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.