Wednesday, August 29, 2007
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.
Monday, August 20, 2007
Wednesday, August 15, 2007
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.
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.
Tuesday, August 14, 2007
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.
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.
Thursday, August 09, 2007
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.
Wednesday, August 08, 2007
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.
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.
Friday, August 03, 2007
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.
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