Raya's presumed reflux and resulting feeding issues have been kicking our butt lately. Starting at birth, her feeding has steadily grown more and more erratic, much in the way that Sava's did during the first months of his life. When I said she had serious reflux at barely a few days old, most people assumed I was being paranoid; yet, knowing what we did from our experience with Number One, the signs were unmistakable: she comfort-fed ALL the time, and her phenomenal weight gain was the prelude to the feeding refusal as a result of the accumulated pain which we are witnessing right now. It took us a couple of months and many back-and-forths with our GI to get her on the medicine and the dose that we thought was necessary, and while she feels better now (no more screaming and arching at every feed), she is far from eating like a normal baby. For a couple of weeks during the second month I fed her almost exclusively bottles of pumped milk, in order to see if that would help the reflux (it didn't), and a couple of weeks ago we decided to trial her with hypoallergenic formula; she disliked the taste so much that, after ONE bottle of the formula, she has adamantly refused to take any other bottles--not with mommy milk, not with nothing. So, now we exclusively breastfeed, and she mostly nurses in her sleep. With the steroids wreaking havoc on her sleep as well--she is 4 months old and almost never naps longer than 30 minutes!--she spends most of her naps on my chest, nursing. (Thank goodness for the new Google phone, which allows me to read things online with one hand while holding her with the other.) While I don't mind the wonderful closeness that nursing creates between us (but I do mind the sore nipples after hours of sucking without eating!), I feel constantly anxious about the time I am not spending with Sava, and I also worry that we are creating a disastrous eating habit: if she eats only asleep because of the presumed pain from her reflux, she is never going to associate eating with pleasure, and we'll end up in some sort of feeding therapy. While I know that is not the end of the world because of what we've been through with Sava, it is not something I possibly could look forward to.
What we have not had the energy to determine yet is whether, in addition to plain old reflux, Raya has allergies as well. While Sava's reflux was entirely triggered by what is now known as MSPI (milk/soy-protein-intolerance) and reflux meds were no help to him but diet resolved his symptoms (50% of infant reflux is caused by MSPI), Raya definitely responds to the meds, which means she has a mechanical issue that at some point she will outgrow; I have not touched anything dairy/soy/egg/nut since she was born (except for two ambiguous trials with slabs of butter), and I just don't have it in me to go through the agony of trying to figure out whether those things in my diet bother her. I did ten days without wheat with no change in her, and I am currently avoiding beef, but so far there are no visible improvements in her occasional discomfort. Once we start solids, we will inevitably have to figure these things out.
Because her weight gain has stalled over the last month, and she has not gained in length for the past two months, the docs are finally hearing the alarm we've been sounding and, as of tomorrow, we are starting a wean from the steroids. While they have done a superb job of keeping the hemangioma in check, our GI suspects they've also contributed to Raya's problems with feeding, and he anticipates that things will not improve until she is off the steroids (we are not so sure that the steroids are fully to blame, but we are not crazy about keeping her on them either). Raya has the much anticipated MRI of her brain and chest this Monday, February 8th, to check for PHACES syndrome, and after that we'll be seeing the UCSF folks who will put her on an accelerated steroid wean. They are considering switching her to the new experimental drug (old drug but newly discovered to be effective for hemangiomas), propranolol, which makes us nervous because of its unknown side effects. Yet since the hemangioma appears to still be growing, we probably will have little choice.
If all the above sounds as if we deal with medical issues all the time, that is not the case. Raya is becoming a true little person, and we have loved getting to know her the past four months. She has a curiosity about her that is very endearing, and she LOVES watching us as we go about our daily lives; to anyone who addresses her with a smile and some enthusiasm, she responds with an equally enthusiastic gaping smile. While the one word I would have used to describe Sava at this age was "sensitive," the word I would use for Raya is "good-natured"--even on steroids, which presumably make babies and children loopy--she seems inclined to be, for the most part, happy.
Sava has done phenomenally as a big brother (we keep waiting for the proverbial shoe to drop--for him to start throwing tantrums, or sucking his thumb, etc.), and Raya already follows him with her eyes whenever he is in the room. He wants to be around her all the time, but he is not always sure what to do. So, yes, he sometimes will "drive" a car across the top of her head, or he will glue his face to hers and say something loud to startle her, but these are awkward attempts to communicate rather than purposeful acts of sibling rivalry. His frequent reaction to what must seem as his parents' preoccupation with his sister--when she does not eat, for instance, or has not slept for half a night--would be best described as sadness rather than jealousy or anger. We worry sometimes that he suppresses this sadness in the name of appearing like a grown-up boy, so we try to make sure that he has opportunities to talk about his feelings. While it makes us sad to see him sad occasionally, this is one big reason why we wanted to have another child: so that Sava would learn that we love him to pieces but that our love for him does not keep us from loving another child as well. He will be stronger for learning how to share our affection and even stronger for having a sister in his life.
No comments:
Post a Comment