Strawberry

I knew this time would come soon. 

Tonight, while C was brushing her teeth, I was brushing her hair. As I swept her bangs to the side, her hemangioma peeked through. She stopped brushing her teeth, pointed to it, and said, "oh no! boo boo." 

I just said, "no, it's okay. It's not a boo boo. It's a mark."

She cocked her head to the side and asked, "mark?"

"Yes, it's a special mark. You can call it a strawberry." 

She smiled and confidently said, "strawberry."

She loves strawberries. I thought I'd give her a positive association.

It's not a big deal. It has gotten much lighter in color this year; and I know that in a few years, it will be gone. But, I also know that she is becoming more aware of how things should be. She is understanding when things are out of place or if something is wrong. She is learning social norms. And I can't help but worry that when she starts school this fall, someone will ask what the "boo boo" on her forehead is.

I only hope she smiles and confidently replies, "strawberry" with the innocence only a child can have.

I've Got the Musik in Me

The first day of Kindermusik was as nerve-racking as the first day of seventh grade. I found myself worrying about wearing the right outfit and dressing C in the right clothes. Would I like the other moms? More importantly, would they like me? I hadn't been doing this mom thing very long and I wanted new mommy friends so badly, I feared my desperation was palpable. I just wanted to be cool - except, you know, in mom form.

I nervously carried my six month old daughter in my arms as I walked through a giant baptist church, praying I wouldn't get lost within its halls. I entered a classroom and found a blanket spread on the floor and plastic egg shaped shakers in the middle. The teacher, Mrs. Jill, greeted me enthusiastically. She wore no shoes. What had I signed us up for?

I was early (a fluke that would never once be repeated) and I sat on the floor, legs crossed, shoes removed, with C perched in my lap, waiting for the other moms to arrive. She seemed as nervous as I was.

The other moms began to pour into the room, babies in tow. They all knew each other already. I was the new kid. (Seriously, it was seventh grade awkwardness all over again). But, they all greeted me and were genuinely nice. I secretly surveyed the group for my potential new mommy BFF. 

Everyone removed their shoes, took a place around the perimeter of the blanket, and gave their child an egg shaker. The children ranged from six months to sixteen months, C being one of the youngest. I helped C hold a shaker in her tiny little hand and gently bounced her up and down in my lap as we sang a "hello" song. The song greets each child by name and I watched C light up as this new circle of strangers addressed her. Maybe this was a good idea after all.

Mrs. Jill reminded us that in Kindermusik, we leave our dignity at the door. I wasn't sure what this entailed. Then, shortly after this announcement, we were singing and square dancing around the room, babies on hips, weaving in and out of one another in a do si do. It was ridiculous. It was silly. It was loud. And Catherine loved it. 

The rest of the class was filled with ringing bells, beating on drums, and even a few minutes of quiet time. I was amazed at how much stimulation (and physical exertion) was squeezed into the 45 minute class. We ended the class the same as we began, addressing each child by name. I had been pleasantly surprised by how much fun the class had been for both of us. But, I still needed to make friends. I was desperate to bond with other mothers. So, I started to join in the conversation as we all changed diapers, put shoes back on, and gathered our things.

Still painfully apprehensive about revealing C's hemangioma to new people, I adjusted her headband with a nervous frequency; but, once it revealed itself, and I regurgitated my usual spiel, I was met with nothing but positive and uplifting responses. Not a single person asked me what was wrong or if I had hit her head on something. No one even reacted much at all. It was at that moment that I realized we had found a new home. I may not have made an instant MBFF my very first class, but I had met a room full of genuine, accepting, and equally exhausted women, all carrying their own load of motherhood baggage. 

We eagerly came back the next week...and the week after that... and the week after that... until it became the one constant each week. It was the one activity we didn't dare miss. I watched C grow up in this class. She started only barely sitting up on her own and we ended this past semester with her running around the room. She began with no friends and finished the year with a room full of friendly faces. I watched her learn to clap and to go and to stop. I watched her beat on a drum and shake a bell for the first time. I watched her light up with pure joy from the moment we stepped into the room and they sang her name. And, yes, I even picked up a few friends along the way. We sadly break for summer, but we will eagerly return in the fall to a new class, with some familiar faces and some new.

This time, we'll go without reservation, kick off our shoes, and gladly check our dignity at the door.

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

Sounding Board

When I started writing about Catherine's hemangioma, it was because I had been researching like a mad woman and, among all of the disturbingly graphic information available online, had found some relief from reading the blogs of other mothers going through the same thing. I began sharing each doctor's appointment, blood pressure reading, and treatment change both as an outlet for myself and in hopes that it would one day offer some information and support to another mother.

Today, I was fortunate to meet (via facebook) a friend of a friend who is just beginning this journey with her two month old daughter. Just telling her about our journey made me realize just how far we've come. I had forgotten how utterly scary it was and how completely helpless I felt at the very beginning. I had forgotten the deep red color of the bulging bump on my baby's forehead. I had forgotten the rage I felt the first time a complete stranger had the audacity to ask me what was wrong with my baby. 

I had forgotten it all because while it has faded dramatically, it has also just become a part of my daughter. Some days, I forget it is there until I sweep her hair from her eyes to reveal the pink mark beneath. It is amazing how far we have come since we started treatment back in May. She is no longer on the clobetasol steroid cream at night, although we are still administering propranalol blood pressure medication every eight hours. But, Dr. Theos says that we will start weaning her off of that shortly after her first birthday since that is when the hemangioma will begin to shrink on its own without medical help. If it has not faded by the time she is four, we will look into laser treatment, but it should mostly go away on its own. She may be left with a slight scar without laser treatment, but it will be minimal and I'm sure we can find a cute hairstyle to hide it if need be (once she outgrows the adorable flower headbands that have become her signature look).

So as I look at my daughter and compare to photos from the beginning, I am flooded with the emotions I had then and relieved at what I see before me. We've come a long way and I can only hope the journey for my new friend is as positive as ours has been.

Day 1 of treatment (5-11-11)

After over 7 months of treatment

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.

Such Stuff As Dreams are Made On...

...And our little life is rounded with a sleep.

Yep. You guessed it. I'm complaining about not sleeping again.

I've been working on sleep training (lite) with C. No matter how hard I try, I just can't let her cry it out. Maybe after a few more months of no sleep, I'll change my tune. But for now, I'm just working on keeping her on a regular schedule of naps and a routine at bed time, hoping it will fall into place eventually. 

She goes to bed every night at 7:30. At 7:00, we start the wind down routine with a bath and lavender lotion. Then on go the footed pjs and the sleep sack and we snuggle in the rocking chair with her paci and her lovey for story time and a song while she drifts off to sleep.

Easy right?

Nope.

Around 8:30, she squirms and wiggles and rolls over and cries. It's time for a bottle. Then we sit in the chair and rock and rock and rock until her eyes flutter to sleep.

9:30 or 10:00 and she cries as if awakened by a nightmare. I pick her up, wrap her in a fuzzy blanket, and rock her back and forth, back and forth, back and forth until she relaxes in the comfort of my arms, breathes out deeply, and she sleeps.

She sleeps hard. So hard that I watch her tiny chest move up and down on the monitor just to make sure she is still breathing. And I like to think she would stay this way, BUT, her next dose of medicine is at 11:30. So I wake the finally sleeping baby for a little formula with her meds, a diaper change, and more snuggle time until she sleeps. This time is much harder than the last. The wake up call is uncalled for and it throws off the rest of the night.

1:00... 2:30... 3:30... 4:45... then I am awakened for good at 7:00 with tiny fingers poking me in my eye and pulling my hair. I guess I should mention that somewhere among the hourly wake up calls, I give up and put C in bed with me, hoping she will sleep better if she is near me. Sometimes I am lucky and we sleep for three consecutive hours.

Once upon a time, C was a great sleeper. Never all night long, but usually only one wake up around 3:30. That, I could deal with. This new schedule is. killing. me. slowly.

There are theories. She is teething. She is too excited about crawling to sleep. She has separation anxiety from me. I attempt to diagnose the situation. But then I remind myself that it won't be this way forever. That I will blink and she will be too big to rock. She won't need me to rub her back until she falls asleep. She won't snuggle her tiny nose into my chest. There will come a time when all her troubles can't be solved by a lullaby. So I embrace the joy disguised as exhaustion. I celebrate the memories disguised as obligation. And we rock and rock and rock back and forth, back and forth, back and forth until all is right in her little world. 

For an hour or so at least.

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.

Anticipation

Anticipation. 

We learn it as infants. To anticipate a tickle, a kiss, a silly face. We learn to expect certain results from certain situations, to anticipate the same effect from a certain cause. But sometimes, we're wrong.

We anticipated C's due date. We made a phone list and knew the route to the hospital. We had a birth plan. But, C had something different in mind. I have no cute posed pictures of the day I left for the hospital. There are no photos of me with my bags packed, belly protruding, in front of the car, waiting for Husband to calmly drive me to the hospital. Instead, there are mental images. Images of panic, of throwing things haphazardly into my suitcase and hobbling down two flights of stairs. Images of me standing in my driveway, in the darkness before dawn, waiting for my friends to come get me. Images of racing down the corridor, having her cut from inside me over a month before her due date, and touching her cheek with my index finger before she was quickly taken to the NICU. Images of being taken to an empty room without my newborn baby.

Then I see Husband, running into the room after racing back from work in another state. I see him kiss me then rush to the NICU to meet his daughter for the very first time. I see him tell me she's perfect, the glow of a new father encompassing his whole being. She was here. She was healthy. On her own schedule, taking us all by surprise. She was everything we had anticipated, and not at all what we expected all at the same time.

As a child grows inside you, you anticipate her arrival. Picture her tiny fingers and toes and her pink cheeks. You expect your child to be healthy because you have done everything right. Cause and effect. But, then life surprises you with something small, yet significant. A tiny red mark that within the first six weeks of life grew and darkened. Then you are told to anticipate its continued growth. Told to expect it to get worse before it gets better. And you wait.

But instead of waiting, instead of expecting the expected, we tried something different. We treated the dark red bump and we watched it change. Watched it shrink and soften before our eyes. And then our expectations changed. We expected something drastic, but again, we were wrong. So we tried something else. A new treatment in addition to the other. And again, we saw changes.

We see changes.

But this time, we try to reel in our expectations. We anticipate nothing so that we are no longer disappointed. But we just can't help but anticipate the day that the bump fades from our beautiful daughter's forehead. Because the treatments are working.

Day 69 : Day 92 (3 months)
3 cm long, 1.5 cm wide, 0.8 cm protrusion:
3 cm long, 1.2 cm wide, 0.3 cm protrusion

At nearly six months old, C understands anticipation. She watches my hands wiggle toward her before a tickle. She anticipates my kiss on her cheek. She knows what the bath water will feel like on her toes. But her expectations are simple. They are young. And while Husband and I anxiously watch the effects of treatment, all she expects is our touch, a soothing song, a gentle kiss. And I try to take notes from my daughter. Try to lower my expectations, anticipate the simple pleasures of parenthood, and let the bump run its course. Because although it will be gone before we know it, there will be other bumps in her life. And I'll have to remind myself of the sweet anticipation of an infant who expects love and nothing else.

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.

Size Matters

14 weeks

It's all about size lately. How big is she now? How much is she eating? How much medicine is she taking? How long is she sleeping? How....how....how...?

How big? Too big! I blink my eyes and she gains an ounce, grows 1/4 of an inch. She has grown out of newborn diapers and I have packed away a box full of newborn onesies and footed pajamas.

How much is she eating? Enough to keep me in my day job of cleaning and making bottles. 

How much medicine? Enough to make a difference on day 22 of OGH:

Day 1 - Day 22
Side note: is there anything sweeter than a sleeping baby?

How long is she sleeping? Long enough for me to finish one load of laundry, start a load of dishes, attempt to make the house not look like a small explosion just went off, and grab just enough sleep to allow me to hazily function the next day.

As I rocked my nearly 12 pound (12 pounds!) baby to sleep tonight, struggling to still cradle her like a newborn, my arm tingling beneath her weight, I was painfully aware of her size and how rapidly it is increasing. I sleep for 4 hours and wake up to find a beautiful little morning person, more expressive than the day before. I blink and my three month old is teething. I turn around and she is nearly holding her head up on her own.  Where is the time going?

Along with all the other unsolicited advice you receive from complete strangers as a new mom, is the warning that they grow up much too fast. Well, random lady in the Target checkout line, you were right. I look at my sweet little three month old and realize that she is already one quarter of a year old! She has been in this world for 14 weeks in which she has learned to make playful noises, to smile, to follow the sound of my voice. She can push her tiny body up on her tiny little arms when on her tummy, and can grab toys and purposefully put them in her mouth. 

Each day she evolves more and more into the person she is supposed to be. At 14 weeks old, I can already tell she is stubborn like her Mommy, but easygoing like Daddy. She is dramatic (her god-given right as the first born) and has us wrapped around her little finger. She likes bright lights and mirrors and kisses on her chubby little cheeks. She's ticklish. Mommy's bedtime stories put her to sleep while Daddy's make her ready to play. We've already learned so much about this precious little girl yet still have so very much to discover. 

It's difficult to believe that 14 weeks have passed by already and that our once 5 pounds, 2 ounces daughter is now nearly twelve pounds and that the same little girl who was once swallowed by preemie clothes is now wearing size 3 months. While our daughter grows and changes each day, so does our world, living as if we ceased to exist before her and never looking back. We have grown from a family of two to one of three and that size matters most of all.

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