This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

I’m feeding Eli as the nutritionist comes in. She tells me her name and I immediately forget it.

I hate breastfeeding in public, which makes me an American-style prude. I’ve never been comfortable with it. Babies don’t always give you a choice. Eli sucked down a huge bottle earlier at the hospital. He was ravenous and screaming by the time we got the the cystic fibrosis clinic on the 9th floor of Children’s.

Eli’s in the 50th percentile, weight wise, she tells me.

“Oh, that’s great!”

It really is. Laila was always so little she practically fell off the growth chart. Little Laila is coloring with crayons and paper I somehow remembered to bring from home. She puts them down.

“I’m thiwsty mommy. I want applejuice.”

I’m tugging at a blanket draped over us so I don’t flash the nutritinoist.

“OK baby we’re almost done. We’ll get some at home.”

“We give patients a nutritional rating at each visit,” the nutritionist says. “Green means there are no issues, yellow, some concerns, and red, more concerns. He’s green. Good job! ”

She leaves and the CF coordinator comes in to talk. She is a calm, reassuring and knowledgeable woman I really like named Debbie who I met quickly after Eli was diagnosed.

Debbie is talking to me about the physical therapy Eli will need. CF babies need their chest/lung area “clapped” every day, for about a half hour twice a day, for life. An automated vest will eventually help us out in that area. Clapping means cupping your hand and tapping the chest in different areas to encourage mucus to get moving. CF patients have thick, sticky mucus in the lungs. It just sits there and encourages infection. Helping them to cough by tapping them every day promotes healthy lung function in a person with CF.

She hands me a blue, squishy rubber cup to use to tap on baby and shows me how to hold it. I try not to flash her.

Laila is slamming a cabinet door shut again and again and starts to root around in a red trash can under the sink.

“Oh no honey,” Debbie says. “That’s real dirty.”

“Laila, no,” I say. “Stop slamming the cabinet.”

Red. Is that biohazard red?

She does it again. Goes for the biohazard-esque red trash again.


I am yelling to compensate for the fact I can’t move fast without flashing. Why do I care? I shouldn’t care. Who cares? France doesn’t care. Spain doesn’t care. Debbie doesn’t care. I care. Dumb.


“LAILA STOP IT NOW. Sorry, Debbie.”

I wonder if Debbie thinks I sound mean and/or crazy. I tug at the blanket. Eli falls off of me. He starts to cry and I put him back on.

Debbie – saint that she is – goes and gets an activity book for Laila.

She tells me more about the chest tapping. Gives me a sheet with diagrams.

“OK thanks,” I say. I haven’t absorbed anything she just said. I’m relieved she gave me something with instructions and pictures on it.

Dr. Royall, a lung doctor, comes in and starts asking me questions about Eli.

That’s when I smell poo.

Eli’s poo bag sometimes springs a leak as I feed him. This happens because he’s smooshed up against my body.

Baby’s new lung doctor asks me questions about the medications he’s on.

I’m done feeding Eli and put him on the exam table. I open up his outfit.

“Uh, pep something, some orange gooey vitamin stuff. Oh my God what a mess.”


“Yeah, yeah that’s it.”

“Is the vitamin Aquadek?”

“Yeah, yeah.”

Eli’s stomach, diaper, legs and outfit are coated in poo. The Broviac catheter we have taken great measures to keep ultra sterile has just fallen into the e.Coli -contaminated disaster.

I freak out.

“His central line just fell in his poop!”

“Can I help you with something?”

Dr. Royall gets up from his chair.

“Um, yeah, get me some alcohol swabs. Thanks.”


Laila is unruly and thirsty and bored.


Dr. Royall returns with the supplies and I proceed to change out Eli’s tummy bag with ostemy equipment I brought from home in a giant Ziploc. I change baby’s outfit. I wipe off the end of his poo-dipped central line with alcohol. It is a chest catheter that has been kept in place for his next surgery. Under the poo cap is a line that snakes down to his heart. It’s the last place you want bacteria to travel.

“God I’ve got to call the nurse right away about this. Is this bad?”

Dr. Royall is talking to me. He gets up and helps me swab the line a little more.

“Do you want me to call surgery? I know they can take care of this but it might be a while.”

“No, I’ve got a nursing company I can call,” I say. “I think it’s OK.”

He returns to his chair and talks and enters things into a computer.

“Mommy I’m thiwsty. I’m thiwsty mommy.”

“I’ll get you a drink soon baby. Sorry.”

I don’t remember anything else Dr. Royall tells me, other than to come back in a month.

That was our first appointment at the CF cliic.


4 thoughts on “Welcome to the clinic

  1. I wish I could come down to help you. I feel for you. Hugs.


  2. Bryan Dean says:

    So when people say things like, “Is there anything I can do to help?,” what they mean is “If you need someone to do something like watch Layla while you take Eli to a CF appointment, I’d be happy to do it.” I know I’m not the only one who has offered to help. Surely someone who can babysit for a couple of hours has offered assistance. You have friends who want to help take some of the load off. Please take advantage of all of us.


    1. j&m says:

      OK! Yeah, lesson learned. I can’t do this all myself! But it is the middle of the week…! What I learned is not to drag Laila to the hospital for four hours of appointments. It shouldn’t be so intense next time…….!


  3. What Bryan said! That’s the last time you take Laila with you, ya hear? Ask for help. People want to help! Wish I was there to do so myself.


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