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

Four Generations

This Thanksgiving, Aerin's great-grandmother, Isabelle, finally got to meet her. It was wonderful to have 4 generations of women together. Maybe not so much for Andrew, though.

Aerin and Daddy

Progress

Aerin changes so quickly that I can hardly keep up with all of her new and emerging skills to report them. She has mastered the pincer grip with her right (hemangioma) hand, as you can see. She can even take a Cheerio out of your pincer grip, if you offer it to her that way. Any lingering fears I might have had about her use of that arm have evaporated.

While we were visiting our friends in Northern Virginia, Aerin discovered that she likes cars. Tristan and Aidan, four-year-old identical twins, were so generous about sharing their toys that they didn't even blink when Aerin went after their fleet. When we got home, I searched for pink cars, but they don't seem to have any in the stores. So I got Aerin a green VW bug (new model), a black Lamborghini, and a red pickup truck. I have pink cars on order. Aerin loves to push them around and crash them.

Aerin has developed her own trademark wave. She raises her left arm straight in the air, without bending the elbow, and kind of moves her hand back and forth a little bit. We went to the store the other day and she was waving at people right and left. I had also made the mistake of taking her out with a bow in her hair, so it took about 3 times as long to finish my shopping with all the people wanting to stop and coo at Aerin. I'm glad she brings joy to people, but sometimes I just want to do my shopping and leave the store in less than 2 hours.

In other news, Aerin won't leave me alone. She screams when I leave the room, which can be very frustrating. She's been extra clingly lately, always wanting to be held or to sit in my lap. I don't know how I got such a clingy child - I am one of the most indpendent people I know and always have been. C'est le vie.

Prematurity Awareness Month

November is Prematurity Awareness Month. Please visit the March of Dimes home page to learn more about their prematurity campaign or to see how you can help give all babies their nine months.

Update

Yesterday, Aerin interrupted the democratic process. We took her with us when we voted and the voting official in charge of helping people at the ballot tables (they really aren't booths) was so captivated by her that he completely ignored an elderly lady who was having trouble with the computerized ballot. Let's hope she uses her power for good.

Our trip went better than the last one, but Aerin is still not a good traveler. She did fine on the rides to and from D.C., but she was up from around 11:30 p.m. to about 4:00 a.m. She was also much fussier than usual. Part of the sleeping problem, I think, is that we didn't bring any music for her to listen to. She has an iHome in her room and I have the iPod set for 14 straight hours of music. We'll be bringing it if I ever work up the courage to take her on another trip. Still, it was wonderful to see our dear friends and their exceptionally cute children. Our hosts have 4-year-old identical twin boys and they are remarkable. You only have to tell them something once - it's amazing. They were so good around Aerin and never once tried to touch her or any of her things. Aerin was fascinated by them. Also in attendance was our other friends' 2.5-year-old daughter, who is always on the go. She loves musicals and it was so funny to see her singing and dancing. We dressed all of the kids up in their Halloween costumes, but we couldn't get them to pose together for a picture. Imagine that. There is a 1.5-year age difference between the kids and it's so interesting to see where they all are developmentally.

Lastly, we have some news. After much thought and prayer and discussion with our doctors, we have decided to postpone Aerin's surgery. I don't want her in the PICU during RSV season, especially when she is ineligible for Synagis. I am also not ready to have her in the hospital so close to the time when she was in the PICU with pneumonia last year. She'll have the surgery sometime in June. We're hoping she'll have more usable skin, so she doesn't have to have such a large graft. She'll also be bigger and stronger, not to mention how much more developed her immune system will be.

Anniversary

I have lots of news to post, but that will have to wait until tomorrow. Today, Andrew and I (and Aerin) celebrated our 6th wedding anniversary.

Happy Halloween

Short Break

The Marx Family is headed up to Northern Virginia to spend the weekend with our dear friends. We'll have great pictures when we get back. Y'all take care.

MRA Appointment. Finally.

We just got the call that we have an MRA appointment. It's November 3rd, which is a week from this Friday and 2 days before our 6th wedding anniversary. I'm so happy that we're moving forward.

I'm also relieved that we don't have to starve Aerin - she can have milk and solids up to 6 hours before and clear liquids 3 hours before. Since the appointment is at 10:30 a.m., I was very worried about her going for such a long stretch without eating. She has to have a physical within 7 days of the appointment, which I scheduled after hanging up with the MRA people.

Short Update

We're still waiting for an MRA appointment. Dr. Haynes, the surgeon, is going to have to speak to the radiologist directly to get Aerin scheduled. That's how these things have to be done sometimes, but it's frustrating.

Meanwhile, Aerin has developed the disturbing habit of poking her hemangioma. It obviously doesn't hurt her, but it drives me crazy. She's also figured out that if she drops Cheerios on the floor near her new booster seat/high chair that Marlowe (our Shih Tzu) will come hang out near her. She only uses plain Cheerios as bait, though, never Fruity Cheerios (which I'm giving her to put weight on and which will become a rare treat after the surgery).

Intricate Surgery

We saw the pediatric surgeon, Dr. Haynes, today and the news is sobering. The operation will be extremely intricate.

The first step will be to get an MRA. Dr. Haynes needs to know how deep the hemangioma goes and also needs to look at its blood supply. This will be done this week or early next week. Aerin will be sedated and immobilized for the scan because the test is unreadable if she moves at all. Dr. Haynes and his partners will study the scan, as will Dr. Pozez (the plastic surgeon). After they complete their study, they'll all get together, along with the pediatric anesthesiologist, to plan the surgery. The surgery will be done at MCV, rather than St. Mary's. There will be 3+ surgeons operating on Aerin, as well as the anesthesiologist, and St. Mary's doesn't have the facilities for that many doctors. They also have board-certified pediatric anesthesiologists, which is very important.

The pre-op prep will be extensive. We will be having an anesthesia consultation, as well as the usual blood tests and exam. Bleeding is a major issue with this surgery. Aerin will likely require several transplants during the surgery, so she needs to be typed and crossed. Aerin is Type A+, but she has antibodies from all the Rhogam I got when I was pregnant, so finding a donor takes a bit more time than it ordinarily would. There is a chance that the bleeding would become dangerous, in which case they would stop the surgery and give Aerin a chance to recover. They would have to leave her open and go back in, so we're really hoping that doesn't happen. Aside from the bleeding issue is the preservation of function in Aerin's arm and shoulder. The MRA will tell us how difficult that will be. Lastly is the issue of cosmetics, which I couldn't care less about at this point.

Dr. Haynes told us that the chances of Aerin dying during the operation are slim. He was very kind and direct with us and his examination of the hemangioma was both thorough and gentle. He doesn't have any of the social problems that many surgeons seem to, which is especially nice for us. He also told us that it's very likely that Aerin will retain full use of her arm. Aerin didn't make a peep during the exam, to his surprise. She did cry when the nurse took her from me to put her on the scale. Aerin doesn't have any stranger anxiety, but she does have some major separation anxiety. That's perfectly normal for her adjusted age, so c'est le vie.

I spoke with Dr. Al-Mateen, who returned my call from his NICU in Virginia Beach. He'll be observing the surgery, which is a huge load off my mind. He told me that there's almost zero chance of Aerin not surviving the surgery and that he's never heard of any child who didn't survive. We are so blessed to have such wonderful doctors caring for our baby.

In order to prepare Aerin for the surgery, Andrew and I have to put as much weight as we can on her. We're going to see if she'll take whole milk and stuff her full of Cheerios. Aerin is just such an active baby that she burns a lot of calories, so we'll see what we can do.

I have to admit that I'm still having a hard time with this. The surgery will be in late November or early December, which is the same time she almost died of pneumonia last year. It seems that every doctor we see, the news gets worse. I'm very apprehensive about what the MRA will show - I'm hoping for the best, but preparing for the worst. I just try to remind myself that Aerin is my little steel magnolia - dainty on the outside, tough as nails on the inside. G-d has watched over Aerin her whole life and I know He will be with her during the surgery; I just can't help wishing He hadn't chosen such a rocky path for her.

Cheerios are Yummy