Wednesday, May 25, 2011

Happy Girl

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.

Tuesday, May 24, 2011

Spoiled Rotten

3 months old

Yesterday, our baby girl turned 3 months old! I have a feeling I will type this exact same thing each month, but I can't believe she's 3 months old already!

The past three months have been exhausting, exhilarating, and life changing and I wouldn't have it any other way. It's difficult to remember our lives without C. To remember life before 3:00 a.m. feedings and pacis and laundry loads full of delicate pink things. Before weekend trips involved carseats and bottle pit stops and a CD of womb sounds. Before my ears adjusted to hear the tiniest change in breathing or to identify different cries. Life before C is a distant memory and not nearly as much fun. And in this new life, there are new things to consider.

Husband and I have talked a lot lately about the people with which we surround ourselves and how they automatically become a part of her life. This weekend reminded us of what simply good people we have chosen to call our friends (and vice versa). 

C is the first baby in our group of Birmingham friends, thus becoming somewhat of a community baby. She boasts more aunts and uncles than most babies (because, you know they all talk) and I slightly fear she won't ever crawl or walk because she is constantly being held. She is loved. so. very. much. And for this, I am grateful.

This weekend, C ventured into the pool for the very first time. Our friends Ryan and Alex had everyone over on Saturday and even heated the pool to the temperature of bath water for our little girl. She was so excited to finally wear her cute bathing suit and cover up from her CiCi and her sun hat from her Mim (because the outfit is just as important as the activity) and she loved the water! She spent the afternoon being passed between Aunt Ryan, Aunt Heather, and Aunt Jenn. She even had a little cuddle time with Uncle Alex. 

Just one of the girls

After a fun filled day in the sun, the same crew headed to the wedding of a dear friend. Not only was C quiet throughout the entire ceremony, but she partied with the best of them all night long! She was mesmerized by the music and the lights at the reception and, once again, found herself being passed from one friend to the next. 

Uncle Warren and C at the reception
Dinnertime with Aunt Jenn

We so enjoyed spending the entire weekend with such wonderful friends and are grateful that C will grow up surrounded by such positive examples. She is one very lucky little girl. Happy 3 months, sweet Catherine!

Friday, May 20, 2011

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

Monday, May 16, 2011

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

Wednesday, May 11, 2011

Operation Goodbye Hemangioma

Today, at exactly 11 weeks old, C started a treatment for her hemangioma. After much research, we went into our appointment on Monday with reservations. We were seeing a pediatric dermatologist who specializes in hemangiomas and happens to be the only one in the state. I had read countless articles and blogs and watched way too many heart wrenching you tube videos of painful laser treatments and surgeries performed on infants just as small as our baby C to treat hemangiomas very similar to hers, so I braced myself for shocking suggestions.

I was pleasantly surprised. After waiting in the bright and cheery waiting room of the Specialty Division of Children's Hospital South, we were quickly taken back to check vitals and meet with one of her many residents working underneath her. The nurses were wonderful with C and the residents were all so nice. I was most impressed with how "normal" they seemed to think C's case was, having seen countless just like it. When Dr. Theos entered the room, she got right down to business. While she assured us that the location of C's hemangioma would not likely affect any vital organs (most concerning is her left eye), there is always a cosmetic aspect to consider. Even though it should shrink and vanish on its own by the time she is two, it could leave scarring, stretched skin, or other permanent markings. Taking that into consideration, she suggested a relatively new and slightly experimental treatment that was discovered by accident while treating children in France:

Propranolol. A blood pressure medication.

By taking up to 0.8mL, three times a day, the decreased blood pressure should allow the hemangioma to shrink at a rapid pace. We could see beginning changes in as little as TWO DAYS and it could be completely gone in as little as two to three months! After an EKG deemed C's heart strong enough to handle it, it was decided we would start this morning with our first dose under nurse supervision at Children's. We started with 0.2mL and after her blood pressure checked out okay, we were sent home to continue the next 5 days of doses every 8 hours on our own. We will increase to 0.4mL on day 6 (again under nurse supervision) and then again to 0.8mL on day 11. 

I will be documenting her progress in hopes that other parents will find this information useful. I know I spent countless hours searching for answers online only to find mostly disappointing stories. Hopefully, C's case will be a success! 

Day 1 of treatment
11 weeks old

We are positive and hopeful that this will work, but know that it is experimental and we may have to explore other options. Either way, I am excited that modern medicine is allowing our little trooper to be the beautiful girl she is. Operation Goodbye Hemangioma has commenced!

"I believe that the happy girls are the prettiest girls." -Audrey Hepburn

Sunday, May 8, 2011

Mom Knows Best

Mom's advice started out early with, "You can cry all you want, but you're not going to get it" and "Don't make that face or it will stick that way." It grew as I grew into classics such as, "Make good choices," and my all time favorite, "Nothing good ever happens after midnight."

I would roll my eyes as I hopped in my cherry red convertible, turned up Dave Mathews Band and pulled out of my driveway, annoyed at her constant need to know where I was going and who I was with, and painfully unaware of how much freedom I actually had. 

I had her trust and I tested it. I threw epic parties when my parents were out of town, I stretched curfew, I lied about who I was with and where I was going. 99% of the time, I got caught and 100% of the time, I learned valuable lessons. It turns out, nothing good really does happen after midnight and that the cool girls I wasn't allowed to hang out with really didn't make good choices. 

While her advice was tried and true, it was her actions that taught me the most lessons. I watched her put her whole heart into teaching, only to come home and do odd side jobs for hours at night, eventually getting her masters degree and a real estate license along the way. She didn't just serve on committees at church and at school. She was head of them all. And she still somehow had time for Alabama's Junior Miss and Bal Masque after driving us to dance and cheerleading and basketball (ahem... for that one very painful year) practices. I learned to work hard, to organize, and to take charge.

I watched her artfully wrap gifts with intricate details because the wrapping is just as important as the gift inside. She taught me how to make the perfect bow.

I learned to love Westerns, all things John Wayne, and Big Valley, because she watched them while she ironed. She ironed so often that I drew a picture of her ironing in class and gave it to her because it was her "favorite thing to do." I did not, however, learn to iron. The dryer works just fine.

I make a big deal out of all holidays with themed food (heart shaped everything for Valentine's Day, ghost cookies for Halloween, sugar cookies at Christmas) and I know how to make the perfect J-ELLO shot.

I tri-fold my towels because that's the way she did it (and it's the right way) and even if my house is a wreck, my kitchen sink is always clean.

While all these lessons have come in handy (especially the J-ELLO shots), I realize now that I learned the most valuable lesson without even realizing it. She taught me how to be a great mom.

She loves me unconditionally. Forgives and forgets with ease. Can calm me down and allow me to use perspective with simple reassurance. Even now, as I carry the title of Mom as well, she is the first person I call when anything, good or bad, happens and the one whose advice and opinions I now crave.

And all those hours she spends selflessly organizing my kitchen, cleaning my house, doing laundry, and spoiling my child, she doesn't know that I am watching her every move intently, secretly hoping that I can be only half as good a mom as she is. 

While I rocked my daughter to sleep on my very first Mother's Day, I read I Love You Forever and softly sang a verse of My Favorite Things.  As my daughter's eyes gently fluttered, fighting to stay awake, I could hear my mom reading that same book to me and singing me to sleep with that very same tune. I couldn't be prouder.

     I love you forever,
     I like you for always,
    As long as I'm living,
    My Mommy you'll be.

Nana, Mallory, C and me, and Mom
celebrating Easter four generations strong.

Happy Mother's Day, Mom!