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. 

Measure by Measure

Operation Goodbye Hemangioma

Day 69

After voicing my frustration with C's treatment, I decided that my eyes can no longer be trusted in determining whether or not the propranalol is working. So, today, I've started measuring the hemangioma and will do so each week to see how she is progressing. I am a list maker, a planner, the annoying mom who brings a notebook and photos of progression to each doctor's appointment. I need something concrete. I need something to prove my eyes wrong and make me feel better about purposely lowering my baby's blood pressure.

So, today, on day 69 of treatment (now at 0.8 mL every 8 hours), the hemangioma is measuring 3 cm long, 1.5 cm wide, and 0.8 cm protrusion. 

Day 69 of treatment

And, again, to make myself feel better, a side by side comparison from day 1:

Day 1 : Day 69

Side note: look how expressive C has become in just a couple months!

I know I can see a difference from Day 1, which is always positive. And the hemangioma is definitely interfering less with her eyebrow, but I'm not sure if it is simply from her growth and stretching of skin or from the actual shrinking of the hemangioma. We will go back to see Dr. Theos in 9 days and will hopefully be moving forward. Until then, I will diligently watch, measure, and take notes day by day, measure by measure.

Patience for the Patient

Operation Goodbye Hemangioma: Day 63

Patience is a virtue, a fruit of the spirit, etc. Whatever you choose to call it, it often is a great test, one that we are certainly straining to pass and one that C continues to pass with flying colors. 

Today is day 63 of C's treatment of propranalol for her hemangioma and I am finding it difficult to see much of a change. At her last appointment (which was a couple weeks ago), the doctors basically told me the same thing as before: that it hasn't increased in size, which is good, and that the graying in the center means the medicine is working. While that is seemingly good news, it is the same good news we received over a month ago. To add to our less than exciting day, it took them no less that ten times to get a read of her blood pressure. Apparently, they don't make cuffs that are the right size for C since she has outgrown the infant cuff and is too small for the child size. By the end of the appointment, C was exhausted to tears (and so was Mommy).

On a positive note, we were able to increase her dosage to 0.6 mL for two weeks and then increased to 0.8 mL yesterday with no side effects. The last time we tried the 0.8 mL dose, she was too small and the drastic drop in blood pressure was more than her tiny body could handle. Hopefully, this increased dosage will also mean an increase in results. I am optimistic.

One of the residents (who happened to be a college classmate of mine - small world) mentioned that there is a topical treatment that may reduce the redness. Dr. Theos wants to make sure that C is doing well on the 0.8 mL dosage before adding any other treatment, but may talk to us about that addition at our next appointment at the end of this month. I am willing to try anything that is non-invasive, non-surgical. The thought of any surgery on my tiny little girl makes me nauseated.

So, we will wait. We will wait until our next appointment to see how things have progressed. We will wait to add additional treatments to the mix. We will wait until this bump shrinks to nothing. We will wait. I'm working on this patience thing...

Waiting patiently with my perfect little patient...

World of Wonder

Operation Goodbye Hemangioma

Day 41

We've seen a lot of changes in 41 days. 

C has learned to hold her head up, to grasp toys, and, just this morning, to roll over. She is teething, a constant stream of drool flowing from her mouth and a tiny fist trying desperately to provide some relief. She no longer wants to be on her back, but instead wants to sit upright any way that she can, and in true C fashion, will let you know how she feels!

Still the bright and cheery morning person, she squeals and "talks" constantly, recently adding consonant sounds to her babbling. She is wearing size 3 month clothing and has almost grown out of her footed pajamas with those long legs of hers. She smiles all the time and is wide eyed most of the day, taking in the world around her.

We've introduced Baby Einstein videos as she can finally watch them without falling asleep. She helps me turn the pages (well....sort of...) when we read books, exploring new sensations with her fingers. She would sleep straight through the night if I didn't have to wake her at 11:30 for a dose of medicine. At nearly four months old, she is growing up so very fast.

Among all these changes, we've watched the hemangioma shrink day by day. The dose of propranalol is still 0.4 mL three times a day, but will most likely increase after her appointment next week. The changes have been slow, but visible, and there isn't a day where we regret going through with this treatment:

Day 1: Day 39 profile: Day 41

The progress has definitely slowed, but we can still see that the bump is much smoother and smaller now and the coloring overall is beginning to gray, which Dr. Theos told us was the first sign of the medication working. There seems to be less pressure on her left eye and eyebrow when she smiles and this will hopefully continue to get better over time. Hopefully, C's weight gain will allow us to increase her dosage over the next couple weeks. Once the dose is 0.8 mL three times a day, the changes should be much faster. Regardless, we are so happy to watch this treatment work before our eyes and are so very grateful for such a great doctor so close to home.

We will know more after our appointment next week. Until then, we will continue to watch her grow and change before our eyes and love every single minute of it.

Happy Girl

Operation Goodbye Hemangioma: Day 15

13 weeks old today and already stealing the show. This morning, we made another trip to Children's to see Dr. Theos and evaluate how well the propranalol is working. My little show stopper was all smiles in the waiting room, in the second waiting room, and while waiting in the exam room (there is A LOT of waiting involved in these visits). In the past few weeks, C has become so expressive and something about all the bright lights at the doctor's office just makes her day (and mine)!

Waiting happily for Dr. Theos

In just 15 days of treatment, her hemangioma has changed drastically. The entire area has become soft to the touch and much less raised. The red area has become slightly gray, which Dr. Theos said is a very good sign of the medication working. I'm simply amazed that in only 15 days, we have seen such a difference and I have to brag, once again, on the staff there. Without looking at her chart, the nurse knows her name and my previous concerns from each blood pressure check. She knows that a paci is the only thing that makes C still enough for the blood pressure check and that she is happiest flat on her back on the table (so she can stare at the fluorescent light). While it's not ideal that we have to be there in the first place, I couldn't be happier with our experience.

Day 1 - Day 15

Although her blood pressure checked out much higher today, we were still advised to stick with the 0.4 mL dosage instead of increasing at all. It seems to be working well and C has adjusted to the thrice daily doses. We will return in one month to reevaluate. I'm not sure what we'll do with all our free time until then! But, after over an hour of entertaining the staff and other patients with her squealing, kicking, and general cuteness, we headed home for some much needed napping. Nap time. It's a good thing.

In the Blink of an Eye

Operation Goodbye Hemangioma: Day 10

This morning, we increased C's dose of propranalol from 0.4 mL to 0.8 mL. After checking her blood pressure, Dr. Theos determined it was much too low to continue with that dose and instructed us to stay with 0.4 mL over the weekend and check her BP again on Monday. 

Thirty minutes before, as I carried my sleeping daughter's limp body in my arms, I knew what the results would be. While the medication has affected her sleep habits, she typically only sleeps that hard at night. And after I managed to put her in her carseat, drive home, and take her out of her carseat without so much as a peep from her, I began to panic. So I pulled out my best acts to attempt something everyone tells you never to do: wake a sleeping baby.

I sang songs, told stories in funny voices, and kissed her all over. I was going for this reaction:

Finally, after much work, she woke up as her smiling, happy self just in time for a picnic with friends. We were able to spend this sunny afternoon with our friend Ben and his Mommy Jessica. Ben is three and a half months older than Miss C and I love watching him grow and getting a little sneak peek at what is to come. These two will grow up playing together and will be best friends by their first day of kindergarten together! I'm so lucky to have a friend in the same Mommy stage as me for those days when I need to talk to someone who can talk back (and it doesn't hurt that our kids get to socialize too).

Somehow, while I have been focused on dosages, feedings, and sleep schedules, my baby girl has gotten 10 days older right before my eyes. She is much more alert throughout the day, responding to me with coos and squeals and a crooked smile. Her expressions entertain me all day long as I change mine in hopes of a mimic. She is ticklish, loves bright lights and mirrors, and thinks her Mommy is hysterical. She is squeezing into her last pack of newborn diapers and stretching out her newborn footed pajamas. Our little girl is growing so fast and I am amazed at how she changes each day.

And while she has been busy growing, her hemangioma has been busy shrinking! While the red is relatively the same, the bump has gone down, no longer affecting her left eyebrow when smiling, and the surface area is soft to the touch. Although we weren't able to stick with the increased dosage today, we will keep trucking along with our 0.4 mL until our check up on the 25th. Hopefully, Dr. Theos will be as happy with our progress as I am.

Day 1 - Day 10 on propranalol

Ain't No Rest for the Weary

Operation Goodbye Hemangioma: Day 6

Sleep is on the brain. Mostly because the Ryan house hasn't seen much of it in the last week.

We knew Operation Goodbye Hemangioma would come with side effects, one of which is increased fussiness. I can't imagine what it must feel like to already be so small and then to have your blood pressure drastically lowered. Our C is certainly a trooper, but the difference in her mood is apparent. She seems to be inexplicably upset more often than before, but can typically still be consoled. Still, this increased fussiness has somehow made it more difficult for her to sleep.

I blame myself. I may have bragged a little too much about how easy it has been to put C on a sleep schedule. For weeks now, she has been going to bed at 9:00 and not waking until 5:30! It was magical. The operative word being was. 

Our day now revolves around three very important feedings with medication: 8:30 a.m, 4:30 p.m., and 12:30 a.m. For the past five days, she received 0.2 mL of propranalol with a bottle exactly every 8 hours. Starting today, the dosage was increased to 0.4 mL. While the only dose that seems to throw off our sleep schedule is that at 12:30 a.m., the necessary changes made to our feeding schedule to accommodate these doses paired with her decreased appetite, have made our girl unhappy and restless in the evenings and only able to sleep for a couple hours (at best) at a time. But after these less than restful evenings, our typical happy girl is back and all smiles. Someone is a morning person (and her Mommy is learning to become one)!

Sleep. It's a simple trade off really. If my being sleep deprived and disheveled for a mere few months results in this treatment working and her hemangioma vanishing, I'll sleep later.

The medication has already begun working! After only five days of treatment, the spot is noticeably softer and less raised and her blood pressure, while much lower, is still healthy enough to continue the course. I am amazed at the results of this treatment already and continue to be impressed with the staff at Dr. Theos' office. The nurses already know and call Catherine by name at our blood pressure checks and Catherine lights up when we are there. I don't know if it's the bright paintings and lights or just the cheerful staff, but she just can't get enough of them. 

I'm so proud of our little girl. I'll leave you with this while I attempt to master the power nap.

Day 6 and counting...

Day 1

Day 6