Bye Bye Steroids!

Caroline had her last dose of steroids this morning. While Caroline didn't see it as an event needing a lot of fanfare (smile) her Mommy sure did! It is such a relief to know that we are DONE. At one point, Caroline was taking 5 medications: the steroid to treat her hemangioma, an antibiotic to prevent infection, and 3 medications to try to soothe her little tummy. And, most of these she was taking from the time she was 6 weeks old. That's too much for such a teeny baby. I don't want anyone to think that I am exaggerating our situation or "making a big deal out of nothing." Anyone who knows what I do for a living knows that I am fully aware that things could be much worse. I have followed parents on journeys they have taken with their children that I pray daily we will NEVER have to take with Caroline. But my mother's heart has also already taught me that as a parent, you want to protect your child from any type of adversity. Even if that adversity is relatively mild, compared to the worst case scenario. And to say that I haven't cried some tears over the unexpected challenge placed in our laps would be a lie. Because I have. Caroline has had to deal with more than most babies her age. She has been forced to take several vile tasting medicines on a daily basis when all she should have known was the comforting taste of warm milk. The very medicine used to treat the unwelcome visitor on her beautiful face then attacked her little tummy. The most comforting and pleasurable thing in a baby's life (eating) was often painful and uncomfortable for her. There were many days of feeling helpless, and numerous trips to the doctor to try and make things better for her. But, as my mother likes to say, "this too shall pass." And it did. And I am thankful. I am thankful that she's young, and oblivious to the comments and questions (most of them innocent, but a few have hit me the wrong way). I'm thankful that at this point, we don't have to try to answer HER questions about the "whys", or worry about her emotional development as she copes with being "different." I am thankful that more than likely, the hemangioma will be gone before this ever will be an issue for her. And, I am thankful that God has given her such a precious and sweet little personality and disposition that she takes everything in stride. We are indeed thankful, and so blessed.

5 months old!

Caroline is 5 months old today! Happy birthday, sweet pea! And Caroline says to remind everyone to click on the "follow this blog" link to the right of the page. She wants to know who's keeping up with her and all her tricks!

My visit with Santa

I enjoyed meeting Santa for the first time! I'm really lucky because Santa happens to be a personal friend of Mommy's through work, and as you can see, he's the REAL DEAL. No fake mall Santa for me. I almost got a nice handful of his beard too, but Mommy took me back before any damage could be done. I hope he brings me lots of loot because I've been a good girl!!

One week down, one to go!

One week down on weaning from the steriods....only one week to go! We are so excited! We have seen no change in the hemangioma, so it's looking promising that she will actually be able to be off the steroids for good! Already, we've noticed some differences in terms of side effects. Her little cheeks seem to be getting smaller (the "moon shape" appearance of her face is due to the steroids), and over the past few days she has not spit up hardly at all. The latter gives me hope that the tummy issues are due to the steroids. Caroline had her 4 month check up last week (Mommy was slack so it was closer to a five month check up, but oh well). She weighs 11 lbs, 12 ounces. We were really surprised she wasn't a 12 pounder! She's still very petite for her age - she continues to be in the 10th percentile for height and weight, but she's growing and proportionate so the pediatrician isn't worried. He was very surprised that Caroline couldn't tolerate rice cereal, as this usually isn't the case for babies. After the steroids are stopped, I will try again as well as trying formula. Dr. Burbridge basically said it could be steroid irritation or something else, like allergies. If she still has trouble after a few weeks off the steroid, we'll have to go back to Duke GI. Please pray that the stomach issues are not due to allergies, as this will make things much more complicated! Caroline is a pro at rolling now. She can roll from tummy to back and back to tummy with no problem. She has also discovered that tummy sleeping is kind of nice. A few times she's been on her tummy asleep in the crib when I've checked on her at night or during a nap. I tried taking out her bumper pads because of this (I don't want her to get caught face down on the side of the crib). Well, last night she woke up screaming 2 times during the night because she got her legs caught in the slats of the crib and couldn't move. At 3:30am, Mommy put the bumpers back! I just said a silent prayer that she would be protected.... I never knew what worry was until I became a Mommy! Today we're taking Caroline on a special trip to visit Santa! Hope we get some good pics.... stay tuned! Here are some more recent pictures of Caroline....most of them are of her doing what she does best right now...rolling over! This is me playing with my Papa and Uncle Todd at Thanksgiving... we had lots of fun!

Chance encounters and Duke update

We went back to Duke today for an appointment with Dr. Prose. He thinks it's time to wean Caroline off the steroid. Yay!! For the next 10 days, we will be cutting her daily dose in half, and then in half again for the following 10 days before finally stopping it altogether. So in about another month, we should be DONE! Our prayer now is that the hemangioma is finished growing, so that the steroid won't have to be started again, and that Caroline's stomach problems were in fact due to the steroids and that she will be able to soon tolerate formula and solids. We also requested a consultation with the doctor who is an expert at Duke in laser treatments. We would like his opinion regarding when/if to do the laser treatment now that the steroid treatment is ending. That appointment is not until February, as well as our next appointment with Dr. Prose. In the past month or so I've had two "chance encounters" with mothers whose children also had hemangiomas on their faces. One mother approached me while at Duke to tell me that her daughter also had a hemangioma on her face, and started laser treatments at 8 weeks old. She provided me with the name of the doctor at Duke and highly recommended him. This is in large part what encouraged Zack and I to request a consultation with this doctor. Another mother I ran into in the middle of Old Navy. She had her little girl with her, a toddler, and she had a hemangioma on her face in the EXACT location of Caroline's, except under the opposite eye. Anyone who knows me knows that it is out of character for me to approach a perfect stranger and strike up a conversation, but something told me I had to talk to this mother. Once I told her about Caroline, she seemed equally as comforted to hear from another mother facing the same situation. She shared with me that her daughter, born July of 07, was also on steroid treatment until she was about five months old. After that the hemangioma began disappearing on it's own. Now only a slightly red area is left. A visible representation of what is to be for Caroline. The Lord truly sends encouragement when you need it! He has taken care of all of the details so far, and I know He will now.

How cute am I?

My first spoon feeding

Here are the pictures of Caroline's first taste of rice cereal:

Caroline's first snow!

We woke up in Greensboro to a surprise: snow had fallen overnight and left a small dusting covering the ground and the trees! Very pretty! I had to to take a picture with Caroline, since winters around here are unpredictable....we might have several snows or this could be the only one of the season- you never know! Of course, Caroline was only mildly impressed.... Doesn't she look like the cutest little Eskimo in her heavy winter coat?

I Did It!!

Mommy was getting me undressed for my bath, and I decided to start practicing my rolling. I rolled over onto my tummy twice, all by myself!! All that practice paid off! Now Mommy is wondering how many times she will have to come to my crib tonight to roll me back onto my back....hmm...... Way to go Caroline! Mommy is so proud! :-)

Caroline is 4 months old!

Today is Caroline's 4 month birthday! Time is flying by! She is growing and changing so much. She had her first taste of rice cereal from the spoon yesterday. She really enjoyed it, but unfortunately, it all came up several hours later (sigh). Those steroids still affect her tummy. So, Mommy won't be trying any more solids until after the steroid treatment is over! The pictures are cute though. Stay tuned, I'll post those in the next few days. She's still working on rolling over. Saturday morning, we really thought she had it. I found her on her tummy in the crib when I went to get her up. We still can't figure out how she got there though, because there doesn't seem to have been a "light bulb" moment that occurred because she has not been able to do it again. It's not for lack of trying though! Today Caroline went to her Godmother (and my best friend) Melissa's bridal shower. She was such a good girl and we had lots of fun! Here is Caroline with her Godmother: Melissa couldn't resist trying her Bride hat on Caroline Here are some pictures taken today- 4 month birthday!

Special Visitors

This week Caroline had some special visitors. She FINALLY got to meet her great-grandmother Nannie (now she's met all three). Her aunts Barbara and Lynn and her uncle Todd came too. Her Nonna (Zack's mom) is here for a long weekend visit, so there's plenty of spoiling going on! Here I am with my Nannie! I thought my uncle Todd was hilarious! We were like two peas in a pod! AND....just this weekend I found my feet! As you can see, I successfully managed to take off my sock. I was so proud! Last night I used my new found talent with my feet to spash Mommy in the bathtub. I am SO close to rolling over onto my tummy too- I practice all day on my play mat! Boy, I've been really busy!!

Grrrrr.....

That's Caroline's new sound, and boy is she proud of it! She loves to make a growling noise in the back of her throat, and she loves it even more if you growl back at her! She's our little lion! I know I'm late, but I can't resist posting some pictures of her from Halloween:

Just Like Mommy

Caroline has now become attached to her "blankie." Actually, it is just a really thin burp cloth with a ladybug embroidered on it, but to her it's her security blanket. Now when she goes to sleep, she takes her blankie and rubs or covers her face with it. It's too cute! The funny thing is, I used to have a blanket myself that I was VERY attached to. My mom says Caroline reminds her of me and how I used to hold the blanket over my nose and face when I slept or was tired. Like mother, like daughter!

Doing Better

Caroline's tummy seems to be doing better. After continuing to worsen at the end of last week we, along with Dr. Prose, decided to stop the steroid for the weekend to see if this helped improve her tummy troubles. It did, but unfortunately the hemangioma started to grow again. She had to restart the steroid on Monday, and this was just confirmation that it's not time to wean her off quite yet. Even with restarting the steroid however, her stomach issues are still much improved. I'm hoping that the little break allowed her tummy to heal some and allowed the carafate (medicine to coat her tummy) to do it's job. So for now, it looks like we won't have to put her through any testing, thank goodness! Please pray that this continues because she's a much more comfortable little baby, which makes all of us a lot happier for sure!

3 months old!

Caroline is three months old! Happy 3 month birthday, sweet girl!

Back to Duke

Caroline's stomach pain continued to worsen over the last few days despite being prescribed a new medication to "coat" her tummy. Yesterday she was in a lot of pain and crying with nearly every bottle and even in between feedings. Her pediatrician and Dr. Prose felt it necessary for her to be seen today by the pediatric gastroenterologist at Duke to get another opinion about what might be going on. Dr. Ulshen (peds GI) is not convinced that her problems are necessarily due to the steroids. They very well might be, but in his years of experience treating kids with steroids he has not had a child develop stomach issues as serious as Caroline's (Dr. Prose has said the same thing). It could be that she has something else going on that would have developed anyway and just coincidentally occurred the same time the steroids were started. The only way to know for sure is to perform some tests- an endoscopy and upper GI x-ray. The endoscopy would require her to receive anesthesia and be put to sleep while Dr. Ulshen looked down her throat and into her stomach. However, because the new medication may take a few days to really take full affect, we're going to wait to see if she improves over the next day or so before putting her through any testing. Dr. Prose is also willing to stop the steroid for a while and just monitor her hemangioma for growth to see if this improves her tummy troubles. If so, we would know that they were due to the steroids. So, for the next couple of days, we will just see how she does. If she doesn't improve, she will probably have the testing done sometime next week. Please keep Caroline in your prayers that her stomach would heal on it's own, the new medication would begin to work, and the testing won't be necessary.

Will you be my friend?

Caroline wants to know who her blogging friends are! Let her know that you are watching her grow by clicking on the "Follow this blog" icon on the right of the page.

Update on tummy issues and new pics....

Unfortunately, the meds have not had the effect on the tummy problems that we were hoping for. In fact, over the last few days, Caroline has just seemed to get worse. I took her back to the pediatrician's office this morning to get some advice for next steps, and they will be consulting with Dr. Prose at Duke today and call me when they decide what to do. Adding a medication that would "coat" her stomach is one option. We saw Dr. Prose this past Friday, and the steroid dose has been reduced by a bit. The plan would be to keep an eye on any growth/change in the hemangioma while trying to gradually taper the steroid over the next six weeks or so. We were hopeful that the decrease in the steroid may help the tummy problems too, but that just isn't the case. Hopefully the doctors can work together to find a plan to bring her some relief. Taking a bottle is supposed to be pleasurable for a baby, not a pain-filled experience! One thing the reflux isn't affecting is her weight. Today she weighed 10 pounds! She's gained 12 ounces in 9 days- whoa!! You can see a little bit of a double chin in the picture above (smile). I told Caroline to wear that double chin with pride- it's the only time in her life when that will be considered "cute!" Now for some good "normal" baby news and milestones... Caroline literally seems to change and develop everyday. She is now holding toys and rattles well and is really proud of this new skill. She has discovered her hands and how to use them- including pulling mommy's hair and any type of jewelry she is wearing! She is continuing to smile, and now coo, babble and squeal/scream (she really likes to hear herself make this noise!). She is really strong and loves to sit up with some assistance- we've tried her in her "bumbo" chair a few times and she seems to like it. She's very interested in our faces and reaches up to touch our nose, mouth, etc. She's at a really fun age right now! Here are some recent pictures: I love my leapfrog bouncy chair! My blankie and my paci are my two best friends! This is my friend, "bug." She plays music and lights up and has really fun "crinkle" wings. She's my favorite toy right now. Here I am in my "bumbo" seat. I think I like it.....maybe... So Sweet!!

Tummy Troubles

It seems we have traded one problem for another.... Caroline's hemangioma continues to respond to the steroids and I think it looks a little better each week. It continues to stay stable and has not grown. The trade off- the steroids are tearing up her little tummy. She has horrible reflux which is interfering with her ability to take her bottle at times. Sometimes she turns her head away from the bottle, then cries because she's hungry but too uncomfortable to eat. She is also spitting up more. Three nights ago she was in so much pain with her 6pm bottle.... turning her head, crying out, scrunching her little legs to her tummy in as tight of a ball as she could get- she wasn't the only one in tears! This prompted me to call Dr. Prose that evening on his cell phone. Yes, Dr. Prose gave me his personal cell phone to use if necessary- unbelievable! How many doctors care that much about their patients that they make themselves that available? He was so very kind, and after some research on his part we now have her on two antacid medications and have increased the doses on both, and have separated out the dose of the steroid into three even doses spread throughout the day. She seems to be somewhat better and I'm hoping that as the new meds get into her system she will continue to improve. I am taking her back to see Dr. Prose at Duke tomorrow morning. Also because of her tummy sensitivity she has not been able to tolerate anything but breast milk. This is fine except that she is beginning to need more than I can keep up with, so this has been a struggle. The poor girl empties her entire stomach anytime formula is tried. For now I am pumping around the clock day and night to keep up with her so I don't have to supplement with any formula. I'm pretty emotionally and physically exhausted for many reasons. Please keep Caroline in your prayers, especially tomorrow as we return to Duke that the right decisions will be made regarding continuing/decreasing the steroid, and that her tummy troubles will continue to improve. Despite being uncomfortable at times, she is still the happy, easy-going smiley baby she's always been. She is truly so very sweet and is just a joy! She is certainly the sunshine in my life right now!! I'll post some new pictures later and give an update on all her new "tricks." She just keeps growing and growing!!

Caroline had her follow up appointment at Duke today and all went well. Dr. Prose is pleased with her progress and thinks that the hemangioma has decreased in size some, but most certainly has not grown. So, we are meeting the goal of giving her the steriod. For now, we are going to continue giving it to her at the same dose and return to Duke in two weeks. At that time we may begin decreasing the dose slightly. The goal is for her to take as much of the steriod as necessary, but no more than necessary to keep the hemangioma stable. Because of the potential side effects of long term steriod use, we only want her to be on them for as long as is necessary - it's a balancing act. Caroline's two month check up went well. She now weighs 9 pounds, 4 ounces and is 21 and 1/4 inches long. On the growth chart she's only in the 10th percentile for height and weight! Seems she is going to be a petite little peanut! She's very proportionate though, and is growing well so no worries! The poor girl had to get three shots. She handled them pretty well I must say. Today she has been quite fussy though and just acts like she does not feel well. Hopefully she'll be all better tomorrow. Here's some pictures of Caroline showing off her "boo-boos." Check out the tazmanian and daffy duck band-aides!