The Incredible Symmetrical Baby

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

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

Surgery Tomorrow

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

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

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

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

Celtic Festival and Highland Games

We had fun!

Postponed

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

New Development

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

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

Loving Support

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

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

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

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

Pre-Op Day:II

Pre-Op Day:I

Pre-Op went as well as could be expected.

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

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

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

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

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

Pre-Op Day

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

Summer Fun - Meeting of the Three Families

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

Aerin's Slide

Surgery Date

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

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

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

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

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

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

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

Update Later

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

Civil War Show

We had a great time. More later.

Results

It's been a busy summer.

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

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

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

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

MRA

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

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

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

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

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

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

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

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

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

One down, one big one to go.

Home Safe

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

MRA Eve

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

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

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

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

MRA News

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

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

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

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

Stacking Cups