Labor Day Update

Happy Labor Day! Well it's hard to believe that summer is coming to an end and fall is fast on its heels. Much faster than I thought with the cooler weather we've been having lately. We got to enjoy a nice relaxing weekend with friends and family and I will post some pictures soon. Meanwhile, I wanted to give everyone an update on Grace.

She'll be 4 months tomorrow. My how time flies. I was talking with my friend Sandi who is due anyday (today's her due date) and she's now having contractions 20 minutes apart (hurry up Jaxon, we can't wait to meet you). Talking with her today, it seems like just yesterday I was anxiously awaiting Grace's arrival and beginning to wonder if each pain or movement I felt was the beginning of labor. While I enjoyed having her all to myself and being able to feel each and every movement, it was the best day of my life when they laid her on my chest and I was able to finally see her beautiful face! And now, here we are, 4 months later. Wow!

We went back to the dermatologist last Thursday and we'll be continuing our current treatments of the propranolol and ointment. Her doctor and I are pleased with the results of the propranolol as the hemangioma seems to continue to not look so "angry" and continues to lighten up some. The new ulcers I had talked about previously are now each about the size of a dime, and there are 3 of them, in addition to 2 others that look like they want to get started. Grace is still uncomfortable when being held at times and especially when her bandage is being changed or we're taking off / putting on clothes. She did have another laser treatment when we were there. So now she's had a total of 5 treatments. She was running a low grade fever as well, so we're keeping a close eye on her. We're not sure if the fever is from some infection in the ulcers or if its "teething" time. We continue to pray every day that she will find some relief soon. Thanks to everyone that has sent us encouraging emails / notes and sent up a prayer for us as well. We love you all!

Tummy Time

Hey you guys! I'm learning to like tummy time more and more now that I can pick up my head and look at some of my surroundings. But I only like it in short spurts. Although I have a ways to go, this is a good start!


But boy does this stuff wear me out...


Love to All! XOXO - Grace

Hemangioma Update

Last Thursday we went back to Duke for Grace's dermatologist appointment. She weighed in at 11lbs. 9oz. and her blood pressure was fine. We talked with the doctor and she was pleased with the way the oral medication seemed to be reacting to her hemangioma, as we can both tell a difference in the color and feel. It seems to be less red (and angry looking) as well as not as raised. She has now been at the target dosage of propranolol for 5 days.

We continued with laser and she lasered the 4 small ulcers that she has as well as one of the older ulcers, but overall those that she's had for such a long time now are looking much better. She has one in her armpit that had really bothering her and keeping her from using her arm like she use to. I was really concerned with this particular ulcer because it just didn't look/smell right. It was like fighting her to get her to lift her arm and that would just make her mad as fire because that spot was so tender and painful to her. They did a bacterial culture on it to send off, as they think it is infected. She has taken us off of our old topical ointment and put us on a new ointment that will help with infection. As of today, that particular ulcer seems to be much better. There is no odor and Grace is beginning to use the arm a little more now.

I found this post online about another baby with an ulcerated hemangioma. She photographed the ulcers at every stage so you can see what one that is ulcerated looks like. I'm not sure what type of treatment she was on though. Ulcerations in the hemangioma are caused when the birthmark grows rapidly, causing breakdown of the surface of the lesion. That's the main reason for the propranolol is to hopefully keep the hemangioma from growing anymore, stopping the growth of any more ulcers!

So, that's all for now! We go back to the dermatologist in 2 weeks.

Here's a few pictures of my Sleeping Beauty...

Grace & Haley

Here's just a few pictures taken a couple of weeks ago that I've been meaning to post.

Fun in the Sun

Well not really, we were in the car but check out these cool shades our Bulls Bay friend, Heidi, sent us along with a cool hat and some socks!

She actually didn't mind them being on her face either! :) (Sorry for the blurry picture, it was taken with my camera phone.)

Hemangioma update: We are still taking the propranolol. Tomorrow we will increase the dosage for the third time and only have one more increase until she's at her target dose. So far the only side effects I see from the medication is that her feet (& sometimes hands) get cold very easily. So I'm keeping socks on her as much as possible. We go back to Duke on Thursday so I'll have more of an update then. As far as being able to tell a difference in the birthmark after being on the medication, the hemangioma doesn't look as swollen to me overall. We're still battling the ulcers though. She has had many more that are creeping up so I'm interested to see what the doctor says about those Thursday!

On a fun note, Grace has begun to coo a lot in the past few days. It's actually like she's carrying on a conversation with you. Maybe I can video tape her and post it to the blog eventually. It's just so darn cute!

Love to all! XOXO

3 months!

Time sure does fly! Grace is 3 months old today!

Grace doesn't like tummy time too much. We're beginning to wonder if its because of her ulcers or if she just doesn't like it. So in addition to tummy time I'm giving her some time in her Bumbo chair to strengthen some of her neck muscles. She did fairly good in those two pictures but slowly begins to drop her head to a more comfortable position. Maybe by next month she'll be more comfortable. She doesn't get upset in the chair though, so that's a good thing!

I couldn't get her to smile in those first few pictures, unfortunately she isn't too fond of the camera in her face plus she was getting sleepy! But I did manage to get this one...

Hemangioma update: As you can see in the picture above she has a small hemangioma on her belly too. The doctors aren't concerned about this spot. If you look at it just right it looks like its in the shape of a heart. This one appeared when she was about 3 weeks old and has changed a lot since she was 1 month old (I compared a picture of it today), but hasn't grown recently. Scott and I have decided to start the propranolol to treat the one on her shoulder. We will begin tomorrow morning with our fingers crossed. I took a picture of her hemangioma today so we can compare it to other pictures once we've been on the medication to see if any progress is being made. Please say a prayer for Grace, that the side effects wont be too bad, and she will deal with the medication just fine. Oh, and say a prayer for my nerves too! Hugs to all! XOXO

Hemangioma Update

Yesterday we went back to Duke for another dermatologist appointment. Every other time we go the nurse weighs Grace and every time we go they check her blood pressure. Yesterday her weight was 10 lbs. 15 oz. (my baby is growing fast!) It's amazing the tiny little cuff they have hooked to the machine to check her blood pressure. The nurse says its hard to get an accurate blood pressure reading on infants so they check it 2-3 times. Grace does fairly well throughout the process, MUCH unlike her Daddy when he's getting his blood pressure taken. :)

Our days that we go to Duke is very tiring. I'm often given lots of information to digest at each appointment about what to expect, what other treatments may be needed in the future, etc. However I still tend to be encouraged that we have professionals there for support.

Out of the 3 ulcers that Grace has one has healed very nicely. Yay! We're still going to put the topical ointment on it for another few days and then we can stop using it on that particular spot. The other 2 ulcers don't seem to be healing as nicely. We went ahead and had her 3rd laser treatment on those ulcers yesterday. There are 2 new places that are beginning to ulcerate as well. I can deal with the hemangioma itself, but its so hard knowing that she's in pain from the ulcers. Whenever it bleeds I feel her pain. It's so heartbreaking to dress her wounds with her crying.

Due to the new ulcers, and the other 2 that don't seem to be healing, the doctor has now recommended that we give her oral medication in addition to the topical cream she's using. This medication is called propranolol. If we choose to use this medication she would start on a very small dosage 3 times a day and every 2 days the dosage increases until it reaches a target amount. Once they feel that she doesn't have to be on the medication any more she will gradually come off of the medicine.

Propranolol is an alternative to prednisone. Prednisone use carries the side effects of elevated blood sugars, and reduced resistance to infection. Propranolol has side effects that include hypotension and hypoglycemia, but these are short-lived and we wouldn't have to be worried about her catching something out in public since she wouldn't have a reduced resistance to infection. Propranolol is a medication that is a non-selective beta blocker mainly used in the treatment of high blood pressure. It is also the only drug proven effective for the cure of migranes in children. Propranolol has been on the market for around 50 years, but is just recently been used as treatment for hemangiomas.

Here's an article that I found intersting, that you can take a look at if your interested: http://content.nejm.org/cgi/content/full/358/24/2649 The images of change are amazing. It also gives you some background to how this drug began to be used to treat hemangiomas.

Although I really like the doctors & nurses at Duke, we're still skeptical about putting any sort of medication in Grace's system. We have the prescription but I haven't had it filled yet. I'm doing as much research as I can to educate myself as well as saying lots of prayers that we will make the right decision for Grace's treatment. In my research I have stumbled across other parent's blogs who have children with hemangiomas that are being treated with propranolol and their comments about the drug are positive. There are many forums I have read as well. It's wonderful to be able to communicate with other parents who are going through a similar process. I guess that's why I'm trying to add as much as I can about this part of Grace's life to her blog. Not only for our information and for us to remember, but maybe other parents that are debating the use of propranolol or just dealing with a hemangioma in general will stuble across this blog and know that there are others out there that have had to make some of the same decisions.

Please pray for the doctors, as Scott and I as we are faced with these decisions about what is best for Grace & the treatment of her hemangioma. We certainly want to do whatever is necessary to protect her development (physical, emotional, psycho-social). Scott and I struggle with the fact that she even has to be faced with this, but we are thankful that she is healthy and happy. We know that we could be dealing with much worse situations and we're so thankful that is not the case. She has such a precious and sweet little personality that shines through more and more everyday. We are indeed thankful and so very blessed.