Lucas Camilo

We spent months preparing for Lucas’s birth.  We learned about the history of obstetrics and midwifery in the U.S., about which herbs and foods are good during pregnancy, about the stages of labor, and even practiced a couple of relaxation techniques (although we were still 11 classes short away from graduating when Lucas arrived!)  None of that, though, prepared us for how it would feel to have a baby.

It is hard to put into words the overwhelming love and awe we feel for Lucas, an experience probably all parents can relate to.   To stare at four and a half pounds of life that we helped create is amazing, even as he struggles to survive right now, with a whole unknown, unmapped life ahead of him.  It’s such a wonderful feeling to be able to spend whole days just sitting and loving Lucas: watching him sleep, holding him for an hour, feeling his fingers wrap around one of ours, and then watching him sleep some more.  We know that love plays some role in the healing process, and we imagine that Lucas is feeling this too.

Today we got to give Lucas extra loving, holding him for over two hours and grasping his little hands through much of the day.  He also got lots of attention from doctors, with visits from the neurologists, geneticists, neonatologist, and an opthamologist.  The reports are still generally good, but without a diagnosis.   The opthamologist said his eyes look fine, with a slight chance of damage to the nerves in his eyes because of bleeding in the brain, though nothing major.   In the end she saw no clues in his retinae, such as signs of an infection, that would help lead to an overall diagnosis.

The neurologists were happy to report that the fluid in his ventricles remains steady and that they won’t drain more fluid again unless it increases.  And the genetics team came by because nobody else has a diagnosis, so they were called in to see if they missed anything the first time.  But Lucas still looks good to them with nothing obvious they can see that would point to a genetic disorder, and they’ve already screened for most of them anyway.  We told them to look for some condition which includes symptoms of “getting cuter every day”… then they might find a match.

Este fin de semana pasada fue una de mucho esfuerzo para Lucas Camilito, y mucho suspenso para sus padres.  El sábado los doctores notaron que Lucas estaba intentando respirar más, entonces decidieron darle la oportunidad de respirar sin la ayuda.  Cuando le quitaron el apoyo del ventilador, tod@s — el doctor, las enfermeras, l@s especialistas en respiración, y nosotros — mantuvimos nuestra respiración, viendo si Lucas iba a poder respirar sin ayuda.  Y lo logró!

Lucas respiró toda la tarde y parte de la noche.  Pero a las tres de la mañana se cansó, dejó de respirar por un momento, y le tuvieron que regresar el apoyo del ventilador.  El día siguiente fue difícil para nosotros – el chiquitito se había cansado mucho del esfuerzo de la respiración, entonces el domingo durmió todo el día y parecía ser muy frágil de nuevo.

Pero el lunes demostró que si es luchador, porque ya estaba abriendo los ojos y moviéndose de nuevo.  Hoy pasó casi dos horas despierto, moviendo las manotas y pies y viéndonos a sus padres loc@s por el.  Los doctores le subieron la cantidad de leche que esta tomando, entonces esperamos que esta semana crezca mucho y se haga mas fuerte.  Y la próxima vez, que aguante respirar por si solo aun mas tiempo.

Los doctores aun no tienen ninguna diagnostica para Camilito, pero esto no significa que no puede sanarse.  De hecho, ya que los doctores no saben que tratamiento darle, por ahora son los rezos, los pensamientos, las buenas vibras y toda la buena energía que nuestra familia y amig@s le mandan que es su medicina.   Y por lo que vemos, esta funcionando!  Gracias a tod@s por el acompañamiento.

(Get-well cards and gifts decorate Lucas’s room. Cartas y regalos adornan la habitacion de Lucas.)

It’s been quite a ride for Lucas over the weekend.  It all started on Friday when we came in to the hospital and found out that the doctors hadn’t taken enough fluid during the spinal tap they performed the night before.  Though we didn’t talk mention this oversight in the September 4 post, needless to say we were a bit miffed, especially since it meant Lucas might have to get another spinal tap to drain more fluid.  But luckily (for Lucas and the doctor who messed up) his head circumference hasn’t increased and the recent ultrasound of his head looked ok, which means his hydrocephalus, or excess fluid in the brain, has subsided for now.

So on to the next challenge: breathing without the ventilator.  It was a leak in Lucas’s ventilator tube that inspired the the doctors to give Lucas a shot at extubation on Saturday (they were going to have to replace it anyway) and we decided to go along with it.  As we reported over the weekend, Lucas breathed on his own for nearly 12 hours but eventually got too tuckered out.  Extubation isn’t easy: Lucas’s little neighbor waited 5 months to get his tube pulled (it happened on the same day as Lucas), and his parents and grandparents were crying tears of joy when we saw them.

We got pretty emotional too, especially since the doctors had indicated just a few days earlier that Lucas probably wouldn’t be ready for a while.  And when he had to get re-intubated, it was a bit of a letdown, for all three of us.  Lucas crashed hard, sleeping the whole day yesterday and struggling with things like saliva suctioning that had been a piece of cake in previous days.  It was as if he was so exhausted that he took a few steps backward, moving and breathing at the level of week 1.  On top of that his equipment wasn’t working so well, leading to lots of beeps and alarms, and the hospital staff was often too busy to do anything about it.  All this in turn had his parents pretty worried and we canceled an evening trip to go hang out with our cycler friends on a farm in Virginia, choosing instead to hunker down with the little man until late last night.

Sure enough, he eventually regained his strength, and our Sunday ended on a good note as we bathed him, changed his diapers (the breathing test didn’t slow down his pooping!) and acquainted him with new friends (a turtle finger puppet and a stuffed red blood cell among them).

Today Lucas is doing even better, wiggling around more that we’ve ever seen before.  He had his eyes open for a good hour this afternoon, and really shakes his arms and legs when we put on his newest CD, David Grisman and Jerry Garcia’s “Not for Kids Only”.  It’s a gloomy, rainy day outside Children’s right now, but inside room 638 things are going pretty well…

We’re proud to report that Lucas was able to breathe on his own for almost 12 hours last night. Late in the night, though, it became clear that he was exerting a lot of effort to keep up the breathing and that his body was tiring of exchanging CO2 for oxygen. So early this morning the doctors put Lucas back on the ventilator.

We had seen Lucas increasing his effort over the course of the evening following his extubation, and we’d been warned by doctors and other parents that it is common for babies to need to go back on the ventilator, so the early morning call from the doctor didn’t come as a big surprise. We’re glad he got to give it a shot, and we’ll be cheering by his side again next time he tries taking a big step forward.

This morning Lucas is tired from all his work over the last 24 hours, plus a little doped out on the morphine they gave him to make the re-intubation more tolerable. So we’re letting him rest while we read him the Sunday paper and congratulate him on all his hard work.

This afternoon the doctors decided to give Lucas a shot at breathing on his own. At a little after 5 pm they pulled the tube out of his windpipe, shut off the ventilator, and sat back to see what he would do.  And wouldn’t you know it, the little guy hardly missed a beat! Lucas picked up his breathing and ran with it, and for 5 hours now he’s been going at it on his own. What can we say, we’re proud of him!

It’s not uncommon for babies to go back on the ventilator after being extubated (that’s the technical term for removing the tube) so they’re still watching him closely and checking his blood gas levels to see if the CO2 in his blood is going up, which would be a sign that he’s still not quite ready to be off the tube.  They’ve got a nasal cannula running oxygen by his nose to give him a little boost, and clearly he’s working a little harder than usual.  But its great to see more of his face, and frankly it’s got to be one of the more exciting changes we’ve witnessed so far with Lucas.  He’s still got a long ways to go, but for now we’re going to toast to him and the day’s accomplishments… and get some rest ourselves.

Lucas says “I’m breathing on my own!”

Lucas is having a good day so far, as we all enjoy the beautiful weekend weather in Washington DC.  We’ll give an update on his condition later today but for now a couple of shout-outs:

First, we want to thank everyone who has brought us food, or sent us packages and flowers, over the past few weeks.  We pretty much haven’t eaten at a restaurant OR prepared our own food since Lucas was born on August 17, and we’ve loved every minute of it.  From pupusas, to curries, to multiple batches of lentils, to many other vegan and vegetarian treats, its been excellent.  One of these days we’ll have an apartment-warming party and share the leftovers.

The second shout-out is for 20+ cyclists that hit the road this morning to ride nearly 200 miles over the next 3 days.  We helped start the “Solidarity Cyclers” tradition back in 2007 and we’re sad to not be joining this year’s ride.  But we know that Lucas’s energy is accompanying the brave riders who took to the trail this morning, and indeed there’s actually been a few donations to CISPES in his name (the little guy is fundraising already!)  Check out more details about the ride and join us for the welcome home party on Monday night if you happen to be in DC.

And finally, an extra special shout-out to Krista (this is Burke writing now) for her strength over the last few months.  We decided to publish some emails that we sent out in late July and early August since they tell some of the back-story leading to Lucas Camilo’s birth.  After Krista went into early labor (on the airplane!) in late July we endured a rough couple of weeks of bedrest, not to mention going in and out of the hospital in Seattle (and by “we” I mean Krista.)  She held it together amazingly during those weeks of tests, probes and repeat doctors visits – visits that we hoped would never happen given that we were working with midwives and planning to have a home birth.  Since then Krista has continued to show remarkable power in ways that inspire me and which I myself could never accomplish (her robust daily output of breast milk being just one example : )  So today, a special shout-out to Lucas’s mom.

Today Lucas gets big bonus points for strength and courage because he sailed through a spinal tap last night. (His parents do not get the same badge of courage for the spinal tap… it took numerous doctors to convince us that it was not only a common procedure in the NICU with few risks, but also necessary for Lucas.)  The neurologists have been monitoring the fluid in his brain because hemorrhaging like he had when he was born often leads to a blockage of the normal channels for re-absorption of fluid. Indeed, that happened to Lucas, so instead of allowing the fluid in his ventricles to accumulate to the point of putting too much pressure on his brain, the doctors decided to drain some of the fluid last night. We’re crossing our fingers that they were able to drain enough fluid, and that it doesn’t re-accumulate. We don’t want any repeat performances of the spinal tap, or to get to the point that the fluid has to be drained out through a soft spot in his head.

There are days that it is hard to stay positive, moments when his visible steps of improvement seem so tiny. His body is still mostly limp like a rag doll.  He still needs help breathing, and the last couple times we’ve held him it seemed to make breathing even harder. So today we reversed roles with the doctors: whereas in the past they sometimes gave us grim outlooks while we fought to stay positive, this afternoon it was Dr. Stone that reminded us of all the reasons to keep up hope for his full recovery.  Lucas is breathing over the ventilator a little more every day, he said, much more than last week.  He’s tolerating breast milk so well (up to 25 ml every 3 hours!) that by this weekend he will be getting all his nutrition from the milk. In fact, the only thing they’ll be putting in him besides the milk is saline water, and that’s just to keep the IV operational in case they need it later.  Finally, he reminded us again of the amazing ability of infant’s brains – unlike adults  – to recover from injury.

Though he won’t be doing push-ups anytime soon, every day Lucas moves a tiny bit more on his own.  His grandmother Susan sent him a preemie sound machine that mimics the sounds he heard in the womb – a heart beat and the gurgling of digestion. Although the machine is meant to soothe babies who have trouble sleeping, Lucas seems to perk up at the digital gurgling noises, and today he squirmed and danced for a while when the machine was on. Of course we’re trying to convince him that his new Woodie Gutherie children’s album is where it’s at, but we’ll give him some time to develop his own musical tastes.

(Lucas rocks out to dolphin noises on his sound machine)

The last 2 days have seen very gradual but marked improvement by Lucas. He continues to make more spontaneous movements of his arms and legs, is taking more frequent, steady breaths over the ventilator, and has started occasionally sucking on fingers. The fact that he’s making the sucking motion has been noted as positive by the doctors, and so we’ve even had him working on a pacifier occasionally for practice (though once this is all over we’ll hide that sucker away and put on his “we will not be pacified!” onesie). He still sleeps about 95% of the time which supposedly is par for the course in preemies but can be frustrating for us since its just so much fun to see him with his eyes open. We’re trying not to become overbearing parents before he’s even a month old, so we told him that its ok to rest often and take his time getting better.

Lucas’s jaundice appears to have mostly subsided, and he’s been off the photo-therapy for a number of days. But he’s not totally out of the woods: though his overall bilirubin level is way down from a week and a half ago, and the indirect differential is also down, the direct bilirubin differential has increased over the past couple days (?!?). The neonatologist who’s taken over Lucas’s care (Dr. Stone) has used this somewhat complicated twist to test the residents during their daily rounds, and it took them a while to figure out that this could mean that something’s up with his liver or urinary tract. So they took blood for some tests yesterday and did an ultrasound of his midsection. After all the clinical mumbo-jumbo it seems most likely he’s just a little constipated (he hasn’t pooped for a couple days) so they give him a baby-suppository and hopefully that will get things moving and bring that darned direct differential down!

In the meantime, Lucas has become the most popular baby in the NICU. We barely got to hang out with him alone yesterday as there was a steady stream of visitors throughout the day: Sara W-K, Nina Randolph, Karla and Lita, Catherine, Sha and Julie… We told him that we’re going to have to get him his own Slingshot daily planner if this continues! His blog is also getting hundreds of hits a day and quite honestly we’ve been overwhelmed and humbled by the amount of interest and energy that everyone has generated towards Lucas.