I Feel Good

Eli was particularly squirmy today. The reason became clear when a run-of-the-mill diaper change turned into an especially explosive situation (I will spare you the photos). In interest of decorum let's just say that the nurse had to give Eli a full-body sponge bath and change not only his diaper, but also his entire bed. And Mommy had to scrub her hands pretty thoroughly too. Oh boy! As you can see by these aftermath photos, Eli is feeling much better now. :-)

Eli Unplugged

In true rock star fashion, Eli "went acoustic" for a few seconds yesterday. Although it only lasted a brief moment, it was amazing to see his sweet face for the first time. We think it's quite cherubic and we're immensely happy to be able to share it with you.

Monkey See, Monkey Do

Eli's Isolette has gotten a little sprucing up thanks to his Auntie Mara, Uncle Chuck and cousin Dottie. He is very fond of the parrot (Hawkney and Shosi are thrilled) and the lion, but he wasn't so sure about the monkey, it seems. :-)

Oh my darlin'...

Yesterday, we said goodbye to our other favorite baby in the NICU, little Miss Clementine. We have grown quite fond of our wee friend, and of her parents, Nikki and Jason, and we will certainly miss them in the NICU (though we have already started to plan play dates!). Clem was born exactly one month before Eli at almost the same gestational age and weight. We are hopeful that one month from now we will be heading through that exit door too.

Daddy Kangaroo

A number of you have asked me what it's like to hold Eli. The short answer is, Wonderful. The long answer is, of course, a bit more complex. Initially, it's scary, because for a nurse to move Eli from his incubator to my chest requires disconnecting his ventilator for a half a minute or so. He can breathe on his own, but not nearly as well, and by the time we nestle him into my arms and drape a blanket over him his limbs can feel limp. "Breathe, Daddy," the nurse will say to me, seeing how stressed I've become. Thankfully, once the ventilator has been reattached (and taped to my arm or shoulder), Eli's breathing picks up and the strength returns to his body. At this point, dad and son settle in for some great one-on-one time and I'm flush with the singular joy of a new father holding his little child for one of the first times.

The Thinker

Like most new parents, Paul and I are convinced that our little Eli is among the most beautiful and miraculous creatures alive. Now we are sure he is among the smartest too. We wonder what he was thinking as he struck this pose. Most likely, he was pondering his recent diaper change. But maybe, just maybe, he was devising a solution to the world economic crisis.

Getting Bigger

Adjustments

I was struck the other day by how accustomed Paul and I have gotten to the strange and unnatural world of the NICU. It hit me when seeing the expression on a friend's face when she was visiting Eli for the first time. An alarm started beeping, signaling Eli was "desatting," a fairly common occurrence in which the level of oxygen in his blood drops slightly. I stood by calmly as one of the nurses, equally calmly, repositioned Eli and fiddled with a couple of dials, boosting his oxygen back to normal. My friend looked as if she were going to have a heart attack. For a moment, I was taken aback; then I realized this must be what I used to look like during our early days in the NICU. Back then, it seemed impossible that we could ever get used to this environment of incubators and bleating round-the-clock monitors in which we have to ask permission to hold our baby. But, somehow, we have.

I now understand the fear that reappears in the eyes of other NICU parents we've gotten to know when they're told, suddenly in some cases, that their babies are ready to go home. I realize how scary it will be when there are no monitors, no alarms, no highly trained doctors and nurses watching Eli's every breath. It will be a major adjustment, albeit a joyous one. And it's one I'm certain we can make, because if we can get through this we can get through anything.

A Day in The Life of Eli

Eli's Army

The Internet, sadly, may be killing newspapers, but it's sure connecting us to all of you. On this thankfully light news day (see Steph's post below), I'd like to say a word about the blog. When Stephanie started it during her pregnancy, in the cheeky voice of our unborn baby, we of course had no idea that months later it would become a daily chronicle of our premature son's health and our attendant fears and joys. Or that it would produce a wellspring of support for Eli in places near and far, including from people we haven't seen in years or, in some cases, have never met. Your positive energy lifts us, and even without consciously trying, we pass it on to Eli every day. Although we'd never choose to be in this situation, there are some wonderful benefits to going through it. Realizing what a wide support group we have is certainly one of them.

My Baby Things

Check out the new duds Grandma Cam and Grandpa Bill gave Eli. Believe it or not, this onesie is almost too small for him! I think it might fit him for only a few days. Oh well—it was worth it to get these photos. Normally, the nurses don't allow the babies to wear clothing unless they're big enough to be in an open crib (as opposed to the Isolette Eli resides in). But Anna, his nurse today, was kind enough to let us give it a try. As it turns out, Eli liked it so much he got to wear his outfit for the entire day. :-)

1,000 Grams!

Eli hit a benchmark yesterday: He now weighs 1,000 grams! According to another mother who was there at the time, the nurse who weighed him applauded when she looked at the scale and saw the four-digit number. Maybe it's just the power of suggestion, but Eli does all of a sudden look bigger to me and Paul. And though he's always been active, he seems more interactive than before. Doesn't he seem like he's playing in this series of photos? He must be getting ready for Grandma Cam and Grandpa Bill's visit tomorrow.

The doctors officially have ruled out pneumonia and stopped the antibiotics. Though Eli still has some collapses in his lungs, the doctors have steadily been weening him off the ventilator. I have a feeling it won't be long until he graduates to CPAP (nasal oxygen). We are looking forward to that day because then we will finally be able to hear his voice—the ventilator prevents Eli from making any sound. All in all, it was a great day—such a great day, in fact, that Eli's nurse, Anna, decided to let me hold him again. I'm hoping this will become a daily event!

Looking Good

Well, two Neonatologists and the head of Pediatric Radiology concur; it does not look like pneumonia! The blood cultures won't come back back for a day or two, but they are fairly confident in their diagnosis which makes us feel quite relieved. Eli has already stepped down on his ventilator settings from yesterday and seems to be doing well on them so the chest physiotherapy must be helping. He also got a third dose of Grandpa Bill's blood last night and seems to be feeling much better for that as well (he had been a bit anemic). Despite all that happened yesterday, in an amazing feat, Eli also topped two pounds today! Now, keep in mind that at least part of this weight gain must be attributed to the IV which is newly attached to his arm, and that blood transfusions usually result in a gain, but still, he's getting there.

Steps

It was another tough day in the NICU yesterday. The phrase "one step forward, two steps back" certainly applies. We went in to see Eli expecting that I'd get my turn to hold him again, only to see his ventilator settings had been increased significantly. This has been the trend over the past few days. I have tried not to worry but, of course, that is pretty difficult. Paul and I and our sister-in-law Melissa, who generously drove up from Philadelphia for the day to be with us, help around the house and see Eli, spoke to the doctor about Eli's condition. Concerned about Eli's breathing, the doctor ordered a chest X-ray, even though the one Eli had on Friday was completely normal.

This is one of those moments when you're reminded that, although medicine is a science, opinions can differ greatly when interpreting the data: The doctor thinks he sees another small collapse in the left lung, while the radiologist believes Eli has pneumonia. Although both scenarios sound scary, neither is an unusual development in preemies. Still, we'd like to think that our preemie could sail through without these complications--especially after having a string of trouble-free days.

To cover all bases, the doctor decided to treat both pneumonia and a collapsed lung, or atelectasis, as he called it, using a medical term we'd never heard before (this experience is an education in many ways). The staff started Eli on a course of antibiotics, which means he will have to have an IV put into one of his arms again and have that arm partially immobilized (understandably, he hates this). They also began doing physiotherapy on his chest again, tapping it firmly and repeatedly with a small rubber hammer to free up any mucus and reinflate his lung. The nurses told us we should start to see results almost immediately. We hope they're right.

Lights, Camera, Action!

Daddy Kangaroo Care

It was Paul's turn to hold Eli today! Eli seemed to love snuggling with his daddy, and Paul looked like a natural father; it made me feel really good to see him bonding with our son. It's only a matter of time before Paul and Eli will be going out on father and son golf outings!

Barriers to Entry

The term barriers to entry entered the lexicon some years back, and most often it's used in a business sense. People refer to industries in which companies need a lot of capital to get started as having a high barrier to entry. The same can be said of professions, such as law or medicine, that require a rigorous advanced degree. But as parents of a child in the NICU, the barriers to entry that Stephanie and I face every day are physical not metaphorical. Let me explain. When we arrive at the unit, we come to a locked security door. We can see through a window into the unit, but we can't get inside until we press a button and get buzzed in. Often the receptionist is away from her desk, meaning there's no one around to let us in. So we wait until the receptionist returns, or until a nurse or doctor walks by, presumes that we're parents eager to see our baby and swipes his or her ID to unlock the door.

Once inside the NICU, we encounter more barriers. We hang up our coats, stash our shoulder bags in a locker and begin the process of scrubbing up. We wash our hands, scrape the dirt out from under our nails, dry our hands and apply disinfectant. Then we pull on a gown, often struggling to squeeze our arms through the narrow ribbed cuffs. And then, finally, we go into Room 2, where Eli has resided since he was born nearly four weeks ago. There we encounter more barriers: a nurse who may be busy administering to him, the plexiglass walls of his incubator, or Isolette, as it's called, and, finally, after we reach in through the portholes to touch him or change his diaper, the tangle of wires and tubes to which Eli is tethered.

Mind you, I'm not complaining about any of this—the nurses, as Steph has said, are angels, and the state-of-the-art medicine is a godsend. I'm just trying to describe what we go through. Today, however, with the help of Liberty, a wonderful nurse, and Nori, the nurse supervisor, we were able to penetrate every last one of these barriers: Stephanie got to hold Eli against her bare chest for the first time, mother to child, skin to skin. The nurses wrapped a blanket around Eli and Stephanie to form a kind of pouch. This is called kangaroo care, and studies suggest that it offers great benefits to both child and parent. Judging from the expressions on Eli's and Stephanie's faces today—pure, unbridled love—I have no doubt that's the case.

Liberty!

Eli was liberated today—Finally I was able to hold him! A common expression in the NICU is "he's the boss"; well, his now favorite nurse, aptly named Liberty, decided that he was showing signs that he was ready. It was an incredible moment, one that words fail to describe. For almost four weeks, we had waited to hold our little boy and the wait, at times, was excruciating. We had watched other parents holding their babies while ours remained behind plexiglass. Our turn has finally arrived and we are overjoyed. Daddy is next!

Special Teams

One of the funniest "opera fan" moments I've had was when I walked out of the stage door after a performance of Siegfried. In that opera, like all of the other members of The Ring Cycle, I play only sporadically. Consequently, I get to shuttle in and out of the pit quite frequently; I come in, play about four notes, and then leave for upward of 45 minutes at times. It's a nice job if you can get it. On that particular night, I was rushing to get home when I encountered a breathless very enthusiastic man (obviously a sports fan too) who said "Hey, you're the piccolo player, right? You're like special teams!" The confused look on my face must have betrayed my ignorance of the finer points of football so he went on to explain, "You know, you come in, kick a field goal and leave!" A more apt description of my job I had never heard. I have used the analogy ever since.

I believe Eli is also practicing for a career in special teams. He absolutely loves to kick (see the photos in the previous post as well); he can hardly stay still. I'm a bit worried as to what this means for when he comes home! :-)

First Outfit—the Results Are In!

Another up and down day, this time, for a different reason. I asked the head nurse, Nori, if I could hold Eli today. First she said yes. Then she said no. Then she said yes. Then she said no. You get the picture. After watching his oxygen saturation go up and down several times, she finally decided that Eli is just too unstable; she didn't want to risk taking him out of his isolette. She did kindly offer us a compromise and agreed to open up one side of the isolette so we could kind of cradle him in our hands. First, she asked that we dress him in this hat and booties to keep him warm. I don't think he minded that they were pink (those of you who voted for pink as his first outfit on the blog poll were right!! :-) and neither did we because he looked ridiculously cute. I think he enjoyed the session as much as we did. We stayed like this for about an hour and a half and he seemed to have fewer desats while we were holding him. He was wide awake for most of the time too. It was really something. Nori said we can check again on Friday about the prospects of holding him.

By the way, did you happen to notice that quickly sprouting head of hair in the first photo? I think we might have another blondie in the family!

A Better Day

Eli was much better today. Though he did have a few desats while we were there, it was nothing like yesterday. We spoke with his doctor, Dr. Paley, who very kindly gave us 30 minutes of his time. He showed us an X-ray and pointed out that Eli had some fluid in his lungs. Dr. Paley said that he had started Eli on a diuretic to help clear that up. He also noted that Eli had his fourth, and final, head ultrasound today which he passed with flying colors.

We also asked Dr. Paley when we might be allowed to hold Eli. This being three weeks to the day since his birth, it is getting tedious to only be able to touch him through the isolette portholes. Dr. Paley said he would speak with the charge nurse so we are very hopeful that soon it will come to pass. :-)

Roller Coaster

Eli gave us a little scare yesterday. He was "desatting" all day (that's when the percentage of oxygen in his blood drops) and he had at least two bradycardias (when his heart rate drops sharply). His doctors and nurses tell us the bradies are usually caused by Eli forgetting to breathe; they say it's a normal symptom of prematurity. The nurses all remain so calm, but as a parent that's hard to do when the alarms are going off, literally, left and right. Also, through reading, we've learned that bradies and desats can also be a symptom of infection or other respiratory problems. So that doesn't help with our level of calm.

Back home after having spent the stressful day in the NICU, I decided, at about 9:30 p.m., to call in to check on Eli (the unit encourages parents to do this). Eli's nurse for the night, Julie, told me his condition remained the same and that she'd just alerted the attending doctor, who was considering at that very moment whether to do a complete blood count (CBC). While I was on the phone, the doctor decided to go ahead with the test even though one was ordered for the morning. Julie told me if I called back at 11 p.m. she would have the results. When 11 rolled around, I called, but Julie was busy doing an X-ray (on our Eli, it turned out). She finally called me back at 11:30 to say that the CBC had come back normal, indicating Eli had a good red blood cell count and no infection. They were just waiting for the X-ray results. More breath holding, but, fortunately, this time only for 15 minutes; I called back and learned the X-ray was normal! Finally I could sleep soundly.

They told us there would be days like this—"It's a roller coaster," we keep hearing—but it's hard to imagine when Eli is sailing through day after day with no major problems. Yesterday is not what you'd call a "setback," but it sure was stressful. He's still very small, and we just have to keep in mind that most of these kinds of things are normal parts of development. After all, he was supposed to be immersed in amniotic fluid at this point, not having to breathe on his own or really do anything except grow.