Aerin Amelia: Our Miracle Baby

Demure

2008-05-21T10:17:00.000-04:00

Aerin on the Trampoline

2008-05-15T11:46:00.002-04:00

Happy Mother's Day!

2008-05-11T22:13:00.002-04:00

A New Friend for Aerin

2008-04-25T12:22:00.004-04:00

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

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

More Fun at My Gym

2008-04-25T11:36:00.003-04:00

Fun at My Gym

2008-04-22T20:42:00.003-04:00

Aerin & Friends

2008-04-15T21:36:00.004-04:00

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

Aerin is a Political Genius

2008-02-14T15:40:00.001-05:00

More later...

March of Dimes Luncheon

2008-02-12T22:25:00.003-05:00

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

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

Tomorrow is Lobby Day.

Busy Month

2008-02-04T12:39:00.000-05:00

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

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

New York Trip: Part 1

2008-01-23T18:57:00.000-05:00

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

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

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

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

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

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

New Video: Part 1

2008-01-10T18:13:00.000-05:00

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

New Video: Part 2

2008-01-10T18:06:00.000-05:00

New Video: Part 3

2008-01-10T18:00:00.000-05:00

Happy New Year!

2008-01-08T14:51:00.000-05:00

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

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

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

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

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

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

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

Staples Out

2007-11-27T19:14:00.000-05:00

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

2007-11-18T19:00:00.000-05:00

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

2007-11-16T13:38:00.000-05:00

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

2007-11-15T09:07:00.000-05:00

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

2007-10-29T12:06:00.000-04:00

We had fun!

Postponed

2007-10-18T12:32:00.000-04:00

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

2007-10-17T18:49:00.001-04:00

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

2007-10-16T20:45:00.000-04:00

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

2007-10-12T16:11:00.000-04:00

Pre-Op Day:I

2007-10-12T16:07:00.000-04:00

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

2007-10-12T08:40:00.000-04:00

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

2007-10-03T11:08:00.001-04:00

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

2007-10-02T17:42:00.000-04:00

Surgery Date

2007-09-24T11:47:00.000-04:00

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

2007-08-29T15:56:00.001-04:00

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

2007-08-20T10:33:00.000-04:00

We had a great time. More later.

Results

2007-08-15T14:00:00.000-04:00

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

2007-08-14T14:54:00.000-04:00

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

2007-08-09T13:31:00.000-04:00

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

2007-08-08T23:41:00.000-04:00

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

2007-08-03T11:52:00.000-04:00

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

2007-07-31T12:54:00.000-04:00

Diagnoses

2007-07-18T10:58:00.000-04:00

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

2007-07-01T20:28:00.000-04:00

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

2007-06-25T20:48:00.001-04:00

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

2007-05-21T11:04:00.001-04:00

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

2007-05-13T13:46:00.000-04:00

Here is some more video of Aerin.

Aerin Walking

2007-05-09T12:27:00.000-04:00

Playground Fun

2007-05-07T23:05:00.000-04:00

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

2007-05-04T13:30:00.000-04:00

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

2007-04-18T19:58:00.000-04:00

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

2007-04-16T16:13:00.000-04:00

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

On the Go

2007-04-15T20:45:00.000-04:00

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

2007-03-28T21:53:00.000-04:00

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

2007-03-13T19:08:00.000-04:00

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

2007-03-06T23:13:00.000-05:00

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

2007-02-18T22:15:00.000-05:00

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

2007-02-06T16:06:00.000-05:00

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

2007-01-31T07:40:00.001-05:00

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

2007-01-22T19:39:00.000-05:00

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

2007-01-15T21:25:00.000-05:00

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

2007-01-12T14:07:00.000-05:00

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!

2007-01-09T14:25:00.000-05:00

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

2007-01-03T20:55:00.000-05:00

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

2007-01-01T21:51:00.000-05:00

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.

Happy New Year!

2006-12-31T19:21:00.000-05:00

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

2006-12-30T20:56:00.000-05:00

Not a Fan

2006-12-24T12:26:00.000-05:00

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

2006-12-22T17:17:00.000-05:00

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

2006-12-13T19:21:00.000-05:00

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.

2006-12-09T20:03:00.000-05:00

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

2006-12-08T12:04:00.000-05:00

I'll explain tomorrow.

A Few of Aerin's Favorite Things

2006-12-05T21:46:00.000-05:00

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

2006-11-30T19:32:00.000-05:00

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

2006-11-20T15:10:00.000-05:00

Progress

2006-11-13T11:58:00.000-05:00

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

2006-11-10T13:17:00.000-05:00

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

2006-11-08T19:40:00.000-05:00

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

2006-11-05T18:55:00.000-05:00

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

2006-11-01T17:06:00.000-05:00

Short Break

2006-10-27T17:33:00.000-04:00

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.

2006-10-25T14:22:00.000-04:00

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

2006-10-23T20:22:00.000-04:00

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

2006-10-16T19:13:00.000-04:00

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

2006-10-15T23:40:00.000-04:00

2 Surgeons and Counting

2006-10-12T20:02:00.000-04:00

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

2006-10-12T11:30:00.000-04:00

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!

2006-10-08T12:04:00.000-04:00

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

2006-10-05T19:54:00.000-04:00

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

2006-10-03T11:27:00.000-04:00

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

2006-10-01T15:40:00.000-04:00

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

2006-10-01T15:27:00.000-04:00

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

2006-09-22T08:22:00.000-04:00

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

Nine Months Adjusted

2006-09-19T19:41:00.000-04:00

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

2006-09-12T20:27:00.000-04:00

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

2006-09-11T13:44:00.000-04:00

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

2006-09-08T12:17:00.000-04:00

Update

2006-09-08T11:56:00.000-04:00

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

2006-08-30T19:49:00.000-04:00

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

2006-08-25T09:07:00.000-04:00

...and her success therein.

Aerin's Mobile

2006-08-25T09:03:00.000-04:00

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

2006-08-12T20:24:00.000-04:00

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

2006-08-03T17:00:00.000-04:00

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

2006-07-27T20:24:00.000-04:00

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 Amelia: Our Miracle Baby

Demure

Aerin on the Trampoline

Happy Mother's Day!

A New Friend for Aerin

More Fun at My Gym

Fun at My Gym

Aerin & Friends

Aerin is a Political Genius

March of Dimes Luncheon

Busy Month

New York Trip: Part 1

New Video: Part 1

New Video: Part 2

New Video: Part 3

Happy New Year!

Staples Out

Home Safe

The Incredible Symmetrical Baby

Surgery Tomorrow

Celtic Festival and Highland Games

Postponed

New Development

Loving Support

Pre-Op Day:II

Pre-Op Day:I

Pre-Op Day

Summer Fun - Meeting of the Three Families

Aerin's Slide

Surgery Date

Update Later

Civil War Show

Results

MRA

Home Safe

MRA Eve

MRA News

Stacking Cups

Diagnoses

Update

Surgery Update

Moving On

Happy Mother's Day

More Aerin Video

Aerin Walking

Playground Fun

Update Coming

Booger Boy

Prayers

On the Go

Quick Update

Aerin has Magic Powers - Part 1

Worst Group Photo Ever

Standing Tall

Aerin & Grandma

Bundled Up

Playtime Progress

Sock Wars

More Teeth

Happy Birthday, Daddy!

Standing Alone

New Year's Day 07

Happy New Year!

Having Fun

Not a Fan

Happy Holidays

WalkAmerica

Rusty Teeth. Literally.

Rusty Teeth

A Few of Aerin's Favorite Things

Four Generations

Aerin and Daddy

Progress

Prematurity Awareness Month

Update

Anniversary

Happy Halloween

Short Break

MRA Appointment. Finally.

Short Update