Demure

Aerin on the Trampoline

Happy Mother's Day!

A New Friend for Aerin

Mazel tov to our friends Jeff and Anne on the birth of their third lovely daughter, Maggie! And mazel tov to big sisters Emma and Bridget!

We can't wait to see pictures of the new little one. And especially the matching clothes pictures with three precious little girls.

More Fun at My Gym

Fun at My Gym

Aerin & Friends

I know, I know. Soon. Until then...

Aerin is a Political Genius

More later...

March of Dimes Luncheon

We had fun. Aerin decided to feed me pieces of bread just as Lisa Schaffner asked me what her name was. We met a 24-weeker (now 1 year adjusted), which is always exciting. Baby Julia is the first white 24-weeker I've ever met (black preemies do much better - I know several black 24-weekers and even two black 23.5-weeker girls), which shows how rapidly neonatal technology is advancing. It was the first time Miss Sarah and Miss Jamie have seen Aerin since before her surgery and growth spurt and they were amazed at her two shoulders and her height.

Aerin is now 37 inches tall and weights 29 pounds! Clothes shopping for her has become much more of a challenge.

Tomorrow is Lobby Day.

Busy Month

Aerin is getting over a cold, but she did watch the first half of the Super Bowl. She really watches football, which I find hilarious and awesome. The only other thing she watches is Peep and the Big Wide World.

We have a very busy month. In addition to Eema & Me and Gymsters, Aerin and I will be going to the Virginia General Assembly to lobby for the March of Dimes. We also have several events to plan for the March of Dimes March for Babies (formerly WalkAmerica) in April. The entire family will be taking a trip to D.C. to visit friends and Aerin has a Feeding Clinic appointments.

New York Trip: Part 1

Our ride north was fairly uneventful. We got a fairly early start and there was almost no traffic. Unfortunately, I had to change Aerin at a rest stop because the car was too full for me to change her in there. Rest stops are very challenging to germophobes, even the cleanest ones. Here is my procedure for changing a baby in a rest stop:

1. Perform a combination of self-talk and meditation to mentally prepare myself.
2. Carry Aerin into the bathroom and locate the changing table.
3. While still holding Aerin, grab a paper towel (or a wipe from the diaper bag if they don't have paper towels) and fold down the table.
4. Clean table off with lemon-scented Clorox wipes (takes about 5). This can be somewhat difficult while holding a lively toddler, but no part of Aerin can ever come into direct contact with a public restroom surface.
5. Lay a blanket over the table. Make sure the blanket covers the entire table.
6. Lay changing pad over the blanket.
7. Change the baby. This is the easy part.
8. Pick Aerin back up.
9. Wipe the changing pad with Clorox wipes before putting it in a baggie.
10. Place the blanket in a (separate) baggie. The blanket is now dirty laundry and should remain in the baggie until it is washed.
11. Purel baby and self.
12. Leave bathroom and hand baby to husband. Refrain from kicking husband in the shins when he asks what took so long.
13. Return to bathroom and wash hands with the hottest water you can stand.
14. Purel.

We got into the city around 4:30 p.m. It was bitterly cold. Now, I went to college in New York City and lived there with Andrew for almost a year after we were married. You'd think I'd be somewhat immune to the horror many small-town Southerners feel when they first enter the city. Nope. It was much dirtier and bleaker than I remembered and much more full of crazy weirdos. It didn't help that we almost got run off the road by one of those gigantic buses (the kind that are connected in the middle by that accordion thingy). Then the C.H.U.D.s came at us. Andrew did a superb job of urban driving with little to no cussing. Aerin was unimpressed with her first view of Manhattan because she is very cool.

Grandma Rita and Grandpa Steven were waiting to greet us. To say that they were ecstatic is an understatement. Their building has a large courtyard and we were able to pull right up to the door to unload. If you've ever had to unload anything from any kind of vehicle in Manhattan, you'll know what a life-saving blessing that was. Grandma Rita took Aerin into the building's playroom while Grandpa Steven and Andrew unloaded. I supervised. The men went off to park the car while I set thing up in the apartment. Then I joined Aerin and Grandma Rita in the playroom. Aerin was having a great time. They have a lot of toys there that we don't allow at home (ones that light up and make noise). There was plenty of room for Aerin to stretch her legs after being in the car for so long. Eventually, we all went upstairs to relax and see Uncle Daniel. We had Vietnamese food for supper. Now, I love the Southland y'all, but they just don't have good Vietnamese food down here (or Chinese. Or bagels). I was able to actually sit down to eat because I didn't have to watch Aerin. It was great for everyone.

I had hoped that Aerin would be so tired that she'd go right to sleep. She only napped for about an hour in the car and she was up later than usual. Of course, Aerin had her own ideas about things and she wouldn't let me leave the room. I had put the Pack N Play next to the bed, so I just laid down. That was good enough for her to settle down, but not go to sleep. I tried to outlast her and stay up for adult family time, but I fell asleep. That was for the best, because Aerin was up at 5:00 a.m. I took her in bed with me and she slept for another hour, but we were all up after that.

Coming up in Parts 2 and 3: our trip to the Museum of Natural History (Aerin was unimpressed) and to the Metropolitan Museum of Art (Aerin was unimpressed).

New Video: Part 1

To tide you over until the NYC trip post, here is some video that I shot when we went out for Andrew's birthday on Wednesday.

New Video: Part 2

New Video: Part 3

Happy New Year!

Yes, I know we're a week in. Sorry, y'all. Here's a quick update to catch us all up.

Aerin's incision is 99% closed now. The last scab fell off last week and it looks fantastic. The outcome is really better than I ever imagined it could be. It hasn't affected Aerin as much as it has Andrew and me. She never let the hemangioma slow her down or get in her way, so she's just going about her business as usual. For me, it's a vast improvement in my quality of life. I don't have to make sure I have my tumor kit (Neosporin, Mepitel pads, gauze, tape) every time I leave the house. I can pull clothes over Aerin's head neck-first, rather than pulling the sleeve over the hemangioma first. Aerin can wear long sleeves! And footie pajamas! The footie pajamas are a huge milestone for me. I couldn't put her in them when she was an infant because the zippers wouldn't accomodate the apnea monitor cords. By the time she outgrew the monitor, the hemangioma was too big. I am so in love with footie pajamas. Not only are they adorable, but they are necessary for us because Aerin will not keep socks on her feet. It doesn't matter how cold the floor is, she just likes to be barefoot. Our entire house is hardwood, so I've got to keep her feet covered. She doesn't seem to mind the footies at all and her feet are nice and warm.

Aerin's physical issues are mostly resolved. I say mostly because a micropreemie as small as Aerin was will always have some medical issues. Although she is no longer severely immunocompromised, she will probably always be more susceptible to germs and common transmissible illnesses than a term baby. The BPD (Bronchopulmonary Dysplasia, aka lung scarring) will continue to subside as she gets older and will probably resolve itself completely by the time she's four.

Aerin does still have mouth issues, but they could be much worse. We saw our dentist, Dr. Atkins, in December for a check-up. Aerin's teeth are perfect, which is astonishing. Tooth brushing is a major issue for us and it's one that I purposely avoided until recently. It's almost impossible to safely restrain a child with Aerin's hemangioma for involuntary tooth brushing. It wasn't something I ever felt comfortable doing. Despite this, Aerin has no cavities and didn't even need a cleaning. Dr. Atkins gave her a fluoride treatment and that was that. The reason Aerin's teeth are so good is that we are very careful with her diet. We only allow milk and water (and Pedialyte when she's sick). We never give her juice and we limit sugar. Fortunately, Aerin doesn't have much of a sweet tooth anyway.

Aerin will be going to the Feeding Program at Children's Hospital next month for an evaluation. This will be a 3-hour event involving 6 specialists. It's possible that she won't qualify for the program (in that she doesn't have enough feeding issues to require therapy, not that they don't have space for her). For the past couple of weeks, she's been refusing to eat any baby food with a chunky texture. She's also been refusing regular adult food (chicken breasts, green beans, etc.). I think this might be a combination of how much easier it is for her to feed herself smoother food and how much more satisfying it feels in her mouth. She also won't let me add anything to the smooth food. If I try to put a piece of chicken in her squash, she'll suck all the squash off and spit the chicken out.

Next week, Aerin will be starting the Eema & Me (Eema is Hebrew for Mommy) program at her preschool. We'll have to see how that goes and then decide if she's ready to start preschool this year. My guess is that she is not. We both enjoy the Munchkin Minyan playgroup at our shul, but I'm curious to see how Aerin does with a longer, more structured program.

Lastly, we just got back from our very first trip to New York City (Andrew's hometown and where I went to college). I'll be posting more about it later on, but you can see the pictures here.

Staples Out

Dr. Haynes removed Aerin's staples and the top layer of stitches in his office yesterday. They had to stay in an additional week because the skin was so tight. The tightness was to be expected - Dr. Pozez only had a limited amount of skin to work with. It's really a testament to her monumental skill that she was able to close the wound without a graft. Both Dr. Oiticica and Dr. Haynes told me that they were astonished that she managed it. We're thrilled, particularly because a graft would have been quite painful and taken much longer to heal. It also would have left more scarring.

The wound is pretty gruesome. It's not like a cut or a surgical incision - it's much bigger and nowhere near as straight. It is, however, much straighter than I ever thought it could be. There's some swelling and separating, which is to be expected. New skin will grow to cover the separation. We're keeping it clean and bandaged. Thankfully, I have a lot of experience with wound care from when the hemangioma was severely ulcerated. Otherwise, we would have had to go into the office every day for dressing change. Our routine until the next visit to Dr. Haynes it to clean it with soap and warm water every day, cover it with Neosporin, and bandage it.

Aerin is not in any pain. It's hard to believe, especially when you look at the wound. She's using the arm normally and she's her usual exuberant self. We did have two incidents when she had just come home - she woke up screaming in pain. We think she probably rolled over on the arm in her sleep. We gave her Motrin and Pedialyte and she was fine within minutes.

I'll write a full account of the surgery in the next week or so. Aerin and I came home from the hospital with colds and we're both just recovering now. Here is a link to a picture of the wound 5 days post-surgery. It is very graphic and icky, so please don't look at it if you have a weak stomach. Seriously. I cannot emphasize enough how gross it is. Okay, here goes: the picture.

Home Safe

After a very, very long day and night, the entire Marx Family is home! Aerin is doing unbelievably well - you'd never know she had major surgery 2 days ago. We trying, with limited success, to keep her as still as we can.



Here are some pictures from the surgery:



This is Aerin in the PACU (Recovery). We were the only parents allowed in.







Here are Aerin and Momma in Aerin's station in the step-down unit.










Here are Aerin and Momma asleep in the crib. It was even less comfortable than it looks for Momma.







Here is the immobilizer that Nurse Joanna and I had to rig to keep Aerin from moving her arm. She still managed to pull 2 stitches, which Dr. O fixed before she was discharged.





I'll try to write a more detailed post in the next few days. Aerin is getting her staples out on Tuesday and her stitches out in 2 weeks.