To All the NICU Dads…

You are just what that tiny baby needs. With tender fingers and strong hands and with sweet words in a deep voice, there is no one like you.

Don’t forget how important you are.

Gone Is The Long Babyhood

J LaughingRecently, J has taken ownership over his role as Big Brother. It used to be that M was crawling in all the wrong places (usually through J’s toys) and throwing all the wrong things (like J’s toys) and generally making a mess of things. But, as M has started walking more and crawling less, it’s as if her brother sees her differently. She’s no longer the baby who needs protection and redirection; she’s the little sister who is playing on J’s team. They run through the house and push toys all over the place. They squabble and squawk and giggle from one end of the house to the other. J’s imagination is on fire these days, and he thinks of all sorts of creative activities for them to do, which generally involve imagining that they’re repair people of some sort in large trucks. As hard-headed and opinionated as M is, she must not fully realize that J is organizing her play; she’s just glad to be allowed on his team.

What made me notice how much the play around here has changed is how J talks. Everything is “we” now. (We’re hungry. We want to go for a walk. We like peaches! We do not like to clean. We love dogs, Mama. We want more apples, please.) All this “we” business is adorable.

But, J also speaks for M about how she’s feeling or what she needs, which I actually find extraordinarily helpful. I can’t always see her signing or hear her babbling, so she’d developed a habit of just screaming until I came running. Now, J translates what she wants and yells it in my direction (usually in the kitchen). “MA-MA! M says she wants more blueberries, please!” I also find his translations sweet because he sees her pointing to her blueberries and signing more and he thinks to add the please part.

As with everything preemie-related, I catch myself watching them and traveling back in time. Two years ago, I couldn’t get much of a word out of J, and now he’s not only expressing his own needs in long sentences and paragraphs but he’s also expressing his sister’s needs. What happened to my tiny babies?

That long Preemie Babyhood that consumed the better part of four years is officially over.

Another Victory

I took the kids to the activity center last week to a free play session in the gymnasium. The entire room was lined with mats, encouraging kids to tumble and run and play wildly to their heart’s content. It was a joyous chaos.

Not long ago, I never would have considered such a place. My son is reserved and cautious; a year ago he would have taken one look at that wild room filled with loud, squealing, out-of-control children, and he would have walked back out the door. For so long, he was delayed in his speech and in his physical abilities. He was small for his age, and other kids pushed him around at playdates and in parks. Even if they meant him no harm, he was nervous around kids he didn’t know, especially wild ones playing in wild places.

It wasn’t long ago that M didn’t move enough to play in a gymnasium. Now, she’s crawling AND walking; she’s toddling and falling and exploring her world in ways she couldn’t just a few months ago.

I’m always struck by the sensation that people outside of our world who don’t know us have no idea of these sorts of victories. J was jumping off of mats and hanging off of bars. M crawled for a solid hour straight, only stopping to smile at other children bumping into her, before racing off to new discoveries. Nothing about these children suggests all the therapy it has taken to get us here. All of the interventions and teachers and advice and doctors. All of it.

As I watched J play with a friend, I remembered how distraught I was in his first months home. He was so small and so fragile. He was terribly unhappy. Compared to a baby boy born just five days earlier and dressed in the same red Christmas outfit, they looked months apart–which felt like oceans apart to me. And now, they’re jumping and laughing as equals, as friends.

This is what we’ve worked so hard to accomplish. Two kids happily rolling and walking and sliding and jumping.

Early intervention should never be underestimated, because maybe these kids would have gotten here. And maybe not. But, it’s not a maybe worth chancing.

This small victory has been worth it. It has been worth all of it.

Donating Breastmilk: A New Solution

I was blessed with a great milk supply when the babies were hospitalized. With J, I filled a deep freezer (which we actually bought for that purpose), and he had a mix of breast milk and formula for his first year. M was a totally different story. Because she had a milk protein allergy and some other complications, I was unable to give her breast milk for large portions of her first year. I was distraught–and could not fathom the idea of throwing away thousands of ounces of my milk. I wrote an entire post about how I donated my milk, which ended up being a really beautiful gift for me. Apparently, some hospitals are now getting involved in the process. I think it is wonderful for everyone involved! Click here to read the article.

12 Tips For Getting Synagis Injections Approved

My most recent article on Preemie Babies 101 posted yesterday. Here’s an excerpt:



Getting Synagis injections approved by insurance companies can be cumbersome, but for me the threat of my babies catching RSV was always worse. So, I stumbled my way through several Synagis approval scenarios. Hopefully, these tips can make your Synagis quest a little easier.

But first, it’s important to understand that there are general guidelines that exist to determine who gets Synagis injections. In the past, babies with a history of prematurity, lung or heart conditions, or extensive hospitalizations who were less than 6 months of age at the beginning of RSV season have been covered. Preemies born at 28 weeks or earlier who were less than one year old often qualified. Preemies or other babies with significant health concerns who were in high-risk situations, such as full-time daycare, exposure to other young children, or being a multiple, sometimes received Synagis injections up to age 2. At the time of this writing, changes to the guidelines are being discussed, so follow up with your pediatrician about whether your child qualifies.

  • Your pediatrician should be supportive of your quest to get Synagis. At a minimum, he or she should be willing to discuss Synagis as an option and why your child may or may not qualify. You are fighting an uphill battle if you have to fight your pediatrician in addition to the insurance company. If your doctor is unfamiliar with Synagis, that person might not be the best fit for a preemie who needs many special considerations in the first years.

Please click here to read more.

There’s No Such Thing As Perfection

I was pushing M in the swing at the park yesterday. In the swing next to us was a chubby, blonde toddler who was at M’s adjusted age, 16 months. My daughter is talking more. She’s slimmer. She looks like a girl, not a baby, in a tiny body. Yet, she doesn’t really walk. People are always curious about her age, because she doesn’t look like she’s 19 months old. And she doesn’t look like her 12-month body either.

I chatted with the other mama about all sorts of things, and we were talking about communication, which with toddlers can be so frustrating. I told her that J barely talked at 2 but that my niece knew 60 signs before she could talk well. I said it, while shaking my head, as evidence of how different children are, but I think she took it as so many new moms do, as evidence of her failings as a mother. She looked down and said, “That’s amazing. I wish I could do that. I’m trying to work from home and care for my daughter, so I just don’t have time for things like that.” I didn’t at all mean to point out her weaknesses or discover her insecurities as a mother! I had just admitted that my son barely said a word at age 2! So, I quickly said, “Oh, well my niece just took to it. She loved the Signing Time DVDs and learned so many signs from them.” I wanted to add that she was doing just fine as a mother. She was pushing a lovely, healthy, and obviously happy baby in a swing at the park, so she should be kinder to herself. I wanted to tell her that one of my insecurities is that I wish I could incorporate more projects and fun activities into our daily lives, but that the kids are so young and so active right now (especially my little troublemaker, M) that I’m exhausted just caring for them. At the end of the day, the house is filthy, the kids are filthy, and I’m splayed on the couch, totally done-in, and I have nothing to show for it. But, when did the bar for us become so high? As mothers, we’re not good enough if we stay at home or if we work or if we play constantly with our kids or if we let them entertain themselves or if we have structure or if we provide creativity. We’re always critiquing ourselves.

You know what? I dearly love my mother, and she wasn’t perfect. But, I wanted her when I was sick or sad or scared. I called her name at night, and I knew she would come running. I loved how smooth her cheeks were, how young her baby face (even in her 40s) was. She was feisty and hot-headed and sometimes strict with me. She wasn’t always on the floor playing with me, because she was cooking or cleaning or caring for my baby sister. But, she was always in my corner, she was always my advocate, and I always had the sense that she was nearby, just a call of “Mama?” away. Sometimes, as mothers we’re so worried about the job we’re doing that we forget that our kids don’t expect perfection. They expect love and for us to just try our best.

As preemie mothers, we feel even more guilt, because of all the things we feel we put our kids through in those early days and weeks and months. So, I’m sensitive to the other mama on the playground, pushing her daughter and thinking, “Another thing I’m not doing. Signing with my baby.” But you know what? None of us is perfect. We’re all just trying to do our best.

The Phoenix

© fotographic1980/

© fotographic1980/

When J was born, I lost the girl I was.

The weight of the world was on our shoulders.

It’s sad to think about the very moment you lost energy, freedom, and naiveté to be replaced by responsibility and fear and exhaustion. That pivotal moment marked my entry into true adulthood, where every battle was about the life of someone else that represented the ultimate responsibility.

M brought me healing in so many ways. I let go of some of my grief and anger, because there was no room for it any more. In her dramatic fashion, she showed me that all my questions about J’s delivery were pointless. I couldn’t have gone to the hospital earlier or asked more questions or rested more or walked less and carried him full term. The current of a preterm delivery was going to carry J and me to that operating room, and no amount of questioning after the fact would change that fact. Besides, with M I could have died. And she could have died. So, as if I didn’t learn the lesson well enough the first time, life itself became so beautiful.

One of my favorite bloggers Beth Woolsey just wrote a piece about the process of rising from the ashes, and it dawned on me that the phoenix is the perfect way to describe the way I feel about being a Preemie Mama. I will never be the same. Life will never look the same. But, I was remade better than I was before. More fierce. More determined. More grateful. More flexible. More sympathetic. More patient. More purposeful. More flexible. And most of all, more resilient.

My favorite part of what Beth said is that it’s our job as the survivors, as the remade people, to reach our hands back into the fire for those coming behind us. And I can’t think of a better explanation of what this blog is for me.

If you’d like to read her entire post, here it is at


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