Staples Out

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

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

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

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

Home Safe

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



Here are some pictures from the surgery:



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







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










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







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





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

The Incredible Symmetrical Baby

The surgery had barely started before it was over, and it went better than anyone had anticipated. No skin graft. No blood transfusion. She's likely to be discharged this weekend.

She spent about an hour in the Post Anesthesia Care Unit (PACU) before moving up to the PCU (i.e., "Step-down" nursery), where she's now resting and watching Peep on DVD. Her momma is holding her, which is why I have the honor of writing this post.

Surgery Tomorrow

As of right now, Aerin's surgery is on for tomorrow. She's first on the schedule, which is great. Andrew's blood is still good and made it to the hospital. We plan to spend a quiet day together.

It's raining, so that should put out any more hospital fires.

Our family has received much loving support, for which we are very grateful. Aerin will be at:

Main Hospital - 7th Floor
Virginia Commonwealth University Medical Center
1250 E. Marshall Street
Richmond, VA 23298
(804) 828-9602

Celtic Festival and Highland Games

We had fun!

Postponed

We just got the call. The surgery has been rescheduled for November 16th. That's 4 weeks from tomorrow. It's the earliest date all the surgeons can make it. So much for Thanksgiving.

New Development

There's been a surprising new development regarding Aerin's surgery.

There was a fire at the hospital today. No one was seriously injured and the backup power kicked on immediately. However, all non-emergency surgeries scheduled for today were cancelled. Dr. Haynes called me to let me know that we're basically on stand-by. Aerin's surgery could go on as scheduled or it could be postponed for two weeks. Hopefully, we'll know by tomorrow.

Loving Support

We've received many cards, emails, and phone calls from friends and family all over the country. It comforts us to know how much Aerin is loved. Many have asked about sending flowers or balloons to the hospital for Aerin. While we very much appreciate the sentiment, we would prefer for people to make a donation in Aerin's name to the March of Dimes.

We would also love for everyone who can to donate blood in honor of Aerin. She has already had 6 transfusions in her little life and she wouldn't be here without them. They've set aside 2 units of blood for her, in addition to the unit that Andrew donated to her. That's a very sobering amount. You really do give the gift of life when you donate blood. Andrew and I can never thank Aerin's donors enough.

We do understand if you really want to send something to Aerin. Here is where she'll be:

Main Hospital - 7th Floor
Virginia Commonwealth University Medical Center
1250 E. Marshall Street
Richmond, VA 23298
(804) 828-9602

Pre-Op Day:II

Pre-Op Day:I

Pre-Op went as well as could be expected.

Parking at MCV is a baffling ordeal, but we managed it. They've switched departments around, so we took a couple of detours before we found the right one. Aerin had a fantastic time waiting for our anesthesia appointment. The waiting room is more like a lobby and she ran around with glee. In typical Aerin fashion, she brought a smile to the faces of everyone who saw her. Even exhausted interns and residents couldn't resist her.

After the usual paperwork, we went into the clinic. It was just a brief physical and history, followed by blood work. I brought the medical history that I've written for Aerin and it was immensely helpful. I strongly encourage all parents to write one up for their children, even healthy ones. Aerin's is 2 pages long and includes prenatal history. It has saved me a lot of time and stress.

Having blood drawn was a bad scene. I sat in the chair and held Aerin on my lap. They can't draw blood for the hemangioma arm, so there's only 1 chance for a stick. Unfortunately, Aerin has inherited my weak, roll-y veins. The second the tech got the needle in, the vein rolled. She was a lovely and skilled lady and decided not to dig around for it or try again. Instead, she just took what she needed from Aerin's finger. Aerin has a high threshold of pain and didn't cry or scream when she was stuck. She hates to be held down, however, so she flipped out when she tried to move her arm and hand, which I was holding down. Andrew helped by feeding her Gerber Juice Treats, which we only allow in situations like this. She kept ripping the band aids off, so we had to stay in the room holding gauze on her finger until she stopped bleeding. The tech was so good that Aerin didn't bruise at all.

Afterwards, we headed to the 7th floor of the main hospital for our tour. A Child Life Program specialist, Ilona Scanlon, took us through the pediatric unit, PICU, and the step-down unit. They were all too familiar to us. They have many amenities to make things easier for parents - a playroom for each age group (toddlers, school age, and teen), a parent lounge with a washer and dryer and fridge, snack machines. Mrs. Scanlon answered all of our questions and spoke with us about what to expect and ways to prepare Aerin for both the surgery and the hospital stay. She gave us caps and masks to wear at home this week, so that Aerin gets used to them. We also happened to run into Dr. Haynes, which was a nice surprise.

The day was about what I expected it to be. It was hard. I just kept thinking how much I didn't want us to be there.

Pre-Op Day

We're heading to MCV for the Pre-Op Anesthesia Clinic (PAC) today and a tour of the surgical floor.

Summer Fun - Meeting of the Three Families

Here's a group picture from the Meeting of the Three Families. They get so much better as the kids get older. We got all 4 kids in this time.

Aerin's Slide

Surgery Date

So much has happened in the last few weeks. We had our semi-annual Meeting of the Three Families and it was wonderful. We had lots of fun and got a much better group picture. It was so good for Aerin to be around other children (and adults, too). Since then, she has been babbling constantly, which is excellent. She was very good about sharing her toys and her space, but the noise level was challenging for her.

The really big news is that Aerin's surgery is scheduled for October 19th. Dr. Haynes (along with his team) will be operating at the Medical College of Virginia. Together with Dr. Haynes, we have decided not to use interventional radiology, which would have involved the hemangioma being embolized. We all felt that the risks (infection, stroke, allergic reaction, more time under anesthesia and in the PICU) in a child as small as Aerin outweighed the benefits. Also, Dr. Haynes has a number of options to control the bleeding. He may be able to place a tourniquet around Aerin's shoulder, which would allow him to safely cut the feeder vessels under the hemangioma. He also may be able to do a "mini-embolization" if he is able to go under the hemangioma. He will be removing the entire hemangioma, regardless of whether it causes any level of deformity in Aerin's shoulder and arm. There is always the possibility of recurrence with hemangiomas and none of us wants to take any chances. Dr. Pozez will be closing, even if Aerin doesn't need a graft. She will make the shoulder and arm look as normal as possible. Aerin will be given prophylactic antibiotics before the surgery to prevent infection. She will also need to have a central line until she goes home. This is because she will need to have multiple blood tests and medications administered and a central line will be better than having her stuck constantly.

The reason we don't have a specific plan for the surgery is that Dr. Haynes won't know exactly what he's dealing with until he opens Aerin up. The MRA couldn't give all the information that was needed, so the surgery will be somewhat exploratory at first. Aerin will be transferred to the PICU (Pediatric Intensive Care Unit) after the surgery.

We don't know how long Aerin will be in the hospital. I will be staying with her the entire time she's there. They have fold-out chairs for parents to sleep in. Aerin's pre-op appointment is the week before surgery, on October 12th. We'll have our anesthesiology consult then, as well.

There is a strong possibility that Aeirn will need one or more blood transfusions during her surgery. Andrew will be tested in the next couple of weeks to see if he can do a directed donation (he and Aerin are both A+, I'm B-). Though they are the same blood type, Aerin has antibodies in her blood because I got so much Rhogam when I was pregnant with her. I'm not worried about this - they'll find a donor if Andrew isn't a good match. All of the blood from Aerin's 6 NICU transfusions came from the Virginia Blood Services and that's who we're using this time.

We've had many people offer to donate blood to Aerin. We can't thank y'all enough, but it has to be Andrew or an anonymous donor. VBS can't accept donations that aren't local and all directed donations require a doctor's prescription. If anyone would like to donate blood in honor of Aerin, that would mean so much to us.

We've had so many kind offers of help. We've pretty much got everything covered, but if folks would like to send good luck or get well cards to Aerin, that would be lovely. I plan to "decorate" her room at MCV the way I did at Henrico Doctors' and St. Mary's and I'm sure she'd like to see pretty cards. Please email me for our address.

Update Later

Sorry to keep posting pictures only, but we've been quite busy here. I'll try to post more this week or next. Until then, enjoy another picture.

Civil War Show

We had a great time. More later.

Results

It's been a busy summer.

Dr. Haynes examined the MRA and it was about what he thought. The hemangioma is very, very vascular and there are a lot of large and small abnormal vessels. There was a bit of good news - the vessels haven't penetrated any muscle.

Dr. Haynes is sending us for a consultation with Dr. David Darrow, director of the Center for Hemangiomas and Vascular Birthmarks at Eastern Virginia Medical School. He wants Dr. Darrow to examine Aerin and look at the MRA. He would like to discuss interventional radiology (image guidance) possibilities and other techniques with Dr. Darrow. Luckily, our appointment in in Dr. Darrow's Newport News office, so we don't have to go the the clinic in Norfolk (much less traffic). The appointment is a week from this Friday.

This evening I will be speaking to the local Kiwanis Club on behalf of the March of Dimes. They are hosting an event in October and have chosen our MoD chapter to be the beneficiary. Aerin will be coming, too - she's the best visual aid ever. A big part of being a MoD Mission Family is speaking directly to as many of the people in our community as possible, so it's a good thing I'm comfortable with public speaking.

Aerin's New York grandparents are coming to visit tomorrow. Grandma Rita will be doing the semi-annual Civil War Show, which will probably be the last public event Aerin will be able to attend before her surgery.

MRA

The day of the MRA, I woke up at 5:00 a.m. and got myself ready. I had gotten all of Aerin's things ready the night before. I packed sippy cups, a big jug of Pedialyte, Aerin's medical folder, Cheerios, and Aerin's favorite blanket (I knitted it for her when I was pregnant). I got Aerin up around 6:20 a.m. I changed around everything I usually do when I get her up so that she wouldn't expect to get a sippy - I changed and dressed her in her room, rather than in the playroom, and I hustled her right out to the car.

She was completely awake by the time we got on the road and did her usual looking out the window, though she did babble more than she usually does. We were about 10 minutes early because I didn't figure that parking would be so much easier at that time of day. I know St. Mary's quite well and we found the MRI dept. without any problems. We signed in and waited. Aerin was not happy to be awake and unfed, so I walked her around and recited her favorite Sandra Boynton stories (Andrew and I both have them committed to memory) until the nurse came for us. We were taken into an inner waiting room and this one had a television. I put on Sesame Street for Aerin and Elmo was on. Aerin has seen Elmo maybe 4-5 times before (we allow almost no t.v.) and she loves him. She cracked the nurse up by laughing at him (if only he would use pronouns). I went over Aerin's medical info with the nurse and met the anesthesiologist and radiologist. Each of them answered my questions patiently and thoroughly.

Aerin was under very light anesthesia - just enough to keep her asleep and pain-free. They would be able to wake her up almost instantly if there were any complications. There are 2 types of dye typically used and they chose to use the one that rarely causes complications.

I took Aerin back into the prep room. They had me lay her on a stretcher and they put the mask on her. She was out in seconds and I had to leave. This was the hardest part of the day. Aerin usually seems so big to us because we remember how tiny she was, but she looked so small and still. There is something very primal and counter-intuitive about leaving your unconscious child in the hands of strangers who are about to poke into her. Your reason goes away and you are filled with an urgent need to protect your baby. Every instinct was screaming at me to grab her and run. It's a feeling that was familiar to me from the NICU, so I was able to leave.

I went up to the waiting area where I was issued a pager. The pager goes off when they're ready for you to come to recovery. I got a triple espresso latte, which I forced myself to drink, and settled down to pray. As is Jewish tradition, I said Tehillim (Psalms), which I read from my awesome Classic ArtScroll Tehilim. Rabbi Case found me shortly before the pager went off and was so comforting.

It only took about 2 hours total before Aerin was done. Rabbi Case and I went to the recovery room, which was nicer than any I'd ever seen. It was actually 2 rooms - an inner one with stations (stretchers, monitoring equipment, etc.) and an outer one with big, rocking armchairs. A nurse came out carrying Aerin, who was asleep. She didn't even wake up when the nurse handed her to me. I tried to give her some Pedialyte, but she wouldn't take it and just wanted to cuddle against me and sleep. When she finally did open her eyes, she was mad. I think she would have screamed, but her voice was scratchy from being intubated. When I offered her the Pedialyte again, she grabbed the sippy and gulped it down. She threw up most of the first cup all over me (not from nausea, but because mucus collected in her lungs from being completely still and intubated and she had to clear it out). Luckily, she missed herself and the blanket and the nurses cleaned me up. The second cup stayed down. The sippy calmed Aerin right down. We only give her milk and water and no sweets except for fruit, so the Pedialyte was a delicious treat. I gave her Cheerios and she ate almost an entire (small) tupperware full. Rabbi Case said Tehillim in thanks and gave Aerin a bracha (blessing).

Aerin is a very special child. People are drawn to her in ways I've never seen. There was another patient in the recovery room - an elderly lady, who was with her blind husband. Elderly ladies always dote on Aerin, but I never expected that anyone recovering from surgery would take notice of anyone else. That sweet lady just couldn't take her eyes off Aerin and told her husband all about her. All of the nurses came to sit by us to look at Aerin.

When Aerin had drank and eaten, our nurse Binah took us to the MRI dept. to pick up the films. It turned out that they wouldn't be ready for 2 hours. The receptionist kindly assured me that she would personally walk them up to Dr. Haynes office when they were ready. We headed for home.

Aerin was completely recovered within a few hours. I got her right back on her schedule and she was her usually self when she woke up from her nap. The doctors and nurses are so good that she didn't have any bruising at the needle sites.

One down, one big one to go.

Home Safe

Aerin came through the MRA with no complications. She wasn't scared or in any pain, though she was very annoyed. She's napping right now and I'm going to join her. More later.

MRA Eve

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

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

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

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

MRA News

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

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

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

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

Stacking Cups

Diagnoses

We've had a very eventful couple of weeks.

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

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

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

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

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


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

Update

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

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

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

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

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

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

Surgery Update

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

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

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

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

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

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

Moving On

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

Happy Mother's Day

Here is some more video of Aerin.

More Aerin Video

Aerin Walking

Playground Fun

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

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

Update Coming

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

Booger Boy

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

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

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

Prayers

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

On the Go

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

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

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

Quick Update

Aerin is almost walking. She takes at least one step each day and has taken as many as 3 steps at once. She also has drawn 3 lines with a crayon on her new easel. She still won't use a sippy cup unless she's parched and it's the only thing around (and even then she'll only take a sip or two). She will, however, drink from a regular cup. She tends to bite down on the rim, so we only use plastic cups.

Her palatte is getting more sophisticated by the day - she loves calamata olives and barley with pepper (and other ingredients, but the pepper is the only one that babies don't usually like). Her favorite food is salad with vinagrette dressing.

The reason the updates have slowed down is that we just bought a new house! We close in mid-May, so there's lots to do.

Aerin has Magic Powers - Part 1

This is so long, that I've decided to split it into 2 parts. I'm working on the second part.

Aerin might well be the most successful lobbyist ever.

We arrived downtown at 9:00 a.m. on Wednesday morning. It took us 30 minutes to park and get to the General Assembly Building (GAB). Parking in Richmond is always a hassle, especially when the Legislature is in session. We ended up parking in the Children's Hospital parking lot, so I got to see where Aerin will be having her surgery. It was cold and windy, but Aerin was nice and warm. She was wearing tights and socks and boots along with her long-sleeve shirt and sweater vest. I had her shiny sleeveless coat over all that and I piled blankets on her. I also got her mittens on, which is always a challenge (she usually pulls the first one off while you're struggling to get the second one on). I was still afraid that she'd be cold, so I put the visor of the stroller up and draped my coat over it so that she was completely cocooned and out of the wind. She was perfectly warm when I unwrapped her inside the building.

The GAB was packed. The March of Dimes wasn't the only organization lobbying that day - there were many others. Here's a quick rundown of how lobbying in Virginia works: The legislature is in session for 30 days in odd-numbered years (60 days in even-numbered years). During that time, delegates and senators attend committee and subcommittee meetings, as well as attend the actual sessions where bills are voted on. When they are not in those meetings and sessions, they are in their offices, meeting with lobbyists and members of the public. Since this year's session was a short one, every lobby group with legislation pending was eager to get some time with the Assembly members.

The VA chapter of the March of Dimes has been lobbying for years. They reserved a conference room, which made things much more convenient (especially for me). I was able to leave my bag of blankets and jackets there, which lightened up the stroller considerably. We visited the Assembly members in groups. Aerin and I were paired with Jamie Hall, the community director of the Richmond WalkAmerica and Richmond Chef's Auction, and Pat Simmons, the state director. These two ladies do amazing work and it was an honor to lobby with them. Aerin took to both of them right away. She was in high cotton because there were tons of new people to look at and all of them smiled and waved and cooed at her. I was afraid that the crowds might be overwhelming for her (they were a little overwhelming for me at first), but that fear was quickly put to rest. Aerin smiled and waved at everyone. Two girl cadets (I have no idea what kind of cadets they were - you couldn't tell from their uniforms) left their group (squad? squadron?) so they could ride in the elevator with Aerin. They told me she was the cutest baby she'd ever seen. There was a group of schoolchildren (5th or 6th grade) on a field trip and they actually gathered around us to coo at Aerin. She loves kids, so she was as enamored of them as they were of her. There was also a group of teachers lobbying and a couple of them gathered the rest of their group to admire Aerin. She has this unnerving ability to draw crowds. We had a couple of times where I got nervous and had to excuse us, but Aerin was never fazed. She left a trail of sunshine in her wake and did a lot of good for her fellow preemies.

I was dressed in regular business attire, but Aerin was dressed in super-adorable lobby attire. She wore a pink corduroy skirt, a pink long-sleeved shirt, pink argyle sweater vest, pink tights, and pink suede cowgirl boots (under which she wore pink argyle socks). She had a matching pink argyle tam, which she kept on for about half of the visits. After she pulled it off, I put in her curlies. The cowgirl boots were an especially huge hit. We got in to see every single delegate on our list in what I was told was record time. Aerin smiled and waved at every single one of them! Even when she missed her nap! I was flabbergasted. I knew she was charming, but I had no idea that she could be that charming when it was so important. She even laid her head on my shoulder and smiled coyly at some of the delegates. And a couple of them were privileged to see her scrunchy face, taught to her by her father. It's hilarious and was tremendously well-received.

Most importantly, each of the eight delegates we visited agreed to vote for our bill! We got a good chunk of time with every single one of them, which I'm told is almost unheard of. Aerin was so delightful that one of them gave her a little stuffed dog. We did have an incident where Aerin's diaper started to leak right in the middle of my little speech. I kept on going, but here was my internal monologue, "Please, Lord, please don't let this delegate notice that I am covered in baby pee. Please stop this diaper leak, Lord, and get us out of here before he notices." Aerin somehow was relatively dry. A diaper change and new tights took care of her. The entire left side of my shirt was soaked. Thank goodness I was wearing black. I rinsed my shirt in the ladies room and dried it as best I could with the hand dryer.

While Aerin more than did her job of showing how important the MoD issues are, I was the one who did the actual speaking. As a preemie mom, I can speak from the heart about MoD issues. Our main goal was to get the FAMIS eligibility up to 200% (FAMIS provides affordable health care to children of eligible families). This means that a child is eligible for FAMIS if his family's income does not exceed 200% of the federal poverty level. The eligibility was previously at 150% and I'm excited and proud to report that it's now at 200%. As you can imagine, this will cover so many more children who desperately need health care. Many of these children are preemies (there is also a program for expectant mothers - FAMIS MOMS) who absolutely must have good health care after discharge.

In our next section, we will explore the smoking ban proposals that met with mixed results and the post-lobby MoD luncheon.

Worst Group Photo Ever

We had a great time on our trip. We're still recovering, so it might be a couple of days before my next post.

Standing Tall

The good news is that Aerin can now stand unsupported and unassisted! She's been doing it without noticing it for a few days. When she noticed, she started doing it deliberately. She is very proud of herself.

Aerin actually took 2 steps today. I'm not counting them as her first steps, though. She was standing near me and started to wobble, so she took the steps in the course of propelling herself forward. I caught her, of course.

The bad news is that Aerin has learned how to take off her diaper. We discovered this when we went to get her from her nap. It wasn't pretty. No more sleeping without pants.

I am working on the Lobby Day post, but I've been having weird log-in problems and it's a long post besides.

Aerin & Grandma

Aerin's Grandma Rita came down from New York to visit her. After some initial tears and pouting, Aerin had a wonderful time playing with her grandmother.

Aerin and I will be heading to the Virginia State Legislature tomorrow for the March of Dimes Lobby Day. I'll post a full report, plus pictures, on Thursday.

Hope y'all are keeping warm.

Bundled Up

We took Aerin out on a rare outing yesterday, just to remind her (and ourselved) that there's a world beyond our house. She was great and didn't even fuss on the car ride home. I put her in her door jumper before we left and let her crawl around her room so that she wouldn't be restless.

I'll try to write more later, but this is a busy week for us.

Playtime Progress

Aerin is very serious about her play. When she decides to put something somewhere, she will fulfill her mission at any cost. She's also very goal-oriented. Since she conquered the stacking rings, she's been working on her Haba train. She wants to be able to put the pegs into the holes and to put the blocks onto the pegs. So far, she can get the yellow peg in and put the blocks on about 1/3 of the time. They are the first toy she goes for during playtime. She's also very creative - she has figured out that if she puts things on the nursing stool (which is at an incline), they'll slide down. Pull-the-flap books are another favorite toy. She can lift the flaps herself and has such a good time. I think it's like peekaboo to her and that's still among her favorite games.

Teething is making Aerin very bite-y. She bit my left na-na yesterday and it was fantastically painful. She took me totally by surprise, too, so I cried out. This startled her into crying, to which I was somewhat less sympathetic than I usually am.

Aerin understands so much now. You can ask her if she's hungry, if she wants O's, if she wants Momma or Daddy, if she wants uppy, if she wants her baba, or if she wants a bite (Gerber apple wheels broken up into tiny pieces) and she'll let you know what she wants. She will also hand you whatever you ask for and give you five. She's also very good about not doing things that I tell her not to. I usually just say no, don't do that in a firm voice and shake my head and that's the end of it. Except she still won't keep her hat or socks on.

Sock Wars

Every night I put socks on Aerin because her feet get cold. Every morning I go into her room to find the socks on the floor. I'm considering taping them on.

Aerin continues to make feeding her a challenge. I did give her a couple of white raisins, which she loved. I can't give her too many, though, because they're not so good for baby digestion. We are making progress with the sippy cup. Today I put 2 ounces of cranapple juice and 6 ounces of water into one and Aerin took a few good sips.

In other micropreemie news, we were very pleased to hear that 16-year-old Hawaiian golfer Tadd Fujikawa made the PGA Tour event cut at the Sony Open on Friday. Like Aerin, he was born 3.5 months early, though he outweighed her by 3 ounces.

More Teeth

Aerin has had some cranky afternoons, which aren't much fun for anyone. She's finally getting more teeth and her mouth feels crummy. Her 2 front top teeth are coming in and she loves biting things in half with them.

Aerin can now identify my nose and mouth. She mostly does so by trying to jab her fingers into them, but she jabs at the correct feature. She loves when I ask her to give something to momma and then thank her. Her fine motor skills are fantastic - yesterday she put a very small wooden peg into its hole. I was shocked.

Happy Birthday, Daddy!

Today is Aerin's Daddy's birthday! She is so excited that she is having trouble napping (we're hearing lots of "talking" from her room). We're going out to celebrate, something that was out of the question last year.

Aerin has mastered the rings. She can get them on the stick every time and shows no sign of getting bored with them. She's also still into putting things places and has started handing me things. She really likes to be thanked - she laughs every time I say thank you to her.

We've pretty much abandoned the high chair. She is so much happier in her booster seat at the table. We don't even use the booster seat tray anymore. I think she feels more included sitting with us like a big girl. She keeps putting her foot up on the table, though. It's pretty funny, but I'm going to have to discourage it because it won't be funny when she's older. I also worry that she'll tip herself over when she's bigger.

I'm trying to get Aerin to eat more regular food in the hopes of getting some weight on her. She has eaten decent-sized portions of chicken the past few nights (cut into tiny pieces, of course). I didn't expect her to like the chicken when I offered it because I cooked it with pepper and cilantro, but she loved it. I think her palate is broader than a term baby because some of the medicines she takes with gusto are very strong-tasting (and smelling). Of course, Aerin being Aerin, she won't eat white potatos or bananas or rice or avocado, which would help her to gain weight.

Standing Alone

Yesterday morning Aerin stood without support for 5 seconds! I know because I held my breath and counted. I was very excited, but Aerin didn't even notice. She didn't even fall when she was done, she just reached her hand out for support.

Aerin loves to close her door when she plays in her room. I keep it open and gated and she just crawls over and swings it shut. Sometimes she doesn't shut it all the way and tries to open it so that she can try again. This never works because she sits in front of it and blocks it completely. It's so funny to watch.

We recently discovered that Aerin loved edamame (Japanese soybeans). I try to give her a large variety of foods so that she won't have a bland palate when she grows up. She is very game about trying new foods - she'll let you put anything in her mouth. However, if she doesn't like the taste, she'll pull it out of her mouth and throw it on the floor. She's not a spitter at all. She also has a highly-developed gag reflex and will make herself throw up if she decides she doesn't like something after she's swallowed it. I was thrilled that she liked the edamame - it's so good for her. She would have eaten an entire bowl of it, but too much can upset the tummy.

New Year's Day 07

Aerin ate 2.5 black-eyed peas tonight. She ate a half of one by itself and decided that she didn't like it, so I snuck 2 into her green beans. For those of you who don't know (aka Yankees), eating black-eyed peas on New Year's Day is a Southern tradition that ensures luck for the coming year.

Andrew taught Aerin to make the kissy noise and it's too adorable.