Dr. Button and I have a routine.
After years of seeing each other once or twice a year for checkups and chest colds, we have seen each other approximately 19 times in four weeks.
So here’s the routine: the nurse weighs Eden and logs the information into the computer, and then leaves me in the exam room to wait for Dr. Button. Dr. Button finishes with his previous patient and then swings by his desk to log in to Eden’s chart. Then he comes into the exam room grim-faced to deliver the news that I have a very sick infant.
But when he opens the door and makes eye contact, I smile. Because I am not worried. Because the baby I am holding is not sick. I am her mother and I know she’s okay, she’s just small is all.
And then we talk and he watches her closely and then he examines her and scratches his head and agrees that she sure doesn’t look sick.
She looks fantastic. Great color, alert, responsive.
And then we talk and I say that I want to ride it out, I think her weight will resolve. He agrees that it’s no fun to send a newborn for tests if they don’t need to happen. We decide to do nothing, to visit again in a few days, to get aggressive if she’s not radically better then.
This is what we do. This is what we have done for four weeks.
But this time the routine changes. When he knocks on the door and we make eye contact I don’t smile. I try not to cry.
“Yeah,” he nods. I pop the iPod ear buds out. I have spent the last twenty minutes listening to music, fighting guilt and panic.
I was just too clever. I had to get cute. I really believed I was smarter than Big Medicine and that I could just keep her home and avoid tests I knew she didn’t need. I have allowed the child to get really sick.
“So it’s time to start getting aggressive,” Dr. Button says.
“Yes,” I nod.
“A ten-ounce loss in four days is pretty serious.”
“Whatever you want to do,” I say. “You tell me what needs to happen and I’ll do it.”
“I know,” he says. But it’s my only contribution and I have to make it — No more resistance. I’ll give her formula, I’ll make her sleep in a crib, I’ll wear a freaking bunny suit and run through the streets. Just tell me what to do.
He tells me the next steps — to Boston Children’s to a GI specialist. Blood work. Urine tap.
I nod.
He puts her on the table and looks at her. She gazes up at him with curious blue eyes.
“She just looks so good,” he says. “She’s crying after every feed?”
“Yes,” I say. “Like she’s in terrible pain. All night long, too.”
He smooshes her belly, feels around in there.
“It doesn’t seem to make her uncomfortable,” he says.
“It makes me wildly uncomfortable, does that count?” I ask. While he runs his own checklist of things to look for, I am running mine. I need coverage for the Bigs. Mare has piano. Doodley needs a snack. What do we have in the fridge for someone to feed them? Who can I call? I should get an overnight bag for Edeny and me. I need the iPod and cell phone charger and better shoes.
“Okay,” Dr. Button says. “I’m going to go make some phone calls and get this started. Before we do that, let’s just weigh her again to be sure.”
He brings in the scale and I set her on it and turn away. I can’t stand to look.
“Elizabeth,” he taps my arm. “Look.” He’s laughing.
Holy God — Eden’s not down ten ounces. She’s up two.
(Why did I put you through that? Because I had to live through it, why the hell should you be spared?)
I have completely lost my composure and am repeating “Holy shit” multiple times. We’re both trying to breathe again.
“Okay, well, yeah, that’s different,” he says.
I hug Edeny and she looks all happy that I’m happy.
“I still think we should move forward with tests,” Dr. Button says.
“Oh, sure, whatever you want,” I say with a generous wave of my hand.
The day is still hard.
I have always thought that a person is who she is when she is born. Even if her lifetime will radically impact how she functions in the world, she is a complete person at birth.
When you have a sick or unhappy child, you get an insight into her character.
I nurse Eden until they have the tray prepped, everyone gloved and ready to go. Then I trade out for the pacifier, hold her close, take her hand. When the needle goes into her arm, she wimpers. There are people holding each of her limbs and she resists for only a second before closing her eyes, sucking furiously on the pacifier, squeezing my hand.
One nurse digs around that tiny arm with a needle, another squeezes blood out to fill the vials. Eden keeps sucking, eyes closed, gripping my fingers.
“She’s so good!” the nurse said.
“Hey … is she asleep?” the other nurse asks.
“I think she is,” I say. Edeny has decided she does not like her current circumstance and will just sleep through it.
At the ultrasound, she fusses only briefly on the table before passing out. I check her breathing, but no, she really is just completely asleep. It’s very odd that we are ultraounding her and it’s not going through me. Her name is on the little screen and the transducer comes down and is revealing her stomach, which to me looks like a petri dish swimming with tadpoles and meteors. To the doctor it looks like an organ that is processing food appropriately, so that’s good.
Dr. Button calls me at home late that night to tell me that the tests have come back normal. Of course.
So we’ll go for another weigh-in in a couple of days. Next time, I think I’ll dress her in the bunny suit. Just to mix things up.
Because someone has to wear a bunny suit before this is all over.
emotional roller-coaster. I hope it has worked itself out, for your sake. (and mine, I admit. My heart can’t take a lot more of that )
we want pix of the bunny suit!
Am I first? Why do I care? I am so glad little E is okay. Thank you for updating.
Wow. I forgot how everything at that age is ounces here or there.
But crying after every feed and all night? All I can think is that she owes you some serious macaroni art in a few years, to make up for this.
Wow. Holy cow.
yikes, yikes, yikes. And I thought the jaundice was scary. Sounds to me like reflux all up in there, especially with the crying after feeding and when she lies down at night. Why is it so scary when they are so little? I am glad to hear that everything is normal.
I am so so sorry you’ve had to go through all of this but am so so glad it seems to be nothing terrbily serious. I’ve had my own issues with my now six month old – screaming in horrible pain and I can completely relate. It is not fun but makes us stronger right?
Poor Eden and poor mom. Keep on keeping on, mama. You know it will all be o.k.
Whew! So glad it turned out okay, I hope things smooth out for you both soon.
Oh Liz … hang on in there. It made me tear up just reading this, and not being a mother myself, I can’t even imagine how it must’ve felt for you going through it. Praying for you, Eden, and the rest of the family.
Not for nothing but who made the error? Who was the one that entered the 10 oz loss in the computer? I would have lost my shit all over the responsible party.
Thinking of you and litte E every day. Thanks for letting us know what’s going on, I’ve been worrying. I hope they find what’s making eating so painful for the little one so the tests have not been in vain.
Eden (and your whole family!) is in our thoughts and prayers! A momma’s intuition is worth a lot – glad your ped recognizes that.
Oh goodness! I nearly had a heart attack just reading that. Can’t imagine living through it. Sending all the healthy vibes I can your way.
I’m assuming the Ultra sound was an UGI testing for reflux? So if it’s negative, I’m thinking allergies. Like maybe to the food your eating? Usually milk. Have you talked to Dr Button about this? Milk free diets are the pits but we do what we must, right? Poor Eden and Poor Momma. =)
Oh Liz! You are so brave. I really related to the story — especially the declining tests, and then accepting them. How wonderful and crazy-making that all the tests came back normal.
I’m glad she’s gaining weight! I vote that you both wear bunny suits.
Wow,that is a lot to go through. I’m so glad she’s doing well.
I’m a little seasick from that roller coaster, my heart is still pounding, but that is why you are the writer! Well, thank goodness! Poor little baby And I cannot imaging how exhausted you must be! Better days are coming!
Mila did this too. Pleaseplease please get her an echocardiogram. I’m begging. Please.
I’m so glad the tests were normal!!
What a little angel going through all that stuff so well. She gets her strength from her Momma, clearly. I think of you often and what a stressful time this must be for all of you.
peace,
Sue
Holy crap Liz, you scared me half to death. Fingers still crossed, prayers still being said.
They drew blood from her arm? Not a heel prick? Lynne was 2 or 3 months old and they squeezed out a TON of blood because she had the tiniest arms. Although, the next time they did the arm because they needed so much blood.
Lynne was a skinny thing, though we didn’t really notice until 2 months since she was so alert and happy and learning. It’s a scary, scary thing to not know what’s wrong. Turned out, for us, it was my milk supply, which crushed me and drastically shortened our nursing, but she’s a healthy 15-month-old now.
Thinking of all of you – hope things keep getting better. So glad the tests were normal.
Oh my God.
A 12 oz difference in a kid that small is HUGE – especially when you’re talking about a loss versus a gain.
It is amazing how tiny babies just check out and go to sleep when things get stressful, isn’t it? Some days, I really wish I could do that.
Our issues were different, but the weight checks and the blood draws and the ultrasound-outside-of-me are all so familiar.
I’m sending lots of grow-baby-grow-mojo, and hoping this all gets sorted out soon, so Eden can just get on with the business of being a baby.
some unsolicited advice . . . are you familiar with the Moby Wrap? it’s soft and snuggly and you can wear her after she eats — letting gravity help keep food where it belongs. I know a lot of reflux-y babies who respond really well to being held in the up-and-down position. and the Moby, while it seems intimidating, is actually really easy to put on!
I was holding my breath the whole time I was reading your post. Thanks for the update. I am so glad the weigh-in was up and not down. She’s beautiful.
Bunnies by the Bay makes a super cute bunny “hoodie” with ears. I don’t work for them but I used to work at a toy/baby store that sold them and everyone who saw them would just coo over how cute they were. So, half bunny suits are out there:)
Glad to hear the Eden is taking everything in stride. Isn’t is amazing that she isn’t even going to remember all this? But you will and she’s lucky she has you to care for her.
If it will make it better, I’ll wear the bunny suit!
Thanks for keeping us updated, I know from experience that the more people you talk to about it, sometimes the less scary it seems. I think spreading the anxiety around so we can all share it with you makes things easier to deal with.
*hugs* was there recently with my “baby” when she was 4-9 months old and not gaining a whit. (She’s now just past one and is doing much better).
Still no idea why.
Now I’m gearing up for the next one and hoping enough love and snuggles will make it ok.
Keep growing, little E!
Wow. That was quite an error that someone made. You’d think they’d be EXTRA careful knowing what you’re going through. Sheesh.
My baby girl is about to turn 1 year old. She’s also my third child and she’s MUCH smaller than the other two ever were. I haven’t weighed her recently but she’s due for a check at the doctor because she was so little still at 9 months. I think she might be up to 17 lbs now…and just like Eden…healthy, alert, hitting her milestones…just small.
Keep doing what you’re doing. Sounds like it is turning around!
Happy birthday!
Please please if you are worried about supply you should move on to proper ways to increase it. If you knew you could pump enough to supplement with breast milk rather than formula, or bottle feed so you can add anything for reflux, would that help? I hate to sound like a pusher but I feel like there is a valid way to safely boost your supply and at least take that off the table. You have my email if you want more info — I was pumping at work and I could double my output.
I’m glad she is up and not down weight wise. The more milk you can get her the better I would think.
Oh my goodness, what a roller coaster post!! I am SO glad she is okay! I’m sure you’ve tried the food thing, but I know I have had to go off of what seems like everything with my 3 month old- milk, eggs, tomato, limited wheat, no legumes, basically nothing the least bit gassy for me, as it makes her tummy upset just like that! And it has worked, my very bland diet… I eat rice everything (noodles, tortillas, rice), lots of portobello mushrooms, sweet potatoes, basic meats, bananas, almond butter but no other nuts… it’s worth it for the quiet sleep she finally is getting! Plus, hey, baby weight going off no problem! Anyway, I’m sure you’ve already looked at diet, and so I just want to keep hearing she is looking little but okay!
My best friend has Cystic Fibrosis and she says that if it hasn’t been done already, and AMBRY test should be run, just in case. Eden’s situation is nearly identical to hers (her blog is at talanaf.blogspot.com) and she was diagnosed with CF at 6 months old, in 1982.