Finally an update!

We've had another round of sickness at the Hubbard house over the last week and a half, so I'm way behind on posting. Poor Caroline has been sick with a fever, ear infection (her second) and horrible cold with lots of congestion and many sleepless nights. I ended up getting it too and only managed to work only one half day last week. Thankfully we both seem to be feeling much better this weekend. And just in time for a big snowfall it seems! They are calling for 3-7 inches for us this weekend, which here in NC might as well be a blizzard. Caroline has been on the propranolol for three weeks now and we are SO pleased with her progress. You can really tell a big difference now I think, especially if you compare pictures from day one to pictures from today. The home health nurse is coming once a week now, just to check her blood pressure. It has always been completely normal, if not on the high side at times (ironic). As for the blood sugar, the doctor decided that it is no longer a concern. I know that there are moms who follow this blog who have children on propranolol who became rather alarmed that Caroline's doctor was so concerned about the medication affecting her blood sugar. It's a long story, but basically Dr. Bellet (who is not Caroline's regular doctor but has been covering for Dr. Prose temporarily) consulted with a pediatric cardiologist at Duke who stated that they treat children with propranolol on two and three times the dose Caroline is on, and low blood sugar has NEVER been a concern or problematic side effect for those children. So thankfully we have been able to stop getting her up to eat and haven't had to check her blood sugar anymore, and she has been just fine. We are now giving her the target dose of the medication, which is 1 ml 3 x a day. We have seen NO side effects whatsoever. Such a different experience than the steroids! We are thrilled! Dr. Prose is back from his trip and will resume Caroline's care. We will be seeing him next week. I'm really excited to see what he thinks, since he hasn't seen Caroline since the day we started the treatment. Here are some pictures of our precious little one. Let us know what you think? Can you see the difference?

Day One

Day 22

Week one of propranolol

Caroline has been on the propranolol for one week and we are beginning to see some changes! I don't know if it will be very obvious from the pictures yet, but it is definitely getting smaller. We began seeing real change when we increased the dose to .75 ml, and after talking with Dr. Bellet (she is covering for Dr. Prose while he is out of the country until 2/27), that is where we will stay for now. Dr. Bellet also ordered home health nursing visits 3 times a week to take her blood pressure and monitor her blood sugar. It looks like we will be getting a glucometer to measure her blood sugar here at home if needed, too. Dr. Bellet is very concerned about the medication making her blood sugar drop, so we are having to wake Caroline at midnight every night to feed her. I'm hoping that a week or two of normal blood sugars in the morning will allow us to stop doing that. I don't want her to get used to a midnight snack after we've been sleeping through the night so well! All in all, she's doing great with the medication, and we are pleased with the results so far. Here are some pictures of the last week for comparison sake.

Day 1

Day 3

Day 6

The changes are subtle, but the hemangioma is shrinking. It is more obvious when seeing her face to face, but particularly over the bridge of her nose and at her nostril the swelling is down. We are hopeful that it continues to improve and that the medication will have no side effects!

Missing in Action

Caroline's favorite toy and dear friend, "bug", is missing. She and I ventured out last Saturday to a children's consignment store in town, and mommy made the mistake of letting her play with bug in the stroller while in the store. I'm pretty sure that bug went overboard without my noticing. I called the store to see if by chance someone turned her in, but she was not in their lost and found. The store clerk did say though, "I hope we didn't think it was ours and shrink wrap it!" Agh! After Caroline's appointment at the pediatrician this afternoon, Zack dropped me by the store to look. I scoured all the shelves ready to pay whatever ransom necessary to get bug back! But, she was no where to be found. Sniff, sniff. She really does have sentimental value. Caroline loved her and lit up whenever she saw her and played with her. I looked in Babies-R-Us for a replacement but they didn't have it either. I'm searching the internet. Rest in peace, bug. We'll miss you.

Here I am with my dear friend. If anyone sees her around, please tell my Mommy!

Another new medicine.....

We went back to Duke yesterday to see Dr. Prose. After some discussion, we came to the decision to begin the propranolol. This is the medication I mentioned in my earlier post that is used for blood pressure but has shown promising results in the treatment of hemangiomas. Caroline will be the first hemangioma patient at Duke treated with propranolol, so she will be making some history! We are very hopeful that this medicine will have positive results. I hate the thought of Caroline having to take MORE medicine (the poor girl has not known anything different in her short life), but Zack and I both agree that if this medication works to shrink the hemangioma, and we can possibly avoid surgery down the road, it is certainly the less invasive of the two. Caroline will take the propranolol 3 times a day, starting out with a very small dose and gradually stepping up the dose every few days until she reaches the targeted dose on day 12. She will need to have her blood pressure checked frequently and her blood sugar monitored. We will be doing that tomorrow at the pediatrician's office, and then will return to Duke again on Monday. How long she continues to take it will likely be based on the response of the hemangioma. I've spoken with several mothers whose children are taking it and have been following their stories. I have only heard positive things. It is still VERY new in the treatment of hemangiomas (still considered "experimental" by all accounts), but Zack and I felt comfortable that enough children have been on it for this purpose with no negative effects that we think it is safe to try. In fact, in my research I have discovered that the propranolol is actually a much safer drug in terms of the risk of long-term effects than the steroids she took for 5 months! Go figure! She had her first dose this morning and of course took it like a champ! I'm going to try to take pictures daily to really track her progress. Please hope and pray with us for great results!

Sick Baby

Caroline ended up coming down with a cold that quickly turned into an ear infection over the weekend. She's had several sleepless nights the last few days and has just felt pretty rotton, but she seems to be on the mend now. Last night she was finally able to sleep. She's on 10 days of amoxicillan for the ear infection. At least she's used to taking medicine and I don't have to fight her to get it down! This is her second cold and she's not even in daycare! I can't imagine what it would be like if she was. I guess she would just be sick all the time. Thank heaven for grandmothers! :-)

Update from Duke

We saw Dr. Prose today and at least for the moment, we will be in a state of "watchful waiting." He pulled up a pic he took of Caroline in October and compared it to her now, and it seems the hemangioma has not grown an incredible amount. It has changed some though, so we need to keep a close eye on it to make sure it does not grow any more. We will be going back in two weeks for Dr. Prose to take a look again. The good news is, steroids WILL NOT be in Caroline's future regardless. If the hemangioma seems to still be growing, she will be started on a new medication called propranolol. This is actually a blood pressure medication that has been around for a long time, but is new on the scene in terms of treating hemangiomas. If you are interested, here is a link to learn more about it: www.hon.ch/News/HSN/616440.html All in all I'm just relieved that we have options other than the steroids and that Caroline won't have to go through that again. I'm also doing lots of research myself to learn more about the propranolol and trying to talk to some other parents whose children are taking it. I am also going to consult via email with a vascular surgeon in New York who is well known for specializing in hemangiomas regarding the appropriate time for surgical removal/intervention. Dr. Prose did say today that he thinks that some sort of cosmetic or plastic surgery will be in Caroline's future at some point. Weighing all the options and knowing the right thing to do is very overwhelming at times. We want the best outcome possible for Caroline to minimize any differences in her appearance. Please continue to pray for us that we are led to the right information, the right doctors, and the right treatment for Caroline.

A funny conversation.....

First of all, I did hear back from Dr. Prose and we have an appointment for Caroline on Friday at 10am. I'll update about that when we return later that day. I know I've mentioned before that Caroline likes to "growl." Ever since she was about 3 months old, she has done this. It's her "happy noise" and her means of communication. When she's playing with a toy she likes, she growls. When she sees me peer over the crib to get her up in the morning or from a nap, she smiles and growls. When she saw the neighbor this afternoon, she greeted her with a smile and a growl. It is the primary sound she makes! So I took Caroline to her 6 month check-up with the pediatrician today, and our conversation went something like this: Dr. Burbridge: "Do you have any questions or concerns today?" Me: "Well, Caroline is not making a lot of babbling sounds yet, should she be?" Dr. Burbridge: "Well, she should at least be making SOME sounds. Does she make any sounds at all?" Me: "Yes, she growls." Dr. Burbridge: (Smiles and laughs) "She growls?" Me: "Yes, she makes a noise like this (I precede to "growl" at the doctor)" Dr. Burbridge: (Smiles and laughs again) "Really?" "Well, I wouldn't worry about it too much. She will probably grow out of it and catch up to making the consonant sounds. We will reassess it when you come back in three months." Years later I'll be telling Caroline how much I worried about her delay in speech development because of her "growling." I've really got to get that on videotape!