Initially, Ross and I discussed and seriously contemplating attempting to make our own formula. We were obviously going to run the recipe past the pediatrician, not to get his approval (obviously homemade formula is not closely aligned with conventional medicinal practices), but to make sure nothing in it would harm Asher. The thought of making it actually excited me, I would know exactly what is in it, know that it's fresh, and be able to better know what he could tolerate and what he couldn't. We then found out I was sick and needed to have an organ removed, so we got overwhelmed and distracted, and I knew making our own formula would be difficult with me having surgery and recovering. I didn't want to wait until after the surgery and after I recovered, so I started researching the store-bought formula she told me about. The brand of formula she referred to is one that most people have never heard of, and one I had only heard of because I've read hundreds of blogs and forums about formula, reflux, colic, newborns, etc. It's an organic formula that is only sold at health food stores. Lucky for us, we live in an affluent suburb that has everything you could possibly want or need at your fingertips, so our local Whole Foods store is a whole 10 minutes away. I did TONS of research on the formula.... I think I've read everything that's every been written about it! It sounded pretty fantastic. We had been using a "gentle" formula from a major commercial formula company. It was just OK... it was the best we had tried so far (and we have tried so many I actually lost count), but it wasn't great. The "gentle" formula was the only one that we had used that had LOW lactose, and that seemed to make a difference (all of the other formulas were HORRIBLE for Asher). The low lactose wasn't fantastic, but the best we had found... until, I realized that this organic brand of formula my friend told me about made a lactose FREE formula. I was super excited, as I'm certain that although Asher doesn't have an allergy to milk protein, I just know he has an intolerance/sensitivity to lactose (why else would the low lactose formula be the only one he could semi-tolerate??). I told Ross about it, told him I had researched it, told him that it was all organic, and that we could buy it locally. We were both excited about it, and Ross rushed out the next morning to get some to try. I was psyched that it was organic, that it was made by a small company in the midwest, that it had NO lactose, and that it also had NO corn syrup (it's in EVERY other formula out there). It uses brown rice syrup in the place of corn syrup and lactose. The company also supports adoption, donates to orphanages with special needs kiddos, and offers special prices for low-income families who have a child with a medical hardship... I mean, COME ON, how could you not love this company?!
It's been 3 days since we started Asher on the lactose free organic formula, and there seems to be a pretty significant improvement so far. It smells a million times better than any other formula (like real milk with a subtle sweetness), and Asher also seems to like the taste of it more. He is refluxing and spitting up WAY WAY less in just the three days, burping better, having less gas, and not having constipation or diarrhea (all problems on other formulas). Also, his burps smell like brown sugar from the brown rice syrup ;) In all the research I have done, I have seen that often times lactose intolerance can cause several problems like reflux, digestive issues, gas, fussiness, rash, etc., all things that Asher has suffered from. I'm not saying that this formula is magic and that it has/will solve all of his problems, but so far, it is looking VERY promising, and for the first time since he's been born, I feel hopeful.
Yesterday Asher had an appointment at the hospital with the OT, and another appointment with Tomato. The appointment with the OT was actually great! We really liked her, she was warm, compassionate, non-judgmental, and super helpful. She seems to really know what she's doing. She gave us loads of stuff to try, and she was very hands on with us and Asher (literally) helping us try different stuff and showing us techniques that might be useful. We told her that since Ross' insurance sucks, we likely will not be able to see her regularly (as you kind of need to with therapy) because we are currently paying 100% of everything for Asher's medical needs (I HATE INSURANCE!!!!!!!!). She was disappointed but understanding, and because of that, she gave us tons of stuff to try, knowing that we might not be able to come back for a while. She also said if we can't afford to come in a lot we can email her and ask her stuff... she also called Ross today to check in and see if we needed anything! We left feeling hopeful and prepared, ready to try some of the stuff she had talked about to see if it would be helpful with Asher's feeding aversion.
We then rushed to the other side of the hospital to see stupid Tomato. Our pediatrician works for a physicians group that is directly affiliated with the hospital we see Tomato at, so they have access to each others notes in their database. Apparently, she saw in our pediatrician's notes that we didn't like her, that we weren't satisfied with her, and that we called the pediatrician to get another referral for a different GI doctor. AWKWARD. We didn't know this until the end of the appointment. She came in with a very different attitude, trying to be nice, understanding, and compassionate... saying she didn't have kids, so she couldn't possibly know how hard it was, but she could imagine how difficult it has been. She told us we were doing everything right, and that since there was nothing that showed up on the upper GI, there was really nothing left to do. Asher has gained 3.5 inches and 3.5 pounds since birth, putting on a little weight since his last appointment with Tomato. She said that she consulted with all of her colleagues including the chief, and everyone agreed that there was nothing left to do but watch Asher and see how he progressed. She said that since we have tried everything, and nothing has worked, there is not much else they can do for us (he doesn't qualify for a scope procedure unless he's basically half dead). She said to keep following up with the OT and to come back to her monthly for weight checks and "check-ins" (we will not be doing this). She ended our appointment by telling us that she saw the note in the system from where we called and asked for a referral for a different GI doctor. We confirmed that we did that, and I told her that if something can be done for Asher, we don't want to just sit by and wait it out when we could be doing something. She reiterated that she (and apparently "all" of her colleagues) thought that we had done, and were currently doing, everything that we could. She said that she was sure that he had colic, and "possibly some reflux"... oh boy.
I'm still not sure what I think about "colic", but if there is a true colic, then Asher has it, ALONG with reflux. A book my sister let me borrow written by a physician who has done loads of research has an interesting take on colic. He says that he thinks it has to do with brain chemistry, and the baby's inability to calm down, causing them to get way over-tired, way overstimulated, and be extremely fussy for the first three months of life. Infant reflux is thought to be caused by immature digestive systems (if not caused by an allergy or intolerance), so I guess, if that's the case, he will just have to outgrow everything as his little brain and body matures a bit more. Apparently treating it does nothing, as we've tried everything and nothing has worked. Maybe he's already starting to SLOWLY grow out of what's plaguing him... maybe this formula is the missing link... maybe it's a bit of both. I guess we'll see! Asher is still very uncomfortable, extremely fussy, he cries MUCH MUCH more than is required for a "colic" diagnosis, he has a terrible time sleeping, and he still is struggling with his feeding aversion... but, we are hopeful. We have seen a glimmer of improvement in him in the last week or so, and for now, that's enough. I see a tiny bit of hope now in his suffering. So hopefully, there won't be too many more negative posts of our struggle and misery!
We are not able to travel to be with my family this year for Thanksgiving due to my health and to Asher's struggles. We will really miss them, but it can't be helped, so we are just hoping that we might be able to see family around Christmas if we are all healthy and feeling up to it. Your prayers are still very much needed and appreciated! Thanks for caring about all of us. We love you all!!!
Here is our little trooper, on his way to the hospital, again...
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