Surgery Date

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

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

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

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

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

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

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

Update Later

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

Civil War Show

We had a great time. More later.

Results

It's been a busy summer.

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

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

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

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

MRA

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

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

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

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

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

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

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

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

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

One down, one big one to go.

Home Safe

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

MRA Eve

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

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

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

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

MRA News

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

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

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

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

Stacking Cups

Diagnoses

We've had a very eventful couple of weeks.

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

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

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

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

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


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

Update

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

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

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

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

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

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

Surgery Update

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

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

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

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

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

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

Moving On

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

Happy Mother's Day

Here is some more video of Aerin.

More Aerin Video

Aerin Walking

Playground Fun

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

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

Update Coming

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

Booger Boy

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

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

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

Prayers

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