rosalind's story: the part where nothing goes right

Thursday, March 21

 photo lipsmacking-1.jpg
I've never felt more clueless than I have over the past three months. What was the government thinking, letting me have a baby? I have no idea what I'm doing. I'm not saying that's the government's fault. But I definitely feel like someone, maybe some kind of an entity or something, should have stepped in and been like, "You're hopeless, lady."
Not that I didn't try. I read books. I love books. I read about childbirth, fetal development, what to expect in the first year, theories on colic and how to calm fussy babies, a disturbing pamphlet about children's rashes, and nine million blog posts entitled "What I Wish I Would Have Known Before Having A Baby," or something similarly titled (and equally unhelpful. But still expect one of those posts from me soon anyway). I felt prepared. I felt like I was ready. I felt like I'd done all I could.
And then I had a baby.And suddenly I was in a maelstrom of diapers and burp rags and nipple cream (sorry for saying "nipple") and feetie pajamas and swaddle blankets, getting thrown around and trying to grab onto anything to steady myself and coming up with empty hands and no ideas every time I tried.
"Babies should eat for about fifteen minutes each side and fall asleep.
But Rosie eats for an hour and a half and is still hungry...

"Babies should gain four to seven ounces a week."
But Rosie hasn't gained that in a month...

"Listen: if baby's breathing sounds labored, immediately take baby out of the sling and reposition."
But her breathing always sounds like that...

"Your baby should be filling three diapers a day."
But Rosie fills at least fifteen...

I turned to more books after I'd been home for a few weeks and nothing made sense. "Everyone else who has ever had a kid has done this," I remember thinking. "I must be doing something wrong." I ordered "The Womanly Art of Breastfeeding," thinking I didn't know how to feed her or read her cues. I ordered "Babywise" and "Healthy Sleep Habits, Happy Child," thinking I didn't know how to encourage her to sleep more than fifteen minutes at a time. I called nurses and doctors and saw lactation consultants and nothing and no one, and I mean nothing and no one, helped.
And no one.
I got a call saying Rosalind's newborn screening had come back abnormally, and it still didn't hit me even then that something might be different about her. I thought, for seven weeks, that I was the only incapable mother on the planet. If you have kids, I probably called you or emailed you or texted you, asking about your experience to see if any of it related to mine. If you're on my baby forum, you probably read post after post from me asking question after unanswered question. And if you're my mom or my sister, you definitely heard from me once a day. Of all the information I gathered, it never occurred to me that I wasn't the problem.
And that, my friends, is a hard place to be.
Rosie's second screening came back abnormally too, and we knew we'd have to go in for a sweat chloride, the most decisive determinant of cystic fibrosis. Even then though, I wasn't worried. Sixty-five percent of the time, the sweat chloride comes back normally. But Katniss and I haven't had very good luck with odds lately.
When I got the call about the sweat chloride being positive, I cried. For a while. The unattractive kind of crying where your lips are peeled back and your nose is scrunched and you're not wearing any make-up after the first two minutes.
And isn't it strange when you hit the point where you know you're done crying, and you don't know what to do next?
That's a hard place, too.
It all makes sense now, though. Rosie couldn't eat because she can't regulate breathing and swallowing. Rosie filled nine hundred diapers a day because she can't digest food on her own and everything she ate went straight through, kind of like her intestines were a slip 'n slide on the downhill and her food was a sumo wrestler covered in body oil. Rosie's breathing is labored because her throat collapses with every breath she tries to take. Rosie couldn't gain weight because everything, and I mean everything, passes straight through her without medication. (See sumo wrestler analogy above.)
When I think about how awful it must have been to eat and eat and eat and eat and eat and still be hungry but too tired to eat some more, I feel like a failure. I feel like I should have known something much bigger than reflux or diarrhea (sorry for saying "diarrhea") was going on.
My baby was hungry and I couldn't feed her.
You guessed it. Hard place.
I often wonder what mothers did, back before anyone knew what cystic fibrosis was, or what it meant for tiny bodies. What must they have thought, those mothers,feeding their children as much as they could possibly produce, and watching them starve to death anyway? And how confusing must it have been for those babies, doing everything evolution had programmed them to do, and growing thinner and thinner until they had no energy left to try and eat anymore?
I'm so glad it's the year 2013. I'm grateful for enzymes that help me digest food, and grateful I can give them to Rosalind. Grateful they've discovered the CF gene, and grateful for all the work the foundation is doing to correct it and find a cure.
Oh, and for all of you who have said, "Let me know if I can do anything." I'll be coming for you.


Julianne Beecher said...

You can come for me. Keep these posts coming. I love hearing your story more detailed. I feel like I'm right there with you because your writing pulls me in so much. Your story will help other moms in the future who go through the same thing. Rosie is so lucky/blessed to have you as her mommy.

Cami Olsen said...

Love learning more about sweet Rosie's condition. I can't imagine the life changing alterations you all are undergoing. I am always here for you if you need anything!

Burke & Rachel said...

I'm here, too.:) Thanks for your posts.

Paige said...

I can't even imagine how hard this has been. I wish we lives in Moscow still so I could have told you that you were an amazing mom and you were doing everything you could. Because I know you and you don't do anything half way. Rosie is so so so blessed. Heavenly Father knew what he was doing sending her sweet, special soul to you. I mean it. Out of every single person I know, YOU are the only one I can think of that has the smarts, the patience, the love, the faith to do what you're doing. I wish I could do something, anything to help. Thank heavens for good moms who can give us a break sometimes. :) I love ya girl! And I pray for you often. Xoxo

Paige said...

Oh and this picture is the best thing ever.

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