Big Man on Campus

As of a couple of weeks ago, Eli is the oldest baby in the NICU. While he is by no means the biggest, he has heartened us with his recent exponential weight gain. I was going to write a special post in honor of Eli's arrival at 4 lbs. (see the evidence below!). However, the little chub has given us yet another reason to celebrate today.

Eli has been transferred from Room Two, which has has been his home for the past two-and-a-half months, to the much lauded and sought-after Room Three, otherwise known as step down! (Here's a picture from Eli's last few moments in Room Two with two of his very favorite nurses, Gisela and Liberty, and Michelle, one of his respiratory therapists).

The step down unit is for babies whom the nurses and doctors call "feeders and growers". These babies need less intensive care, so the atmosphere is more relaxed with fewer alarms, dimmed lights and more parental participation. Finally, we are able to hold Eli without first asking permission. What a welcome change!

Paul and I are beyond thrilled at Eli's rapid progress this past week and are hopeful that the end is in sight. We set up Eli's crib today, so it's all ready for him whenever he decides he's ready. He's the boss, after all.

Rock-a-bye Baby

Eli's Biggest Leap Yet

After three failed attempts over the past month, Eli's doctors successfully removed his breathing tube this week. Eli reacted with a bit of fussiness but nothing resembling the distress he showed during the previous tries. Breathing tubes, as we've learned, are life-sustaining for premature babies, but they're also damaging to their narrow and delicate airways. Having Eli's removed is a huge relief!

Eli has become the talk of the NICU. The 11 weeks he's spent there gives him the longest tenure of any baby currently in the unit. The nurses all know him by now, and many stopped by in the last few days to watch him breathe without a ventilator and to cheer him on. "You're such a big boy, Eli!" they'll say. Or, "See, Daddy? All he needed was time."

Eli now breathes with the barest assistance of a nasal cannula. Initially, doctors gave him a more cumbersome nasal device known as CPAP (continuous positive airway pressure)—and he hated it. It had a bulky crossbar, it scrunched up his nose and the entire apparatus had to be Velcroed to a hat on his head. But that lasted only a few days. Eli quickly showed he was ready for the least intrusive breathing aid of all.

As if all this weren't enough, Eli (with help from his wonderful nurse Gisela) had one more trick in store: He began bottle feeding. Just a few sucks at a time, not a whole bottle at once. He still does most of his eating through an oral tube. For now.

CPAP 101

In case anyone wants to see what, exactly, CPAP looks like, here is a picture of the rather space alien–looking device:

It looks horrible and Eli, like lots of babies, HATES it; in fact, it is my firm belief that he taught himself how to cry during one of his three previous extubation attempts. But it is a vast improvement over the invasive ventilator tube.

He Didn't Learn This in Milwaukee!

As everyone who has met him knows, Eli exudes sweetness and charm. But he's also a native New Yorker and, like all of us, he has his moments, shall we say. Hence the gesture below. It must be in the genes. :-)

The Ides of ... April

Well, it turns out Eli did need the eye surgery after all. When we arrived at the NICU yesterday, we ran into one of the doctors at the elevator bank. We asked how Eli's eye exam had gone and she asked us to wait a moment. She disappeared into Eli's room and reemerged bearing a yellow post-it with the pediatric opthalmologist's cell phone number on it. We assumed, correctly, that this wasn't good news. When we anxiously called him a few minutes later, the doctor told us the condition in Eli's eyes had worsened enough to warrant immediate surgery; he planned to operate that evening.

I'm very happy to report that the surgery, according to the doctor, went very well. He expects the condition to stabilize and then recede within 3 weeks or so. We hope his prediction this time around is better than the last time.

It's hard not to feel like we've been kicked in the gut on this one. According to statistics, about 50% of babies in Eli's gestational age and weight group develop retinopathy of prematurity (ROP). Of those, only 6% progress to the point of needing surgery. One of our neonatologists told us the unit averages just 6 cases a year. That said, we are told Eli should recover almost completely. The surgery will cause a small loss of peripheral vision, but it will not be significant or life impairing: he'll be able to ride a bike and drive a car. And it sure beats the alternative. Anyhow, please keep our little guy in your thoughts and prayers. He needs everyone pulling for him.

By the way, has anyone noticed that Eli is now over double his birth weight? El gordito (the little fat one), Paul likes to call him.

All In a Week

Eli's had some week. On Tuesday, a week after being diagnosed with Stage 2 retinopathy of prematurity, a condition that could require laser surgery, he underwent another eye exam. Blessedly, the ROP hadn't progressed, and the opthalmologist told us surgery was now less likely.

On Wednesday, Eli was seen by an ENT, who placed a scope down his airway to look for blockage. She found swelling around his vocal cords and a growth of scar tissue--both effects of his breathing tube. Which made us all the more hopeful that when his doctors tried, for a third time, to take Eli off the respirator that day, he'd be able to manage without it and breathe with assistance from a less-intrusive nasal device known as CPAP.

The nurses in the NICU like to say of the babies, "He's the boss" and "She's the boss." Well, by day's end Eli's orders were clear: He wasn't going for the CPAP. Even harder for us than receiving that outcome was watching him struggle to breathe without the respirator. He writhed, wheezed and faintly (but not tearlessly) cried for hours until the overnight doctor decided to reintubate him. We'd gone home just before 11 p.m., when Eli was still on CPAP. If he could make it through the night, we thought, maybe he'd get used to breathing without the respirator. Around midnight, just before bed, Stephanie called in to see how he was doing. That's when we learned he'd been reintubated. So much for a restful sleep.

Then came Friday, when, just in time for a visit by Grandma Camille and Grandpa Bill, Eli began retracting heavily while breathing. His doctor ordered chest X-rays and a transfusion. The nurse changed Eli's position and gave him his pyhsiotherapy, tapping on his torso with a rubber-headed instrument to try to free any mucus that may have collected in his lungs. The X-ray results arrived in late afternoon. They showed a partial collapse in Eli's upper right lung. This may sound grave, but it's actually a common occurrence that tends to rectify itself. Mommy, Daddy and grandparents exhaled and went to dinner a couple of blocks from the hospital. When we popped in to see Eli afterward, his lung had reinflated. A peaceful sleep, for him and us, at last.

I'm Too Sexy For My Hat

Eli adores his new hat, lovingly knitted for him by my colleague, Nancy. He's growing so fast that I think he will be out of it in a matter of days though! I'm glad I got these photos so we can enjoy it while it lasts. :-)

Three's a Crowd

I'm sure I've mentioned in these pages what a good eater Eli is. Well, not wanting to be subtle about it, Eli blew right by 3 lbs and, in just two days, is now 3lbs 5oz!! Just look at the size of his chubby little hands and feet! His nurse thinks he might be retaining water a bit, but at least some of this impressive gain must be due to pure, unadulterated fat. Now there's a whole lot more of him to love. :-) Let's all join him in his gluttony and have a big piece of chocolate cake to celebrate. With lots and lots of frosting—I get the flower!

Weight-ing

Eli's job, first and foremost, is to eat and gain weight—it's nice work if you can get it. Today, he gained an impressive 80 grams (3 oz), and is knocking on the door to 3 pounds! For awhile there he was all belly, but now it looks like his arms and legs might actually be catching up; his hands and feet no longer look too big for his body. The other day, our friend Nikki (of Clementine fame) and I were laughing about how every former preemie we hear of is over six feet tall and on a basketball scholarship while simultaneously working on a PhD in micobiology. Fish story or fact? We may never know, but if Eli keeps gaining like this he could very well become the subject of such a story. Or perhaps he is suited to a career in sumo wrestling. :-) Keep up the good work, Eli!

Waiting

Sometimes it's hard to find the time and energy to write, but I realized that I'd better post something because we were starting to get nervous inquiries. We're all doing OK, though Eli has been having some trouble getting weened from his ventilator. They've made two unsuccessful attempts so now they will bring in a pediatric ENT to evaluate the situation, probably sometime next week.