Dr. Button has had to give me bad news twice — first, when he called to tell me I had tested positive for Lyme. Second, when he called to tell me there was a problem with Eden’s blood work.
I’ll let you off the hook — she’s okay. We’re pretty sure it’s over. But it was a long two weeks from that first phone call until today, when Eden is looking plumper and pinker and her blood work is almost back to normal.
The anomaly was high liver function. Paired with a baby that wasn’t gaining weight, it was pretty bad news.
I am always surprised when people speak of parenthood as a job of mindless banality. No meeting I ever had in professional life carried the stakes of Eden’s medical appointments. No professional relationships were ever more critical to me than those I maintain with her care providers.
Eden has a medical team, and her Dad and I are at the head of it. That is complicated work.
We start with an agreement not to ask Dr. Google, not to take this thing any faster than it needs to go. Dr. Button runs some additional tests and takes her off Zantac and puts her on Prilosec and I stop taking pain medication as an extra precaution. We agree to supplement with formula after every feeding.
He consults a couple of pediatricians, and refers us to Children’s Hospital to a GI specialist. And then we are instructed to sit tight. We need a week and a second blood panel.
This is an odd week. The bigs still have school and homework and the laundry continues to pile up. I still have papers to grade and– of course — a newborn to care for.
And at least four times a day this conversation:
“She’s beautiful! How old is she?”
“Six weeks.”
“Wow, what a peanut!” (Never, “Petite” or “delicate” or any other word. Always always with the peanuts.) “How much does she weigh?”
“Eight pounds, three ounces,” I answer, bracing for the next question like a bad actor telegraphing a coming slap.
“WOW! What did she weigh when she was born?”
“Eight pounds, four,” I reply in a tone the smart ones take to be the end of the conversation.
As long as I live I will never ever ever again question a mother about her newborn. I’ll tell her the baby is beautiful, congratulate her, shut my mouth.
And then the week has passed, the second blood panel is in, and Cute Husband and I are sitting in a little cement cell of a room with colorful animal cut outs on the walls. The only sound is Eden sucking on her pacifier.
I have one ear bud from Sunbeam’s iPod in my ear.
“Who are these people?” I say of the music pouring out. “And why are they screaming?”
Cute Husband is adorable — the picture of a Dad. He has come from work in his suit with the silver-blue tie that sets off his eyes behind his glasses.
The specialist walks in, sits on the little stool, and flips through the pages that contain the record of Eden’s small life: 19 weigh-ins, 7 blood-draws, an ultrasound and a partridge in a pear tree.
“I can see why Dr. Button was concerned,” she says, frowning at the paper. She looks up and fixes her eyes on Eden. And here it comes, the thing that makes me crazy and saves my sanity all at once, every freaking time. “Wow, she really doesn’t look sick, does she?”
Eden coos and almost-smiles and lifts her head up in baby-wonder.
“With these numbers I would really expect a much sicker-looking baby,” she mutters, going back to the papers. “I wonder what her thyroid was?”
“It was normal,” I say. “He ran it on the 26th.”
“Oh, yes, here it is. This chart is different from the one I am used to looking at. Now I am wondering about glucose?”
“That’s in there, too.”
“What was her discharge weight?” she asks.
“7 pounds, 11,” I say. “She was 8 pounds, 4 at birth and went down to 7 pounds 3 at week two. She was back up to 8 pounds, 3 last week — week five — and today measured 8 pounds, 4. She was 20 inches at birth and measured 21 1/2 here in your office.”
I, who can’t add and subtract, who easily forgets quantities and dates and can’t be trusted to reliably double a recipe: I have these numbers and I know they’re right.
She is reading a constellation of chemistry and physiology I can’t even see. I am reading the wrinkle of her lip, the uncomfortable squirm of her toes poking out of the peep-toe flats. I know she thinks something is wrong.
Here in a cement honeycomb of a building, with similar conferences going on above and below us and to the sides, with children living and dying, we three are trying to communicate. Cute Husband and I hold weeks worth of evidence that might be helpful. She holds a headful of possible diagnoses. We’re trying to trade, and it’s harder than it looks.
Together, we paint a picture of what’s happening to this child, and pictures are always as much art as science.
“Biliary atresia,” she says, “is a condition where the valves connecting the liver and gall bladder don’t work properly.”
She tells us more — about tests and lab work and surgical fixes. I have learned that doctors only tell you what you need to know. What you can stand to know is up to you, and is a matter of asking questions.
Cute Husband and I ask about the tests, the chemicals, crack a few lame jokes. Neither of us asks about prognosis.
She tells us she will call when she can get us an appointment for the test in the nuclear medicine department. The surgical fix’s chances are best the sooner it’s done.
We decide to call it “Billikerficklegruben” and ask anyone who knows anything about it not to tell us.
But that night I Google, and I sleep badly, and want to be back in the life where bills and laundry are my worst nightmares.
And then something wonderful — good weather. An anniversary weekend. A second opinion, another blood panel.
Eden is looking better. She’s looking lots better. The numbers no longer support Billikerficklegruben. And it can’t be Cystic Fibrosis or Hepatitis, either. We play mini-golf and make cod and kiss in the rainbow and the next day we see Dr. Button again.
She has gained five ounces in four days and hasn’t cried uncontrollably or thrown up in over a week.
“Maybe she never had reflux,” Dr. Button says. “An inflamed liver could have made her cry and throw up. So she’s naturally slow to gain anyway, like her sisters, and then picks up this odd virus somewhere.”
“If her immune system were working overdrive, it would burn more calories,” the specialist adds. “And make weight gain even harder.”
Sounds good to us.
One more blood draw and we wait.
I relate to so much of this: The daughter who is always referred to as a “peanut”, the resolve to never again ask another mother about her newborn after feeling so invaded by the “normal” questions people ask, the rattling off of weights and dates and numbers for tests…
Anyways, I’m glad for Eden looking better.
And, apparently, I can’t spell. I’m Valery not Valeru.
Waiting with you, praying for you.
Hoping that the next blood tests come back normal and awesome… And that Eden gets over this thing….
Breathe
Breathe
Breathe
Exhale.
Repeat.
Praying hard that you all have turned the corner with Eden — and that she loses her “peanut” status and moves up to at least a Brazil Nut — or whatever the biggest legume is — soon!
God’s blessings on you all.
She’s not even my child and I’m overwhelmed, perhaps because I’m a mother, with concern, anxiety and relief for Eden!
Waiting is torture. But it sounds like you’ve finally been given more positive than negative news and that has to allow you to breathe just a wee bit easier.
Why can’t a baby just BE? Why does it always have to be either, ‘She’s so SMALL! Obviously you are totally unable to provide for her’ or, ‘OMG SHE’S ENORMOUS WHAT IS WRONG WITH YOU, YOU ARE A TERRIBLE MOTHER!’
I birthed a fat, pink toddler. She is still a fat, pink toddler, a year later, only fatter and slightly less pink. She is in something like the 417th percentile for weight. I get the opposite of what you are going through – people want me to put her on Jenny Craig or something. I don’t understand why strangers can’t just smile and move on. Each and every baby is their own person, and they do things their own way – grow, gain or lose weight, talk or walk or smile when they want. Eden is just being Edeny. Would we expect any less of one of the Damomma girls? I am hoping that the latest possibility is true, that her tough little system fought a nasty and now she can go back to being the schmoopiest Schmoopy that there ever was.
Loved the wedding pic. I think I could hear the music from the movie ‘Legend’ when I looked at it.
If it were October everyone would call her “Pumpkin”.
Does this mean you can have coffee again?
I smiled at “Eden has a medical team, and her Dad and I are at the head of it. That is complicated work.” Isn’t that the ever lovin’ truth? I think it frequently.
Babies are amazing creatures, but so are their mamas, I think.
Holding each of you near my heart.
funny how life can go on in the midst of events that should really stop time cold. but i guess the distractions keep us sane (or nearly sane, anyway).
so glad the little scmoopster is gaining more and vomiting less. personally, i’ve come to enjoy the smell of breastmilk puke. it’s eau de harper (my 4-month-old).
Ah, I’m glad things are looking up. I never could have imagined the stress and sheer worry that accompanies children and their medical anomalies before I had kids. Now I know. And man, it’s hard.
I hope Miss Eden in all her beautiful petiteness keeps proving the naysayers wrong, keeps surprising the docs, and keeps being the sweet little ray of hope she’s been since way before she was born.
*hugs*
Still thinking of you and that sweet baby, from another mom of a small baby.
Still thinking of you and that sweet baby, from another mom of a small baby.
She’s going to be just fine…I know it in my heart!
I wish I lived near, and I would come over and do your laundry…yes, even fold it and put it away, all fresh and smelling like Downy! I would also cook and bake cookies for all of you. I just wish there was something I could do to help!
At least you’re not ignoring the fact that there is a problem – that’s the first step in getting her healthy. I hope things work out on this next blood draw – for everyone’s sake.
The point at which I burst into tears while reading this post (because I do, at some point in most of your posts) was “five ounces in four days” because I know all too well what a great gain that is.
I sure do like that “naturally slow-growing and caught a bug” theory; I know how scary it is when people with letters after their names start saying words that you don’t want to know how to pronounce, in reference to your kid.
Hang in there.
(PS – Pop over to my place when you have a chance. I’ve done some redecorating.
)
I too can completely relate to your post, it brought tears to my eyes. I have gone through similar things with my own son. Each blood test and each scan, you hope that they may find something but then again you hope that they won’t find anything. It is very painful but I can sense from reading your post that there is an amazing amount of love and I know little Eden can sense it. Hang in there.
This is a lot ot deal with. I’m sorry you guys have to go through this. Kiss her soft little head for all of us
Glad sweet Eden is doing better and that the heads of her medical team are seeing a rainbow at the end of what has been a long tunnel. All the best to your family.
That difference between knowing via charts and numbers vs. knowing via looking at, holding, interacting with the baby is the reason we need to listen to nurses at least as much as we listen to doctors.
The evidence you can’t weigh or measure or calculate is sometimes the most important.
Good luck to you and Eden. Clearly she’s learning how to kick viruses asses just like Damomma!
I can so relate to this (31 week preemie triplets). The rollercoster ride is exhausting, gaining weight then loosing it again, more bloodwork, even a transfusion and suddenly everthing is fine) I really hope is over for you and baby Eden.
Jeez, I realized that I was holding my breath and tensing while I was reading this. I remember that anxiety like I remember the smell of my girl’s head. I am praying that this nightmare stops soon. You are doing an incredible job Liz. Hold on.
I feel your pain. Ours was ” she’s in heart failure “… And then it was ” she needs brain surgery”..
Now? ” She looks amazing! ” And ” you’d never know how sick she’d ever been. ”
I fervently hope Eden and you keep up the good news.
Good lord, woman.
Aaaaack!
Yes, more good news, please.
my thoughts are with you…
now, on the “peanut” comments, my aunt had a shirt made for my little pixie of a cousin, born a preemie… after a while, she just wanted to scream at people for asking about the baby. don’t get me wrong, like any mom, she wanted to have a discsussion about her child, just not one related to size… any discussion would do, just not that one. so she went for a taglin, that went something like this (literal translation, sorry, it doesn’t carry well into English): I may be small, but just you watch… anyway, that attitude might be more applicable to Ren’s character, but you get the drift. As I am learning how to be a mom, I’m also learning what questions never to ask again (I got : aren’t you dissapointed it’s “another” boy? more than enough, thank you.)… your post made me realize “size” is another area that deserves special care. thanks for the reminder.
I feel your frustration about the size comments. My daughter was 4lbs 2oz at birth, and in the past 4 years has stayed steady at the 1st %ile for weight and height. It’s endlessly frustrating when people refer to her as “little,” “tiny,” “peanut” ….. My stock response (especially when my daughter’s right there hearing every word they say about her) is to “agree,” saying, Yes, she’s petite, isn’t she? That usually gets the message across to them.