pointed out on our first day there. It told us how to care for a preemie at various gestational ages. It started at 24 weeks. I laughed nervously with Christina about that. He wasn't yet there. Guess there are no road maps for a 23 weeker.

I would return home to a rented hospital bed and a chalk board hippo affixed to the wall at the foot of the bed.  The hippo still read "23 weeks 1 day." I would erase the sign, and while I no longer used the chalk board, I would count each day of life now.

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