Then and Now

A year ago, as I've mentioned in previous posts, my thinking was quite different. I've never been suicidal, but I can't say I worried too much about staying alive. It's not like I engaged in intentionally dangerous behaviors or impulses. I didn't play in traffic or jump, parachuteless out of airplanes or off buildings. I didn't play on tight ropes. In fact, besides those impulsive adolescent years and perhaps more than my fair share of risky drunken shenanigans, I've taken pretty good care of myself. I never invited death or pain, but I also didn't despair at the possibility of getting some kind of terminal illness or losing my life (painlessly?) in some sort of accident. Now, as I've previously mentioned, my perspective has changed. I have a son and he has given me new life. I love my husband and my friends and family, but there's just something different with my Critter. There's the sense that not only does he need me, and his father needs me; but there's also this shiny new sense of excitement and curiosity that comes with the overwhelming love for my child. I WANT and APPRECIATE this life. That's not to say I believe people who are depressed or otherwise struggling should put all of the emotional weight of their lives on their children! Our children are not here to save us from ourselves. That's not fair to the kid and it will only cause problems for everyone down the line. All I'm saying is that my life feels more complete. More exciting with more potential for both joy and heartbreak and adventure and so much learning. My baby boy doesn't have to carry the weight of being my life, in its entirety. He simply and beautifully enhances and brings a new light to every nook of it. He makes life luscious and full and too big to take for granted. He brings zest to passing go.

And with all that said, I got a call from my nurse midwife yesterday. My post-baby pap smear came back abnormal. Uh, what?? I tested positive for high risk (read: possible could lead to cancer) HPV. Luckily, I've already done my research, so I haven't freaked out. Most of the time, people's immune systems crush the little bugger virus before any damage is done; but then, again, there's the possibility it won't. In that case, first step is still not to freak out. HPV does not equal cancer. It just increases the likelihood that I could get cancer. So, second step is to get check for pre-cancerous (or cancerous, I suppose) cells. Pre-cancerous get scraped, I get a follow up to make sure they don't come back, and done. Poof. Worry gone. Back to routine care o' the business downstairs. I guess I'm not really worried about step three. Step three assumes steps 1 and 2 don't work, and that seems unlikely.

It does make me think in my new way about mortality. BC (Before Critter), I don't know that I would have sought treatment in the event of a necessary third step. I figured (knowing full well that I might very well change my mind given the reality of imminent death) that I might just let the cancer take me. My step 3 would have been about finding peace within my community, tying up emotional and logistical loose ends, and securing palliative care for the pain. I would have peaced-out of this joint, figuring it was just my time. But now.... I have my Critter. My little love. Now things have changed. Now I would fight it. I would get treatment. I would hold onto the very last shreds of my life to watch him along his journey for as long as possible. And that's it. Life is harder, more fulfilling, and wonderful; and I would no longer fold so easily to hand it in.... I don't know how to end this entry. So how about:

FUCK YEAH. I'm a MOM!

Dear Critter

Dear Critter,
As I'm both exhausted, because you won't sleep, and sad, because I'm at work instead of at home with you and your dad and sister, I'm just going to start this entry with some memories from your first 6 weeks of breathing air instead of sucking amniotic fluid.

• Soy formula is evil, but at least you're off it now. As mentioned in previous posts, you tested positive for a rare genetic disorder called galactosemia. It sounds fake, doesn't it? When I heard it over the phone I wanted to yell PRANK CALL PRANK CALL and hang up.... but it was real. Three and a half weeks later we got the good news that you are just a carrier and that you do not have a symptomatic strain of it. You get back on the boob! That said, someday, if you are planning to have your own biological children with someone, you might want to have them tested for it, just to know what you might be up against.
• Pumping sucks, but it's worth it to make sure you get at least mostly good stuff.
• Your dad almost left you thumbless (look closely at your left one) when I was too scared to trim your fingernails. It's ok. It grew back. Besides, how many thumbs would you REALLY have needed anyway? Neither one of us has attempted to trim them again since. You get mittens instead. It's a good look, kid. 
• One morning, after you slept on the couch with your dad, you smelled like an armpit. Your dad's armpit, to be clear. He'd been working out and it took 2 baths to get that smell off of your head.
• You LOVE snuggling with your dad. He plays with you and soothes you in ways that I can't, and it's adorable, melting my heart every time I see it. I guess you're not holding any grudges over the thumb thing.
• Sleep is rough. You seem to do best in the mornings, but nights are a different story. First (besides the simple fact that you're a newborn) was the soy and not being able to poop which kept you awake and screaming. Then came the gas, which we discovered was also HUNGER pain because the boob diner wasn't producing enough milk. We've fixed the hungry tummy thing, but you fart like a grown man after downing a 6 pack, and the grumble guts you get while working up to said flatulence is apparently pretty damn uncomfortable. We're hoping you'll feel better if I give up certain kinds of food like gluten and dairy.
• Have I mentioned that you sound, we can only imagine, like a pterodactyl when you're upset? You have the most blood curdling, eardrum shattering, heart breaking scream I've ever heard. And, unless you're fully in a food coma or asleep, you employ said scream with each diaper change. It seems, my little love, that you would much prefer stewing in your messed britches.
• You've pooped in my hand. You've projectile pooped on the changing table. You've pooped all over yourself and on me in public. You've pooped explosively. You've pooped pellets. You've pooped skid marks. You've pooped calking. You've pooped paste. You've pooped soup. Poop has been the most prevalent theme in your life so far. Poop and gas. And I'll admit, even having grown up with your grandmother's strict anti-bathroom-humor perspective, I maintain that your gas is HILARIOUS.... when you're not crying, that is. This will no doubt change as you get older and know better. Please don't be "that guy."
• I've had breakdowns, wishing I could do more to soothe you. I've cried with you when neither of us could sleep. Well, in all fairness, I could have slept if you'd have let me! But I hope you always know, my little love, that I will always be here to hold you through your pain. Even after I die, I hope memories will help lighten your load and ease your suffering.
• Your smiles and laughter are the most beautiful things I've ever seen and heard. You melt my heart into a messy little puddle.
• I hate leaving you to come to work. I love my job. I just hate leaving you, especially with someone other than family. No offense to Grandma Linda's Daycare. I think maybe, probably, it will never feel like there's enough time. You are my world. I wonder if I could just bring you to work with me... you could hang out in the office, getting snuggled by everyone in turn. Four days into being back at work, and I miss the hell out of you, Critter. At least someday I'll get off this night schedule and I'll be home with you and everyone in the evenings again.

I guess that's it for now. I'm so tired my eyeballs feel like they're falling out of my head, and coffee has taken on an entirely renewed appeal; but you're already getting too big too fast. I didn't give you life, little love. We've given each other life. I love passing go with you.

Love,
Mama

Soy formula vs. the Boob juice

I thought instead about entitling this entry "Soy swill vs. the grand and glorious Boob," but I decided to stay a little more neutral. Anyway, Mom said I should write everything down because I'd forget the little details that I wanted to remember before I knew it... so here I am, finally taking a priceless quiet moment to write while little man slumbers and I can't remember all I'd wanted to write. I also want to get a baby book. The convenience of doing everything online is great, but the tangibility of hard copies, of actual photos, of memories written in pen, is priceless. Those are the things you pass down the generations. Not websites and blogs. In the meantime, however, here's today's blog entry....

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.