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

2 Surgeons and Counting

Well, nothing's every simple with Aerin.

We met with the plastic surgeon, Dr. Pozez. After a brief examination, she informed us that Aerin will need an additional surgeon to perform part of the removal (hemangiomaectomy?). The hemangioma extends below the surface and has its own blood supply. Dr. Pozez wants to make sure that the veins are tied off or removed without affecting Aerin's shoulder or arm and the best person to do that is a pediatric surgeon with vascular specialty. We have an appointment with him on Monday (he's in surgery today and tomorrow). She also discussed our options for the closing. We've decided on a skin graft. The reason we chose this was because it has the fastest recovery time and the least time under anesthesia. She'll also be able to come home sooner - the other option (V.A.C. therapy) requires several weeks hospitalization. The skin will most likely be taken from Aerin's thigh.

Dr. Pozez was very thorough and really listened to all of our concerns and explained all of our options. She personally prefers minimal hospital stays and told us that Aerin might be able to go home the same day. She also said that as preemie parents with wound care experience, she would feel more comfortable releasing Aerin earlier than she might with term baby parents. We knew this wouldn't be a mole removal, but we had kind of hoped to avoid the multiple surgeon/multiple specialty epic. C'est le vie.

During the consult, Dr. Pozez said that she's recommended against removing hemangiomas in children many times before, but that Aerin's needs to come off now. She also gave us a wonderful new dressing made of silicon that truly is non-stick. It's also porous, so the scabs hardly melted at all. This is a great help to us. Dr. Pozez also remarked on how beautiful Aerin is. It isn't unusual for us to hear nice things about Aerin's looks, but when a plastic surgeon tells you that your child is beautiful, it's pretty much official.

Aerin was her usual calm self. She just loves to look at new people and things. She let Dr. Pozez examine the hemangioma without a peep - she went right on drinking her bottle. The highlight of our day was when, to our astonishment, Aerin said hi to an elderly lady in the waiting room. The lady was shocked and asked us, "Did she just say hi?" It was hilarious. It was the first time she's said hi to anyone other than Andrew and me. Aerin also calls Andrew "Daddy" or "Dad," but not "Dada."

Big Day

Today is Aerin's appointment with the plastic surgeon. It's at St. Mary's at 3:00 p.m. I'll let y'all know how it went sometime this evening.

Finally!

We have some good news - Aerin is finally getting a tooth! She's been teething for months with no teeth in sight and it's been pretty unpleasant for all of us. It's coming in on the bottom and I have to say that I'm relieved. I was having visions of having her fitted for baby dentures.

I had a long talk with out pediatrician, Dr. Al-Mateen, about Aerin's surgery. I feel much better. An anesthesia consult is part of the pre-op exam at St. Mary's, where the surgery will take place. Their pediatric anesthesia team is the best, which is so important. Fortunately, Aerin does not have BPD, which would have made anesthesia risky. Also, they'll sedate her before starting an IV and putting her out, so she won't have any fear or pain. They'll also let me into the recovery room, so I'll be there when she wakes up. I'll be the last thing she sees before she goes to sleep and the first thing she sees when she wakes up, which is a huge relief for me. Dr. Al-Mateen wasn't able to say if she'll have to stay overnight. That wouldn't bother me - Aerin was in the St. Mary's PICU for more than 2 weeks. She'll be on the regular peds. ward this time and I can stay with her. We will most likely have our plastic surgery consult on Thursday and we'll know more then.

I think I've figured out what's got me unnerved about this surgery. In the NICU and the PICU, procedures are done at the bedside. I was always able to be in the room or just outside whenever Aerin had something done. This time, they'll take her into the OR and I can't be in there.

Diagnosis: Surgery

We finally got to see the pediatric dermatologist today. We actually saw 3 and they all agreed that Aerin needs to have her hemangioma surgically removed sooner rather than later. We will be meeting with a plastic surgeon next week and she'll have the surgery at the end of this month or the beginning of November.

The doctors gave us a lot of excellent information and really took the time to explain everything. The hemangioma will never go away on its own. It will get less red, but the tumor tissue will be replaced by some kind of fatty tissue (I don't have my notes with me right now - I'll elaborate later). The scabs won't go away for years, either, and that's the main problem. The hemangioma doesn't hurt (the doctors all pushed on it and Aerin just stared at them), but the scabs hurt when they come off. We have to dress the scabs when Aerin wears clothes that cover her shoulder, which will be all the time once it gets cold. Some scabs always come off when we remove the dressing. There's also the risk of a secondary infection, which we take very seriously. As Aerin gets older and more mobile, it'll be harder to keep her in the germ-free cocoon we've created for her and the risk of infection will increase. And of course there's always the chance that we could have a repeat of Sunday's bloodbath. There just aren't any other options at this point. Steroids only work when the hemangioma is in a growth phase and we're long past that. Lasers might help with the scabbing, but there's a good chance that they won't and it's a painful process.

The surgery won't be as involved as I thought. Yes, the tumor has its own blood supply, but the veins are so small that they won't be a problem. If they weren't as tiny as they are, we wouldn't have been able to stop the bleeding just by applying pressure. We don't yet know if Aerin will need a skin graft. There might be another option, but it could involve more procedures. We'll find out we see the plastic surgeon.

I'm not taking this as well as I thought I would. I knew she'd need surgery, but I never thought it would be this soon. I'm a bit apprehensive about the anesthesia, but we're going to request an anesthesia consult before the surgery. I think it's just the idea of my baby being in pain for even a second that is just unbearable to me. I'll feel better when we know more.

Update

Just wanted to let y'all know that there's a second part to the video of Aerin laughing.

Our friends are being very obliging about providing Aerin with new playmates. On September 22nd, our friends Bob and Dana welcomed a beautiful little boy. He couldn't have asked for more loving and intelligent parents. Congratulations to the entire family.

More Excitement

We had some excitement today. Aerin is fine, but we had to take a trip to the emergency room.

Early this morning, Andrew woke me up to help him take off Aerin's hemangioma bandage. I had used Aquaphor on it for the first time last night. It's supposed to keep the scabs from sticking to the bandage, but it ended up kind of melting them. When I took off the bandage, all the scabs came off and there was lots and lots of bleeding. Andrew called 911 and they were here in 4 minutes. We're so glad to live in Henrico County - not only do they have a tremendously fast response time, but 8 paramedics came to our house. By that time, the bleeding had stopped. I still wanted to go to the ER, because I was afraid the blood loss would make Aerin anemic and I wanted them to give us something to prevent a secondary infection. This ambulance ride was very different from the one we took last December. They put our car seat in the ambulance and Aerin rode to the hospital like a little princess. She just drank her milk and looked around. She didn't cry much when the scabs came off and she stopped crying when I picked her up to stop the bleeding.

When we got to the St. Mary's ER, we were taken right into an exam room. A nurse took Aerin's info and we were seen by the doctor in less than 15 minutes. The only time Aerin cried was when they held her down to draw blood. They needed more than you can get from a heel stick, so they had to get it from her hand. If there's one thing Aerin really hates, it's being held down. She also hates lying on her back. The stick didn't hurt her much at all. They let me pick her up as soon as they were done and she stopped crying immediately. If she was in any pain, she would have definitely let us know. Aerin fell asleep while we were waiting for the test results. She is anemic, but not enough to require a transfusion. We'll be seeing the pediatrician tomorrow and I think she'll be put back on iron for the next couple of weeks.

Being a mother really does transcend everything else. I am very squeamish about blood, but I didn't have any problems stopping Aerin's bleeding. Her hemangioma doesn't gross me out either, and it's really super icky. Andrew once again proved that he's the best husband and father ever and was calm and supportive the entire time. I think that Andrew and I were able to keep calm because of all we've been through with Aerin - this barely registers. It was so wonderful to go home from the hospital with Aerin the same day we brought her in.

Aerin is doing great. She's eating well and she went to bed just fine. She actually had a better evening - she has a tendency to get cranky close to supper time. She is just such a little trooper. Andrew was acting silly and made her laugh harder than I've ever seen. I was able to video tape it - you can see it on YouTube.

Big Update

We've been very busy lately, getting Aerin all checked out and watching her add skill after skill to her repertoire. There's a lot to report.

Developmental Follow-Up Clinic
The Developmental Follow-Up Clinic is at the Parham Campus of Henrico Doctors' Hospital. The NICU and Perinatal Special Care Unit are at the Forest Campus, so we didn't see any familiar faces. Aerin was examined by both a developmental specialist and a neonatologist who specialized in follow-up care. The developmental exam was very fun for all of us. We were taken into a room that was both a playroom and an exam room. The specialist, Tammy Tarochnik (who I'm sure will forgive me for the misspelling of her last name), first handed Aerin various blocks to test her grip and coordination. Aerin did everything on that checklist - she took them in either hand, transferred from hand to hand, waved them around, and put them in her mouth (everything in the room is sterilized between patients). We then moved down to the floor. They had an anti-bacterial play mat, so Aerin got to show off how well she crawls. She pulled herself into a standing position, took a couple of sideways steps holding onto a chair, played with various toys, and talked up a storm. Aerin had a fantastic time and was all smiles and giggles. She is either on target or ahead of her adjusted age, which is pretty much what we expected.

The neonatologist, Dr. Brown, did a brief physical exam and spoke to us at length afterward. Basically, Aerin is a healthy baby. She has no health issues other than her hemangioma. Their only concern about the hemangioma is that the weight of it will interfere with the development of her arm muscles. It hasn't so far, which is a good sign. They want us to watch it and make sure that Aerin doesn't favor her left arm. We try to hand her things to her right hand and make her reach up for them. She does it easily and without complaint, so I feel confident that her arm will develop normally. They also want us to try to get her to crawl as much as we can. Crawling is important for the development of her abdominal muscles. Aerin stood very early (even for her adjusted age) and she very much wants to walk, so she prefers to take steps holding onto a support. We just try to put her where she has no choice but to crawl and it's working out pretty well.

We do need to work on Aerin's pincer grasp (thumb and forefinger grasp). We didn't know if she was ready for cereal, so she'd never really gotten the chance to use it at all. She was approved for cereal and now, almost 2 weeks later, she has almost perfected the pincer.

Aerin had such a fun time at the clinic. She really enjoyed playing with their toys and she loved crawling around on the floor. She positively beamed at Tammy and Dr. Brown for most of the exam. She did scream when Dr. Brown carried her to the scale, but she calmed right down when I picked her up. Aerin loves people, as long as they don't pick her up or take her away from her momma. She eventually gets used to unfamiliar people holding her, but it takes longer than an exam. She quickly forgave Dr. Brown and impressed her with her talking.

One-Year-Old Check-Up
Aerin's one-year-old check-up was the day after her developmental appointment. She got her chicken pox vaccine and barely even cried. They let me hold her when she gets shots and that makes it much easier for everyone. I think that at least 50% of a child's reaction to pain or trauma is caused by the parent's reaction. Andrew and I are always very careful to be calm and encouraging whenever Aerin falls, gets a shot, etc. We smile when she looks at us, even if we are freaking out inside. Aerin cried when the nurse stuck her, but stopped when she saw I was smiling. She has a high threshold for pain, but a very low tolerance for discomfort. She was very unhappy when poor Dr. Al-Mateen had to lie her down to listen to her chest.

Dr. Al-Mateen confirmed what Dr. Brown told us - Aerin is very healthy. Her heart is strong, her lungs are clear, and her eyes and ears are perfect (and beautiful). Aerin is so big and healthy that she's not getting Synagis this year. Honestly, that makes me a little nervous, but she just doesn't qualify. We don't even have to go into full quarantine this RSV season. As long as we keep using our normal micropreemie precautions (good handwashing, cleaning with bleach, no exposure to sick people), she'll be okay.

Aerin has move up from the 25th percentile in height and weight to the 50th percentile. She's a whopping 18.5 pounds and 27.5 inches long. This is for her adjusted age - she's still not on the charts for her chronological age. I think they probably need to adjust the charts to allow for how big babies are nowadays. I usually tell people her adjusted age when they ask and everyone is always remarking how tiny she is.

Something that we're particularly happy about is that Aerin is off formula entirely! She's on 2% milk and, boy, does she love it. She's a milk junkie. We figured she'd be taken off the high-calorie formula, but we just thought she'd be moved down to regular. It's so much easier for us - preemie formula is hard to find. Aerin is also allowed cereal and blended foods. So far, we've given her organic turkey, which she kind of likes. She mostly wants to eat her flakes (what we call her cereal) and her milky. She likes to feed herself her cereal, which is great for me, too. I can put some on her tray and eat my supper while she eats the cereal. I forgot how much better food tastes when it's hot.

Aerin has said both "Momma," "Dad," and "Dog." She said "dog" after an incident where she shoved her jar of food off the table and it splashed all over our Shih Tzu, Marlowe (I had put the jar down for a second to wipe her face and her reach had improved more than I realized). She watched intently as I cleaned him off (you can't imagine the smell). As I threw out the paper towels, she looked up from Marlowe, looked me right in the eye and said, "dog." It was so adorable and exciting.

Life with Aerin is never dull. A few days ago, I was checking my email upstairs and heard the following:

Aerin: Na na na na na na.
Andrew: [anguished scream] My eye! She poked me in the eye.
Aerin: Na na na na na na.

All Checked Out

Everything checked out perfectly with both Aerin's health and development. I'll post more details later.

Nine Months Adjusted

Aerin was 9 months adjusted yesterday and to celebrate, her Aunt Julien gave her a new playmate. Sean Lee Kern was born yesterday, in the wee hours of the morning. She is huge - 7 pounds, 2 ounces! Julien and I have been friends since we both dated boys on the 4th floor of Carmen Hall, our freshman year of college. And now we both have little girls! Julien is going to be a fantastic mom - we can't wait to see pictures. Julien came to visit back when she was 5 months pregnant with Baby Sean and Aerin took to her instantly - she's got the touch.

Aerin has her developmental follow-up clinic appointment tomorrow. A specialist is going to assess her mental and physical development. Needless to say, we're keen to know the results. Aerin has her one-year-old checkup on Thursday, as well.

Aerin is growing like a weed. A pudgy, beautiful weed. Since we've been giving her table food, she's been chewing her baby food, too. It's hilarious to watch her chew on applesauce or green beans. She "talks" more and more each day, but she still won't say "Momma." I say "won't" because I'm sure she can, but she loves to torture me.

Aerin's First Birthday

As of 10:48 a.m., my baby girl was one year old. I feel happy and tired, like I've just finished a long hike uphill. I have such a sense of accomplishment and of pride in my daughter, who was quite literally at death's door just one year ago today.

Andrew and I had a quiet and joyful day with Aerin. We just spent time together and marvelled at the difference a year makes. We did go out for lunch and we ran into one of my nurses (I spent the month before Aerin was born in the perinatal special care unit)! Nurse Mary remembered us and was thrilled to see Aerin and hear that it was her birthday. She told her friends that Aerin is a true miracle birthday and just gushed over what a gorgeous and healthy baby she is today. We had cake with supper and I gave Aerin some frosting, which she quite enjoyed. I of course bought her a birthday tiara, but she refused to wear it. Although she'll wear headbands and hoods, Aerin refuses to wear hats (and tiaras) for some reason. Maybe next year.

It's been an emotional day for me. Even though Aerin and I almost didn't survive her birth, it was the happiest day of my life. I was fighting sleep during my C-Section - I had lost a lot of blood that week and my body was worn out from 7 days on The Mag, so the epidural really made me drowsy. The doctors had warned me that her odds of survival weren't good, so I was determined not to miss her birth if that was the only time I was going to get with her. My wonderful OB, Dr. Davis, had her out in record time and handed her over to the neonatologist, Dr. Sequira. She was kicking and punching for all she was worth and she even cried a little before they bagged her. It was the last time I would hear her voice for weeks. Dr. Davis was still closing me up when they had to take Aerin to the NICU and they stopped briefly so that I could see her. Even then, she was exquisite. As I laid eyes on her for the first time, I had a beautiful moment of clear and perfect faith - I knew that G-d was watching over her and that she would be okay. This was accompanied by an overwhelming rush of pure love and elation.

We would not have gotten through this year without our family and friends who supported us and the doctors and nurses who took such exceptional care of Aerin. Our little family is truly blessed.

Aerin's Birthday Eve

Well, the big day is almost here.

I keep forgetting to mention that I was asked the stupidest question ever when I was out with Aerin a few weeks ago. We were waiting on line in a store and a teenage girl was ahead of us. She was cooing over Aerin, which happens so much that I hardly pay attention anymore. Then the girl looked at me and asked, "Is that her real eye color?" I was so aghast that I just said yes.

Mmmmm, Aerin's First Cookie

Update

I have been trying to write about our experiences right before Aerin's birth, but it is proving to be more difficult than I thought. I am still working on it, but it might take a while.

In the meantime, Aerin is super. She is growing like a weed - her legs stick out over the seat of her high chair now. When we first got it, they didn't even come to the edge. She is extremely agile and graceful for such a little baby. She can get herself into a standing position, even if she has nothing to help her. She can somehow stand up in her Pack n' Play now. Her arms stretch over her head hanging onto the top of the "wall," but she doesn't seem to mind. She can stand for split seconds and she can walk the length of her crib while holding onto the rail.

She's making a lot of momma-like sounds, but nothing that I would assert is an actual word. I am pretty sure she said "elbow" the other day, but Andrew doesn't think so. She understands a great deal. She knows "Uppy?," "Do you want to go to Momma/Daddy?" and "Where's the doggy?" She also knows "ba-ba," "vitamins," "meds," and "dolly." Aerin loves books, which makes me so happy. She can turn pages (the right way and without ripping them), which amazes me. She does have a distressing love of ripping and crumpling paper - the other day she tore a page out of one of Andrew's work books.

Aerin has already gotten many wonderful birthday presents, especially from her grandparents. You can see in the picture that her Grandnana and Great-Gramma have gotten her just about every book on her Wish List. Her Aunties have sent her presents, which they really shouldn't have. We're going to let it slide this year, since she is a miracle baby after all, but we're going to have to talk to a lot of people about spoiling this child. Of course, Andrew and I have gotten her lots of presents ourselves, but that's different ;).

Countdown to One Year

Aerin's first birthday is less than two weeks away. I can hardly believe it. She does something new practically every day. She's "talking" so much more now. Andrew is convinced that she said "Mama," when he was watching her, but I have my doubts. Really, I just don't want to have missed her first word.

Aerin is so close to standing without support and walking. She's stood for about 2 seconds so far and she tries every day. She just loves being on the move and getting into things. She loves books and will quietly listen to one and a half. She can turn pages and likes to pound on the pictures that she likes.

Unfortunately, Aerin is still teething with no actual teeth in sight. Her favorite teethers are her spoons, which have rubber coatings. She can hold a spoon herself and just chomps away. I think she'll be feeding herself early. Her pincer grasp is coming along - I anticipate she'll be ready for finger foods next month.

We had a very nice visit with Aerin's Marx Grandparents, who doted on her and bought her lots of fun toys for her birthday. They agreed that even Aerin's pictures don't do her justice.

The cut in this picture was self-inflicted when Aerin pulled her hat off and threw it on the floor. She'll wear headbands, but not hats for some reason.

On a sad note, Andrew and I would like to offer our sincerest condolences to the Robertson family, who recently lost their daughter Kate. She will be very much missed and we pray that whomever took her is quickly brought to justice.

Aerin's Former Mobile

...and her success therein.

Aerin's Mobile

Posts will be forthcoming. In the meantime, please enjoy Aerin's attempt to destroy the mobile it took me months to find...

11 Months Old

Aerin is 11 months old today! I swear she picks up a new skill every single day. She can feed herself the bottle now - she finally figured out that she has to hold it up to get the milk and she now has the strength to do it. She still prefers to be fed, though. She really, really wants to stand on her own and walk. I'm both looking forward to and dreading that day. Aerin likes hanging out in the clean laundry hamper and she figured out how to get out of it, which was an unwelcome surprise for me (though she was very proud of herself). She's kind of picking up on the baby signs - she knows "uppy" and will also respond to "Do you want to go to Momma (or Daddy)?" by reaching out to the person asking. It's very adorable.

Aerin got to meet her Great-Uncle Tom, Great-Aunt Amy, and Cousins Hallie and Rachel this week. They unfortunately couldn't hold or touch her because of allergy issues, but it was a lovely visit all the same. I think I can officially declare that Aerin's stranger anxiety is gone, not that it was all that bad to begin with. She was very happy to be with her family and was all smiles for them.

I finally sent out birth announcements, which I've been wanting to do practically since I got pregnant. I've heard from people I haven't spoken to in a while, which is such a nice part of birth announcements. My OB from Roanoke, Dr. Martin, called. She took care of Aerin and me until we moved to back to Richmond and it was so nice to speak to her and tell her all about the baby she helped to survive. Aerin and I were so blessed to have the very best medical care from start to finish.

Progress

Aerin is quite the athlete. She can pull herself up in her crib, even though we've lowered it as far as it will go. She's very good at falling and what we call controlled landings, where she slowly lowers herself down. She doesn't even look at us when she falls anymore. Since we always smiled at us when she did look, I think she decided that falling isn't a big deal.

Aerin made her first conquest last weekend. I took her to a baby expo at the Richmond Raceway Complex. There were some areas where you couldn't take strollers (which struck me as odd, but I'm sure they had their reasons). Since I had Aerin in her new stroller, I had to stand at the entrances to the areas to get closer looks. One of these areas was being watched by a gentleman and his little boy, who couldn't have been more than 4 years old. To my surprise, he came right up to Aerin with an expression on his face that can only be described as enthralled. He went to touch her face, but his father and I both said no at the same time. He went for her hand, so I suggested he touch her feet. He grasped her little foot like it was a precious jewel and stared raptly at her for a good 5 minutes. I have never seen anything like it in my life. In my experience, little boys either aren't interested in babies or dislike them. The father was watching with a bewildered expression that I'm sure was similar to mine. He told me that the boy had never done anything like this ever before. I finally had to go and the boy would have followed us if his dad hadn't physically prevented him. Aerin was pretty unimpressed for her part. She smiled briefly when he took her foot, then went back to examining her surroundings and playing with her stroller toys. It seems she is unaware of her great and terrible powers. Poor Andrew. He's going to have a rough time of it as she grows up.

We finally got rid of the Behemoth, which is what we called our old travel system. We went for the Cadillac of travel systems with all the bells and whistles (hey, it was our first baby and a micropreemie). The stroller weighed approximately 2 tons and took up the entire trunk of both our cars. It was very pretty and comfortable for Aerin, but the second she outgrew the carrier/car seat, it was retired. We got a Peg Pérego Pliko Lite stroller and a Britax Decathalon convertible car seat. Those who know me will be shocked to learn that both are in gender-neutral patterns (the stroller is black and green and the car seat is grayish with multicolored stripes). We plan to use these for our next baby, so it just made sense.

More to Come

I'll be updating more in the next couple of days. Aerin is crawling in earnest and is pulling herself up now. She's had some relief from the teething - on our pediatrician's advice, we switched to Ibuprofen and it works much better than Tylenol for her.

Aerin Facts - July Edition

1. Aerin's Costco card works at Sam's Club.
2. The winner of a fight between Chuck Norris and Darth Vader would be Aerin.
3. Aerin perceives noumena.
4. On Aerin's first trip to Paris, the French President will meet her at the airport to surrender.
5. Aerin can unring a bell.

Clingy Teething

Aerin has had a rough couple of nights this week (though she slept through last night). The teething is in full swing and is challenging for us all. On my friend Anne's advice, I wet and froze one of her soft teethers and she actually took it for a little while. She seemed to get some relief, but she'll still only take it if she's in the mood. Aerin has taken to lifting up her arms when she wants to be picked up (which is any time I put her down). It's very adorable.

Aerin's Aunt Jenn is visiting and her Aunt Cara is in town, so I am very happy and busy lately. I'll write more about them later this week. Aerin has some mild stranger anxiety, which is surprising to me. So many different people have cared for her and held her in her life that I thought she'd be the one baby who never feared strangers. She gets over it fairly quickly, so it's not really a problem for us. The separation anxiety is also very much in evidence - Aerin is a Momma's Girl through and through. It's not as bad when she can't see me or when she's with someone she loves and trusts, like Grandnana. But when she's upset, only Momma can calm her down.

Sweet Potatos

Aerin tried sweet potatos for the first time today. She really liked them. She is spending more and more time in the Pack N' Play, which makes everything a lot easier for me.

Andrew, Aerin, and I want to send a big congratulations to Amanda and Chad on the birth of their first baby, Tyler Andrew! He's just precious and we're so happy for the entire family.

7 Months Adjusted

Aerin has had a fussy weekend, but we're hopeful that it's a phase that will soon pass. For some reason, she won't take teethers of any kind, so all we can do is give her Infant Tylenol and rub Little Teethers paste on her gums. Her sleep has been a little erratic, but she went down at her normal time last night and woke up at a reasonable hour, so I'm hopeful it was temporary.

Aerin is sitting totally without support. She's been close for a while, but it was just this weekend that she decided she didn't need to prop herself up.

Aerin's Grandnana was here this week and it was wonderful for all of us. Andrew and I got to go out a few times (we saw a movie in a theater!) and Aerin got to be adored by her grandmother. It's always such a blessing when my Big Momma visits and we're counting the minutes until she comes back.

Clarification

I just wanted to let everyone know that Aerin didn't actually pull herself up in her crib (yet). She did keep her balance - for a very long time, actually. She's been pulling herself up into a standing position when she's on my lap, so I wanted to see if she could balance herself without me holding her. As you can see, she can. She is very proud of herself, as well she should be.

Aerin's laugh is developing. It started out as an evil little cackle, but now she'll do a delightful chortle when she's really happy. She loves it when I blow raspberries on her neck. The only problem is that she tries to turn her head to look at me and I have to stop because I don't want my germy mouth touching her face.

It looks like Aerin's eyes are going to stay light. They're a very unusual shade of blue, which pictures don't do justice - it's almost aquamarine. I wonder if they'll turn green like her mother's and grandnana's. Aerin's Grandnana is coming tomorrow and I can't tell you how much I'm looking forward to it.

Standing!

Got It

Almost

4th of July

Smiley Aerin

Long Overdue Update

Aerin is doing wonderfully well. She went to the doctor for her 9-month/6-month check-up and he gave her a clean bill of health. Dr. Al-Mateen "couldn't be more pleased" with her progress. She's developmentally on target and physically fine. She's just below the 50 percentile in height and weight for a 6-month-old (still not on the chart for her chronological age). She's still on Pepcid twice a day for reflux and will probably continue to be for the next few months. She's still spitting up, but not nearly as much. Dr. Al-Mateen also feels that the lung scarring from Aerin's BPD will eventually correct itself, which is very good news.

While we got mostly good news at the check-up, we did get some not so good news. Aerin's hemangioma is continuing to grow in a way that the doctors are not pleased with. It seems fairly certain that it will not go away on its own. We’re taking Aerin to a pediatric dermatologist in a couple of months for evaluation. Nothing can be done until after the age of 2 years, but Dr. Al-Mateen wants it documented by specialists to make future treatment easier. We will likely go to Children's Hospital in Boston - their Vascular Anomalies Center is the best in the country.

Though she is not crawling in the true sense of the word, Aerin gets where she wants to go (naturally). She will get on her hands and knees and rock back and forth. Then she will launch herself forward in a bellyflop and get back up again. This moves her several inches forward and is very dramatic and hilarious. She can also roll to where she wants to be. She's almost figured out that she needs to move her hands and legs to crawl - she'll move a leg forward, reach out a hand, and decide to bellyflop instead. She loves to move and is very proud of herself. She'll just rock and laugh and I always crack up. Recently, she’s started pulling herself up into a sitting position. She still needs one arm to support her, but I'm impressed. Aerin never cries when she falls (she never gets hurt since we only let her crawl on the bed), even when she's startled. I make sure never to show that I'm worried or upset and I always smile when she looks up at me. It seems to have worked - she takes falls in stride and is very adventurous. She'll take a header off the bed if we didn't watch her.

Aerin is "talking" more and more. Her babbling now has consonant and vowel sounds. I think she said "Dad" yesterday, but Andrew doesn't think it counts as her first word. I think it could, because I heard her say it twice.

When she's not on the go, Aerin still insists on being held. She's up to 15 pounds, 8 ounces, so I'm getting good daily workouts. She still won't go in a bouncy chair or swing for very long, but she's doing okay in her new high chair. She's been eating solids for a few weeks now and is doing really well with them. She eats peaches, pears, green beans, and squash. Her favorite is pears. We give her one fruit to every two vegetables and we introduce a new food every week. Next on the list is peas, then carrots.

We have had a lot of visitors this spring and summer - Aunt Julien (who's expecting a little girl in September), Grandnana, Grandma & Grandpa, and Andrea & Joe. I'll be writing about their visits in the next couple of weeks. I'll also be writing about our very first trip with Aerin, which is also our last (it didn't go well).

We're expecting more visitors, including Jim, Amy, & Emily Anne, Aunt Cara, Uncle Daniel, Great-Aunt Amy, Great-Uncle Tom, Cousin Hallie, & Cousin Rachel, and all the grandparents. We're hoping that Aunt Jenn will be able to come down. She just finished a marathon in Alaska to benefit the Leukemia & Lymphoma Society and we're very proud of her.

More Aerin Facts - Geek Edition

1. Aerin made the Kessel Run in less than 12 parsecs.
2. A bottle of sparkling wine is not truly champagne unless it originated from that region of France, or Aerin smashes it over your head.
3. It is impossible to play Aerin to a draw at tic-tac-toe.
4. Aerin’s desired outcome has a probability of 2.
5. All your base are belong to Aerin.*

More Aerin Facts

1. When Aerin calls customer service, the operator presses 0 to speak with her.
2. Aerin can overwrite files on a CD-R disc.
3. Aerin spoils the endings of movies for the screenwriters.
4. For Aerin, the laws of thermodynamics are guidelines.
5. Aerin’s vote counts as an electoral vote.

Facts About Aerin

In the spirit of the Chuck Norris facts, we present this partial list of Aerin facts:

1. Aerin doesn’t need to dial 9 to get an outside line.
2. Aerin gets to arrive at the gate 90 minutes after departure for an international flight.
3. Aerin knows the last digit of pi.
4. Aerin sustains her own objections at trial.
5. It used to be that 4 out of 5 dentists agreed with Aerin. Now it’s 4 out of 4.

Happy Father's Day

My husband Andrew has already been through more in his 9+ months of fatherhood than most fathers go through in a lifetime. He has handled every crisis, setback, and heartache with amazing strength and good humor. Aerin and I are truly blessed to have him. Happy Father's Day, Andrew. We love you.

Posts Coming

Sorry I haven't updated in so long - we've been very busy travelling and having visitors and Aerin is a very high-maintenance baby. She's doing really well and is going to crawl any day now. Here's a picture from Aerin's very first tea party to tide you over:

Bon Voyage

Aerin is 5 months (adjusted) today and weighs 14 pounds even. She has discovered her feet and is so athletic that she is doing perfect heel stretches already. She is very into rattles and knows to bat and shake them to make noise. She can also drag objects to her. Aerin is a little chatterbox and always has something to say. Andrew and I both heard her say, "Hey, Momma!" and I heard her say, "Thanks." Getting her to say all that again is proving a challenge, but I'm confident we'll be hearing a lot more very soon.

Mother's Day was fantastic, btw. It was so different from last year, when we were in the middle of my very troubled pregnancy and wondering if we'd have cause to celebrate this year. Andrew and Aerin gave me a special mug that they had made and flowers and balloons and cards. We had a lovely lunch and Aerin fell asleep so that Andrew and I could eat at the same time. Oh, and Andrew bought me a new car, which I think is a pretty neat gift.

We're hitting the road early tomorrow morning and heading to Bethlehem. I'm excited and nervous - this will be a travel litmus test for us and I really hope Aerin does well.

Partial Update

Aerin is now 8 months old! I know I say this every month, but I can't believe it. Medically, she's doing great. We've all had colds these past couple of weeks. Aerin is now big enough for a decongestant and that really helped her. Our pediatrician told me that it would make her either hyper or make her sleepy. I was pretty nervous about giving it to her because she's on such a great sleep schedule, but, luckily for all of us, it makes her tired. It was just a head cold - I know because I listened to her chest every day. I was worried, but not to the degree I've been in the past. Aerin needs to get colds to strengthen her immune system and we're out of RSV season, so pneumonia isn't a threat at this point. We will have to go underground this coming winter, but it will be the last one, as preemies usually catch up to their peers by age 2.

Aerin is a gifted athlete and contortionist. Every night I put her to sleep at the foot of her crib. Every morning she wakes up either at the head or facing the opposite way or perpendicular to where I set her down. We had an incident where Andrew was changing her and I was preparing the bottle in the kitchen. I heard Andrew shout and I looked over at them. Aerin was on her tummy on the changing table and both she and Andrew had stunned expressions on their faces. Then they both turned to look at me with identical expressions of shocked bewilderment - it was hilarious. Apparently, Aerin had done some kind of backflip or somersault. Andrew still hasn't recovered.

Aerin is mellowing out somewhat. She still insists on being held most of the time, but she is going in her bouncy chairs and swings more and more. She loves when I sing to her and she absolutely loves peek-a-boo. I think she's going to like rollercoasters more than her mother because she loves to be "thrown" up in the air (it's more of a push - we don't let go). Her smile is truly the most glorious thing I have ever seen.

This weekend is a big milestone for us - our first out-of-town trip! We're headed to Bethlehem, PA to visit our dear friends Jim and Amy and their lovely daughter Emily Anne. Amy is hosting her annual tea and I've been looking forward to it for months. Our other good friends, Byran and Corina, will also be there with their twins Tristan and Aidan. This will be the first time Aerin has been around other young children (almost 2 and 3.5) and I'm very interested to see how everyone reacts.

Our First Mother's Day

Happy Mother's Day!

It's a really special day for someone who couldn't deserve it more. She fought for so long and sacrificed so much to give us Aerin. Everyone is proud of you, Kira, because you're a wonderful mother.

Aerin's Video Debut

A real post is coming soon, I promise.

In the meantime, to tide y'all over, here is a video of Aerin with Momma singing. Keep in mind that I am recording as I sing and I am getting over a cold.

Aerin & Uncle Daniel

New Friend for Aerin

The Marx Family would like to congratulate our friends Anne, Jeff, and big sister Emma on the birth of their baby girl Bridget Niamh. She couldn't ask for a kinder, more loving family to be born into and we couldn't be happier for all 4(!) family members.

WalkAmerica Tomorrow

Andrew, Aerin, and I will be participating in the March of Dimes WalkAmerica tomorrow. Thank you so much to the many people who sponsored us - a lot of money has been raised for the March of Dimes in Aerin's name since her birth. We hope that the money she has inspired people to donate is used to make sure that no other baby has to go through what she did.

Unfortunately, it looks like it might rain tomorrow. It's supposed to be in the 80's (hot and muggy - my least favorite kind of weather), so we have permission to take Aerin. We got a rain cover for her stroller, just in case. I'm very excited to meet the other family teams and their miracle babies.

7 Months Old

It's been a busy couple of weeks for us. Aerin turned 7 months old on the 12th (adjusted age 4 months as of the 18th). She also had her 6th-month baby checkup (she had it a month late because of her Synagis schedule) and her very last shot of Synagis! May is the end of RSV season and we can breathe a little easier. Aerin got a clean bill of health. She's 12 pounds, 12 ounces, which is the 50th percentile for 4-month-olds (her adjusted age). She's not even on the chart for 7-month-olds, which is to be expected. She's also in the 50th percentile for height. She's hitting every single 4-month developmental milestone and some 7-month ones, which is virtually unheardof for a 26-weeker. She can roll over, transfer objects from one hand to the other, babble, imitate sounds, bat at things, and has figured out that when she bats at her rattles, they make noise. She recognizes Andrew and me and responds to her name. I'm working on getting her to say, "Mama" in the next couple of months (she better not say "Daddy").

In other medical news, Aerin's hemangioma is going through a growth phase. They usually enter a growth phase between 6 to 8 months and then shrink until they disappear. However, some never disappear and require treatment. The standard treatments are steroids, laser surgery, and/or skin grafts. We wouldn't even think about treatment until she's at least 4 and only then if she asks for it. I would almost certainly rule out steroids, due to their side effects. The best option would be laser surgery - skin grafts are pretty rough. Of course, there may be a brand new, better treatment by the time she's ready. Her belly button is still herniated, but it seems to be resolving itself. Again, we wouldn't even consider treatment until she's at least 4 and asks about it herself. The only treatment for this is surgery.

We got some very good news - Aerin doesn't have to have an MRI for her tract (a tube of soft tissue in her back, near her tailbone). Our pediatricians reviewed the ultrasound again and consulted with a neurologist and they all agree that it is unnecessary. I'm very pleased that she won't have to be put under anesthesia. I had a feeling that she didn't need the MRI - I think you develop reliable instincts when you have a micropreemie.

Aerin has begun to display her Southern charm and smiles at everyone who smiles at her (which is everyone who sees her). People are just drawn to her - she has a very penetrating gaze and loves to look at people.

She's doing quite well in her crib. I think she likes it better than the bassinet. I got a clip-on soother that vibrates strongly and she loves it. She also loves her mobile. We got one that has soft, multi-colored ABC blocks that have slits for pictures on the bottoms and a mirror in the center block. Andrew made some geometric designs in black and white and I put those in. Aerin is fascinated by them and they are so good for her development. In a couple of months, we'll move from geometric shapes to black-and-white graphics of faces. They would be too stimulating now. We got mesh bumpers, which allow the baby to breathe clean air even if she presses her face against them. They're recommended for all infants under 1 year of age to help prevent SIDS.

We had an uneventful Passover. We can't take Aerin to a seder this year (although she can go to shul next month, finally), which is helpful in a way. For those of you who don't know, Aerin was a triplet pregnancy and we lost her siblings. We lost Baby C on the first night of Passover last year. I was in the beginning of my first trimester and C was always smaller than A and B, but it was frightening and sad and it was the beginning of all the terrible problems we had with the pregnancy. We're so very blessed to have Aerin here with us, but we do sometimes think of the other babies we never got to meet.

Bumbo Babysitter

Bye-Bye Bassinet

Tonight will be Aerin's last night in her bassinet. I thought she'd be in it for at least another 6 weeks, but she's past ready for a crib. She is very active in her sleep and moves herself to the top of the bassinet every night. And since she has learned to turn over, she's wiggled out of her sleep positioner every night, too. If she didn't have her monitor, I'd be out of my mind.

I have a love/hate relationship with the monitor. It gives me peace of mind, but it also goes off in the middle of the night and wakes us all up. When Aerin is in a very deep sleep, her heartrate drops below the set limit occasionally (this is very normal - all babies do this, we just can't tell because they're not hooked up to monitors). It comes right back up, but the alarm is so loud that even the 3 beeps wake us up.

Aerin's reflux is challenging for all of us. It's uncomfortable for her until she starts spitting up. She doesn't mind that at all. That's when it becomes frustrating for me. I have no clean clothes left and I've washed every cushion in our house more times than I can count (thank goodness for slipcovers), not to mention the blankets, baby clothes, mountain of bibs, and towels. I am starting to get serious back pain because Aerin will scream when I put her down. She's also starting to eschew binkies for her fingers, which bothers me. I can take binkies away at the appropriate time, but I can't take away her fingers and that's a hard habit to break. We have a doctor's appointment this week, so we'll see what they have to say.

April

WalkAmerica

On April 23rd, Andrew, Aerin, and I will be participating in the March of Dimes WalkAmerica, with the goal of raising $2,500.00. The March of Dimes is a wonderful organization dedicated to preventing premature birth, birth defects, and infant mortality. We truly believe that our daughter wouldn't be here today without the good work that they do. Please check out our Marx Family WalkAmerica page.

Recharged

I didn't realize how exhausted I was until I got the chance to recharge, thanks to Aerin's Grandma Rita. She watched Aerin while I did some necessary shopping and even got to have a pedicure. Of course I fell asleep in the middle of it, but it was awesome nonetheless. I also got to take pressure-free showers and take a little break from the intensive day-to-day work that I usually do. And it was so nice to see Aerin getting to know her grandmother. We cannot wait until her next visit.

Aerin is up to 12.5 pounds and my back and shoulders are really starting to feel it. She can have a string of very fussy days and then a string of fuss-free days. She has figured out how she rolled over and now tries to do it in her bassinet. She can't because I have her in a sleep positioner, but I'm worried that she'll knock the bassinet over trying to get onto her back. It looks like we're going to have to get a crib 2.5 months ahead of schedule. I'm surprisingly emotional about it - my tiny baby is big enough for a crib.

Aerin is beginning to imitate sounds. She and I have long "conversations" and she just loves it. She is also very smiley, although I haven't been able to capture any on camera. She loves to stare at people and has a very intent gaze.

What a Difference 3 Months Makes

So Aerin is about 6.5 months old now, chronologically, and 3.25 months old, adjusted. Obviously, her appearance reflects her adjusted age. It's not often that you can tell a lady she looks half her age and really mean it!

Another unsettling thought: Aerin's now been living (in the outside world) longer than she had been gestating.

Very Long Night

Aerin got off her schedule yesterday and we had a very long night. She went to sleep in the early evening and woke up around 2:00 a.m. This is my fault, as I have a very hard time waking her up to eat. This is a legacy from the NICU, where they drill it into you that sleep = growth = health. Also, Aerin hates being woken up. She won't just eat and then go back to sleep - if I wake her up, it's pretty much a guarantee that she'll be up for the next 4 hours. Unfortunately, she woke up during the time when I do the work that I can't do when she's awake and I was right in the middle of an involved project that I couldn't just leave. So after about 3.5 hours of fussing and pacing and rocking and singing and eating, Aerin went back to sleep and I finished my project.

I have to say that the fussiness can be frustrating. Aerin has a very loud voice (she's definitely going to be a singer) and no relieable preference for soothing techniques. We had a week-long period where all I had to do was sit in the rocker with her and she'd stop fussing and drift off to sleep. Now she'll only do that if she's in the right mood. I'm starting to get a little desperate here - we have 3 baby carriers (a Maya Wrap from my friend Jenna and a hip hugger and Baby Bjorn from my friend Amy), two swings, and a massaging bouncy chair. We can really only count on them for 20 minute periods when her mood is right. I don't want to give the impression that I mind holding her - I don't, I love it. I'm just a little tired from staying up all night cleaning (I'm a bit of a neat freak) and from carrying a 12-pound wiggling baby around all day and from the huge volume of laundry that comes with a refluxing baby.

Aerin has recently started imitating sounds and we have "conversations" where she'll imitate my tone of voice. It is the most amazing and precious thing in the world and Aerin just loves it - she smiles and laughs the entire time. Until she suddenly starts to scream. She holds onto her bottle during feedings and will hold her WubbaNub in her mouth. We're going to have to move her to a crib very soon - she's trying to turn over in her bassinet and there just isn't the room. She really is an athletic baby, if there is such a thing.

We're very excited to see Grandma Rita tomorrow.

Aerin Rolled Over!

I put her down for a nap in the Pack N Play. I put her on her stomach and she went right to sleep (we have special permission from our pediatrician and respiratory therapist because Aerin has an apnea monitor). I heard her crying and went in to her and she was on her back! It took me a few seconds to register what had happened and I started screaming and shouting, "Oh my gosh!" Poor Andrew heard me and raced downstairs - I scared the heck out of him. We put her back on her tummy to see if she would do it again, but she wasn't in the mood to perform for us.

I am shocked - this is a five-month developmental milestone!

Pictures to come.

Fuss, Fuss, Fuss

It has been a tiring week in the Marx household. Aerin now refuses to be put down almost the entire time she is awake. She will go in her swing, but no more than about 30 minutes per day. She only goes in her Maya Wrap for 20 minute clips. She screams like a banshee when you put her down, which I do for a total of 5 minutes each day (non-consecutive). Her napping has grown more erratic as well. I could usually count on a 3-hour nap during the day, but it as become a sleep-10-minutes, cry-30-seconds, be-patted-and-rocked-by-Momma-for-5-minutes, go-back-to-sleep-for-another-10-minutes cycle. This can go on and on. During the 10 sleep minutes, I try to get things done as fast as I can.

Aerin also spits up more than I thought humanly possible. I have no clean clothes left and I wash an astounding number of bibs every week. She doesn't mind spitting up at all - you don't hear a peep out of her when she does it. In fact, she does stealth spit-ups, where I'll be holding her and doing something and suddenly be covered in spit up. She's eating well and gaining weight, so Dr. Al-Mateen isn't worried and, surprisingly, neither am I. Babies who spit up virtually never get failure to thrive and Aerin is well within the normal weight for her adjusted age.

Aerin has reached the stage in her development where she is realizing that she and I are separate people. This is usually when stranger anxiety and separation anxiety start. I don't think Aerin will have any stranger anxiety - she loves to look at people and will let anyone hold her. I'm not so sure about the separation anxiety. She watches me closely if I'm in the room with her and will start to fuss if she can't see me for more than 5 minutes. Aerin's Grandma Rita is coming to visit this weekend and I plan to do some errands, so we'll see how she does.

3 Months Old (Adjusted)

It's been a very exciting week for us. As of Saturday, the 18th, Aerin is 3 months old adjusted (from her due date). She's hitting or surpassing all the developmental milestones, which is wonderful. We went to the pediatrician for Aerin's monthly Synagis shot and she also got her polio vaccine. We love everyone at our pediatrician's office so much that visits are something we really look forward to. Every single question we have is answered in-depth, no matter how minor it may be.

Aerin and I also went back to the NICU! I had a doctor's appointment and Andrew had class, so I took Aerin. There are medical offices in Henrico Doctors' Hospital and that is where most of our doctors are. I got permission from Dr. Al-Mateen and Nurse Tammy to take Aerin both to my appointment and to visit the NICU. We all agreed that it was best that we not visit the PCN or the Perinatal Special Care Unit. I do plan to visit those places when RSV season is over. Being in the NICU with Aerin was extremely surreal and very emotional for me. We couldn't go into the unit because they don't allow children under 3. We waited in the entry room while Aerin 's nurses came out. They had to come out one at a time - they have babies to look after. We got to see Chris, Natalie, and Michelle, all of whom took care of Aerin a lot. They were so thrilled to see her and they could not get over how big and gorgeous she is. Just as we were fixing to leave, Dr. Sequira came in with a 36-weeker. He just had to stop when he saw Aerin, though. Delighted doesn't begin to describe his reaction to her. Then she smiled at him and he was tickled to death. Dr. Sequira was at Aerin's birth, so it was especially special to see him.

NICU parents and personnel have such a different perspective on pregnancy and babies. Aerin's nurse, Michelle, is 21 weeks pregnant. As she was telling me, she added, "Only 3 more weeks to go." Twenty-four weeks is the "official" date for viability (the earliest point where a baby can live outside his mother's womb). It didn't strike me as odd until much later, but 24 weeks is a magic number for us and doesn't mean the same thing to non-NICU folk.

I also brought over some of Aerin's preemie clothes to donate. There just isn't money in the NICU budget for clothes (preemie clothing is much more expensive than regular baby clothing) and it is a huge micropreemie milestone to see your baby in clothes for the first time. I want other parents to be able to experience that.

Andrew tells me that Aerin has now been home for longer than she was in the hospital. She is gaining more control over her hands every day and will rub her eyes when she's sleepy. It's so adorable that you just want to pick her up and kiss her, but she really dislikes being disturbed as she's drifting off to sleep (just like her mother).

Best Buds

Happy Purim!

Today was Aerin's first Purim. She isn't ready to go to shul, but we did dress her up a little (pictures forthcoming).

Aerin is doing this new thing where she stuffs her fist in her mouth when she's hungry. She also makes hungry noises that are not unlike the Cookie Monster. It's very funny, but it's hard to pry her fist away so that I can give her the bottle. She is a confirmed music lover and always settles down when I put a CD on. Right now she's listening to the debut album of the Peasall Sisters, Home to You. Andrew and I love it, too. Some of Aerin's other favorites are the Beethoven Lives Upstairs series from Classic Kids. It is by far the best children's classical series - much better than another aggressively marketed series that shall remain nameless. Aerin seems to prefer Beethoven to Mozart and she really loves Bach. It's funny - those were her preferences when I was pregnant, too. We also got OyBaby2, which is every bit as good as the first one.

We had a mini-crisis here last night and today. It was an equipment failure - I stepped on one of Aerin's leads as I was standing up with her and it broke off. Of course it was after business hours and of course it was on the day we received a letter that our equipment contract had been switched from one company to another, so I didn't have the number of our new respiratory therapist. I stayed awake all night, watching Aerin to make sure she was breathing. I also kept her on her back, just in case I did end up nodding off. She hates sleeping on her back and we both had a miserable night. I got hold of our new company in the morning and they couldn't have been nicer. Andrew went down to their office and they gave us a new kit and 2 back-ups. I love the apnea monitor and I don't see myself parting with it until Aerin is at least 1.

Six Months Old!

Aerin is six months old today (chronological - from her birth date) . Even as I type this, I find it hard to comprehend. I went through her photo album and those first weeks seem almost like a dream. Almost, but not quite - I remember the sheer agony of not knowing if she would survive and not knowing if she would have major disabilites. I also remember the overwhelming love and joy I felt at her birth.

Aerin is doing better than anyone could have predicted. She's 12 pounds! As of her last doctor's visit, she's in the 58th percentile for weight. She's only in the 25 percentile for length, which is surprising because she has tall genes. Of course, her length now does not predict what her adult height will be. Looking at her, you would never guess that she was anything other than a normal, exceptionally adorable and smart, healthy baby. The lasting effects of her prematurity are her hemangioma, her reflux, and the tract of soft tissue in her back. She'll be having an MRI sometime between June and August. It cannot be done until she is between 6 and 9 month adjusted (chronological - from her due date) because she'll have to be sedated. It is very unlikely that there will be any need for surgery - it isn't affecting her neurological development at all.

I am very happy to report that Aerin sleeps through the night every night. My quality of life has vastly improved. She still won't go in her swing for very long, but we've started putting the toy tray on and she loves to look at it. She smiles all the time now and even laughs. She has 2 laughs - a chortle and a diabolical cackle. Both are hilarious and make me laugh every time.

Baby's Best Friend

Catching Up

So much has happened in the last week that I hardly know where to begin. Aerin turned 5 months old on February 12th (chronological - from her birth date) and 2 months old on February 18th (adjusted - from her due date). She is almost 11 pounds!

We went to see Dr. Al-Mateen for her 2-month-old check-up last Wednesday. He was thrilled with her progress and gave her a clean bill of health. Even more remarkable is that she is developing much closer to her chronological age than her adjusted age. It would be great if she was developing like a normal 2-month-old, but she's much closer to a normal 5-month-old! She tracks objects with her eyes, recognizes her caregiver (me), can hold her head up steadily, can bear weight on her legs, turns toward loud or new sounds, and can push her chest up with her arms when she's on her tummy. I think she's going to be an early crawler - she gets into crawling position and moves her arms and legs, but she just can't put the movements together yet. She'll push off if you put your hand on the soles of her feet. She makes new noises every day and it's so fun to hear. I swear that she said "Ma" last week when she looked at me. She definitely said "bah," which means, "I am going to spit up all over you and the sofa."

We've taken Aerin out on a few more outings and they've all gone well. We took her to the mall for the first time last week. Andrew had to get a haircut and a new shirt and it was a gorgeous day out. Aerin hates being put in her car seat/baby carrier, but she calms down once we get going. I only had to pick her up twice and she settled right down. It really is like being with a movie star. People stop to stare at her, even people with their own babies. Everyone gushed about how beautiful she is, from the salespeople at Hecht's to everyone at the salon to everyone at the Nordstrom MAC counter. Every single stylist at the salon came over to fuss over Aerin. She really liked it there and looked right at everyone who had come to gawk at her. It was really fun to go there with her - I've been going there for years and went there when I was pregnant. The MAC counter was packed - there were about a dozen people shopping and having their makeup done. They all practically swarmed me. I was carrying Aerin because we didn't want to bring the stroller downstairs and I just planned to take a minute. No one could stop gushing over Aerin. I've been going there for years and the MAC artists all know me and they know all about Aerin. They were so happy to see her that they actually stopped what they were doing to get a closer look at her, which no one seemed to mind. I finally had to get us out of there because I was afraid people would start trying to touch Aerin or asking to hold her. Aerin took it all in stride and seemed to enjoy looking at all the people.

Aerin had bloodwork done and it all came back normal. In fact, she no longer needs extra iron! That's one less syringe we have to worry about. She's still on Zantac, Reglan, and multivitamins. We're hoping she'll outgrow the need for Zantac and Reglan, but she's going to need the multivitamins until she's at least one year adjusted.

Aerin is still sleeping through the night and I have to say that I feel a lot better. Aerin can go from zero to sixty in about 10 seconds. It's truly astounding. One second, she'll be asleep or just hanging out, the next second she's screaming. Sometimes she's content to hang out in her swing, sometimes she insists on being held. She's ambivalent about her sling, too. Sometimes she screams the second I put it on, sometimes she'll stay in it for a couple of hours. She's also had a couple of "Momma Moments," where she wouldn't let Andrew hold her and didn't stop crying until I took her. I'm really hoping they were isolated incidences.

Aerin's birth announcements arrived and I am working on getting them out. It'll take a while because Aerin is in one of her "how dare you put me down" kind of moods. In fact, she's calling me right now.

Patience

A huge post is forthcoming, I promise. Things have been busy, but Aerin is doing great.

Valentine's Day

Days 150-151

Well, all streaks come to an end. Aerin didn't go to sleep until 3:30 a.m. last night and that was after I sang myself hoarse. She would do her trick where she starts to cry just as I'm tiptoeing out of her room.

Aerin's feedings are about the same. The changing table is a huge help - Aerin will eat on it even after she's been fussing. I can't for the life of me figure out why. Her reflux is pretty much the same, too. I went through 3 shirts on night - luckily baby spit up doesn't stain. Aerin has one gown that she spits up on every single time she wears it. I'm giving serious thought to retiring it from her wardrobe, but it's just so cute. Aerin's also been going in her swing for longer periods of time, which makes things much easier for me. Andrew and I have even gotten to eat supper at the same time for several days in a row.

8 Weeks Old