So, I recovered enough, I guess, from my last relationship to try to "put myself out there" again, only I go to work, and go home, and "putting myself out there" here means "putting a clever, well written, articulate dating profile featuring flattering but current pictures on assorted dating websites." I soon found that my potential mates were all dudes who like to fish. A LOT. Dudes who were "sick of the games" and wanting to "settle down with the right one finally." Dudes who didn't offer anything about themselves in their profiles, but instead said "wanna no? [sic] just ask." The vast majority of those who were age appropriate had kids who were their "entire world. If you can't understand that, it's not going to happen." (I know that I'm being very sexist when I say that the women involved in this sick game do understand it, in ways that most of the non-custodial parents never, ever will.) I'd get messages from dudes who made boob jokes about "the twins" (OMG ARE YOU KIDDING ME, THOSE ARE MY CHILDREN YOU CREEPAZOID.) Once in a while I'd get a message from someone nice enough, and I'd respond, and we'd talk about our likes and dislikes, and typically within hours of exchanging numbers I would receive wildly inappropriate messages, including unsolicited nude photos, but usually questions about my preferences for particular sex acts and requests to see pictures of my breasts. (Except they of course, never, ever called them breasts.) One in, say, 50 dudes, wasn't gross and could spell (sort of) and had pictures of themselves doing things that didn't involve reeling in fish or taking down game, and we'd chat and we'd set a date and I'd painstakingly arrange for child care and then....I'd stop hearing from him the day before the date, or we'd go out and he was nice but there was no chemistry and maybe that's because we were both nervous but I've literally never, ever experienced real chemistry on an internet date and I've been on like a million. I'd find myself feeling guilty for not giving these men more of a chance, but for an average date I'm spending $50 on a sitter just to get out the door...and I find myself wanting to either hang with my monkeys or with my Lady Tribe instead. It's frustrating, and I've given up. Again. Although I have developed amazing friendships with women online, friendships that have moved from the computer screen to "IRL," I don't have faith that it can happen romantically, even if our "match percentage" is 80% or better. If I can't meet someone organically, I don't know that I want to. What I do want: I want a grown-up with whom I can share the adorable things my monkeys do. I want a big hairy man hug once in a while. I want someone who will take me out to dinner, with or without my children. I want someone who understands that my monkeys and I are a huge responsibility. What I do not want: I do not want someone who complains about "all the money" they're sending to the other parent of their children. I do not want someone who tells me I'm not tough enough on my children. I do not want someone who wants to date casually. I do not want to be raped or murdered. The biggest, an dmost alarming issue that I've become amazingly aware of in all of this is that this is scary. This is not just emotionally scary, in that I and my monkeys could end up hurt emotionally like last time. This is not just scary because rejection stings. This is legitimately really and truly scary. I felt crazy when I Googled the first one I'd set a date with, then learned that he had theft and domestic violence convictions. Then I felt vindicated, not crazy. So now I Google them all. I must make sure at least one friend knows the name of the person I'm meeting, and where we're going, "in case I die." Do men do this? I don't know. Even if it's not a real threat, and it's all in my head, I've been taught my whole life to be afraid, that I'll probably be raped or murdered. AND IT IS SO SCARY AND IT FEELS SO REAL. At least 3 men in this last go-round asked me if my pictures were current, and I said that they were, and at least one said "because one time this girl showed up at least 50 pounds heavier than the pictures she'd posted." And I understand that there has to be a physical attraction, but what began to really, really stand out to me is that these dudes were afraid I would be fat. And I was afraid I'd be murdered. And my children wouldn't have a mother. And my parents would be down one daughter. And my Facebook wall would go from one filled with musings on parenting and silly songs to a tribute. And my friends would have to deal with the senseless and tragic loss of my murder. And they were afraid I would be fat.

longer

The longer he's gone, the more littered the passenger seat of my car becomes. Water bottles, Target bags, receipts. If I ever get the opportunity to leave the house sans children (less often, now, with having to pay for the sitter AND dinner) I end up somewhere we'd been together. If I go somewhere with the kids, they'll remind me, and quickly, of "that time when ... came here with us"...before we saw Rudolph, when we had the tater tots. They'll ask "can we go to the spaghetti restaurant?" ...said he liked the pink flamingos the best, too. They miss his dog. They miss his house. They miss him. And their missing him keeps me where I am, within my grief. The tears spring to my eyes, and luckily, it's summer, and I can pull my sunglasses down over my eyes. Every time I cross the river, twice a day, I remember riding in the front of the kayak down that river, the sun on my skin, the cheap beer cold on my lips, him, just out of reach. I switch on the ceiling fan in my bedroom, the one I was afraid to install, the one he put up for me, joking that the connection needed to point north. I found a staple on the wood floor in the boy's room...my instinct was to text him. His facebook page is too painful for me to view; all that's visible to me now is the times we spent together. I look at his IG every couple of days. His life seems to be moving on as though I was never a part of it. And really, I never was. He always meant more to me than I did to him. He was out of my league from the start. Why would I be worthy of a grownup, a real grownup? One with a job, and a house, and a car, one who offers to drive, insists on paying? He was always a gentleman. Up until the night he broke me. In June, I fell in love. In May, my heart was broken. And now, now on these warm summer days, I battle to stay strong for my children. They deserve the fun, happy, active mom they're used to. I keep hoping he'll change his mind. He won't. I go through the motions. I wash the dishes, I fold the laundry. And I quake with fear that *it* will never happen for me. That I will either be the cliche, dragging man after man through my kids' lives, or that I will end up alone. My recovery times between breakups are growing longer and longer. It isn't fair to them. It isn't fair to me. It's not fair. None of it is fair. The loneliness of single parenthood is one I never dreamed of. I am not cut out to be stoic. The small taste I had of love, the life I desire, seems so far out of reach. I'm simultaneously in need of a fast forward button to get through the grief, and a pause button to keep the days long, and my children small and resilient. And I know it will get better. I know I will get better.

Dear Son

Dear son, You have recently been diagnosed with a mitral valve cleft that will need to be corrected surgically within a few years. I know that your heart is whole, and I know that you will be okay. Every once in a while, though, I feel the old terror take hold. That perhaps something will go wrong, that you will be harmed by the very hands that are there to help. That you will be handed back to me different than you'd left, or worse. But your sister and I need you, and I have to know that you will be okay, that you will be better than before. My darling boy, we have also learned that the reason you have such a hard time communicating with us is that you have a mild form of verbal apraxia. Your brain has a hard time telling your mouth which shapes to make to make the sounds you need to speak. The same disorganization could be the reason you have a hard time opening doors, working puzzles , and pedaling your tricycle. Helping you through this will be hard, and the road will be long. You, however, have made a habit of proving everyone wrong. One of your few multi-word phrases is, "oops, try again." And try again you do. You never give up, and you always find a way to make yourself understood. And your sister and I knowthhat this won't stop you either. We love you. Mama and Monkey B

lucky

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.    

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. :)

almost...

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:

www.adventuresofthefamilypants.com

www.lovethatmax.com

http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html

http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.shutupabout.com%2F&h=-AQE7ok3VAQHyyaafxX_gj1133pbxoagCU4zm_Sk73GTNsQ

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.

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.

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."

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.

leaps and bounds...almost.

Those monkeys of mine...they're taking off, I think.

The girl baby is pulling up like crazy, and cruising along furniture, as long as the furniture is soft. She's saying "Mama," I think for real now, and she laughs like a crazy person whenever I say "no" or "ouch."  She has little curls behind her ears...and wisps in front. It feels weird to look at yourself and say, "wow. She is gorgeous."

The boy baby. Holy cow. Babbling in full effect. He can now get himself from belly to sitting without help....he does however require motivation. He's gotten himself to kneeling. He can (brace yourself) stand if you set him up  holding onto something!!  He even pulled up on my mom's legs today in an effort to dethrone the girl baby from that place of power. His physical therapist is beyond impressed, and pointed out how good his "pincer grasp" is and how well he points....I knew he could point, I just thought it was only at his brain.

One of the research projects on corpus callosum disorders is interested in us!  Interested in that I filled out a questionnaire and they've requested a copy of his MRI. I'll be picking that disk up tomorrow...and while I won't have a clue what I'm looking at, I'll scour it before I send it on, make a few copies, and *then* forward it. The study is in San Francisco...it's a shame they won't fly us out there...say...in March. It would be a nice break from our Ohio winter.

I had a painfully long and apparently pointless conversation with Baby A's case manager...a person assigned to "help" us "manage his care," a service billed as one that will help me feel less scattered as we flit from one doctor to the next PT/OT visit...but somehow....didn't. I called to see if we needed a referral for a second (third) neurology opinion, and after-not kidding-35 minutes-determined that we didn't need the referral but she said to "give the first neurologist another shot."  I may be overly cynical, but it suddenly seems like our case manager's job is to save the insurance company money.  So, we've got our appointment set with the other pediatric neurologist. I found one that specializes in corpus callosum disorders, so at least I think I've found the right guy.

I've read some more about the different types of disorders, and the more I read, the more wrong the first neurologist's opinion seems. From what I can gather, my boy's got about a 30% chance of being "normal." So I get to sit on this and freak myself out more until our appointment with the third neurologist in January. Yes, January. We do see both the first neurologist and the neurosurgeon during that time frame...

It's the waiting that's killing me. I get so many "treasure this time...you'll be tearing your hair out before you know it"s that I could scream. I get so angry....there's something wrong with my kid's brain, and only time will tell us just how "wrong" that something is. My gut tells me that he's okay. And even if he's not okay, he'll be okay. We'll be okay.

la La la

The boy monkey is "developmentally delayed...." this is old news. He's not crawling, he's not talking, and he's not been babbling as long as "they" would like. Yesterday, that boy baby of mine got himself from his tummy to sitting. My sister and mother cheered him emphatically, congratulating him on such a stellar achievement. He looked back at them and blinked as if to say, "what's the big deal?"

These babies...they get so many "I love yous" in the course of a day....They are so wildly loved, and they love to hear about it. They always respond to an "I love you," with a quick snuggle, a pause in a tantrum, or just an endearing gaze. Tonight, in response to my "I love you," that boy monkey of mine said back to me "la La la" in a rhythm identical to mine. He loves me back, and wants me to know. -swoon-

Baby B and Me....

A challenge of parenting twins, especially when one's needed much more attention than the other, is a worry that one isn't logging as much mama time as the other. All the nights I've spent in the hospital with the boy baby, all the evenings at physical therapy, the extra time working on muscle strength and reflexes on the floor...the nights I slept with him on my chest when he was first sick...all that time he's in my arms, the girl baby isn't. From the very, very beginning she's been more independent....the day they were born she didn't even need to stop and say hello before being whisked away.  Now that she's crawling, she's growing less and less needy. But I worry that I've bonded more with the boy baby, and that the girl baby and I won't have the kind of strength in our relationship that the boy baby and I have. Tonight, though, she was extra tired, and was offering up a rare snuggle. I took full advantage. We spent time looking into each other's eyes....and I saw my own. No one has ever resembled her mother more than this child resembles hers. We don't need the extra time, the wiggle worm and I, because we already understand each other. It started out that way.

can you trip over a milestone?

(author's note: I knew I would be bad at updating regularly...it's why I've never finished that novel I've been working on...)

The girl baby has been pulling up for about a month here or there, but Saturday it was for real and stuff got real real in a hurry. The little woman has no fear. She pulls up, plops down, stands there showing me a jazz hand and takes off, crawling fastfastfast with her tongue out looking for dog hair or electric things to chew on.  It's wonderful...though she's still behind her actual age of 13 months, she's right on target for 11 months, her adjusted age. (Preemie mom talk....adjusted age=time since due date-time till due date. or something like that. They were due November 18, 2010, and we're about a month out from a year from then. Got it?)

The boy baby-this is huge-started babbling in earnest today. He's been "vocalizing" for a while, though without any discernible consonants or syllables. But there he was lalalalaing and babababaing away...he had to tell me about his day...and what a day it was, apparently. This is big for him because I've learned in my research about corpus callosum  disorders can frequently be autistic....the fact that he's babbling using syllables, assuming he does it tomorrow and the next day....is a good indicator that may be one issue we can start to worry less about.  Mobility wise, although he's still not crawling, or even getting himself to sitting from laying, I think he's close on both fronts. Our physical therapist does too. He's getting stronger daily it seems. It's almost like he's lacking motivation...why crawl when rolling is so efficient?

The way the corpus callosum works is that it is a messaging center between the right and left halves of the brain....it's how most people develop good emotional and intellectual intelligence. I hope to learn more about this...he's not eligible for any studies currently being conducted, but I check all the time and am on the mailing list for the NODCC (National Organization for Disorder of the Corpus Callosum.) I keep thinking...maybe she's wrong? Maybe my corpus callosum is thin, too? Maybe their father's is? The rest of us haven't MRIs to look...and I'm curious to know. That's a task for another day.      

The boy's physical therapist told us yesterday that our insurance will only cover twelve more visits through the end of the year. He goes twice a week, so this is obviously only going to get us through another month or so. She suggested talking to BCMH, the Bureau for Children with Medical Handicaps. It works like a supplemental insurance, and if he's qualified and stays qualified, he'll be eligible to stay on it til he's 21. It's through the county, and remarkably I got a call back within an hour! A nurse will be out in a couple of weeks to assess him and determine his eligibility. He'll also be talking to the neurologist who gave him the iffy diagnosis. I cried on the phone with her...I don't want my kid to have a "handicap" and qualify for special programs. I want him to smart and healthy and strong. I want him to be helping his sister destroy the house.

But then I see him and all is well again. He hugs, and squeals with laughter, and is as perfect to me as any child has ever been.