Lucas Camilo

Early this afternoon Lucas’s breathing tube came out for his third attempt at extubation.  A few hours later, the tube was back it.  Once again it was not to be.

It’s hard not to be disappointed, but as we sat and held Lucas’s hands this afternoon we told him that our tears weren’t because we were disappointed in him.  In fact, we told him, we were proud of him, proud of how hard he tried to keep his breathing going even when his little body clearly wasn’t up for it.  To see him heaving with all his might, his face contorting with discomfort, was almost too much to bear.  We told him that we felt bad that we had decided to try extubation again, but that he deserved the chance and that obviously he wanted as much as anyone to have that tube out of his throat.  Unfortunately, though, he’s not ready.

As we spoke to him this afternoon, his eyes opened up and he looked a bit relieved to have the vent breathing for him again.  He had been working up to the extubation for 3 days now, and had gone the last 15 hours straight on the ET CPAP mode, which means that for the whole last day he was basically breathing on his own with a little extra pressure.  As he stared at us we told him that there were going to continue to be a lot of ups and downs along the way, and that we were going to be right by his side the entire way.  Because we believe in Lucas, and this afternoon especially, we’re overwhelmed with the emotion of how much we love him.

We understand that lots of people have been checking Lucas’s blog the past few days and hoping to see news of a successful extubation… and so we apologize for keeping you in suspense.  The truth is, we’re in suspense ourselves, nervous about what is to come and therefore consenting to minor procedures that lead to delays, but which will help give Lucas the best possible chance at breathing on his own when the time comes.

Today he continues with his CPAP trials, breathing for two hours with assisted breaths from the vent, followed by two hours of initiating his own breaths (aka the ET CPAP) with some additional air pressure through the tube.  He’s doing fine so far, and starting tonight they’ll let him go for a day on ET CPAP mode before likely pulling the breathing tube tomorrow.

Among the things delaying him are a blood transfusion – since his platelets were a bit low – and continued monitoring of the pressure in his brain due to excess fluid.  After an ultrasound yesterday, the doctors seem confident that the pressure is subsiding and that his hydrocephalus is at least stabilizing, if not decreasing.  This is good news.

As he waits for the big extubation, Lucas is preparing for another big event: the NICU fashion show.  He’ll be competing in the ambiguous gender category, and is an early favorite by most accounts.

Lucas had a stellar weekend as he geared up for what promises to be a week full of challenges and growth. His latest ET CPAP trial (check out this previous post for a description) is going well so far, and the respiratory techs, not to mention his nurses, think he’s ready for the next, big shot at extubation. They’ll keep doing the CPAP trial over night, and if he keeps up the good performance, the tube will come out tomorrow… or maybe Tuesday if his parents get nervous and decide to give him another day of practice.

In addition to some visits from friends, we also met with an amazing baby massage therapist this weekend who taught us some techniques for gentle massage with Lucas. We also got to chat for a while with a former NICU parent who had advice and support to offer, both of which we’re happy to take.

Meanwhile, one of Lucas’s preemie comrades down the hall is struggling a lot today. We’re holding Alex and his family in our hearts as they tackle his latest challenge.

And finally, we’ve got another video to share for all of Lucas’s little friends on the outside who love to monitor his wiggling progress through video.  (Thankfully, we cut out the segment of Lucas pooping midway through a diaper change.)

Our friend Tom Ricker wrote and recorded this excellent song yesterday while thinking about Lucas. The little guy perked his ears up when we played it for him this afternoon, so we figured that meant he wanted us to post it on his blog.
[audio:keep_on_growing.mp3]

Lucas had a quiet but good day on Friday: some holding, a bath, a new purple, flowered gown, and story-time with new Bread and Puppet books.  The ultrasound and tape measure show no more  head growth, which is comforting; meanwhile, Lucas is looking forward to meeting new friends over the weekend.

Below is part 2 of Mary Jo and Michael’s guest blog (part 1 is here).  Needless to say, it brought tears to our eyes.

Reflections on a Visit to the NICU (continued)

In the NICU, the almost-constant bedside sentries are Krista and Burke.  We thought we understood how important it was for them to be present, but we didn’t fully appreciate their role until we could observe it for several days.  Doctors and nurses change routinely and have multiple patient responsibilities, and specialists, who have no prior contact with Lucas, are called in for evaluations and procedures.  In this changing environment, Krista and Burke are the source of continuity and themselves constitute a “medical record system” that supplements the computers and, in some sense, is more inclusive and every bit as important.  It is instructive to watch and listen as Burke or Krista patiently corrects or updates the doctors and nurses who have forgotten or overlooked some piece of information or whose computerized records have not yet been updated to match Burke’s or Krista’s memory; as they describe Lucas’ most recent activity and their qualitative evaluation of his condition; as they ask quiet questions about possible inconsistencies or rival advice from different doctors and specialists; as they react calmly and tactfully (and sometimes not so tactfully) to miscommunications and misplaced advice.  They listen carefully, ask cogent questions, read available resources and, with alert perseverance, absorb the details, the context and the flow of NICU events, all of which allows them to evaluate the medical advice and the requests for consents to procedures with increasing knowledge, poise and confidence. It is impressive to watch and observe; the descriptions of medical information in the blog, while impressive, do not give complete justice to the process and the command that Burke and Krista have achieved.

Equally impressive is the nurture, large and small, Lucas receives from his parents.  One or the other will quietly steel away an place a hand lightly on his torso or his head when he is sleeping, reassuring him through the blanket that they are present and he is secure; sometimes they will unwrap him and touch him to give him the extra comfort of skin on skin.  When he is awake, they lead him through his calisthenics, stretching his arms and legs and getting him to grip and pull on their fingers.  A favorite image is Krista, her face three inches from Lucas’ face, his eyes appearing to watch her intently as she strokes him and talks and sings to him.  Burke does the same, and sometimes reads to him from the Washington Post, and sings (though not very well).  All of this, of course, is calculated stimulation designed to strengthen muscles and prompt more brain and neural activity.  And you have to believe that these small acts of love, commitment, devotion and persistence (they never seem to tire) are felt by Lucas and are as important to his progress to recovery as the other more clinical actions.

One afternoon, we threw Burke and Krista our of Room 638 and they took a much deserved hike.  We were left alone with Lucas and all of the machines and monitors.  At one point, lights flashed and alarms went off…and our own “unmonitored” vital signs went slightly haywire.  What was happening to Lucas?  Were we responsible?  Nothing and no were the answers; a temporary faulty connection was the culprit.  During this time, we could also put our hand on his bare chest and feel the effects of the ventilator and his own breaths, hold his head and work his arms and legs.  Mary Jo sang to him (though not very well).  Then we could appreciate Burke’s and Krista’s calm command and experience a small taste of the closeness and affection they feel.

When all is said and done, there remains Lucas at the center.  He struggles.  He improves slowly.  He graduates to milk and to a crib.  He gets prodded, poked x-rayed, MRIed and tested with a frequency that would drive us nuts.  He is getting prepared for another venture off the ventilator.  And, in spite of it all, he continues his rapid rise on the “cuteness” meter.  There is nothing that gives hope like cute.  Although not yet full-term, Lucas has also become a wise teacher.  He teaches us all again about the preciousness and precariousness of life, even one tiny beginning life.  For us this is all the more poignant with the contrast of a dear friend, whose long life is now drawing to a close.  Lucas reminds us that struggle, spirit and hope have an irresistible claim on our emotions and imagination; that to be human is to care; that to be family is to commit with devotion and love and nurturing.  As we watched Lucas and Krista and Burke, we found it impossible not to believe.

– Mary Jo and Michael

Before they left DC earlier this week, we asked Burke’s parents (Michael and Mary Jo, known by their grandkids as Papa and Nonna) to write a “guest blog”, which they graciously did.  It’s a bit long, however, so we’ve decided to post it in two parts.

Lucas had a quiet day yesterday as doctors continue to monitor his hydrocephalus (excess fluid in the brain).  He got another head ultrasound last night, but its unlikely that anything dramatic will happen before the weekend.  His doctors say he’ll be ready for another attempt at extubation by Monday or Tuesday, so next week promises to be a big one.  For now, Lucas continues to enjoy lots of music, with recent favorites including Johnny Cash’s Children’s album and the Nields (when he feels like rocking),  or Latin Lullabies and “Renne and Jeremy” (when he feels like snoozing).

Reflections on a Visit to the NICU

If anyone had told us that we would be “guest bloggers” before August 17, we would have laughed.  But, here we are.

We have just returned from a three day visit to Washington, D.C. during which we spent most of our time in Room 638 of the NICU.  Three days is long enough to be more than a casual visitor but not so long as to become a real part of the NICU routine.  We had the perspective both of inside participants and outside observers at the same time.  Each of us wrote a separate set of observations and what you find here is a synthesis arrived at with minimal (but some) squabbling. So, here are some reflections on this experience.

One reason for our visit was so that Mary Jo could spend part of her 63rd birthday holding Lucas, celebrating his birth and life.  This she was able to do, for an hour on her birthday and then for a bonus two hours the next day.  We had met Lucas when he was four days old.  That first week was very rough on parents and grandparents as he struggled merely to survive.  Seeing him stronger and having him comfortable in Mary Jo’s arms was a welcome antidote to the earlier anxious time.

At the end of that first visit, Lucas had just been transferred to Children’s Medical Center and was setting into his new quarters, a fairly large private room, with a striking view of green fields and trees; a slight difference in his room’s orientation and his view would have been parking lots, buildings and streets.  Inside the room, a monitor extends on a long arm from the wall and the ventilator stands next to his crib; they look like large mechanical storks or cranes hovering protectively over Lucas.  And in a sense they are.  Wires and tubes connect him to the machines, which provide the breathing assistance and record and display all manner of information on blinking monitors (just like on TV medical dramas).  Very nice digs indeed.  And in the middle of all of this, Lucas sleeps peacefully unaware.

It is hard to be around Lucas in the NICU and not to have a sense of irony.  Modern medicine is on display, helping Lucas to live until he is self-sufficient and his mysterious injury heals.  And you see the progress that the machinery has allowed.  He takes mother’s milk (yet through a tube) as his only food; he is able to maintain his body temperature without the incubator heat (graduating to a crib while we were there); from his low point, he has gained more than two pounds; he breathes more often on his own “over” the ventilator; he is awake a bit more now and is more active (but progress in strength and activity is slow).  With all of this, however, and with all of the attending physicians and specialists, there is still no diagnosis of Lucas’ condition or real understanding of its cause.  Many things have been ruled out, which is good, but those remaining possibilities do not seem to fit the observable symptoms, leaving us all a bit at sea.

We felt a certain grateful appreciation that Lucas is being given the time and opportunity to heal himself, but a sense of fatalistic frustration that there is no name that really fits his condition, no real certainty and no magic treatment that will make him better.  And so Lucas himself becomes the most important monitor of his own condition and welfare.  We feel the irony of brilliant medical science and shiny machines coupled with shoulder shrugs when the most important questions are asked.  Another instance of modern life, where increasing knowledge and awareness does not necessarily translate into a capacity for action, change or correction.  And so we all wait.

(part 2 will be posted tomorrow)

We appreciate everyone sticking with us through yesterday’s long description of the “fontanelle tap saga”, and we can sense the frustration you all felt reading about the roller coaster ride that the doctors put us through.  This particular saga isn’t over yet: Lucas will get another head ultrasound today and based on those results – and the 100 time a day that everyone who walks in the room now touches his fontanelle – we’ll decide what to do, if anything, about the excess fluid in his brain before the end of the week.

We recognize that it’s also not always easy to follow our attempts at elaborating the details of Lucas’s medical situation.  We’ve learned a lot about biology, anatomy and medical science in the last 5 weeks, and sometimes we probably write as if all of our friends and family have been along for every stage of the ride (though in a sense you have been through this blog.)  One of the very complicated aspects of the NICU experience is getting to know all the doctors and nurses involved in Lucas’s care.  On the day of the debate over the fontanelle tap alone we were visited by the neonatologists (the team we see every morning during “rounds”), neurologists, neurosurgeons, and geneticists; within each group there are residents, fellows, attending doctors… and sometimes we’re even lucky enough to meet the big cheese from a certain department (though that’s not his/her official title.)  One of these days we’re going to write about all the fascinating and sometimes hilarious characters that we’ve met in the hospital along the way, but we’ll save that for when things calm down a bit more.

The other day one of the many doctors-in-training we see on a regular basis responded to our assertion that nothing should be done about Lucas’s fluid unless we are first consulted:  “Don’t worry,” he said,  “you’re one of the most important parts of Lucas’s team.”  Now, this particular doctor is not the best people-person, and his statement almost caused Krista to knock him off the garbage bin he was awkwardly seated on.  But there’s something about what he said that is true: as much as we believe that we are THE MOST important part of Lucas’s team, we have to rely on the expertise and knowledge of many other people in order to make decisions about his care.  And ultimately, whatever decisions we make, it’s the doctors that will have the responsibly to carry out procedures like the fontanelle tap.  It’s a tough position to be in.   But frankly, though many parents would like to believe that they alone shape their child’s early life, in fact you almost always have to rely on a bigger team, both inside and outside the NICU.  Our team includes all the many doctors who have been part of treating and attempting to diagnose Lucas, and it includes all of you who are reading his blog (listening to his story) and sending him positive energy, music, stuffed toys, poems, and more.

It also includes his nurses.  Without the nurses, whose job it is to both understand his medical challenges AND make sure he’s comfortable in all the little ways that matter, the roller coaster ride would be that much more harrowing.  Yesterday, after the dust had apparently settled from the fontanelle tap saga, an anesthesiologist showed up to get Lucas ready for surgery.  HUH?  Lucas’s nurse that day, who we really like and who has spent a lot of time with him over the last week, knew immediately that it was a mistake and made sure that everyone else knew it too.  Hours later she could still be heard grumbling under her breath about miscommunications between the doctors, as she gently rotated Lucas’s head and prepared him for his next feed.

We could go on forever about the many, warm, thoughtful nurses who have looked over Lucas during the past 5 weeks, and maybe we will at some point.  For now, we thank them all for making our ride easier, but even more for bringing extra comfort and care to Lucas during his challenging early journey.

“Roller coaster” is the analogy most parents who have been through the NICU use to describe the experience, and with good reason: just when you want to feel happy about improvement, your baby has a setback, something changes, a new question emerges.  Yesterday “roller coaster” actually came up short as a descriptor.  In fact, it almost felt like the doctors were just plain messing with us to see how strong our spirits have grown in the last five weeks.

Since Friday, a series of specialists have been preparing us for the possibility of a “fontanelle tap”.  They tend to introduce scary ideas to us in stages.  The neurologists mentioned it to us as a possibility a week ago.  Over the weekend the neonatologist ordered a head ultrasound and told us that if Lucas’ ventricles were growing in size (due to increased fluid volume and pressure on his brain), we’d have to do the drain fluid again, either in through his spine or through the soft spot in his head (called the fontanelle).  On Monday afternoon, the neonatologist explained that if we couldn’t tell from the head ultrasound if there is “communication” between the ventricles and the spine, they’d go ahead and drain through the fontanelle.  Then, less than 30 minutes later, the neonatal fellow came by and told us that the ultrasound results were inconclusive and therefore they were ordering an MRI.

This raised a whole bunch of questions: Is a fontanelle tap so much riskier that we should try to avoid it at all costs?   Why did a different doctor tell us they’d go ahead with the procedure without another test?  How traumatic will it be for Lucas to go through a second MRI?  The fellow convinced us it is better to know, so we agreed to doing the MRI… but on Tuesday morning he came back to tell us that the MRI was also inconclusive on the matter of whether fluid was flowing between head and spine.

So that meant we would have to move forward with draining through the soft spot.  The neurologists dropped by to explain the results of the MRI, with some good news.  Since the last MRI, there’s been normal growth in Lucas’s brainstem (the place that information passes through on the way to the brain and where neurological functions necessary for survival – such as breathing, digestion and heart rate – are located)  meaning that the injury to his brain has probably not affected this key structure.  They can also see from the MRI that his head is growing faster than it should be, due to the fact that fluid continues to build up, causing his ventricles to enlarge.  As they showed us eerie looking images of slices of Lucas’s head, they fully convinced us that he needs to have the fluid drained.

A team from neurosugery was to do the procedure.  Two neurosurgeon residents came to do a physical examination, and they left after hand shakes and a quick look at Lucas.  An hour later, two more neurosurgeons came to get us to sign a consent form for the procedure, and they repeated everything we’d heard already: why he needed the tap, what it entailed, and the possibility of having to do it repeatedly.  About 10 minutes into the conversation, one of them reached over to touch the soft spot on Lucas’ head.  Then he turned to the other doctor and said, “This baby doesn’t need to be drained.”  She stopped talking to us and moved to Lucas, touching the soft spot before turning back to us.  “I’m sorry,” she said.  “His fontanelle is still soft.  If there were real pressure in his head, we’d feel his soft spot get hard and tight like a drum.”  It was confirmed: he didn’t need the procedure.

We were almost speechless.  The doctor apologized again, but in a very friendly tone, reminding us that this is a good thing – Lucas won’t have to get a needle stuck in the top of his head, at least for now.  But what about the conversation with the neurology team an hour ago when they convinced us he needed this procedure because otherwise the excess fluid could lead to brain damage?  What about the pictures that showed his ventricles to be twice the size they should be?  What about the growing head circumference?  This team assured us that if there were dramatic pressure on his brain, we’d feel it in the fontanelle.  Soft fontanelle means no fluid drain for Lucas… and that was that.  (By the way, Burke’s parents were with us through all of this, so they can tell you that we’re not making it up.)

Shortly after the docs left, Lucas woke up and gave his grandparents a few good finger squeezes and kicks before they left for the airport.  He spent a good part of the afternoon awake and looking around, and we talked to him about how well he’s doing healing on his own.  In the evening, Burke got to “kangaroo” with Lucas, holding him skin-to-skin to help transfer all the love and healing body heat as directly as possible.  And we all slept well knowing that despite the doctor’s differences of opinion and our many questions, we’re doing the best we can to help Lucas get better.

Lucas says "come back soon Nonna and Papa!"

Kagarooing at the end of the day with daddy