Thursday, November 24, 2011

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 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.

Tuesday, November 15, 2011

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:

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.)

Saturday, November 12, 2011


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.
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.

Monday, November 7, 2011

One Year, again

Today, my sweet girl had her one year anniversary of being home. Before we'd left the hospital Saturday afternoon, one of our favorite doctors asked us if we'd like to bust her out the next day. Parenting in the NICU is trumped only by parenting one child at home and one in the NICU, and I was lucky enough to only have to have one day of that horrible task. I made sure both going home outfits were clean and packed. The sweaters and hats my mother had made were ready to go. We arrived Sunday morning, and it seemed like I spent most of the day tracking down nurses and other mothers to say goodbye, that we were finally, finally leaving...exchanging emails and phone numbers and facebook profiles. Paperwork. Dressing them. I buckled them into their car seats. Then finally, finally, walking down the hall with them, one over each arm, one of our favorite nurses escorting us. We were free. We got home, and I lay them both down together in Baby A's bed while I attempted to unpack the previous two months of our lives. It was her turn to get snuggled up.
I lay them both down to sleep in the basinnettes in my room. I got us all up for their 3am feeding and my pumping session. I fed them one by one and thought "okay, we're good." I started pumping, and they started screaming and I again resolved to get them to breast.
They were asleep by the time I was done. I pent that night with a hand on each chest. I stared at their faces and wondered at what I'd gotten myself into.

Saturday, November 5, 2011

One Year

One year ago today, my sweet little boy came home with me. I snuggled him up on the couch, laid down with him and took him to my breast. I bathed him, dressed him in pajamas, and held him close. I spent that night with my hand on his chest, hoping and praying that he would just keep breathing. I may have slept in fifteen minute intervals, but I don't think so. I set my alarm to wake up to feed him his allotted 1.75 ounces of expressed milk....Despite our 9 weeks in the NICU and the myriad of setbacks we'd had, I was still determined that I would get both of these babies to breast, come hell or high water. We'd been through enough, and I would now be the mama I'd always dreamed I'd be....tandem nursing, wearing both at once. I "woke"' the next morning, showered, readied my boy, and the two of us went back to the hospital to visit with my dear girl. Getting out of the house was outrageously difficult....I left a solid 2 hours than I'd planned to. "So what, mama," I told myself, "this takes practice."

Friday, November 4, 2011

Babies and Bubbles

Early Intervention continues for both Monkeys....Speech therapy was out last week and introduced BUBBLES into our lives. Both love them, but Monkey A loses his flipping mind whenever the bottle is produced. He reaches out, he tries to catch them, he blinks when they land in his eyes....He squeals, he claps....they are obvs his new favorite thing.  We have them on all floors of the house so in case of a bubble emergency we are well equipped. The report I received yesterday when I called to check from work...Monkey A army crawled across the floor to get closer to the bubbles, clapped his hands, and said "bobo." (lamenting again at not seeing this myself, but that's a post for another day.)

Monkey B has been fondly christened THE DESTRUCTOR. Anything and everything that is in her path will be destroyed. And eaten. Or kicked, pinched, or smooshed. Internal parenting battle: I keep catching myself telling her she's bad. I'm saying it in an affectionate tone, but I'm certain this isn't something she should be hearing daily. Mischievous? Curious? In need of redirection?

Monkey A is quickly running out of physical therapy visits. We met with BCMH but don't expect to be approved until sometime early next year. While that's great for next year, it's not very useful for this year.  I found out about a Family Support fund available through the county developmental disabilities office, but haven't heard back about that either. The rehab facility is appealing to try and get us more visits. The insurance company has offered us home health to come do it, but I'd rather keep doing what we're doing if we can...he's thriving and doing so well with it, I'd rather not rock that boat. My theory as to why they would offer home health instead of therapy visits is that each policy year, we're afforded a PT/OT bucket and a home health bucket. Having exhausted our PT/OT bucket, they're trying to offer the home health bucket to avoid paperwork or appeals. Or something. I don't care why, really. I just want my boy to get the help he needs. I'll keep plugging away.

Tomorrow, he'll have been home a year. A year. Today they turned 14 months. Incredible. Expect a lengthier reflection on that tomorrow.