This is Eli

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

Eli remains in the NICU, the happiest-saddest place on earth. Don’t worry, he is doing just fine. Twelve must be a magic number today. I spoke to his doctor, who said she expects him to be in the NICU (neonatal intensive care unit) for at least 12 more days. I finally got a better handle on how his care is being handled and who is in charge of it and started taking detailed notes today. I was going to try to keep a hand-written journal but I think that’s too much work and might just keep notes in Word and on this blog. It’s easier to type 90+ words per minute. Yes I totally just bragged about my mad crazy wpm, try not to be jealous. I also take voice memos on occasion. Here’s what little man had to say on Dec. 8:

Regarding Eli, I spoke with Dr.  Hala Chaaban, the attending physician heading his “neo-nat” team until Christmas. After that, a new attending will rotate in. Eli also has a surgical team, headed by Dr. David Tuggle. That will not change. Dr. Tuggle is like a Jesus-mechanic of baby guts. There is something calm and familiar in his demeanor that reminds me of my uncle, (you Uncle Ronnie, who reads this blog), which I found very comforting. Tuggle did a great job with Eli’s surgery on the 6th.

Eli on Dec. 6

Eli on Dec. 6

I requested a conversation with the attending when it dawned on me today I had no idea where his medical orders were coming from, and a few snafus had me panicky. Eli’s roomie is a teeny preemie about the size of a 16 oz. bottle of Coke. Teeny baby lives in a big blue bubble machine, while Eli, who is huge by comparison, lays his head in a warm, heated open nest of blankies. They were having a busy morning. The nurse couldn’t give me answers so I asked for the doctor to cut out the middle man. Dr. Chaaban called me back very quickly and took a lot of time to answer my questions, which made me feel better. She  explained clinical terms well and came across as warm and understanding, which I liked.

There have been problems placing a central line in Eli so he can get optimal fluid nutrition. To get that, he would need a line that snaked its way through a vein, ending about a half centimeter away from his heart. The surgery team placed a line that started near his clavicle and ended near his heart on the 6th. This was done so he can receive nourishment and medicines without getting jabbed a million times. That line went in perfectly, but Eli had other plans. He decided to yank it out. He also yanked out his breathing tube, apparently over it. He didn’t need the tube to breathe any way after that. Feisty boy.

Teams of nurses tried unsuccessfully after that to place a line through an arm that ended near his heart. But on both arms attempted, the line curved under his armpit instead. They left a line that stretches about three-quarters of the way down his right arm, through which he received nutrition but no the “optimal” nutrition he really needs from a central line. They kept messing with his arm lines and I complained (thanks to the insistence of my sister). *I think* that’s why they ordered a pediatric, rather than neonatal, team to place another central line in his leg using ultra-sound guidance instead. Eli is big enough to handle older baby doc stuff. It went in well but, unfortunately, coiled at the end. They’re working on straightening it today. If that doesn’t work they will need to find another vein in another leg for another central line attempt. My mother-in-law Chris is at the hospital now and just texted that the allegedly un-coiled line appears to be working. An X-ray will confirm. I hope so, because I can’t imagine the procedure is very comfy. He is off his pain meds though he gets a boost once in a while, such as before a procedure like this.

Eli on 12.12.12, by grandma.

Eli on 12.12.12, by grandma.

While not uncommon, this multiple line business is a little unfortunate and a little difficult, Dr. Chaaban said. Nothing is wrong with his veins and they have their best team members working on it, she said.

Still, he’s rooting around for a food source, looking hungry and going to town on any pacifier. It will be at least two weeks before he eats real food, so lets hope he gets that “optimal” stuff — the fluid equivalent of hamburgers and Gatorade — soon. His moms has been pumping so much milk someone should enter her in the Oklahoma State Fair next year.

Eli’s surgery team this morning flushed out his intestines and colon and tummy with enemas and contrast dye (to detect meconium blockages). He threw up a few times due to the amount of fluid he took on, so they had to put a teeny man sump pump in his stomach again, which made me sad, since they just removed his tummy pump a few days ago. The doctor said this is not bad or alarming.

Better news is that his small intestine is now really emptying meconium and fluids into the bag affixed to its new opening on his tummy. His small intestine is working and squeezing, Dr. Chabaan said. The enemas/contrast dye procedure was more aggressive than the daily treatments of a drug called Mucomyst he had been receiving to break up the meconium. It had almost been a week and his tummy was still swollen, which is why they went ahead and took the next step.

In other news, I’ve been home for two days with Laila. I had Eli and immediately got a cold or upper bronchial thing, landing in urgent care Monday. They gave me some antibiotics and I vowed to stay away from the hospital and all the sick babies until I felt better. That being said, I feel so much better today so will definitely go tomorrow. In the mean time, Chris and Mark have been hanging with Eli. Laila needs me too, and it’s been nice to stay home with her, watching “Cinderella,” doing crafts, etc. The only reason I was able to write this today was an early Christmas present for me: a rare, 3-hour nap. Here she is in her Christmas jams:

Laila. To get her to look at the camera, I said Santa Claus was on my head. Don't judge.

Laila. To get her to look at the camera, I said Santa Claus was on my head. Don’t judge.

Laila and her typical no-expression camera gaze.

Laila and her typical no-expression camera gaze.

 

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4 thoughts on “An update for 12.12.12

  1. Aunt Cheryl and Uncle Ronnie says:

    Sounds like complicated but good news. I stand in awe of doctors who can work on teeny tiny organs with miraculous results. Permit me a high five holla for the ultrasound tech and the rad techs no doubt involved in those procedures you describe so well. In my day, I have done a few itty bitty GI exams. Also, way to go Eli for removing nasty old tubes! You don’t need no stinkin’ breathing tubes! Yay,baby! Way to keep the staff on their toes!

    Like

  2. Amy says:

    Thanks for writing this. We are thinking about you all and praying for a speedy healthy recovery! Love you!

    Like

  3. Thank you so much for these very moving posts about your new son. We are keeping him, you laila, mark and you family in or thoughts and prayers

    Like

  4. Thank you so much for these very moving posts about your new son. We are keeping him, you, Laila, Mark, and your family in our thoughts and prayers.
    ( Sorry about the redo. Not very good on doing this yet.)

    Like

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