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