Saturday, January 26, 2013

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





18 comments:

Good Timing said...

So glad to read this post and to hear all about it! Sam was such a trooper and so were you, Sarah! Good job team! Her incision does look pretty scary....I hope it heals up very quickly. Good thing kids are so resilient huh? More than we are! :) Take care and rest up this weekend. xoxo

Amber said...

Thanks for sharing what must have been a terribly scary ordeal. That before looked painful and I can imagine that would cause some problems with the size it was. Glad it's over!!!

Lauren said...

Thanks for sharing the whole story, I didn't know you had your family out there for support, that's so nice they were able to come. So happy it's over though, hope Sam continues to heal up well and that you can both get some sleep and back to a normal schedule soon. <3

Samantha said...

I am so glad that she's okay!

Liz said...

So happy to hear everything went well & that Sam is feeling good. That before picture is just awful! How heartbreaking for Sam to have to have that on her neck. I am sure when her incision is all healed she will feel so awesome. Little ones are so strong so she will heal up wonderfully I am sure. Rest up when you can!

kkasun said...

I'm so glad she's doing better! And I bet you feel more confident in your decision to have had the surgery now that you know it was moving towards the muscle. I hope she just continues to get better and better! Thank you for sharing I've always been worried about what would happen if Avery's didn't go away. It's good to know that this option isn't so awful.

Emily said...

I'm so glad you finally have this behind you! I can't imams how scary it was to have to go into pre-op and see that, but you were one strong mama!

I don't know if I ever told you, but Grace has a big hemamgioma on her butt. When one of the doctors was talking to us about it he said "Don't worry, her husband will never know she had this" I had to shut him up right there. Ain't nobody looking at her booty but me! :)

Marianne said...

So glad it's over!!

RMCarter said...

I was praying for her all day on Thursday. So gla she is doing well! :)

Rebecca said...

It looks so much better already.

justagirl-Krista said...

Wow, poor baby! I am sure you were so scared. Glad she is doing well!

Erica said...

so glad to hear all went well. Hoping for a speeding incision recovery and lots of rest and cuddles!!

Miss Mac said...

Glad your little one is now on the mend and this is behind you! Our little one has the bright red kind of course it's right on his forehead but it stopped growing at about 6 months and now we're just hoping this year is the shrinking phrase. We won't go the surgery route-yet- because it's not near his eye and doesn't cause any problems but we might have to if for some reason it started growing again or didn't recede. All about perspective though- these will go away so we consider ourselves lucky-it could be much worse! So hard to see our babies in the hospital, I know she's getting lots of well deserved TLC!

Lindsey said...

I'm so glad she came through everything so well, I can't even imagine being in your shoes, I would have lost it! You're a great mom and Sam is lucky to have you!

Stephanie said...

I'm so glad the surgery went well!! I bet by now her incision looks a hundred times better, and will only keep improving from here on out. Your a tough mama for making that call, but it sounds like it was the best decision for everyone.

Mrs. Pancakes said...

Isn't it awesome when you find the hospital that meets your family's need? So glad little girl is doing awesome! Such a strong little one:-)

Faith said...

I am so, so happy that all went well and she is recovering so well! I can't imagine how scary it must be to have your child away from you, in surgery, for THREE hours ! Only another mom could understand that agony! Thank you for sharing and I am SO glad she is doing so well now!

carson anderson said...

Hi Sarah! I came across your blog today- I googled "Hemangioma blogs", and was very touched to read yours. I am 35 years old and just completed my second procedure to remove my own Hemangioma. Mine, as an infant and young child, looked to be the size of your precious little Samantha's. It is(was) on the left side of my neck. I was born premature (and have a twin sister) and as my parents decribe, the Hemangioma began to develop days after my birth and became blood filled, large and raised. I have photographs that are quite difficult to look at- even now! As I grew older, the redness and raised skin was gone, however, I had a circular mark that would never go away and looked liked a scar from a burn. Although I cannot say it disturbed my life in any way (I still had dates, got married and a great job etc... and don't recall anyone making fun of me!), I would always encourage ANYONE with a child with a Hemangioma to take advantage of the medical procedures that can be done today! It was not attractive on me and I was always wondering what people thought it was! I think that it was a great decision (I am sure that had to be difficult!!!!) to remove Samantha's, and I hope she is all healed up! Gosh, it's a great thing- she will never remembering having it! This day in age, we never want our children to face the nastiness of bullying etc...! Best of luck to your and your family and for sharing in your blog!
Sarah A
Powell,OH
jersare@yahoo.com