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'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.