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.

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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!

Meds are going down easier!

Caroline is doing much better with taking all the medicine. Thanks for the prayers! The concentrated dose is working much better. Even though it tastes just as awful, I can get the syringe further back in her mouth, and give it to her with a bottle and she does not mind as much. I'm also starting to see some changes to the hemangioma. It is definetely shrinking some, and the redness has dulled a bit in color. Caroline has a follow up appointment with Duke dermatology on Friday, so I'm anxious to see what Dr. Prose has to say. The day before, Caroline has her two month check up with her pediatrician. Lots of shots- yikes! Mommy is the one who will need the prayers that day!

Medicine whoas.....

Getting the prednisone (steriod) in Caroline is proving not as easy as it would seem. The medicine apparently tastes horrible, despite the grape flavoring to try to mask it, and Caroline does not appreciate having it forced into her mouth. She chokes, coughs, gags and spits the entire time. We are trying every different trick to try to get it in her, but so far sometimes it seems more is on the burp cloth than in her stomach. I did call a local compounding pharmacy who suggested that they can mix the medicine to make it more concentrated, so that she has to take less volume per dose. The docs at Duke said this would be fine, so it's been called in and it's worth a try. It would decrease the amount from 3 cc's to 1 cc, which is pretty significant. It won't be ready until tomorrow afternoon. In the morning, I'm going to try mixing the 3 cc's of medicine with 3 cc's of apple juice and give it to her in a bottle nipple. We'll see.... I'm running out of ideas! The bottom line: 2 month old babies should not have to take this kind of medicine! This really stinks! Any moms out there who have other suggestions, I'm open to anything!