Tuesday, September 25, 2012


On cool, crisp Saturday morning, I layered up the monkeys and we headed for the zoo for a charity walk benefiting the NICU where the monkeys spent their first 9 weeks. Two of my closest friends and their bubbas rounded out our team. As it turns out, herding 5 children, ages 6, 4, 3, 2, and 2 is no easy task so we unfortunately all got separated very quickly. I didn't see glimpses of those, my other favorite children until an hour later or so, playing on a hillside, past the throngs of NICU graduates and their families. While the monkeys are just getting excited about seeing animals, they were far more interested in the freedom to wander freely and use the "big kid slide."  I thought of their first days...intubated, hooked to wires, on IVs.... as I watched their red little noses crinkle with laughter and was grateful.

The walk was short, as the ceremony in the center gardens was long. The couple who created the walk 6 years ago spoke, and while their daughter had only spent a few days there, they acknowledge the "club" to which NICU families belong. They referred to it as an "elite club," one to which no one wishes to belong. It truly is one that cannot be understood until it's been lived through. One develops a new vocabulary and realizes a new reality; words like "tachy" and "episode" work their way into your everyday vernacular, you find yourself using CCs to describe how much breast milk you've pumped, commenting on the large size of the 4 pound baby in the next isolette, and celebrating when your child is big enough to fit into preemie sized onesies.

My monkeys and I sported t-shirts with their birth weights and age (29 weeks) so others could see just how far they've come. They're both 10 times their birth weights now, and on their feet. Other family teams had shirts with the ages and weights of their angel babies, the term used to refer to those babies who didn't get to go home with their families. One family team had triplets, and had shirts honoring the birth dates and weights of all 3 babies, and only 2 survived. The surviving two were 5 years old, and I hugged my littles close, so grateful for what I have. I thought of the 15 year old mother I met while there, whose tiny baby lived to be 6 months old, who had to make a choice to turn off the machines, a choice no mother should have to make, especially one who is still a child herself. I thought of my friends across from us, whose two little girls had to say goodbye to their sweet brother before they were even born. I thought of my friends I had pre-NICU, who experienced a traumatic birth which tried to kill both mother and son, and stood in awe of how their family faces the challenges they now face with a child with special needs. I hugged my babies even tighter. I looked around and saw the children on crutches, and in wheelchairs, and with other lasting effects of either their prematurity, their traumatic births, or the birth defects that landed them in the NICU and wept, and the words "there but for the grace of God go I" played on repeat in my head as I looked around at the tear filled eyes of the adults around me, and into the giggling faces of the oblivious children tearing up the beautifully maintained gardens.

Now that the overwhelming relief of having had my babies survive has subsided, I'm now faced with a new set of unanticipated anxieties. I watch my daughter struggle to stay focused, and worry that she's exhibiting symptoms of ADD. I try to comfort as she cries and cries when she gets over tired or over stimulated and worry about sensory integration issues. I note my son's lack of spoken words, and watch him flap his arms when excited, and worry about autism. I watch his ankles turn inward and worry that that diagnosis of cerebral palsy may have some weight after all.

There are fates so much worse than that which my family has faced. I worry that I am wishing away their childhood as I wait for the next milestone that will reassure me that they will be okay.
In that cool sunshine, I squeezed my children until they wriggled free. I am so, so lucky.    

Tuesday, April 17, 2012

the last of the juice...

I pumped. I pumped and pumped. I pumped for 9 months, stopping last May. I spent a lot of time in front of the laptop watching Hulu, hooked up to the milker, almost hearing my babies being cared for in another room. (Read Tina Fey's BossyPants if you want to learn more about how strange this feels.) My supply had plummeted when I went back to work in February, and I had to get up at 5am so I could pump before leaving for work, I pumped 3 times at work, and immediately upon returning home. I pumped twice after the babies went to sleep. I pumped in my car in Walgreens parking lots. I pumped behind curtains in Monkey A's hospital rooms. I grew used to the inside of my bra being slightly damp most of the time. I watched all of ALF, from beginning to end. In April, I decided I'd had enough. I began to wean, and pumped my last pump the day the babies were dedicated at church. I'd stocked some away in the freezer in case Monkey A needed additional surgery (breast milk counts as clear fluid...starving a baby is no joke.) I just cancelled the bronchoscopy Monkey A had scheduled for next week; I decided he's been breathing fine and there wasn't a need to risk having him put under anesthesia. So I pulled the last 18 ounces of frozen milk from the freezer, and the babies sipped it with their other milk over the last couple of days. Tonight, Baby B chugged hers down and looked for more. Baby A drank less than half, burped some up, and refused the rest. And that was that. The end of my labors. I'm generally relieved that I didn't forget about it and let it "expire," but I'm also...sad? guilty? These are mixed feelings. I meant to be an extended breast feeder. Being a dairy cow was never in my mind. I didn't even buy any bottles that didn't come with my pump because I was so certain that they would just...get it. And we never did. And while I logically know that I did well, that I did more than many would have done, I'll never stop wondering if I maybe didn't try enough.

p.s. if you're looking for my previous post, entitled "the other parent," I removed it out of respect for the babies' father's privacy. He did not ask me to take it down, I did it myself as I failed to ask his permission before posting it. The short of it is...we'll be fine and we're doing our best. :)

Saturday, March 10, 2012


He took a few steps a couple days before I turned 35. Amazing. Then yesterday, he took lots. From me to my sister, with both of my parents sitting there. We all clapped and cried and cried and clapped and he is so, so proud.

We had our 18 month well visit...I think we're still "delayed," for speech especially. I'm not really worried, not yet. The pediatrician asked if they repeated words we said, and no, hadn't been. But that same night, they did. And this is why I'm not worried.

In other news, these are things I'm reading:





Sunday, January 29, 2012

What a strange thing to say...

I started a new job this week. Better money, a better fit for my personality I think. I haven't yet met anyone who's to be my work BFF, but that's okay.

Two strange things have happened though....

The first was this:  On Wednesday, my supervisor told me about a meeting for Saturday. I mentioned that I would have to arrange child care and he asked "can't your husband do it?" I don't have a ring on, so I don't know why he assumed I was married. It put me in a place where I had to say "we don't have one of those," and it made me feel all strange, like I had to defend my life decisions to an almost complete stranger. I was most bothered that it bothered me. I need to get past this myself if I'm to make sure my kids know we're normal, that our family is structured is the way it's supposed to be.

The second was this: A co-worker said, "your little boys are too cute!" I said, "one's a girl, but thanks" and smiled...it's a common enough mistake. Her name is fairly androgynous, and she's not getting her ears pierced and she won't leave bows in her hair. This doesn't bother me much. The co-worker asked how old they are, and I told her "17 months, but they came almost 3 months early, so they act more like 14 months." The co-worker said, "lucky you! you didn't have to carry them all that time." Without skipping a beat, I said, "What a strange thing to say...the babies stayed in the hospital for 9 weeks and one has some ongoing health problems. I'm very lucky that they're alive, but I would give anything to have carried them to term."  This woman is clearly not going to be that work BFF I wanted, and I'll be lucky if she says hello to me on Monday. But seriously! In what world is having 3 pound babies lucky?  I wish I could educate people without biting their heads off, but I cannot. I wish I could have one kind, informative sentence that would open people's eyes to what it's like to have a preemie (or two or more) and make them think twice the next time they encounter a preemie parent. We work in health care, so I hope this co-worker pauses a minute before she says such a thing to a patient.

These are the things that define me now. Being single. Being a parent of two preemies. Two years ago, my summary would have been much different....graduate student, rock n' roll, cowboy boots. Now it's single mama of two, breastfeeding advocate, NICU graduate family. How strange.

Tuesday, January 10, 2012

2 out of 3 neurologists agree...

so much as happened since I last wrote...I'm sorry. Two mobile babies are a lot of mobile babies.  I'll do my best to summarize.

Our Christmas was great. I put out a call for donations for gift bags for families in the NICU, and within days our dining room was full of items. A friend and my sister helped put them together, and we dropped them off. I talked to a mom with a 29 weeker who was 1.5 pounds, they'd been there 2 months and were looking at at least another 2, she had to break from our conversation to take a call from her landlord as she was facing eviction. Talking with her gave me pause to (once again) count my millions of blessings.

Firstly, most importantly, our second (third) opinion neurologist, one who specializes in disorders of the corpus collosum, was fantastic. He was kind, patient, and made sure to answer all of my questions. He also deemed my boy "clinically normal child at this time; normal development for corrected age.  No signs of hydrocephalus/increased ICP. May well turn out to be normal."  He went on to say that while he's macrocephalic, the fluid we saw at 6 chronological months may well be gone by now, and though his corpus collosum is "mildly thin" he thinks the MRI is old enough that it might look normal by now, and that my boy seems normal enough that it doesn't seem worth it to put him through another MRI.  What wonderful, amazing, fantastic, stupendous news!!
He can also crawl, pull to stand, get down carefully, and play catch. He still goes to physical therapy twice a week....he's getting much closer to within "wide range of normal." What an amazing kid.

My girl baby can stand up by herself, but as soon as she realizes she's doing it she grabs on or gets down. She babbles with such inflection, I'm positive she's trying to tell me something. I keep saying "she'll be walking within the week," but she's not quite there. She "reads" us books, following the lines with her finger and telling the story. She can push her brother around on their push toy.

I start a new job two weeks from yesterday. I am very, very thankful for this. It will be double the commute, and only a little more money, but it's with an organization I really believe in and there's a ton of room for mobility, something I didn't see/didn't want in my current position.

I hope to write something more creative, funny, introspective, etcetera sometime soon...stay tuned.