Saturday, February 18, 2012


Saturdays. Our favorite day of the week - play with Mom from sunrise to sundown, no rules, tomorrow's not Monday, pants optional.


Three unrelated people this week have asked me questions about Maia's health this week out of the blue. So I thought I would finally give a little encyclopedia background here....mostly though because reading other moms' expereinces with anything spina bifida has been so healing for me. I'll add mine to the blogosphere.

Maia was born with a lipomyelomenigocele, which is a rare (and relatively mild) form of spina bifida. Despite the "mild" part, having a pediatric neurosurgeon sit down, on the most stressful day of your life, after what feels like an eternally long surgery without smiling and then proceed to use the two words "spina bifida" feels like getting punched in the stomach. Really hard.

So that's the medical definition, which anyone can google. The mama definition is we went through some traumatic MRIs and even more traumatic surgeries way too early in our baby girl's life. She ended up having spinal cord fibers tangled up in the fatty tissue in her back. A surgery was able to correct that problem; everything is where it should be now. The mal-shaped form of the tips of her spinal cord fibers makes it really, really likely that they are going to get "stuck" to the inside of her vertebrae as she grows, which means they'll cut the vertebrae open (again) and release it so that she (hopefully) does not sustain neurological damage (which can be caused by the spinal cord getting stretched if it is stuck to something).

For now, she is at the very, very healthy end of the lipomyelomeningocele spectrum. No problems with her bladder, no problems with her movement. When I was telling a friend about the problem this week and recounting to her our experiences in a couple of different hospitals, I literally got sick to my stomach and felt like I was going to throw up. Even though I know she is really healthy now and there's a good chance she won't end up with any major problems in the long run. It's not a fun memory. It gives me huge amounts of empathy, love and respect for all the parents out there who go through way worse than our baby (and having spent some time at a huge children's hospital, it is very real to me that our problem was minor compared to a lot of the kids there).

She can't see her scar yet, but I do think she knows it is there. We've been doing a lot of reading about implicit memory and learning a lot about the way the body reacts to things that has happened to it, even when our minds can't explicity remember it. Every once in a while I get a glimpse of something small and almost imperceivable that causes me to believe somewhere inside her cells, she remembers the whole experience. There are little nuances of her personality that changed - she was different during her first 4 days in the hospital (pre-trauma) than she was after the first medical woes. She was different after the 6 month surgery than she was before. Big things change kids, that's for sure, even when we think they can't remember.

Sunday, February 12, 2012

Mama's new favorite game - their bedroom window overlooks a small courtyard in front of our home - they stand at the window, I run down and go outside and wave up at them.....I think I like it more than they do!

We can't believe it's almost time to start planning a 1st birthday party for these two! We haven't had a check-up since November and we have no idea how much they weigh or how tall they are, but it doesn't take a second glance to see they are HEALTHY so that's all that we're concerned about (finidng time to measure and weigh two babies hasn't made it to the top of our "to-do" list yet). We're pretty sure they are tall. They are eating a whole array of vegetables (probably everything you can name besides brocolli and cauliflower), bananas, apples, cereal, and scrambled eggs. We LOVE this stage - it's so nice to have them moving because they can get what they want and interact a lot more - and my favorite part of every day is seeing JD intentionally try to make Maia laugh. They make us laugh a lot too!

Stylin' Baby B

Too Cool Baby A

Both JD & Maia are crawling and starting to explore their world. We knew they'd discover the dog door fast, but we didn't know it would be THAT fast! Neither one has made it out the door yet but they are both very interested in peeking outside.

Remember how I said we love that their moving now? Well, it's the truth, but it makes "operation keep them alive" a lot harder. So we decided to just go all out with the mother of all baby gates. Living room side of the baby gate = baby proofed. Kitchen side of the baby gate = adult space.

Props to Costco from twins mom. Only store I've found so far where BOTH my kids fit in the shopping cart. I should have someone take a picture of the other way I grocery shop - one baby in the cart, the other in the Baby Bjorn (their facing each other so they actually entertain each other while I shop).