MRA Eve

Aerin and I spent today preparing for her MRA. First we saw Dr. Cantor, who gave Aerin a clean bill of health. Everyone at the office was so excited to see her walking. Aerin was pretty good during the exam, but she absolutely hates having her ears checked. We found out that she grew 2 inches in a month! That brings her back up to the 25th percentile for height, which is great. It's nice to be able to put one fear to rest. She's gained 2 ounces in the last month, which is okay, too. As long as she doesn't lose any weight, she'll be fine for the surgery.

After the pediatrician, we went to see the new rabbi at our shul, Rabbi Case. The shul staff was thrilled to finally see her. We got to meet the new principal of the Religious School that Aerin will be attending when she gets older. Rabbi Case was so kind and gave Aerin a special bracha (blessing). He'll be coming to see us at the hospital tomorrow and will come to the hospital when she has the surgery. He told me that it's apparent that Aerin is a very special child and that Hashem has a special path for her.

I woke Aerin up at around 11 p.m. to give her milk. She did not want to wake up - it was so adorable. First I took her in the rocking chair and tried to give her the sippy, but she just wanted to cuddle against me and go back to sleep. I tried moving her into different positions to no avail. She was determined to get back to sleep. I can certainly relate - I hate being woken up. She was a much better sport about it than I usually am. She didn't cry at all. She didn't make a sound, in fact. I finally had to sit her on the rug and she woke up enough to drink. I rocked her when she was done and put her back in the crib. She went right back to sleep. I was afraid she would wake all the way up and want to party, but she pleasantly surprised me.

I have to be up at 5 a.m. tomorrow morning so that we can be at the hospital at 7 a.m. I'm hoping that Aerin will be groggy enough that she won't be upset when I don't give her anything to eat or drink. I have everything packed up and ready to go, so I'm going to try and get some sleep.

MRA News

I just spoke to the MRA Department at St. Mary's and I feel better. They will allow me to stay with Aerin until they put her under and they will let me into the recovery room the second she shows the slightest sign of waking up. They'll even put the Pedialyte in her own sippy cup. The nurse could not have been more helpful and reassuring. She even gave me her direct number if I have any more questions.

We have to be at the hospital at 7:00 a.m. and they should start by 8:00 or 8:30. We'll have the anesthesia consult beforehand. Aerin can't eat or drink from midnight on, so I might wake her up at 11:00 p.m. and give her some milk so that she won't be starving. I don't think it'll be too hard for her because she'll be very tired - she normally wakes up around 8:30 and we have to leave the house by 6:20. Aerin will be having a physical the day before, so I'll get to talk to her pediatrician. They always help reassure me.

I'll also get to look at the films myself. They give them directly to me and I deliver them to Dr. Haynes. I know I won't be able to read them, but I want to see them nevertheless.

Now I just have to find clothes for her that don't have snaps or zippers.

Stacking Cups

Diagnoses

We've had a very eventful couple of weeks.

Last week we went to the Henrico Doctors' Developmental Follow-Up Clinic for an evaluation. We normally only go every 6 months, but I had some concerns. Aerin isn't hitting some milestones on time or at all. Although she understands everything we say to her, she isn't talking. She also won't feed herself (though she's demonstrated that she can) or scribble with a crayon. She FREAKS OUT when you brush her teeth or wash her hair and she refuses to let you guide her hand. I thought that she might be a little slow or maybe not that bright. I still feel very guilty about that. It turns out that Aerin is perfectly bright - she has a condition called Sensory Processing Disorder. SPD is a spectrum disorder that affects the way the brain interprets the information that comes in; it also affects the response to that information. This is almost certainly the result of her extreme prematurity - her central nervous system had to function before it was fully mature. Dr. Brown told me that almost all of the micropreemies and a goodly number of regular preemies she sees have some degree of SPD. Aerin is fortunate not to have a lot of the more extreme symptoms and should do very well with therapy. She will be going to both Occupational Therapy and Speech Therapy and the doctors are very optimistic that she'll have a successful outcome.

Although SPD (sometimes called Sensory Integration Dysfunction) is often associated with Autism, Aerin does not have Autism.

We also went back to the plastic surgeon, Dr. Pozez. She was very happy to see how Aerin has grown and how clean the ulceration on her hemangioma is. She was able to tell us that she almost definitely can do a skin graft! That was a big relief. She also said that even if Aerin does need a VAC*, she'll train us to do it ourselves at home so that Aerin doesn't have to stay in the PICU an extra week.

Aerin's MRA has been scheduled for August 9th. Her surgery will likely be in the early fall.

Aerin has mastered all of the shapes in her shape-sorter, which Dr. Brown was very impressed with. For some reason, the triangle took her the longest. She got the star right away, which is much harder, but that's so Aerin. She is also a whiz with puzzles and regularly does ones in the 2-4 age range.


*VAC is short for Vacuum-Assisted Closure, also known as negative wound pressure therapy. It promotes the formation of granulation tissue in the wound bed. In this system, a special foam dressing with an attached evacuation tube is inserted into the wound and covered with an adhesive drape in order to create an airtight seal. Negative pressure is applied and the wound effluent is collected in a canister.

Update

Aerin's Uncle Daniel is visiting and she has really taken to him. She even pulled off his glasses and gave them to me after a half-hearted attempt to put them back on him. She loves to take off my glasses and try to put them back on my face. Luckily I have good reflexes or I'd have been stabbed in the eye many, many times.

We went out to supper and then to Huguenot Park, which is very close to our house. They have a fantastic playground, the nicest I've ever seen. Aerin mostly just wants to walk around the path that circles the playground (but is inside the gate). She did follow me up 3 "stories" of the playground apparatus. Andrew took her down a slide and she wasn't impressed. I think she'll have more fun as she gets used to it.

Aerin has developed some eating quirks which have made mealtimes twice as long. First, she will only tolerate 2 pieces of food on her placemat at a time, max. Any more than that and it will all get swept onto the floor. Aerin either eats what we eat or baby food. The other night she ate an entire meal of roast turkey breast (which I cook often - it's so much easier than cooking a full turkey) and steamed green beans piece by piece by piece by piece. My meal was ice cold by the time I finished, because Aerin fussed if I didn't keep the pieces coming. Then, yesterday, she refused to eat steamed carrots, which I know she loves. So I had decided to let it go when a dog fight scared her. I took her on my lap and she started scarfing down the carrots (her bowl was in front of me). As soon as I put her back in her seat, she refused the carrots again, so I held her until she'd finished them all.

Yahoo Photos is closing, so we are switching all of our photos to Flickr. You can find our photo album here. It's going to take a couple of weeks for the transfer to complete, so don't worry if you don't see very many photos at first.

I want to thank everyone who emailed me with offers to donate blood to Aerin. We've had to keep ourselves so isolated that it's sometimes hard to remember that there are so many people who love our family. Y'all are wonderful, we're very blessed to have you in our lives. Aerin's blood will be supplied by Virginia Blood Services. They don't take out-of-state donations and there's a lot of hoops to jump through for a directed donation.

Lastly, Aerin weighed in at a whopping 26.5 pounds! The nurse was so surprised that she weighed her 3 times to make sure. Aerin is just very, very muscular, which is why she looks much smaller than she is. Dr. Haynes was very happy with her weight, so it's nice to know that we've done exactly what we were supposed to.

Surgery Update

Aerin is adjusting very well to the new house. She had some problems getting to bed at first and I had to rock her until she fell asleep for the first few days. We had one very bad night (up until 4:30 am), but we're back to our normal routine now. Aerin is having some separation anxiety, which is probably from the 2 weeks when her grandmothers watched her so that Andrew and I could get the new house ready and pack. She loves her grandmothers, but she was so used to having me around all the time. We've also had a lot of strangers (aka contractors) in the house lately, more than we've probably ever had. Now that she's back to having me all to herself, she's slowly relaxing.

We went to see our surgeon, Dr. Haynes, today. The news wasn't good. Aerin's hemangioma hasn't become any less vascular, despite how much of it has changed to pseudo-fibro-fatty tissue. This indicates that the vessels are abnormal and that the hemangioma will never resolve on its own. It also means a much longer surgery with more time under anesthesia. Dr. Haynes will be tying off the vessels or cauterizing them with a bipolar forceps and he has to go very slowly to prevent hemorrhaging.

Another problem this creates is how to cover the hole that the removal will leave behind. Dr. Haynes isn't sure that it can be grafted. We'll be seeing Dr. Pozez, the plastic surgeon, on July 12th to discuss our options. The greatest danger of graft alternatives is infection. Aerin will receive antibiotics during the surgery, but having such a large open wound for an extended period to time will leave her very susceptible. This might also increase the amount of time she'll have to be in the PICU.

We did get a bit of good news - there's almost no chance that she'll lose the use of her arm. The vessels don't seem to be near those nerves.

Our next step is to get Aerin a MRA so the surgeons can see how deep the hemangioma goes and map its blood supply. Then Dr. Haynes can see if he needs to call in any additional specialists. If so, he'll do that. If not, he will meet with the team (his partner, Dr. Pozez, and the anesthesiologist) to plan the surgery. We also have to arrange for blood for Aerin's transfusions. I can't donate because I'm B- and Aerin is A+. Andrew might be able to, but Aerin has antibodies in her blood from all the Rhogam I got when I was pregnant. If Andrew can't donate, they'll have to find a donor. This entire process will take anywhere from 8 to 12 weeks.

I have to admit that I was secretly hoping that Dr. Haynes would say that Aerin doesn't need surgery. When he said that she "should survive" the surgery, it was devastating to me. He won't give me any numerical odds because he won't know until he opens her up. This is the point where I just have to trust the doctors. All of my research is done and we've made Aerin as physically strong as we possibly could. We just have to pray that the Lord is working through the surgeons and that He will watch over Aerin and keep her safe and with us.

Moving On

Posts are going to be few and far between for the next couple of weeks. We closed on our new house on Friday and we've had 2 major leaks in our townhouse, so we've been very busy. Aerin is great. We went to see our friends' super-adorable new baby, Emily Grace, and Aerin wasn't even jealous when I held her. She pretty much ignored it and kept on walking around and around the kitchen island. She was very interested in the cat and "ran" toward it whenever it came into the room. The cat wanted nothing to do with her and fled, but it's nice to know that Aerin isn't afraid of cats. Aerin also loves rolling and throwing her ball to me and will do so indefinitely.

Happy Mother's Day

Here is some more video of Aerin.

More Aerin Video

Aerin Walking

Playground Fun

We took Aerin to our community playground for the first time today. She went on the baby swings and Andrew took her down the slide and the merry-go-round. She had a fantastic time and loved every minute of it. I finally figured out which is the motion setting on our camera and got some action pics.

I will be a facilitator at the March of Dimes Prematurity Summit tomorrow, which is very exciting for me. It's my first MoD event without Aerin, so it will be very different than what I'm used to.

Update Coming

Sorry for the long hiatus. Aerin is doing great - she has figured out how to turn doorknobs. Thank goodness she's too short to turn them all the way and thank goodness for baby gates. We had a fantastic time at WalkAmerica - pictures and details to come.

Booger Boy

Aerin loves her stuffed animals. She has 3 favorites: Henrico Bear (a polar bear with a pink sweater that reads, "I was born at Henrico Doctors' Hospital"), Pork Pal (a small pig that we kept in her isolette), and an unnamed lamb (suggestions welcomed - it's a boy lamb). She will bring one or all of them over to me, climb into my lap, and hug them. It's so cute. She can do this for hours, though, which is less than ideal for me.

Today we went to the Mother Goose story hour at our local library. This is misleading in that they don't read any Mother Goose and it's only half an hour. It's the 6- to 24-month-old group. This isn't the storytime that I remember, where you sat quietly while the librarian read to you. There is singing and dancing and clapping games. Aerin was pretty unimpressed with all of that and chose instead to walk/crawl around the room. I picked her up for a bit and she was more interested in the pictures on the walls. She did participate during the times when the kids were supposed to be quiet or there was a lull - she spoke out, in full voice, "Daddadadadadadada!" Her timing is remarkable and her voice is impressive, too. She will definitely be a singer. She did enjoy the part where we all trotted in a circle with little bells. The librarian handed them out, but I just couldn't take a set or let Aerin. I know they're not sanitized between kids and there's no way I'm compromising Aerin's health. The librarian looked at me like I was nuts when I politely declined, but I'll bet she catches a lot of yukky bugs.

It was at the end of the (half) hour that we had a traumatic (for me) encounter. I was loading all of our stuff into the stroller. Aerin was already buckled in and enjoying an apple wheel when a little boy walked up to us. I'm sure he has a given name, but he'll always be Booger Boy to me. This child's face was so coated with boogers that I actually gagged. They were colorful and enormous and encased in an astounding amount of dried mucus. I cannot imagine what this child's mother was thinking. This was a situation that had surely been building for hours and there was no way she couldn't have noticed it. I know kids can be messy and dirty, but this was like nothing I've ever seen and I've seen some stuff, y'all. He eyed Aerin's apple wheel and I knew we had to get out of there, so I threw all our stuff in the basket and retreated to the YA section. Aerin was oblivious to the danger she was in, but I'm scarred for life. We'll be trying another branch for next week's story (half) hour. And we'll both be encased in a large, plastic bubble.

Prayers

Our hearts and prayers are with the victims and families of the Virginia Tech shooting.

On the Go

Aerin's Grandpa came all the way from New York City to see her and we all had a lovely time. Aerin especially liked to hear Grandpa read her favorite books in his New York accent - she was riveted. Grandpa gave her ice cream and she really enjoyed it (not as much as every other baby I've ever seen, but she's not as into food as most babies).

I finally feel comfortable reporting that Aerin can walk. Her longest sojourn to date is 15 steps without stopping or falling. She still crawls some, but she loves to walk. Aerin is a very self-aware child and knows when she should be proud of herself. She just beams when she makes it from one place to another. She stacked 6 blocks the other day and grinned from ear to ear.

We're finally cleared to go to story hour at the local library and I just can't wait. I think Aerin will be in high cotton because she loves books and she loves other kids. I'm trying to decide on the perfect outfit.

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.