Perspective

Today, we had our last appointment with Dr. Theos to assess the progress of C's hemangioma. It has reached a point where medication is no longer effective, and it will begin to go away on its own. So, after we wean her off of the medicine over the next two weeks, C will officially be finished with her treatment! We won't go back to see Dr. Theos again until this time NEXT YEAR. It's not totally gone yet, but the changes we've seen over the last year are drastic.

I remember noticing the tiny little mark for the first time as we dressed her to finally go home at five days old. Husband and I looked closely, thinking at first it was just a scratch from her fingernail, but then noticing it was a birthmark. No big deal. It was a tiny little birthmark.

But then, it got larger... and darker... and raised. So, at her two week appointment, I asked our pediatrician what it was. He told me, then wrote it down so I could remember it (and google it a million times). It was a hemangioma. At first, we were terrified. (Just google it and you'll see why). There was very little positive information available online, if any. I found site after site with horrifying photos and before and after surgery stories. Our little girl had already fought to be here and we weren't signing her up for surgery. We felt hopeless. Then, finally, we were given hope in the form of Dr. Theos at Children's. 

She was patient and kind and conservative with her treatment. Surgery was always the very last option after trying everything else, and we appreciated that. So we started a thrice daily regimen of a blood pressure medication, increasing the dose as she gained weight and adding in a strong steroid cream for a couple months. Suddenly, it started to go away. Like magic.

So now, nearly eleven months after we began treatment, her hemangioma is a small mark beneath her hair and we are on the brink of eliminating the 11:30 feeding. Wow. What a difference modern medicine has made in our little love's life.

Day 1 of treatment (5-11-11)

After 10 1/2 months treatment (3-23-12)

3-25-12

Vanishing Act

You know when you were finally old enough to realize that a magician wasn't actually magic? When you finally realized that his vanishing act was merely a trick. A false floor, a burst of smoke, a distraction. Well, C's hemangioma is performing a vanishing act of its own... no strings attached. No tricks. 


C had a follow up appointment with her dermatologist yesterday. Since we were denied by insurance for laser surgery, we have opted to stick with other treatments. The thought of putting our baby girl through surgery for something that is now strictly cosmetic was more than Husband and I could handle. 


We are still using propranalol (blood pressure medication) thrice daily and applying clobetasol (steroid cream) at night for two weeks on and one week off. Dr. Theos was pleased with how they have been working. C's hemangioma is obviously much smaller in diameter, less raised, and less red. Just the difference from two months ago is amazing:

8-10-11 : 10-12-11

We were also thrilled to hear that we are on the tail end of all of this. Infantile hemangioma's like C's typically begin to decrease in size after six months of age and almost never increase after the first year. It's comforting to know that while it may still be there, it's going away.


Nothing could have prepared me for what would happen in the first couple months of her life. Being told that "it will get bigger" did not prepare me for the dark red, raised bump on my child's forehead, nor did it bring me ease when I thought it couldn't possibly get worse. But, to know that the treatments are working, and that in a year, there may be no sign of it at all, is freeing. Modern medicine is a wonderful thing.

Day 1 of treatment : After 5 months treatment

Now that C weighs a little more (16 pounds, 4 ounces as of yesterday), we were able to increase her dosage of propranalol. The propranalol is precautionary, just in case the hemangioma is still trying to grow. After her first birthday, we will taper it off completely. We are also beginning to taper off of the clobetasol. Instead of two consecutive weeks on and one off, we will only apply it every other night during the two weeks, then every third night, etc, until we are finished completely. I can't believe that one day very soon our daughter will no longer be on a daily regimen of medications!


It's hard to believe that in a few years or even months, this birth mark will vanish. Really vanish. It will not be concealed by a myriad of accessories. It will actually be gone. Forgotten. And as our beautiful daughter glances in the mirror, she will not see a scar from an unnecessary surgery. She will just see the beautiful olive complexion her Daddy gave her.

A Very Happy Half Birthday!

6 months old. Has C really been here for half of a year already?! I'm baffled by this.

We spent her official half birthday lounging on the beautiful beaches of the gulf coast. Not bad at all. We then returned to a week of doctor's appointments. It was certainly a reality check.

Her first appointment was with her dermatologist to discuss the progress of her hemangioma. We found out we were turned down for laser treatment by our insurance company. Because C's hemangioma is strictly cosmetic, there was no reason for them to cover the procedure. Dr. Theos did tell me that treatments are relatively affordable even without insurance ($250/procedure with complete treatment taking 4-5 procedures). Still, I left a little disappointed. On a positive note, the clobetasol (steroid cream) is obviously working as the redness in the center is gone and the bump is beginning to somewhat flatten. We still only use it at night (2 weeks on, 1 week off) because it is so strong that it can thin her already delicate skin. We are also continuing the 0.8 mL dose of propranalol (blood pressure medication) every 8 hours. Our next appointment is October 12th and we will reevaluate the situation then. 

8-11-11 (left) and 9-11-11 (right)

A couple days later, we ventured to the pediatrician for the six month check up. Our big girl weighed in at 15 pounds (30th percentile) and measured 26.5" long (75th percentile). Long and lean like Mommy and Daddy (well, like Mommy and Daddy were). She is right on target developmentally and we got the official go ahead to start solids (even though we technically started a couple weeks prior). We also discussed the hemangioma and laser treatment. I was surprised to learn that C's pediatrician was against it. He was happy with the way it was progressing and was genuinely concerned about scarring from the procedure. I was certainly confused. Which doctor do I trust more?


Then came the dreaded vaccines. Poor baby. It really is so terrible to watch. She got four shots (two in each leg), one of which was a flu vaccine. The flu vaccine always makes me feel terrible the day I get it, so I assumed C would not fair too well. I was right. She seemed fine after we wiped the tears away and made our way home for a crying and car ride induced nap; but that afternoon was filled with unrelenting screaming and crying for what seemed like hours. We then marked another milestone that evening: the babysitter.


Husband had made reservations to celebrate my birthday. Had we realized her check up was that day, we would have picked another night to celebrate. But, the babysitter was booked, the reservation was made, and she seemed to be content enough by the time the sitter arrived. Even though I knew the sitter well and knew she was completely capable, the feeling of leaving her with someone other than close friends or family for the very first time was odd. There was an inexplicable sense of abandonment paired with guilt. I then reminded myself that we were allowed to do this. We were allowed a few hours of grown up time and she would be just fine.


And once I allowed myself to relax and enjoy the evening (with my cell phone in my lap just in case), it was wonderful. We had dinner at Bottega and then, realizing we had precious babysitter time to spare, drinks at a place closer to home. It was refreshing to reconnect with Husband and enjoy a couple glasses of wine interrupted only by the server asking if I would like more. It's so easy to become so consumed in parenthood that you forget about the relationship that existed before. But after a few hours, I missed C and was ready to kiss her sweet cheek.


So now, we are in the midst of six months and it is so busy and so much fun. C is very aware of everything now. She wants to touch things, hold things, grab things and will scoot, climb, and roll until she reached those things. She actually pays attention to the tv now (goodbye Grey's Anatomy reruns, hello Sesame Street), and is mesmerized by music. She sits up tall all by herself.

Watching Baby Einstein in Mommy and Daddy's bed

She is trying so very hard to cut those first teeth. They'll be here any day now. She laughs out loud. She "talks" all the time. Most of the time, she sounds like a pterodactyl screeching and sometimes she sounds like she is almost growling. It's so funny to hear her try out new sounds. She smiles constantly. She is sleeping through the night (occasionally) and is still taking three naps each day (although they are usually only 20-30 minute cat naps). She is eating her first round of purees (peas, sweet potatoes, carrots, pears, bananas) and we have made a couple batches of homemade food so far (peaches and avocado). She LOVES peas! 

Overall, we have a happy, healthy, busy six month old. I have a feeling it only gets better from here.

Trust

I place a lot of trust in C's doctors. Because even after all my research, I'll still never know all that they do. So I have to trust that the decisions they make are with my daughter's best interest in mind.

This is difficult sometimes.

Yesterday, C had another checkup with her pediatric dermatologist to track the progress of her hemangioma. As I had noticed, not much has changed lately. The propranalol seems to have stopped shrinking the hemangioma, but is at least stopping it from growing larger. So we discussed options. Options are scary when coming from a specialist in a children's hospital.


The first option is a topical cream to be used in addition to the propranalol. Clobetasol is a highly concentrated steroid cream that should ideally lessen the redness and reduce the protrusion. Dr. Theos prescribed a thin application at bed time each night, covered with a bandage. Possible side effects include itching, burning, swelling and redness (which seems a little ironic), thinning of the skin, and, if it comes into contact with the eye, glaucoma! Needless to say, Husband and I were a little apprehensive. We started it tonight and I find myself staring at C as if I can predict a side effect.


The second option is one I have been fearing since I began my hemangioma research. Laser treatment. As I continue to read more about it, I realize it is usually performed as an outpatient procedure and often results in the complete removal of the hemangioma, but I still do not completely understand the procedure. What I do know is that our insurance company has to deem the laser treatment necessary and not simply cosmetic in order to cover the cost. So, Dr. Theos took a picture of C's hemangioma and sent it to our insurance company, arguing that, if left untreated, her hemangioma could encroach on her left eye, thus impairing her vision. 


We are waiting to hear back from them and I find myself unsure of the answer for which I am hoping. Researching something as vast as a hemagioma is disheartening. While many are completely gone after treatment, there are just as many that leave scars and skin deformities The photos of these children is more than I can take. C's is relatively small and will most likely vanish without a trace after treatments and time, but the alternative is so scary sometimes.


Every mother wants the best for their child. You want them to be healthy and happy. To know that they are special, important, kind, smart. You want them to learn to embrace their differences and celebrate their strengths, but you hope they won't have to learn these lessons by personal experience, especially at such a young age. I worry that if it isn't gone by the time she starts preschool, kids will ask her what happened. They will point and stare and it will be at this moment that she realizes she is different. It will be in this moment that she suddenly feels different. And I worry that my words won't be enough to fix it.


The anxiety I feel in public is palpable. C is reaching an age where she won't wear her "signature headband" without tugging and pulling at it, exposing the deep red bump on her forehead. I cringe as the same person that oohed and aahed over C just minutes before, darts their eyes to the ground, embarrassed to have seen it. I tire of explaining it to complete strangers.


And while I hate, hate, HATE that my beautiful, happy child has to go through this, I hate even more that it bothers me so much. I hate that I care what other people say. I hate that I am constantly watching, constantly on headband patrol. I hate that while my child is happy and otherwise healthy, my focus is on this bump at least three times a day, with each dose of medicine. 


But still, among all of the hate, is gratitude. I am grateful that she only has one lesion and not ten. I am grateful that we have this superior level of healthcare available to us. I am grateful for new research and new treatment options. I am grateful that my sweet sweet girl has no idea what it is and probably won't for well over a year. I am grateful that my child is happy and healthy. And I am grateful to have family and friends who will listen to me when I need to vent, when I need to be angry and who love my child beyond measure.


I have so much for which to be grateful and I put my trust in C's doctors. I trust that everything will be okay. I trust because I can do nothing else.