This is Eli

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

Eli’s got a new roomie, also named Eli. His mom’s name is Jessica. She said it would be OK for me to mention them here.

It’s been nice to have a chatty mom in the NICU room, since it can get a little lonely up here. Laila is sick again, so she can’t come to the hospital. Mark is also getting a cold, so he’s got to stay away, too. The type of cold Laila has is a virus that can actually kill preemie or compromised babies. It will not hurt her, however, as it cycles on through. I’m back to wearing a mask, as well as a gown over my clothes, when I’m in the NICU. I’m not sick, this is just a precaution.

Back to the other Eli. Other Eli is a preemie and his mom is here all the time. She’s dedicated to the little man. She was 30 weeks pregnant when someone slammed into the car she and her sister were riding in. Mom was a passenger. Weeks later, she’s still bruised across the belly from her seatbelt. Doctors took measures to slow down her labor, and other Eli was born, I think, at 32 weeks. He weighed about 3 pounds. Other Eli, like my Eli, is a little fighter. He got a blood transfusion today and took it quite well. They’ll be here for Christmas, too.

My Eli is doing well. He’s out of his incubator nest and in a crib as of today. He eats 70 mL of milk per feeding, which is where they want him to be for a few days before he can come home. He continues to poo into his bag like a champ. I learned to squeeze the poo out of the bag and into a diaper. Yes, it’s a little strange my child poos into a bag, but it’s become normal to me. It’s actually no worse than changing a dirty diaper. He also makes little teeny man toots into his bag. They’re a bit…loud…considering babies typically make toots into a diaper, which muffles the sound. Eli, on the other hand, is rattling a plastic bag. I make sure everyone around me knows that was him…not me. “Oh, Eli! Excuse you!” I exclaim in an overly loud manner. I’m up close and personal with my kid’s digestion 24/7.

Eli 12.22

I’m usually in the NICU around eight hours a day. Eli’s had a nurse named Nancy for a few days during the day who knows a lot about little babies. She’s been a NICU nurse for 10 years. Example: My first attempt to give Eli his electric orange vitamin goo from a syringe ended with most of the goo all over his chin. Then along came Nurse Nancy. She changed the vitamin time to his feeding time and diluted the vitamins in breast milk. He sucked it all down in about five seconds. Vitamins are important for kids with cystic fibrosis because they may not be absorbing all their nutrients quite right. Nurse Nancy is organized and likes rules. She gave me this highly efficient report on my child when I met her. People don’t really do that around here unless you ask. I liked her style. Then she started bossing me around. I hate when people boss me around but for some reason I’ve been letting Nurse Nancy get away with it. For instance, she totally busted me for bringing coffee back into the NICU. At first, she told me not to bring it back unless it had a lid on it. When I couldn’t find a lid, I made this sort of lame one out of plastic wrap and medical tape. That didn’t ride. I sheepishly agreed not to bring drinks back here any more. Let’s face it. I was totally asking to be busted with that sorry excuse for a lid. She has good ideas about babies. Like rocking them forward and backward gently a little bit, which throws off their sense of balance and wakens them. This is helpful when a baby falls asleep when you’re trying to get him to eat. I did not know that until today.

IMG_2886

Along the lines of cystic fibrosis, I met a lovely woman from the CF Center here at Children’s named Debbie Berry. She is the center’s coordinator and visited with me for most of an hour yesterday. People in Oklahoma visit with each other. Even when they talk on the phone, they’re visiting. I like this phrase. It’s comfy. Though this conversation between Debbie Berry and I occurred yesterday, sadly, I can hardly remember the specifics. Mostly, she listened to me rattle off concerns and drone on and on about my life. My take away was that I am in love with Debbie Berry and Debbie Berry makes me feel calm and reassured about everything. I am also happy to hear that CF research is on the brink of some really exciting treatments. I did no research to verify this statement. I am taking my new hero Debbie Berry at her word. It’s a great time for modern medicine.

Yet another awesome thing about Ms. Berry is that she put me in contact with a woman named Pam. I will write more about my conversation with Pam in a next post, because it deserves it’s own special place on the Internets. Pam is candid. Pam told me, among many other things, “You’re going to learn real fast how to be a bitch.”

Little did she know, I could open a school on that matter. But my school could definitely use a director with more experience than me. Pam has two teenage sons with cystic fibrosis. They race motorcycles. I think Pam’s a scrapper. I like Pam.

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5 thoughts on “Eli and Eli

  1. Kathy Hatfield says:

    I see new doors opening in your journey. Keep it going girl!

    Like

  2. Kathy Hatfield says:

    I feel in my heart everything is going to be fine.

    Like

  3. Angie says:

    Two things: Eli looks great! I love his chubby cheeks. He looks like he’s waving in one pic. He knows he’s a superstar! And, can I work at you school? 🙂

    Like

    1. j&m says:

      You’re hired!

      Like

  4. Ruth says:

    Thanks for the update. He’s beautiful. He’s lucky to have such a great family.

    Like

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