Lucas Camilo

(note: we’ve been delinquent in our Spanish language blogging lately so this is a long summary of what’s been up since Lucas came home… more news soon en ingles.)

Lucas tiene ya mas que una semana en casa con nosotros!  Han sido días maravillosos, y con momentos de angustia también.  Le dieron de alta del hospital el 18. noviembre, y fue un dia muy, muy anticipado.  Pocos dias después, vino la hermana de Krista para celebrar el día de accion de gracias con nosotros tres.  El día fue tan hermoso que no solo celebramos admirando a Lucas y comiendo “pavo” vegetariano — también sacamos a Lucas de la casa para disfrutar el día.  Nos quedamos muy cerca de la casa, pero aun así Lucas pudo sentir el sol y el viento del otoño en sus cachetes (que han crecido mucho!).

Estamos todavía aprendiendo como cuidar por Lucas en casa, cosa que es un labor de amor pero que a la vez puede ser muy difícil.  Pocos días después de salir del hospital Lucas tuvo una obstrucción en su traquea y tuvimos que utilizar todo lo que nos habían capacitado para abrir su vía respiratoria y resucitarlo.  Fueron solo unos minutos, pero nos tomó casi toda la tarde para recuperarnos del susto.

No estamos solos en el cuidado de Lucas.  Cada noche llega una enfermera para cuidarlo mientras dormimos.  Lucas duerme mucho durante la noche, y si es una buena noche, la enfermera tiene poco trabajo – solo le da de comer y le cambia el panal una o dos veces.  También durante la noche tienen que utilizar la maquina de succión para quitarle las secreciones que le pueden tapar la traquea.  Son cosas que nosotros podríamos hacer, pero mientras Lucas sigue tan delicado de salud, es preferible que alguien este atenta/o y despierta/o los 24 horas del día en caso de una emergencia como la del otro día.

Tenemos otro apoyo también, de familia, amistades, doctores, profesionales, y desconocid@s.  Ya que nuestra familia esta lejos, muchos amig@s y vecinos aquí en Washington DC nos han apoyado con comida.  Durante los tres meses que estuvimos con Lucas en el hospital, nuestr@s amig@s nos alimentaron con comida casera casi todos los días, y así pudimos mantener nuestra propia salud a pesar del gran estrés.  Y ahora que estamos en casa, nos siguen alimentando para que podamos disfrutar los momentos libres con Lucas y no cocinando.  Estamos muy, muy agradecid@s por la solidaridad y amistad.

Otro gran fuente de apoyo son otras familias con niñas y niños con necesidades especiales.  Hemos descubierto varios foros en el internet donde familias comparten las experiencias de salud con sus bebes prematuros o hija/os con traqueotomías.  Cuando llegamos a casa una familia que forma parte de la red de familias con bebes prematuros en Washington DC nos regaló una bascula digital para poder medir cada gramo que Lucas sube.  Otras madres y padres que viven en todas partes del país nos han compartido sus experiencias muy personales del cuidado de sus bebes con ventilador en casa.

Y por supuesto, aunque el cuidado de Lucas nos consume mucho de nuestras energías ahora, también seguimos pendientes de los acontecimientos en el resto del mundo.  Hoy vimos con frustración como el gobierno de este país esta apoyando la elección de un gobierno ilegítimo en Honduras, a pesar de las grandes violaciones de los derechos civiles y humanos cometidos por parte del gobierno de facto.  En Seattle se esta marcando el decimo aniversario de las protestas contra la Organización Mundial de Comercio, mientras en Washington DC un juez acaba de decidir a favor de 700 manifestantes quienes fueron detenidos ilegalmente en una protesta contra el Fondo Monetario Internacional en 2000, pocos meses después de Seattle.  El movimiento por la justicia global ha cambiado mucho en los últimos 10 anos, pero es importante mantener la memoria histórica – y en lo personal, las protestas en Seattle y Washington DC del 1999 y 2000 fueron momentos importantes en el desarrollo político de nosotros dos.  Son cosas que vamos a estar contando a Lucas para que el pueda saber de los logros y los retos de los movimientos por la justicia social.

En fin, estamos disfrutando nuestro tiempo con nuestro bebe lindo.  A pesar de que nunca nos habíamos imaginado tener tanto equipo medico en casa, y que no parecemos una familia “normal”, tenemos también la gran fortuna de ver este pequeña persona luchar, sobrevivir, y crecer, y de sentir por el un grandísimo amor.

Ever notice how we always talk about Lucas on this blog?  You’d think it were dedicated to him or something!  But seriously, let’s just say we’ve made a snide comment or two in the past about those parents who become so obsessed with their babies that all it seems they do anymore is send out cute pictures and gushing emails about how wonderful it is to be a parent.  We’d never be like that, right?

The point is, we still do actually have other things going on in our lives, and as important as working through Lucas’s challenges are for us, we also want to remain engaged in other issues and supportive of friends and organizing efforts.  After a long, hard day dealing with Lucas and working through some of the tough things about being home, we figured we’d save THAT post for later and reflect on a few other goings on.

Like the fact that Krista’s cousin Erica got married yesterday. We couldn’t be there at the wedding in Portland but over the weekend we were thinking about all of Krista’s extended family and friends and how nice it is to bring people together for celebrations.  Congratulations Erica and Luke!

In other news, we somewhat reluctantly posted a link to an article in the Washington Post a little while back that featured our family (especially Burke).  Well, the good news is that the Post published a fiery rebuke penned by Burke in the front section of their Saturday edition (It’s titled “Class Privilege in an Unequal Society”).  He decided to focus on defending the organization, Resource Generation, that was misrepresented in the article.  We’re proud that the response made it in the newspaper and hope that it helps to get people talking around class, wealth and inequality in ways they usually shy away from.

Another big thing happening today is the election in Honduras.  We’ve been following the situation there closely since the legitimate, democratically elected president was removed in a military coup back in June.  Having spent a lot of time in Central America and knowing the violent history of coups and dictatorships it’s been very troubling to see the road Honduras has been on since the coup, including crackdowns against protesters, grassroots organizers and independent media.  It’s especially disappointing to see the Obama administration wavering in its support of democracy in Latin America.  The elections today – with 30,000 troops in the streets – are at best a joke and at worst a dangerous deviation from real democracy, and yet the US stands to be one of the only countries in the region that actually recognizes the results.

In better news, we’re pleased to report that our good friend Sha and his honey, Matt, just moved in up the street – it’s going to be great to have ’em so close by!  And speaking of cool neighbors we just figured out that Ian MacKaye, founder of the seminal DC punk band Fugazi, lives about five houses up on the same block as us.  We knew he was in the area because of his involvement in local Mt. Pleasant politics, but it was only as Burke rolled by on his bike and saw him sweeping his front porch that we realized he was so close.  Sadly, Burke got nervous about talking one of his musical heroes and therefore failed to introduce himself.  One of these days…

And finally, tomorrow is the 10th anniversary of the amazing protests in Seattle against the World Trade Organization.  Some friends in Seattle have organized various events for the anniversary including a big town hall meeting tonight.  It’s hard to get too nostalgic given the breakdowns in the so-called Global Justice movement since then, but Seattle most certainly did represent a major victory for grassroots forces intent on turning around the forces of corporate globalization.   (oh yeah, and on a related note, congrats to the 700 protesters who sued the Washington DC police for beating on them at a similar protest in 2000, just 5 months after Seattle… and won! The struggle continues…)

We’re still learning to take care of Lucas at home, and although our learning curve seems to have a healthy arc to it, we continue to discover new challenges. We’ve had a couple scares recently when we’ve been suctioning Lucas’s trach, with his secretions looking different than they did in the hospital. So yesterday we spent much of the day getting different opinions about suctioning. We called the clinical director for the home nursing agency as well as the pulmonology department at Children’s, we emailed a couple of Lucas’s NICU nurses, and went online to tracheostomy forums for advice. We seem to be narrowing in on possible causes of the problem ( design of the suction catheters, calibration of the suction machine, and level of humidity from the vent and collar), but we’re still watching closely.

When we were discharged from the hospital we were told to monitor changes in Lucas’s secretions and that if there were significant we should bring him back to the hospital. The idea of doing that sounds about as fun as listening to Burke play the accordion for three hours straight, so we’re thankful for all the home advice we’ve gotten. It’s been especially helpful to get very detailed responses from total strangers online sharing their experiences with home trach care.

Speaking of strangers with helpful stories, we’ve been reading a book of essays by parents of special needs kids. It’s called The Elephant in the Playroom. The essays share the incredible difficulty and joy of being part of a family with a special needs kid (or kids, in some families’ cases.) Although none of the kids discussed in the book share Lucas’s exact challenges (all have been diagnosed with some specific disability or disorder, and are a lot older than 3 months) it’s still very helpful reading.  And inspiring. We definitely recommend the book.

The biggest news around the Lucas Camilo S. H. household today, though, is that we’ve set a new record for time together without a nurse around. Yesterday evening the nurse who was scheduled to come overnight had a family emergency, so we decided to go through the night on our own. Around midnight we hooked up Lucas’s milk pump, gave him his meds, turned up the volume on his alarm, and went to sleep on the futon next to his crib. Lucas did fine, sleeping through most of the night, and although Burke got up a couple times to change his diaper and give him more food, it wasn’t until 6:00 this morning that his alarms went off and he called us both out of bed to suction out his trach.

The payoff was big. Going through the night without a nurse meant that we could have a quiet morning with just the three of us. We all went back to bed around 6:30, but not too long afterward we were awake again. This time we took Lucas off his vent, stuck the “nose” over his trach, and brought him to bed to cuddle. It was a moment we’d been dreaming of since before he was born.

We can’t help but think about family on this day.  We’re so lucky to have Lucas with us here, and we took advantage of the break in the rain to take him on an excursion outside.  Ok, so we only got as far as the front lawn, but it was exquisite just to see Lucas breathing in the cool fall air!

And we’re lucky to have Krista’s sister Megan with us as well, not just because she plays a mean flute counterpart to Burke’s accordion (see video below.)  On the other hand, we’re missing Krista’s mom, Burke’s parents, his sister Ashley and Uncle Brandon, and of course Lucas’s cousins Madden, Tya and Ellody… and all of our extended family.  We can’t all be together today, but we want to tell them all that we love them and thank them for all they’ve done for us and Lucas over that last 3 months.  We can’t wait for Lucas to be (re)united with the whole Hanson-Stansbury clan.  Cheers from Washington DC…

Today we celebrate one week of being home from the hospital with Lucas! We’ve said it before and we’ll say it again: we could have never made it this far without the support of so many people – friends, family, neighbors, co-workers, even people who we’ve never met before that discovered Lucas’s blog through a friend or family member. Community.  When we first decided to be so public about Lucas’s challenges we had no idea the kind of response we would get, and it truly does lift our hearts everyday to know that so many people are thinking about and pulling for Lucas, not to mention sending us love as a family.

We blogged a lot about how anxious we were to get out of the hospital and perhaps left the impression at times that it was a horrific experience.  On the contrary, our stay in the NICU was not at all the way we had imagined spending our first months with Lucas, but under the circumstances it wasn’t so bad.  In fact, as long as Lucas couldn’t come home, Children’s was the best place in the world for him to be.  (And once he was ready to come home but insurance was stalling our discharge, it meant that Lucas had the most overqualified babysitters ever.)

When we finally got the green light to go home we rushed out so quickly that we didn’t get to say goodbye to all the wonderful people that cared for Lucas and who we became friends with at Children’s.  From the amazing array of nurses who looked after Lucas, to the doctors and residents, to therapists (respiratory, physical and occupation), to the case managers and social workers, to the NICU receptionists who greeted us with warm smiles everyday, to the custodial staff (some of whom spoke to Lucas in Spanish), to nutritionists, to other parents… the list goes on.  A special shout out to Lucas’s primary neonatologist, Dr. Stone (not just because we know he reads Lucas’s blog), Kim and Linda, and all the nurses who helped FINALLY shoo us out the door last Wednesday.  They did an incredible job of taking care of Lucas, and during this week of gratitude we are thankful for all the knowledge, commitment, and love they shared with us and Lucas.

And of course there were Lucas’s girlfriends.  Rumor is he had a lot of suitors, but no one was quite as persistent as Charm (and with a name like that what do you expect?!)  On the morning that he hit the road we managed to score an interview with Lucas’s favorite night nurse…

Having Lucas home continues to be great.  He’s eating and sleeping and wiggling all around.  A new friend from “Preemies Today”, the local support network for parents of premature babies, brought us a digital infant scale so now we can weigh Lucas whenever we want.  He hit the 8 1/2 pound mark meaning he’s gained as much as a half a pound since coming home.  You can really notice his chunky thighs, which used to be about the size of his ankles but now look like tree trunks in comparison.

His breathing has also been very stable, in part because we’re figuring out how often we need to do the trach suctioning routine, and in part large part because Lucas is a superstar.  So much so that yesterday we turned off the machines and put on his cordless, hose-less “nose” so we could role around on the floor. It was fantastic, and Lucas was wide-eyed.

Lucas met his aunt Megan on Monday, and after having known her just a few hours he quickly took to snuggling with her. Being a growing baby is hard work, but it’s not all bad – imagine if we all could snuggle with people right after we meet!

And while Lucas is thriving in his home environment, where he can get a lot more peace and quiet than the hospital, he’s still getting some professional attention. Yesterday he had a session with a craneosacral therapist here at the house, and this morning his new physical therapist came to meet him. We love to hold Lucas and heap him with love, and we’re confident that this is contributing to his increasing strength, but we’re also hoping that these healers and therapists can help Lucas make his body move in all the ways he wants it to. One of the benefits of both therapies is body awareness –  knowing that the tasty wrists Lucas loves sucking on are connected to his arms, connected to his shoulders, connected to his chest, connected to his head…

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In honor of aunt Megan’s imminent arrival to Washington DC we pulled out the accordion that she gave Burke this summer and serenaded Lucas.  It was unclear if he enjoyed it, but we sure did…

Having Lucas home continues to be wonderful, but yesterday we had our first heart-thumping scare. After holding Lucas peacefully on his chest for a while, Burke moved him in preparation for putting him back in the crib. All of a sudden his oxygen saturation started dropping and it became clear that something was clogging his airway. We got him in the crib and started giving him some extra breaths with an “ambu” resuscitation bag, but the numbers on his monitor kept dropping and he clearly looked like he was choking. So we did what we had learned at the hospital and quickly changed his tracheostomy, removing the trach and placing a new one in the stoma. We then connected the oxygen tank to the ambu bag and continued giving him breaths, now including supplemental oxygen. And sure enough, his oxygen saturation started going up, his color returned, and we took in a deep, collective breath of relief.

It all happened so fast and included various beeping and alarming machines, which certainly added intensity to the situation. Most difficult was seeing Lucas’s shocked look and his color change – babies turn blue pretty quickly when they don’t get enough oxygen in their blood.  This kind of thing has happened before in the hospital, but there were always nurses around to help out.  Yesterday we were on our own, and we’re proud to say that we did great. We kept our cool, did what needed to be done, and proved that we’re a darn good team. We also learned a few things in the process, such as the need to more frequently suction out Lucas’s trach so that such major mucus buildups don’t happen. (For any nurses and parents of kids with trachs who read this: we’re open to more advice!)  And we learned that for now at least it’s important to have the oxygen tank close at hand at all times. We hadn’t used it since arriving home but on this occasion we were thankful that we’d done a test run a few days before.  We were also trained in the hospital in infant CPR, so knowing we could do CPR if necessary is important.

So we don’t mean to freak out our friends with this story but it’s an example of what can happen with Lucas.  Despite his amazing progress he is still fragile and he does have a tracheostomy which is exactly why someone, if not two people, need to be by his side at all times.

Krista’s sister, Megan, arrives today, and we’re looking forward to having another person around to help.  We are still trying to strictly limit the number of people Lucas comes into contact with, though.  Our scare yesterday wasn’t cold or flu related, but it was a reminder of why more mucus in Lucas’s lungs could be dangerous.  So we want to thank everyone for inquiring about visits, and also ask for your understanding while we keep Lucas’s visitor policy pretty strict.

On a lighter note, Lucas continues to break records in both quantity and frequency of urine output.  He’s soaked through multiple diapers and seems unfazed by it all — maybe even proud to have inherited his dad’s hyperactive bladder.