First off, we FINALLY got the last galactosemia results back-- a urinalysis as the last part of a "milk challenge" to see if the sugar in question was building up in him or if he was processing it-- and he's clear! Our Critter is just a carrier of the gene, but is not impacted by it in any other way, so he's back on the 24 hour booby diner!
That said, we had to keep him on soy formula for a miserable 3 weeks while I tried to keep production up by pumping, just in case his results came back clear. SOOOO glad they did (and remind me to go on a rant about doctors later). Here's the breakdown and why we're so glad to have him off of that shit:
Soy formula ingredients: "CORN SYRUP SOLIDS (39%), SOY PROTEIN ISOLATE (15%), HIGH OLEIC SAFFLOWER OIL (11%), SUGAR (10%), SOY OIL (8%), COCONUT OIL (8%);" and less than 2% of a whole bunch of other stuff. ARE YOU KIDDING ME? I'm sustaining the life of my newborn on a highly processed concoction made up primarily of SUGAR? Don't get me wrong, if the diagnosis had been legitimate, we'd have made do with it until/unless we could take advantage of other options; but still.... Awful. And I'm not just saying this because I don't like the ingredients. I've said it in a previous entry, and it rings especially true in the delicate system of babies, but what we put in our bodies IMPACTS our WELL-BEING. For 3 1/2 of the 5 weeks of Critter's life, he had blue rings under his eyes due to poor sleep, LOTS of gas, and difficulty pooping. He'd fall asleep right after he'd have a bowel movement, which was once or twice a day, and then he'd wake up screaming. So, we dubbed him our little pterodactyl, and I've thus lost probably 90% of my hearing and now carry an ear horn around in the diaper bag. By the last week of soy he COULDN'T poop without significant help from (doctor/nurse approved and dosed) prune juice and/or rectal stimulation and/or warm baths with baking soda and/or tummy massage, but the discomfort would return within a matter of hours when his body was ready to go again.* He also got a mean case of baby acne, really chapped lips, and his color seemed off. Suffice it to say, baby boy was miserable and so were we.
*For the record, we kept rectal stimulation, especially, as well as juice to an absolute minimum, wanting to mess with his little body and system as little as possible. In the event that we would have had to stay on soy, we were crossing our fingers that his body might eventually adjust.
Now, as of a very well-received and expected phone call Wednesday afternoon, we have officially ditched the soy (and prune juice) and put Critter back where he belongs on breast milk. Even accounting for some readjustment crankiness and having to nurse pretty much constantly to build production back up (we are supplementing with saved, frozen breast milk) things are SO VERY MUCH BETTER. By Thursday morning, our tiny person was starting to poop regularly again and seemed much happier. And, as of this morning, he is sleeping better (and so are we!), his skin has already mostly cleared up, his lips are fine, and his color is back within healthy tiny human range. Amazing. Cheers to boobs and their wonderful elixir of life, and FUCK soy formula. I hope, for anyone who ever has to take their child off of milk, that better options come to light. We were told by the doctor that there was no other option, quality of life be damned.
In fact, that brings me to my rant about doctors. I appreciate and respect them (I mean, hell, my amazing and wonderful older brother is one) and all that they do and know and take on in helping save lives and maintain health and wellness; BUT, as in any profession, not all doctors are created equal or share the same strengths, knowledge, or even (maybe especially) sense of empathy or respect for their patients. Maybe we can call that interpersonal savvy and humility?
The doctors at the hospital were great. They were professional, respectful, and communicative. They didn't dismiss our opinions or concerns, and they didn't underestimate our competence as parents and patients. The first doctor we saw after getting the initial galactosemia results, however, was a different story. By all appearances, she was professional and empathetic, but I can't shake the feeling that she was negligently non-communicative and condescending. She was apologetic about the diagnosis, but dismissed any question I had with "you'll have to ask the specialist." Her tone oozed of implications of poor parenting because we chose to talk to her--fewer than 24 hours after being told to switch to soy--before jumping on the soy wagon. Granted, we were told to switch immediately, but given the arbitrary nature of clinical time frames, along with the fact that our boy was showing ZERO symptoms of anything, as well as the possibility that we got a false positive, we made an educated decision to choose to wait for confirmation. Her demeanor and tone took on a shaming vibe also when I suggested that I would swing by the store to get the mandatory soy on my way home. "Oh no," she said (at least this is how I remember it). "You don't want to take him into any really public places until he's at least 2 months old," she informed me, talking about how his immune system can't handle it.
So, of course I left that doctor's office feeling completely incompetent, dismissed, angry, sad, frightened, worried, helpless, and hopeless. I had Sunshine pick up the formula on his way home, feeling grateful that Critter didn't get hungry before that. Feeling hopeless, I almost gave back the breast pump and threw away all the storage bags. I was told, afterall, that there was no other option than soy. I was told "Get him off milk immediately."
Then, I came to my senses, and remembered that disorders generally fall somewhere on a spectrum of severity. Maybe, just maybe, given his distinct lack of symptoms, he only had a mild case and we could reintroduce breast milk at some point in some quantity. This is where I have the biggest beef with that doctor. How difficult would it have been to advise me to go cold turkey and give the kid soy only, but to also keep pumping just in case the specialist cleared us? If I had taken that doctor's word --and unwillingness or maybe inability to inform me of possibilities-- as gospel, we'd be screwed into formula as our only option right now.
All is well that ends well, though. I've taken a break from ranting, and I've lost my steam for it. I'd rather marvel at my tiny person and thank my lucky stars for giving me life. Passing go is good. Life is good.
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