The Hemangioma Adventure

I am happy to report that Samantha is doing rather well! Her mood is great and the incision doesn't seem to be bothering her much. Which is great. It still looks painful but now she is just on Tylenol every few hours instead of the Tylenol with codine that they were giving her in the hospital. We are all still pretty exhausted. I took a 6 hour nap today and I still feel like I got hit by a bus. My poor husband got called into work overtime at 4am due to icing, but he was able to take a nap this afternoon when my MIL watched the baby. And Samantha took a 3 hour nap at my in-laws! I remember when I standing over Samantha's hospital crib right after the surgery rubbing her head and holding her hand and thinking how blessed we are to have a healthy little girl. Yes, the NICU was a pretty rough time for us, but thank God she was able to come home to us with a clean bill of health. It just got me thinking about all the parents who have terminally ill children who are in the hospital day in and day out. I cannot even imagine. So, even though the last few days were pretty stressful and rough, I need to count my blessings that she came through just fine and we are back home safe and sound.

I thought I would do a little history on Sam's hemangioma, since I have been getting a few questions about it. When she was in the NICU, right after birth there was a whitish spot on the base of her neck. At first, her doctor's thought she might have ashleaf (sp?) syndrome. But it turned out to be a hemangioma (which is an abnormal collection of blood vessels) as it got more red and bigger in size as the weeks passed. Hemangiomas can be anywhere on the body and range from teeny tiny to really really big. Thank goodness her was not in a spot where it would have affected her vision or anything like that, but many children get them on their faces near there eyes. Generally, if a hemangioma is not in dangerous place it does not need to be treated. As, most of the time they shrink on their own within two years or so. However, Sam's had grown so large that the doctor's didn't think it would heal very well. So we made the decision (not so lightly) to have it removed now as opposed to when she was say 4 or 5 and would know what was going on. Hemangiomas can also be treated with a certain blood pressure medicine, but the child has to be monitored closely. It can help to shrink the hemangioma. But we chose to just have it removed. She also has one in her liver that is being monitored, but isn't causing any issues. She also has one on her wrist and ankle and one above her little butt. But those one looks like a little red pen dot, you can barely see them and they haven't grown.

They say hemangiomas are more common is low birth weight babies, especially girls. However, boys can definitely get them too. I actually had a very small one on my back as a baby but it was no where near as big as Sam's and mine went away rather fast.

I have to say that I am so glad we went to Boston to have this done. We actually were not at the children's hospital but at Mass Eye & Ear which is attached to Mass General. They have a new pediatric wing and everyone there was SO nice. Our surgeon was the creme of the crop and all the nurses and staff were just amazing. They really made us feel like Sam's surgery was the only one going on that day. They even had a Child Life Specialist with me in the holding room before surgery. Her only task was to make sure I was okay and to play with the baby. I want her job! They would only let one of us in the op room with her as they were putting her to sleep. They warned me of what I would see and I was getting pretty anxious. I could feel the tears welling up behind my eyes for about an hour before we even got in there. They told me they would put a banana flavored mask on her to put her to sleep and they start the IV after she was out so she wouldn't feeling anything. Which I was grateful for. They told me that her eyes may roll back and her limbs might twitch and her breathing may be irregular at first. I was terrified but they really all helped me pull through. I held her hand and everyone in the room started singing the ABC's to her (that's her fave song at the moment)  as they put the mask on her...and then it happened, she stopped crying..her eyes rolled back...and my tears started falling all over the place! I lost it and then the nice Child Life Specialist quickly ushered me out. Might have been the toughest moment of my life, next to leaving Sam in the NICU. It was scary but I knew she was in the best hands.

My parents had driven out that day to be there to support us, which was so nice. Helped to take our minds off things for a bit. The surgery took almost 3 hours. And you better believe we booked it to recovery when we got the call she was done. I was frantically looking around in recovery when I heard a nurse ask if I was Samantha's mom. The nurse was standing over a bed, with what looked like a little pile of blankets. I couldn't even see her. But as I got closer, there was her sweet face. She looked like a littler angel cherub sleeping on her side. There was an oxygen mask laying near her mouth but not on her face. The nurse then showed me the incision I gasped out loud as it looked pretty awful. Much bigger and scarier than I expected. Her pediatrician had warned us that it would look pretty scary for awhile but that over time it would heal up nicely. But the incision went from about shoulder blade to shoulder blade. The surgeon said that the hemangioma was pretty deep and was starting to grow out to the sides as well as straight down. Luckily it had not reached muscle yet, but if we hadn't done the surgery it could have eventually reached muscle and cause other issues and discomfort, so we are glad we decided to just get it done. It was so cute because a few minutes later when Sam woke up she was so cute looking around all dazed and confused :) She snapped back pretty well. Although, did vomit after trying a bottle a little later on from the anesthesia. She has an IV in her foot all night when definitely made it hard to hold her or move around or even change her. And the poor little thing, they had a hard time finding a vein, so they had to do a lot of poking. She has little needle pricks on both hands, behind her knee, and then they finally got one on her foot :( Thank God she was asleep for that. In the NICU, she had blood taken from her head one time which almost made me pass out. THAT was awful.

We were discharged on Friday morning. They had to give her a neb treatment Friday morning because it sound like she had some junk in her lungs. Which they said could have been aggravated by the breathing tube. I'm hoping it was that and not a new illness coming on! But she seems to be better now. Poor little thing slept the whole way home (and so did Momma!) :) We have to drive back to Boston this Saturday for a follow up and then he wants to see her a month after that as well.

Here are a few pictures of the hemangioma before surgery and the incision after. I warn you the incision looks pretty bad but it already today looks much better than this picture!

Before pic- as you can see it's pretty big and had some bulk to it...

Afer pic-The vertical line in her skin is just because she's twisting to the side, but as you can see the horizontal incision looks pretty bad. Poor baby :(



We are so happy to put this behind us! I will post more pictures of her incision as it heals!


Thank you all again for your well wishes and prayers xo