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!!