Thursday, August 8, 2013

Day 22 - NICU Support

About two or three weeks after Jonathan's birth, I was talking to Cindy about support in the neonatal intensive care unit (NICU). You'll remember she had had a micro-preemie born just a few days after Jonathan. We hadn't met before our babies were born, but our husbands had become friends, or at least acquaintances, in the family room of the high risk pregnancy floor while she and I were stuck in our respective rooms hoping to stay pregnant a day or a week or a month or three longer.

When we did finally meet, it was at a "Lunch with Lactation" meeting at the NICU. Both of us were still sore from our c-sections and couldn't stand for long or walk too far.

I have to admit, the name of the meeting was unfortunate and confusing.  "Lunch with Lactation." Thankfully within a month or so they'd changed it to "Lunch with Lactation Consultants" or something of the sort and the purpose of the meeting became a lot clearer.

The meetings happened about once every other week, and we NICU moms (dad never attended for some reason) got free sandwiches and salads and huge chocolate chip cookies from Panera Bread and an opportunity to ask questions to the lactation consultants.

Since nearly all of us were pumping with a dream of someday nursing, it was hugely helpful.

Except that that first session it wasn't so much.

The first thing we did was go around the table and introduced ourselves. Sometimes birth stories came with the introductions (how often does that happen with complete strangers?) and at the very least we learned a bit more about the other infants in the intensive care unit. 

I felt a little alone, as we went around the table. I was one of the first to introduce myself, and I didn't get a lot of nods or knowing looks. There weren't too many micro preemie moms there. Each time someone mentioned a baby that was born before 28 weeks or under 2.5 pounds, I tried hard to remember who they were. It was increasingly hard to remember anything these days, so I made a point of trying to put those faces in my brain, so I could ask how things were going the next time I saw them on the elevator or in the family room. Maybe I should have made a point of remembering everyone, but I didn't have the brain cells for that.

J was the earliest birth. Only two or three others had introduced themselves as parents of babies born younger than 28 week.  As parents introduced themselves, I realized that weight at birth did not equal health at birth. One mom of a full term baby was in the room, and I think, being the only parent of a 8 pound or larger baby, she felt just as out of place as I did with my one pound baby. Her baby, her daughter, too, was struggling for life and trying hard to beat the odds. Before she was born her mother had already had to fight with doctors and transfer hospitals just to get someone to agree to give her daughter a chance, despite the odds, despite the potentially inevitable disability. It was humbling.

Cindy was one of the last ones to introduce herself. As she did, I though, "OH, THAT'S the Cindy I've heard so much about. I wondered if she'd be here. I was hoping she would. I wonder if she'll be my friend? I've assumed so, but she's sort of pretty and looks so well-put-together, and I'm a mess."  I realized it was awfully presumptuous to have assumed she'd be my friend, just because we shared the same floor of the hospital for a month. And then came the problem: How do I introduce myself to someone whom I've heard so much about, without seeming strange or awkward or overly enthused?

But she cut through all that with a look at me and a "I think our husbands have met. You're Jonathan's mom, right?"

Sure, she was put-together, but she was also warm.

The rest of the meeting was above both our heads.  The floor was left open for the moms to ask any question they had. Most of the questions were about nipple shields or HMF (human milk fortifier) and prolacta. These last two were things added to breast milk to up the nutritional content and calories for preemies. I had only barely heard of prolacta, and had no clue what HMF was. I was concerned about the 2 mls my son was getting. And how to keep up pumping.  I wasn't concerned about my supply, I made too much. I wanted to know how much I should be making so that when he DID reach a full-term weight, I'd still be making enough?  How long did I have to wake up every three hours every night to establish a milk supply? When could I start sleeping through the night?

But the women there were wondering about how to get HMF when they were discharged, and whether or not to try to leave the hospital entirely breast feeding their child or if they should try to get out of there bottle feeding (the easier way for preemies to eat) and hope that the breast feeding established itself when they got home. And how to tell how much their preemies had gotten. And if they should have scales at home. And how to get enough HMF into their child's diet if they were breast feeding exclusively -- was it even necessary? And when could they stop using a nipple shield (what the heck was a nipple shield?) and how to up their supply to make up for their baby's increasing demands and needs.

BREAST FEEDING?  That was so far away. It was a dream. I just hoped he'd make it that far. Under supply?  My son took only 1/16th of what I made in a day. He got it through a tube into his stomach.

The rapid fire of questions that were so above anything my son was dealing with left me overwhelmed and isolated.  I mean, they were interesting questions. To be fair, I'm sure if I were in a better and more optimistic state, I'd be storing them away for another day. If I hadn't just had a traumatic birth and wasn't recovering from three (yes, it was up to three now) forms of infection, maybe I'd have had more energy for this.

But moms who just had to teach their preemies how to eat and then they could bring them home?  They were in a different spot than me. I didn't know how to relate. I couldn't even pretend to be in their league. I wished I could, but at this point, I couldn't eve know if I'd ever get there.

Afterward, I met Cindy properly in the hallway. She'd felt the same as I had, which was a bit encouraging in a strange way. She asked if I'd gotten a NICU family support partner yet. I told her I'd heard of the program. It was this neat program in our hospital where other families of NICU graduates support current families of NICU babies and walk along side them, answering questions and being a resource and friend.

I told her I wasn't sure if I should.  "My son was born at 23 weeks. I think I'd feel even more isolated if I was partnered with a family that had a 26 or 28 week baby and thought that was the same thing," had been my gut response. 

"We've already met with our family," she said, "and they are amazing. The mom is so organized. They had this photo album of their daughter where they have a picture for every day of her life while she was in the NICU. Their daughter was born at 23 weeks, two years ago. She's adorable now. It sounds like they're really involved in their church, too. And they were really good about answering our questions. They told us how it was God's grace that had gotten them this far. And we were able to ask questions about what this meant for their faith,."

Suddenly I was interested. There was a family in the program, a family walking beside kids like ours, a family who had had a surviving baby, two years ago, born at 23 weeks.  I really wanted Cindy's support family to be OUR support family. I had a bit of support-family-jealousy.

That afternoon I signed up for the program. Even if I couldn't have Cindy's family, maybe there was another family like that out there.

A week later I got partnered with a family.  They dropped by Jonathan's area of the hospital to see if we were there.  We weren't. So they left a basket full of goodies -- Cookies that were cut into footprints, a sign that said "STOP, wash your hands before touching mine" and a framed image of Jonathan's name down the side, a poem where each letter in his name was the beginning of a promise.

A note inside said that they were excited to meet us, and that the signs would be useful when we took Jonathan out and about after he graduated from the NICU.

They thought he'd graduate from the NICU.  I looked at the signs, and the framed image of his name, and could only hope. Maybe he would.

I was exhausted. Steve was exhausted. Steve looked at me like I was crazy for signing up to meet a family like this. "Why are we meeting them, again?" he asked me, as we walked into the NICU at an appointed time.

"Because I need it." I said. I needed to know I wasn't alone. I hoped that this family had also had a baby as small, as fragile as mine, and that they could show me the way forward through this thick forest.  There had to be a path. Someone must have walked this road - or a road similar to it - before.

We met them in a private meeting room at the NICU. They brought a photo album. They'd taken their daughter's picture every day of her NICU stay. As I turned the photo album pages, I saw a baby that looked a lot like mine - all skinny with stretched skin -- slowly transform into a round cheeked baby and then the tubes began to be removed, and pretty soon only one thin tube, a nasal cannula, was all that remained on her face. And she looked like a baby. A happy, smiley baby.  And they had taken her home. And she had stayed their baby, their child, for years. Two of them, to be exact. And she had started out as a 23 weeker, too.  It was the same family that had adopted Cindy and her family. They were taking on two families at the same time. I smiled.

As Jonathan was still safe in his plastic bubble, I asked them if they'd like to come meet Jonathan. Tabitha, the mom, said yes. Richard, the father, however, had just come from work, and suggested that he should stay behind with Steve because, even though he didn't have any symptoms, he was feeling a bit under the weather.

Tabatha removed all her jewelry scrubbed her hands at the wash basin, up to her elbows for a full minute, and then walked with me to his room. She squirted hand sanitizer on before walking in, and never once asked to touch him.  Here was a family that understood our concerns about germs!

A few weeks later, I saw their two year old in the waiting room at the NICU. She'd come with her mom as it was her second birthday. She stayed in the front lobby and her old favorite nurses came out to say hello. I said hello to her too. She wasn't amused by me. She gave me a stern look like "whatcha lookin' at lady?  I don't know you, and there's nothing to see here."

I walked away smiling.

Miracles could happen. Thanks to doctors, advances in technology, and God's grace, babies that were all stretched skin and toothpick bones could become stern two-year-olds, scolding strangers with their eyes because, after all, as her eyes said, I don't know you. There's no reason to be looking at me.

You're just a miracle, that's all.

Maybe we weren't so alone after all.  Maybe there was a path through this forest. Maybe it ended in a glade where sun streamed in and grains and wildflowers danced in front of us, where there was a path, a solid stone path to walk on, and a horizon to see. Maybe we someday would be able to see into the distance and dare to dream about tomorrow. For the moment there was only thick undergrowth and a path so dense it felt like every step forward was half a step backward. There was no dreaming, because the next day might bring an abyss.

But maybe it wouldn't always be like this.

Maybe there was hope. Yes, there was hope. A stern and stubborn two year old told me so with dagger eyes. There was hope.

["Tabitha" - I don't know if you are reading this, but THANK YOU. Thank you so much for giving parents like me a bit of hope.  "Cindy" - I know you're reading this. Even though our paths were different -- yours mostly a long steep hill that never seemed to end, and ours full of thorns and pricks and stones to trip on -- even though they were so different, I am so glad that we walked these roads at the same time. Thanks, both of you, for helping us know we were not alone. Thank you so much.]

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