Back at Children’s Memorial

After four days away recovering from a cold/mystery illness, I’m back at the hospital again. It feels so good to be here. Eli’s ongoing issue with a central line, I learned last night, actually wasn’t resolved as I thought/was told. So for once and for all (I hope), he went to the operating room this morning so his surgical team could place a line from his clavicle area to about one centimeter away from his heart. Through this line he receives nutrition and medicine. This is a relatively small procedure, I’m told my my nurse anesthetist sister Laura. However, no procedure feels small when it’s your one-week-old baby being put to sleep with gas and that Michael Jackson drug. She totally understands this, too. I’m just glad she has the perspective to temper my freak outs. I’ll write more about this line business once I talk to the surgeons later. He came out of the procedure wonderfully and the line is in place.

Here we are at the hospital on 12.1412.
Here we are at the hospital on 12.1412.

The plan today is for an X-ray to see whether the contrast dye from the enema procedure of the other day moved on out, and for him to be given a little Pedialyte. Eli is rooting around like crazy, chewing on his blankie, looking for real food like a desperate little man. If he tolerates the Pedialyte and it is properly absorbed by his intestine as it moves on through, they’ll next give him a little breast milk. I’m not sure about a timeline on that next step, but I hope it’s soon. He wants to eat like any new baby does. In poo news, his poo is coming out his tummy bag brown instead of green meconium. That could be a sign that months of meconium build up is all cleared out, but I’m not really sure. It’s a good sign, whatever the reason, the nurse practitioner said. Twice so far, when I’ve gotten an update, I’ve recorded the conversation. I explained that I’m a journalist by trade, I like to learn, I forget everything medical as soon as I’m told and I like to keep detailed notes on my own kid. Taking notes of any kind is completely weird for any normal social interaction to be sure. This is an odd situation, though, and mommy, like all journos, is a little goofy, so she doesn’t really care if people realize it, since it’s true.

I thought I’d share a few pics I snapped around Children’s Memorial at OU Medical Center today. It’s a beautiful hospital. I didn’t have time to grab breakfast so I found the Ronald McDonald House family room, where the eats are free. It’s only a floor down from Eli’s room and it is so peaceful. The hospital cafeteria, on the other hand, annoys me. I don’t like the food and it’s hard to find anything healthy. In the Ronald McDonald room, you can make cereal, toast, sandwiches, etc. They even have organic milk, which I’m a stickler for. Laila, Grandma Chris and Mark can eat here too. Laila and Grandma swung by this afternoon so Chris could see Eli and Laila could play here. Laila loved it and didn’t want to leave. Santa Claus stopped by to see her, too. She is obsessed with Santa but got a little tongue tied when he appeared out of nowhere to say hello and ask what she wanted for Christmas. She whispered “Dora’s house” in the smallest voice I’ve heard out of her in a while.

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An update for 12.12.12

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.

 

Eli’s first T-shirt

Poor baby finally got to put on some clothes after bearing a lot of indignity with people messing with his bum and guts for days on end. He’s not so sure about clothes. Here are the photos.

Eli's first T-shirt.
Eli’s first T-shirt.
I don't like it, ma!
I don’t like it, ma!
Boo!
Boo!
Clothes are so meh
Clothes are so meh

Eli's T-shirt

Giving us a cheeky 'smize.' He likes the blanky better.
Giving us a cheeky ‘smize.’ He likes the blanky better.




This is Eli

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This is Eli.

Eli’s my baby boy, born on Dec. 5 to Mark and I in Oklahoma City. Within 24 hours, he needed emergency surgery to save his life. He had a chopper ride followed by surgery Dec. 6 to fix his little digestive system, which didn’t develop quite right. I think the color returned to my face today so I decided to start writing.

Usually when disaster strikes I’m in a newsroom. Eli is no disaster, though. A baby born to two loving parents never could be. He’s just had a bit of an ordeal for someone so young. I hope he doesn’t turn into a baby cynic, thinking this world totally blows. I digress, but his ordeal struck about 14 hours after he was born. I guess I’ve decided to report on it. The last few days have been a blur and I want to remember.

I had one of those uncomplicated lovely pregnancies with a big, round, endearing belly, followed by a glamourous, drug-addled labor during which I felt no pain.

Three days before Eli arrived, hanging out with my daughter, Laila.
Three days before Eli arrived, hanging out with my daughter, Laila.

Here I am in heavy labor feeling nothing at Mercy Hospital. I put on some make-up for the camera while Mark tried to arrange the delivery of a washer/dryer on the phone with Sears. Then he took my photo. Image

There was a woman down the hall screaming in pain. This made me grateful for modern medicine.

Everything was peachy as Eli made his debut, around 2:15 p.m. It’s surreal and wonderful to finally meet the baby you’ve been lugging around all those months. Mark and I immediately fell in love with the little guy.

This is Eli right after making his debut.IMG_2735

I’d say next, the poo hit the fan, but in his case, it really didn’t. That was the problem.

We sent him to the nursery around 10 p.m. to grab a night of shut eye. Eli started spitting up. Gooey, bile-y liquid was backing up his throat, making him choke. The nurse suctioned his tummy, sent him to the NICU and awoke mom and dad.  That was 4 a.m. His bellow was distended, meaning swollen. These weren’t great signs for a young digestive system. The nurse was talking fast. She wasn’t panicked but she wasn’t calm either.

They took X-rays that showed a swollen small intestine, which is the twisty part of the gut the stomach empties into. A doctor was going to order various tests at Mercy to help pinpoint a cause but I instead had Eli transferred to Children’s Memorial at OU Medical Center. Mercy was wonderful with his delivery but they lack a pediatric surgery team. If there was a remote chance he would need an operation I wanted him to be in the right place.

Chopper nurses in black jump suits appeared and put Eli in a giant, sterile baby Easy Bake oven thingy. They gave him a teensy blanky for the ride over. I don’t really remember what I said or did at this point, except experience every symptom of a sloppy freak out.

Dec. 6 was a bad day for Oklahoma babies. Eli was by far not the sickest baby in the state, so his chopper transport took a while. Transport teams took five babies from far flung corners of Oklahoma into the Children’s Memorial NICU that day, which constitutes as a very busy day, the nurses said. Eli arrived mid-afternoon. I sent Mark home to shower because I would be going home for the night (so I thought) and he would be coming back. Also, we missed our daughter, Laila, who is 2.5. Mark headed to the park first, where she was with grandma, to meet her. About 30 seconds after he left, a team of surgeons came in to check Eli out.

eli

They looked at his X-rays and said “Screw the tests, we want to operate on him right away.” That was said in smart-people surgeon talk, I’m just paraphrasing here. It really didn’t matter what they said, because alll I heard was “cut my baby open” and I fell apart. Mark came back. I spent the next few hours roaming around the hospital, a postpardum mess, still tuck with IV tape, Percocet coursing through my veins, flinging snot and tears every which way, etc. etc. I called my sister and said something about how I drank too many pumpkin spice Starbucks lattes, obviously, which were poisoned and I have now killed my baby with high fructose corn syrup and caffeine. I was orbiting a disaster moon unaware of the rest of the solar system. Along those lines, I don’t remember what Mark was doing other than being supportive and freaking out outwardly much less than me. Emotionally, I felt like I’d been beaten with a bag of rocks and glass. I looked like it too. So much for the baby-mommy glamour shots to go along with my perfect pregnancy and labor!

During Eli’s surgery, a nurse put us in a private waiting room. I took this as a disastrous sign that we would need somewhere private to hear the horrible news. During his surgery we both stared at the wall and expected the absolute worst.  My innards were a big ball of doom.

We did not get horrible news. He handled the surgery quite well.

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I won’t get technical here but Eli’s small intestine (the one connected to the stomach) didn’t move meconium (tar-like poo that babies make while they’re in mom) like it should. His small intestine swelled and backed up his whole system.  That left his colon underdeveloped.

Surgeons separated the small intestine from the large intestine (aka his colon). They arranged each end to poke out of his belly. Later, they bagged each end end and begin to flush out his small intestine. The idea is, once he heals, the swollen, cleared-out small intestine will shrink and the underdeveloped colon will grow. He’ll need a second surgery to reconnect them.

That’s about all the mental energy I have for descriptive writing now.

I have zero perspective on my own experience and will probably wince at every word I’ve written in the future. Oh well. Writing helps me process and reflect on things.

I’m at the hospital today and Eli is asleep.

Here we are today. We are both doing so much better. I’m just happy I get to hold him again, because I love my baby and am obsessed with his cute face and teeny sounds.  I had the nurse take a pic.

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