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.

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.

neurologist schmerologist

Many have been asking about how our NICU follow up went on Monday.
Our appointments were at noon and one, their nap usually happens at 11-1. At 12:45, we were called back for their Bayley Assessments...needless to say, the monkeys were not performing up to snuff.
Monkey A has been crawling for exactly a week at this point and is still a little wobbly. Monkey B is shy and tired and not interested in "talking" to the occupational therapist administering the test. The assessment is standardized so the assessors are not permitted to take the assessees' mother's word for what they can do. So, if they don't see it, it didn't happen. Lame.
Then we wait another half hour to see the doctor, who sticks by her original diagnosis, despite my questions. I do hate her less than the last time...I guess last time I felt like she dropped this giant CEREBRAL PALSY bomb on me and then left the room. This may not have been the case. She explained (I think) that she's referring the corpus callossum and other "white matter" as the same thing and that Monkey's A's thinner white matter can be indicative of cp. Which does not match what I've read, and I've read A LOT. Regardless of whether she's right or not, the treatment at this stage of the game is identical, so we work and wait until January when we see the other specialist.
Monkey A is.....a totally different baby than the one who started physical therapy in June. In June, he could barely roll over, and now he's crawling and almost pulling up. He's babbling like mad, and his fine motor skills are amazing...what bothered me most I think about this visit was that the doctor's lack of acknowledgement of how far he's come. Of COURSE I'd prefer mild CP over the potential cognitive and social difficulties a corpus callossum disorder would indicate, but it's not up to me and the boy is going to be who he's going to be. And the doctors' lack of future telling skills is driving me positively batty.I want answers, and since I can't have them, all I can do is all I can do.

A fellow preemie mom coined the phrase "chokeabitch threshold" to explain how we feel at these visits. We want to take these doctors, nurses, therapists, dieticians, receptionists, we want to take them, and shake them and scream, "MY CHILDREN ARE AMAZING INCREDIBLE MIRACLES!!! WHY CAN'T YOU SEE THAT?!?!?!"

And that is what I leave you with tonight. My children are amazing, incredible miracles.

On the move...

Deserving of its own post, I simply want to say...Baby A crawled on Monday. Then he did it again. And he's been doing it ever since like he's always known how. And I wept and I cried and I hugged. And that beautiful baby of mine....is crawling.

This important milestone has been met before the looming neurologist's visit on this coming Monday. I dread this....this is the doctor who told us that Baby A could have CP, a diagnosis I know reject completely. I'm not sure how to approach this with her, as she is the one who is to make his recommendation for BCMH.  I will need to make it clear to her that I have done a good deal of research and would like her to at least consider my alternative diagnosis.

I had wanted Monkey A to be crawling, and Monkey B to be walking by this visit, if only because this doctor tends to be a bit harsh in her delivery of news (in case you didn't pick up on that...) and I wanted to have these two things in my pocket so I could say to her, "well, sure. They're delayed, but look what they can do." And Monkey A has done it, and Monkey B is ready. Wouldn't it be awesome if she did it there?

Giving Thanks

Today, we spent the day feasting with our large, loud family. The monkeys ate it all up...turkey, stuffing, sweet potatoes, corn, cheerios....the usual Thanksgiving food. What we're really thankful for is the family we've been blessed with. I don't say "blessed," it's not generally part of my vocabulary. But we three have been truly blessed. My mother was raised Catholic and broke from the flock in college, yet her family has kept us close. We disagree on a lot....a lot of politics, a lot of religion. But it truly doesn't matter. We're so fortunate to have a family that easily looks past the very big things we disagree on, and once a year greets our branch of the family tree with arms open wide. We eat, we laugh. What's so beautiful to me this year in particular (we skipped last year...we were less than a month home from NICU) is that despite the conservative-ness of my mother's family, my children and me are still welcomed as though everything were "normal," and that I wasn't going this "alone." (The "alone" is "alone" instead of alone because I'm not actually alone, I'm just without a partner.) They don't care. They love love love love us. And for that I am truly grateful.

November is Prematurity Awareness Month

Everyone knows someone who knows someone who's had a tiny baby too early.
Maybe I'm too sensitive. Maybe the thick skin I've developed to deal with doctors who speak in gloomish doomish needs to spread to cover those with a total lack of understanding about what it's like to have a premature baby. Or two.
Examples of things that drive me up a wall:
"They're not walking yet?"
"Just wait until they're walking. You'll want to tear your hair out."
"What a healthy little boy you have! He must be your eater."

What has really been getting to me lately is the comments about how easy it must have been to only be pregnant for seven months, and general complainings about the end of normal pregnancies. Believe me, I understand that being pregnant is miserable for a lot of people, including me, but it's so, so much better than the alternative.
"Oh, honey. You don't even know what the third trimester is like. This is brutal."
"S/he can come out now. I'm done. I'm sure s/he's done cooking by now."
"36/37/38 weeks is fine. I'll see if my doctor can induce me. If s/he won't, bring me the castor oil."

The alternative? Having an underweight baby, one who often can't latch, one who frequently develops asthma.   Worse? Watching your baby(s) hooked up to machines and being denied the ability to hold them, to nurse them, to dress them, commuting to see them, hooking your breasts up to a machine to extract that precious nectar instead of nuzzling their sweet noses to your chest.

Despite what lots of doctors allow, the March of Dimes wants all women to get to at least 39 weeks. Before then, babies' brains and lungs aren't fully developed. If you're reading this and getting mad at me for being preachy, please read this article:
http://www.marchofdimes.com/pregnancy/getready_atleast39weeks.html

Because my babies were born too soon, I couldn't:
-hold them until they were a day old. I was so lucky in this! Many NICU parents must wait a month or more.
-take them home until they were 9 weeks old.  Again, I was very lucky in this! One friend stayed for nearly 100 days.
-breast feed. I'd always pictured myself as an extended breast feeder. When my milk first came in, there was enough for a small village. However, because I was hooked to a piece of machinery instead of to two tiny, sweet mouths, my supply quickly plummeted to one suitable for almost one baby. I pumped for 9 months, and still feel guilty for stopping. I think I mourn this the most. Where I'd pictured as precious moments with my children, I instead mindlessly watched episodes of Jersey Shore, waiting for my 25 minutes to pass.

My skin needs to get thicker, sure. But for this month, let me mourn the trimester I'll likely never have.

November is Prematurity Awareness Month. On November 17, please wear purple. Better still, make a donation to the March of Dimes or to your local NICU. Even better? Keep your baby in place til it's time to come out.

(Incidentally, Microsoft squiggly lines "prematurity," but not "squiggly." There's clearly more awareness work to be done.)

WINNING

Dear Monkey A,
We are writing to let you know the following services have been approved by Blank Blank Health Insurance Company:
18 Physical Therapy Visits.
Your health is important to us. Thank you.
Sincerely,
Blank Blank Health Insurance Company

We have a "case manager" who is supposed to help coordinate Baby B's care. Unfortunately, she didn't seem to understand the terms "medical management team" or "essential services per PPACA," so I went it alone and had our physical therapy department file appeals for us until we won.
In the mean time, I'd found a non-profit organization that helps get care for people age 3 and up with developmental disabilities. I shot them an email with the hopes they'd know something. They did. It turns out there's an additional $1200 available through the county for services left uncovered by other means. Of course it turns out we don't need it this year, but that is definitely information I'll be holding onto for next year. A bonus? I passed the information along to a friend whose son needs speech therapy and lacks the insurance to pay for it.

So. We won this round. Go us.