Quick Update

Aerin is almost walking. She takes at least one step each day and has taken as many as 3 steps at once. She also has drawn 3 lines with a crayon on her new easel. She still won't use a sippy cup unless she's parched and it's the only thing around (and even then she'll only take a sip or two). She will, however, drink from a regular cup. She tends to bite down on the rim, so we only use plastic cups.

Her palatte is getting more sophisticated by the day - she loves calamata olives and barley with pepper (and other ingredients, but the pepper is the only one that babies don't usually like). Her favorite food is salad with vinagrette dressing.

The reason the updates have slowed down is that we just bought a new house! We close in mid-May, so there's lots to do.

Aerin has Magic Powers - Part 1

This is so long, that I've decided to split it into 2 parts. I'm working on the second part.

Aerin might well be the most successful lobbyist ever.

We arrived downtown at 9:00 a.m. on Wednesday morning. It took us 30 minutes to park and get to the General Assembly Building (GAB). Parking in Richmond is always a hassle, especially when the Legislature is in session. We ended up parking in the Children's Hospital parking lot, so I got to see where Aerin will be having her surgery. It was cold and windy, but Aerin was nice and warm. She was wearing tights and socks and boots along with her long-sleeve shirt and sweater vest. I had her shiny sleeveless coat over all that and I piled blankets on her. I also got her mittens on, which is always a challenge (she usually pulls the first one off while you're struggling to get the second one on). I was still afraid that she'd be cold, so I put the visor of the stroller up and draped my coat over it so that she was completely cocooned and out of the wind. She was perfectly warm when I unwrapped her inside the building.

The GAB was packed. The March of Dimes wasn't the only organization lobbying that day - there were many others. Here's a quick rundown of how lobbying in Virginia works: The legislature is in session for 30 days in odd-numbered years (60 days in even-numbered years). During that time, delegates and senators attend committee and subcommittee meetings, as well as attend the actual sessions where bills are voted on. When they are not in those meetings and sessions, they are in their offices, meeting with lobbyists and members of the public. Since this year's session was a short one, every lobby group with legislation pending was eager to get some time with the Assembly members.

The VA chapter of the March of Dimes has been lobbying for years. They reserved a conference room, which made things much more convenient (especially for me). I was able to leave my bag of blankets and jackets there, which lightened up the stroller considerably. We visited the Assembly members in groups. Aerin and I were paired with Jamie Hall, the community director of the Richmond WalkAmerica and Richmond Chef's Auction, and Pat Simmons, the state director. These two ladies do amazing work and it was an honor to lobby with them. Aerin took to both of them right away. She was in high cotton because there were tons of new people to look at and all of them smiled and waved and cooed at her. I was afraid that the crowds might be overwhelming for her (they were a little overwhelming for me at first), but that fear was quickly put to rest. Aerin smiled and waved at everyone. Two girl cadets (I have no idea what kind of cadets they were - you couldn't tell from their uniforms) left their group (squad? squadron?) so they could ride in the elevator with Aerin. They told me she was the cutest baby she'd ever seen. There was a group of schoolchildren (5th or 6th grade) on a field trip and they actually gathered around us to coo at Aerin. She loves kids, so she was as enamored of them as they were of her. There was also a group of teachers lobbying and a couple of them gathered the rest of their group to admire Aerin. She has this unnerving ability to draw crowds. We had a couple of times where I got nervous and had to excuse us, but Aerin was never fazed. She left a trail of sunshine in her wake and did a lot of good for her fellow preemies.

I was dressed in regular business attire, but Aerin was dressed in super-adorable lobby attire. She wore a pink corduroy skirt, a pink long-sleeved shirt, pink argyle sweater vest, pink tights, and pink suede cowgirl boots (under which she wore pink argyle socks). She had a matching pink argyle tam, which she kept on for about half of the visits. After she pulled it off, I put in her curlies. The cowgirl boots were an especially huge hit. We got in to see every single delegate on our list in what I was told was record time. Aerin smiled and waved at every single one of them! Even when she missed her nap! I was flabbergasted. I knew she was charming, but I had no idea that she could be that charming when it was so important. She even laid her head on my shoulder and smiled coyly at some of the delegates. And a couple of them were privileged to see her scrunchy face, taught to her by her father. It's hilarious and was tremendously well-received.

Most importantly, each of the eight delegates we visited agreed to vote for our bill! We got a good chunk of time with every single one of them, which I'm told is almost unheard of. Aerin was so delightful that one of them gave her a little stuffed dog. We did have an incident where Aerin's diaper started to leak right in the middle of my little speech. I kept on going, but here was my internal monologue, "Please, Lord, please don't let this delegate notice that I am covered in baby pee. Please stop this diaper leak, Lord, and get us out of here before he notices." Aerin somehow was relatively dry. A diaper change and new tights took care of her. The entire left side of my shirt was soaked. Thank goodness I was wearing black. I rinsed my shirt in the ladies room and dried it as best I could with the hand dryer.

While Aerin more than did her job of showing how important the MoD issues are, I was the one who did the actual speaking. As a preemie mom, I can speak from the heart about MoD issues. Our main goal was to get the FAMIS eligibility up to 200% (FAMIS provides affordable health care to children of eligible families). This means that a child is eligible for FAMIS if his family's income does not exceed 200% of the federal poverty level. The eligibility was previously at 150% and I'm excited and proud to report that it's now at 200%. As you can imagine, this will cover so many more children who desperately need health care. Many of these children are preemies (there is also a program for expectant mothers - FAMIS MOMS) who absolutely must have good health care after discharge.

In our next section, we will explore the smoking ban proposals that met with mixed results and the post-lobby MoD luncheon.

Worst Group Photo Ever

We had a great time on our trip. We're still recovering, so it might be a couple of days before my next post.

Standing Tall

The good news is that Aerin can now stand unsupported and unassisted! She's been doing it without noticing it for a few days. When she noticed, she started doing it deliberately. She is very proud of herself.

Aerin actually took 2 steps today. I'm not counting them as her first steps, though. She was standing near me and started to wobble, so she took the steps in the course of propelling herself forward. I caught her, of course.

The bad news is that Aerin has learned how to take off her diaper. We discovered this when we went to get her from her nap. It wasn't pretty. No more sleeping without pants.

I am working on the Lobby Day post, but I've been having weird log-in problems and it's a long post besides.

Aerin & Grandma

Aerin's Grandma Rita came down from New York to visit her. After some initial tears and pouting, Aerin had a wonderful time playing with her grandmother.

Aerin and I will be heading to the Virginia State Legislature tomorrow for the March of Dimes Lobby Day. I'll post a full report, plus pictures, on Thursday.

Hope y'all are keeping warm.

Bundled Up

We took Aerin out on a rare outing yesterday, just to remind her (and ourselved) that there's a world beyond our house. She was great and didn't even fuss on the car ride home. I put her in her door jumper before we left and let her crawl around her room so that she wouldn't be restless.

I'll try to write more later, but this is a busy week for us.

Playtime Progress

Aerin is very serious about her play. When she decides to put something somewhere, she will fulfill her mission at any cost. She's also very goal-oriented. Since she conquered the stacking rings, she's been working on her Haba train. She wants to be able to put the pegs into the holes and to put the blocks onto the pegs. So far, she can get the yellow peg in and put the blocks on about 1/3 of the time. They are the first toy she goes for during playtime. She's also very creative - she has figured out that if she puts things on the nursing stool (which is at an incline), they'll slide down. Pull-the-flap books are another favorite toy. She can lift the flaps herself and has such a good time. I think it's like peekaboo to her and that's still among her favorite games.

Teething is making Aerin very bite-y. She bit my left na-na yesterday and it was fantastically painful. She took me totally by surprise, too, so I cried out. This startled her into crying, to which I was somewhat less sympathetic than I usually am.

Aerin understands so much now. You can ask her if she's hungry, if she wants O's, if she wants Momma or Daddy, if she wants uppy, if she wants her baba, or if she wants a bite (Gerber apple wheels broken up into tiny pieces) and she'll let you know what she wants. She will also hand you whatever you ask for and give you five. She's also very good about not doing things that I tell her not to. I usually just say no, don't do that in a firm voice and shake my head and that's the end of it. Except she still won't keep her hat or socks on.

Sock Wars

Every night I put socks on Aerin because her feet get cold. Every morning I go into her room to find the socks on the floor. I'm considering taping them on.

Aerin continues to make feeding her a challenge. I did give her a couple of white raisins, which she loved. I can't give her too many, though, because they're not so good for baby digestion. We are making progress with the sippy cup. Today I put 2 ounces of cranapple juice and 6 ounces of water into one and Aerin took a few good sips.

In other micropreemie news, we were very pleased to hear that 16-year-old Hawaiian golfer Tadd Fujikawa made the PGA Tour event cut at the Sony Open on Friday. Like Aerin, he was born 3.5 months early, though he outweighed her by 3 ounces.

More Teeth

Aerin has had some cranky afternoons, which aren't much fun for anyone. She's finally getting more teeth and her mouth feels crummy. Her 2 front top teeth are coming in and she loves biting things in half with them.

Aerin can now identify my nose and mouth. She mostly does so by trying to jab her fingers into them, but she jabs at the correct feature. She loves when I ask her to give something to momma and then thank her. Her fine motor skills are fantastic - yesterday she put a very small wooden peg into its hole. I was shocked.

Happy Birthday, Daddy!

Today is Aerin's Daddy's birthday! She is so excited that she is having trouble napping (we're hearing lots of "talking" from her room). We're going out to celebrate, something that was out of the question last year.

Aerin has mastered the rings. She can get them on the stick every time and shows no sign of getting bored with them. She's also still into putting things places and has started handing me things. She really likes to be thanked - she laughs every time I say thank you to her.

We've pretty much abandoned the high chair. She is so much happier in her booster seat at the table. We don't even use the booster seat tray anymore. I think she feels more included sitting with us like a big girl. She keeps putting her foot up on the table, though. It's pretty funny, but I'm going to have to discourage it because it won't be funny when she's older. I also worry that she'll tip herself over when she's bigger.

I'm trying to get Aerin to eat more regular food in the hopes of getting some weight on her. She has eaten decent-sized portions of chicken the past few nights (cut into tiny pieces, of course). I didn't expect her to like the chicken when I offered it because I cooked it with pepper and cilantro, but she loved it. I think her palate is broader than a term baby because some of the medicines she takes with gusto are very strong-tasting (and smelling). Of course, Aerin being Aerin, she won't eat white potatos or bananas or rice or avocado, which would help her to gain weight.

Standing Alone

Yesterday morning Aerin stood without support for 5 seconds! I know because I held my breath and counted. I was very excited, but Aerin didn't even notice. She didn't even fall when she was done, she just reached her hand out for support.

Aerin loves to close her door when she plays in her room. I keep it open and gated and she just crawls over and swings it shut. Sometimes she doesn't shut it all the way and tries to open it so that she can try again. This never works because she sits in front of it and blocks it completely. It's so funny to watch.

We recently discovered that Aerin loved edamame (Japanese soybeans). I try to give her a large variety of foods so that she won't have a bland palate when she grows up. She is very game about trying new foods - she'll let you put anything in her mouth. However, if she doesn't like the taste, she'll pull it out of her mouth and throw it on the floor. She's not a spitter at all. She also has a highly-developed gag reflex and will make herself throw up if she decides she doesn't like something after she's swallowed it. I was thrilled that she liked the edamame - it's so good for her. She would have eaten an entire bowl of it, but too much can upset the tummy.

New Year's Day 07

Aerin ate 2.5 black-eyed peas tonight. She ate a half of one by itself and decided that she didn't like it, so I snuck 2 into her green beans. For those of you who don't know (aka Yankees), eating black-eyed peas on New Year's Day is a Southern tradition that ensures luck for the coming year.

Andrew taught Aerin to make the kissy noise and it's too adorable.

Happy New Year!

Aerin is ringing in the New Year asleep in her crib. She loves snuggling down under her blanket. I think it reminds her of when we used to do kangaroo care. She looks so cute under her blanket with just her little head showing. Aerin sleeps in the most uncomfortable-looking position ever - on her stomach with her legs straight under her body (her chin rests on her heels). All babies are flexible, but I think that Aerin has innate flexibility (inherited from me) that will stay with her when she grows. Our doctor assures me that some babies like to sleep in that or similar positions.

Aerin's new favorite hobby is putting things places. During breakfast, she puts some Cheerios on the dining room table and some on her changing table (and of course a large portion gets fed to the dog). When she's in her fort, she puts books and toys on the sides or in the seat of her swing or on the couch if she can reach. When she's not stacking and unstacking her beloved rings, she puts them everywhere from back into the toy basket to the top of one of her walkers to the seat of her bench. I find it very amusing.

Aerin still prefers books to all toys. Her gaze is rapt when we read to her and her comprehension is very high. She looks at the correct page while it's being read and looks at us expectantly when it's time to turn the page. She loves nothing more than being read to and has memorized all of her favorites. I'm sure y'all are wondering how I know this when she doesn't yet talk. Well, sometimes Andrew likes to be silly and make up his own stories or change the words and Aerin screams until he reads it correctly. She also loves to turn pages herself and will examine the words and pictures intently. She's in this new phase where she'll only eat if she's being read to. It's okay (but inconvenient) during supper when Andrew is there to read while I feed her. Breakfast is more problematic because it's just Aerin and me. I read a book, hand it to her, and shovel food into her until she demands another book by pursing her lips and shoving the spoon away. Then we repeat until the food is gone. It's gotten pretty old by now, but she has to eat.

Aerin is a tiny girl. She's in the 25th percentile for height and the 41st percentile for weight for her adjusted age (1 year). She's still not on the chart for her chronological age. She's a decent eater, but she's just not that interested in food. I feed her only organic fruits and veggies, with Cheerios and the occasional treat. She doesn't even get excited about treats and doesn't care when she finished something she likes (like pears or fruit-juice-sweetened snacks). She doesn't like avocado or bananas, which might help to put some weight on her. This is a loaded issue for me because it brings back memories of her painfully slow weight gain in the NICU (they had to give her fat through her feeding tube). We have to get some weight on her before her surgery this summer, so I'm going to have to get creative.

2006 was overall a wonderful year for our family, but I'm looking forward to the New Year. I'm hoping that we won't have any ambulance rides and that we'll say good-bye to hospitals in July. Happy New Year to all of our family and friends and blog readers who help us so much with your loving support. Don't forget to eat your black-eyed peas!

Having Fun

Not a Fan

We took Aerin on a rare trip to the mall last week. There were different characters walking around (presumably for Christmas, but a lot of them had nothing to do with Christmas at all, which was weird). Of course they came up to Aerin (everyone always does) and she was not a fan.

Happy Holidays

Happy Hanukkah, y'all! Aerin had her 15-month check up and everything is fine. She's healthy and her development is either normal or advanced. She weighs in at 20.8 pounds and is 28.5 inches long. She's allowed to sleep with a blanket now and she seems to like it (kind of). I'll be posting more when things slow down.

WalkAmerica

We have just signed up for our second March of Dimes WalkAmerica, which will take place on April 29, 2007. We raised over $600.00 last year and would like to raise $1000.00 (or more) this year. Our Marx Family Team 2007 page is up and running, so please check it out.

Aerin has learned to shut her door and to put the rings back on the stick (she just used to take them off and throw them around). This Friday is the anniversary of when she came home from St. Mary's PICU and her due date and the first night of Hanukkah, so we're pretty busy around here. We hope the holiday season is finding all y'all healthy and not too stressed.

Rusty Teeth. Literally.

Some time ago, I noticed some discoloration on Aerin's 2 teeth. I promptly freaked out because preemies are prone to a host of dental problems ("Preemie Mouth"). If a baby has cavities that aren't caused by human error (giving the baby juice, putting the baby to bed with a bottle, feeding the baby lots of processed sugars, etc.), often the only solution is to pull the baby teeth. I was so upset at the thought of Aerin having to have all her baby teeth pulled. I made an appointment with a special needs pediatric dentist.

We had our appointment Friday morning and it couldn't have gone better. I had filled out the paper work at home, so we didn't have to wait very long at all. I have a 2 page summary of Aerin's medical history that I give to doctors to save the time of telling it. Doctors are always thrilled to get it and Dr. Atkins was no exception. The let Aerin stay in her stroller and everyone was fussing over her, as usual. When Dr. Atkins put on his gloves and mask (with visor) and stuck his fingers in Aerin's mouth, I braced myself for the furious scream. Nothing. She just let him poke around in her mouth without a peep! She did kind of pull away at first, but when he didn't hurt her, she totally relaxed and just watched him. I was very pleasantly surprised. She didn't even mind when he scraped a little.

It turns out that Aerin has actual rust on her teeth from the iron supplement she takes to prevent anemia from the ulcers on her hemangioma. It's apparently not uncommon in patients with blood disorders who take iron. I never, in my wildest dreams, imagined that teeth could get rusty. It won't harm her teeth at all and if it doesn't go away by itself, Dr. Atkins will just scrape it off at her next check-up. Her teeth look great, especially for a refluxer. Enamel erosion is common in patients with reflux because the of the stomach acids that wash over the teeth. Thank goodness Aerin's reflux is managed to the point where she rarely spits up. The doctor also saw where other teeth are coming in, even without an x-ray. Aerin only has 2 teeth (the front bottom ones) so far and she's already 15 months old (1 year adjusted). I was happy to hear that there are teeth up there, though I'm not looking forward to more teething.

BTW, I always get paperwork ahead of time if we're seeing a new doctor (or dentist). Most offices are happy to mail it to you if there's enough time before the appointment. If there's not, it doesn't take much time to stop in if the office isn't too far and it makes things much easier to show up with the forms already filled out. It's also a good idea to have a summary of your child's medical history on hand. I keep one in my diaper bag and, as I mentioned, give it out to new doctors. It's very important that the doctors know your child's complete medical history and you never know what you might forget with the stress of a doctor's appointment with a little one. This includes any remarkable prenatal history, as well. Aerin's history is 2 pages long, single spaced.

Rusty Teeth

I'll explain tomorrow.

A Few of Aerin's Favorite Things

Here are some of Aerin's favorites (and least favorites), just fyi:

Favorite Toy: books (she loves to turn pages and examine the pictures)
-runners-up include rings on a stick, pop-up activity center, and wooden turtle

Favorite Food: Cheerios

Favorite Dog: Marlowe

Favorite Word: Daddy

Favorite Activites: Feeding Marlowe her food, being held by Momma, crawling on Momma, watching Momma do things, playing with Momma

Least Favorite Activity: Baths

Least Favorite Food: Peas

Least Favorite Thing in the World: Being away from Momma