This is Eli

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

For the first time since Eli was born I woke up with baby boy in his own bed. Or I would have, had I ever *really* slept.

I didn’t have to call the NICU and ask how he did overnight, since we already knew.

He did well! Mark and I…meh…not so much. If we can get through these early days without killing each other, it will be a win for the institution of marriage.

We brought Eli home from the hospital with bags and bags of medical supplies. His poo pumper, ostemy bags, lots of different sterile wipes of different varieties, etc. etc…

The evening started off well. I set Laila up at the sink so she could do her favorite thing on earth- the dishes. Mark did his favorite thing on earth – organizing things. He would not claim this is his favorite thing, but he’s really good at it, so I’m pretending it is so I don’t have to do it. He tackled Eli’s medical supplies.

One of Eli’s tummy bags started to leak so Mark and I teamed up to fix it. We spread towels out on the kitchen table, laid out all of his supplies, and accomplished the switch-out of the bag. You really shouldn’t, you know, crap where you eat, but we have made an exception. Dinner guests be warned. Oh, get over it, it’s not like his teeny poops are going to fly anywhere crazy, like into your wine glass.

We were a machine of efficiency. Until we weren’t.

Laila and Eli, Dec. 30

Laila and Eli, Dec. 30

Next, it was time to clean off and flush Eli’s central line. The central line, called a Broviac catheter, has been left in place for his next surgery. He’ll get meds and then IV nutrition through it at that time. It is a line that goes from the area near his clavicle, down a vein, to about a centimeter away from his heart. The area around it has to be ultra sterile at all times. A nurse changes his dressing once per week.

The central line scares me. A lot.

I swabbed off his port with alcohol and prepared a syringe to push 1 mL of blood thinner into the line. I had done this once before, at the hospital, under the guidance of the nurse. This time, the syringe wouldn’t move. Panicked, I called my sister, a nurse, to get to the bottom of it. While I was talking to her I realized I hadn’t unclamped his line. I did that and pushed in the medicine. That was fine and good, but then she started talking about air bubbles. Air bubbles are bad. Air bubbles can travel through a tiny baby’s vein, into his brain, and kill him. At her children’s hospital, they do things a little differently, first drawing back with the syringe to pull out any air, pushing a few mLs of saline and then the blood thinner. She told me to draw back a little to make sure there was no air in the line. I did. And I drew out a line of blood.

Oh, look how I explain that as if I were calm. I wasn’t. Had I not been holding up the end of his catheter I would have jumped three feet into the air at the sight of my son’s blood backing out of his tiny body. Stuck in my seat, I panicked and unleashed a few expletives. Continuing on the theme of good parenting, Laila and her sponge ears were poking around the kitchen table. Mark got queasy. His stomach’s been on the weak side when it comes to the look of all the stuff on Eli. Out of necessity, he’s getting over it. Baby’s suddenly blood-streaked central line alarmed his innards. Somehow I was calmer, but not much. Mark paced back and forth rubbing his neck and going “OhmyGodOhmyGod” while I held the end central line up, not knowing what to do next. I yelled at him to relax, which helped matters along the lines of not helping at all.

My sister remained calm. It was OK, she said. She talked me through what was next. We re-sanitized the line, screwed in the saline, pushed in the few mLs and then did the same with the 1mL of blood thinner. Because I had drawn out blood, I had also drawn out our initial push of medicine. It’s OK to see a little bit of blood when you draw back. I did not know that.

The central line sent me into a state of panic because if we screw it up we could actually kill Eli. If there is a clot, we may feel resistance. If we push anyway, it could break the clot loose. If we fail to keep his site clean and monitor it for signs of infection, he could get an infection that would go straight to his heart. If we fail to re-clamp his line after giving the line a flush, he could bleed to death. The point of keeping the line in before his surgery is to avoid another three procedures. One to remove this line, another to place a new one, and yet another to remove that one. Everything you do that opens the human body is an infection risk. He could clot during these procedures. It’s hard to know what’s right. We’re just trying to be careful.

My sister reminded me it’s good to be terrified, because we’re less likely to do something idiotic.

Eli ate twice overnight. That’s almost hassle free. He just needs enzymes and applesauce before each meal.

I took the 3 a.m. feeding and Mark the 7 a.m. What sucks about being a mom is that you have Spidey sense when it comes to your child’s sounds. That means I leap out of bed when he starts to whimper, while Mark just sleeps on through it. Whether or not I’m feeding him, I’m awake when he sounds hungry. We both worked to suction out poo from his poo bag and then re-feed it with the help of a pump. It’s a little annoying in the middle of the night, yet easier than it sounds.

I think tonight we’ll set up the poo pump to run for longer so we won’t have to do any switching out.

Get me outta this joint!

Get me outta this joint!

Laila got in bed with us at 3 a.m. This did not wake me up.

It just worried me hours later when she spewed all over the living room floor. Great. We were all contaminated.

After our night of poo syringes and patchy/ no real sleep, Mark was off to urgent care with our daughter. She puked all over herself in the car. The receptionist brought her extra clothes to wear in the waiting room and handed Mark a barf bag. Wait time: two hours.


She was tested for the flu, the baby-killing cold virus called RSV and strep. All negative.

Poor boo boo was out like a light for the rest of the day. She’s got a tummy bug.

I stayed with Eli, met the at-home nurse at the door in my bath towel, attempted to arrange work paperwork and sucked down coffee.

Things got a lot better once Grandma Chris arrived from Chicago.

Little toots Laila rested. I took care of Eli. Mark took care of Laila since she already spread her puke germs all over him. Chris bought us groceries and is making us a steak dinner right now.

Believe it or not, I’m happy we’re not at the hospital. I’m happy Eli is such a good baby beyond his mechanical difficulties of the present time.

And I’m happy it’s time for another year to turn over.

I’m not going all Pollyanna. I just happen to be genuinely happy for these things.

Fresh starts are good. We’ll get a new one tomorrow.

Mark just said “I need a beer.”

Laila answered: “Me too.”

Don’t worry, she’s sucking down water. We’re not that terrible.

Happy New Year.

Eli comes home. Dec. 30


3 thoughts on “Home. Sweet, chaotic, home.

  1. star says:

    Wow, I dont know where you get the time to write all this! You are like Super Mommy right now. I hope things get better soon and there is a happy new year in your future.


    1. j&m says:

      I pump and write. Sorry for the visual. All those years of being on a deadline make you work fast and multitask!


  2. Angie says:

    I love you, Jules….. Happy New Year! Welcome home, Eli!


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