Lucas Camilo

We failed to mention in today’s earlier post that shortly after the picture here was taken, Krista took a semi-nasty spill on her bike as we were riding back from the  march. She hit a big bump in the hospital garage, lost her balance and then nearly caught it, before finally barreling into the back of a parked car.  Like Lucas she’s a tough cookie, so the only real damage was a scrape on the inside of her thigh where her front brakes somehow ripped through her pants.  Ouch!  She’s recovering well and even got to borrow some med supplies from Lucas’s nurse.  However, we’re not looking forward to seeing the bill from the guy’s bumper repair.

The upward swing continues for Lucas, despite a few little throw-up episodes during the night. He’s been more awake, alert, and expressive over the past couple days than we’ve seen in a while, his settings on the vent are very low once again, and he’s taking food well (after the aforementioned vomiting). In fact, he was feeling so good that he gave us permission to hop on our bikes and head down to the National Equality March, where we met up with friends and did some good chanting (our favorite was “1-2-3-4, stop the war on the poor…5-6-7-8, unite our struggles, liberate!) Krista used the opportunity to explain to Lucas the importance of fighting against discrimination and hate, and the little guy was receptive, which he demonstrated by not puking. He seemed surprised to hear about the concept of homophobia, and raised his fist in solidarity with the marchers.

Para los que leen las noticias de Lucas en español, pueden ver la nota mas reciente el dia 7 de octubre, o haciendo click aqui.

Following his tracheostomy surgery, Lucas was in some pain as the hole in his neck started healing.  It was hard to watch him grimacing whenever his head was moved, and eventually he got another couple small doses of morphine to help with the pain.  That made him pretty sleepy for most of the day yesterday, and he looked a little roughed up too as his face was swollen from the extra fluids he got during surgery.

Today Lucas is feeling a lot better and getting back to his usual wiggling.  The best news is that he’s back to full breast milk feeds after about a week of getting mostly IV fluid and hardly any milk (because of the infection and then the pre and post-surgery fast.)  Given that the hospital has now cut Krista off from leaving any more milk in the giant, deep freezer, and that we’re already doing a job filling both our own freezer and the one in the garage with her milk, this is really good news!  Mostly it’s good news for Lucas since more milk means more growth, more strength, and more wiggling.

Meanwhile, we’re starting to get to know Lucas’s new accessories, especially his trach (pronounced “trake”), which is essentially a small, hard-plastic thing that goes into his trachea.  In a future post we’ll explain more how it works and what our upkeep will look like once we’re home, but we’re not pros yet; we’ll get trained next week in how it works and how to care for it.  We are excited about the fact that it’s a much more stable airway than the ET tube, meaning that it will be easier to hold and play with Lucas… but not quite yet.  Unfortunately it takes a week for the stoma (the name for hole that the trach fits into) to heal, which means that we can’t hold him for now.

It was a nervous week for us as we prepared for surgery, so we’ve felt extra lucky to be surrounded by many of our favorite nurses and respiratory techs.  A lot of people are getting to know Lucas around the hospital, and we’ve appreciated having nurses that previously attended Lucas stop by to see how he’s doing, while continuing to give us support and advice about this next stage in his care.  It was also really special to have a second visit from two great nurses at the Washington Hospital Center who were with Lucas during his first harrowing week of life.  It’s wonderful to have folks show genuine concern and interest for our son beyond what they have to do as part of their health care job.  We’ve thanked the nurses before but the respiratory specialists should also be recognized as unsung heros who really advocate for the little guy, not to mention other nearby NICU babies with respiratory challenges.

We’re happy to report that Lucas made it through surgery with flying colors. He got both the tracheostomy and g-tube in place, and is currently recovering back in his own hospital bed. The anesthesia will take a few hours to wear off and so he’s conked out for now, but it’s great to see his pretty face, free of tube and tape. Although it will take a few days to fully recover from the surgery, this already feels like a new chapter in Lucas’s life.

We also want to wish Lucas’s aunt Megan happy birthday today! When Lucas wakes us we’ll tell him about what good luck it is to have an aunt with a birthday on el Dia del Guerrillero Heroico.

Hola amig@s –

Queremos compartir la gran noticia de que ayer Lucas tuvo dos pequeñas cirugías, y las dos fueron exitosas.  Le quitaron el tubo de la respiración de la boca y lo insertaron quirúrgicamente por la traquea.  También le quitaron el tubo gástrico que pasaba por la nariz y insertaron uno mas estable cerca del ombligo.  Hay muchas ventajas con estas cirugías: ahora las funciones de la boca pueden desarrollar normalmente, podemos ver su cara y sus expresiones, y el ventilador tiene una conexión mas estable y por lo tanto le podemos llevar a la casa en las próximas semanas!  No será muy fácil — nos acompañaran a la casa maquinas y enfermeras al principio — pero aun así estamos felices por la idea de poder cuidar y disfrutar el tiempo con nuestro hijo en casa.

Muchas personas nos han preguntado acerca del nombre y apellido de Lucas, entonces queremos contar la historia de nuestras selecciones.  Para empezar, hay que explicar que por razones políticas y personales decidimos no casarnos.  No quisimos hacer una boda, pero en junio decidimos festejar para marcar este momento tan especial en nuestras vidas: la decisión tan grande de tener un hijo, nuestro compromiso a nuestra relación, y la celebración de la comunidad que nos seguiría acompañando cuando fuéramos padres.

En junio Krista tenia cinco meses de embarazo y nunca nos imaginamos que dos meses después Lucas llegaría al mundo.  Ni imaginamos que pasaríamos los siguientes dos meses en el hospital donde la personas preguntarían “Su esposa esta bombeando leche, Mister Hanson?”  (Hay tres errores en este interrogatorio: no estamos casados; el apellido de Miguel es Stansbury, no Hanson; y es un poco raro cuando tipos desconocidos pasan para hablar con Miguel acerca del bombeo de leche materna!)

La historia de nuestra decisión de no casarnos es relevante porque primero tuvimos que seleccionar el apellido.  (El costumbre en los EEUU es que al casarse la mujer cambia su apellido al apellido de su esposo, y lo hijos toman solo el apellido del padres, aunque no todas las familias lo hacen así.)  Unas horas después de que Lucas nació todavía no habíamos seleccionado ni nombre ni apellido para el hombrecito.  Habíamos pensado darle los dos apellidos juntos, pero Stansbury-Hanson seria muy largo para la maestra cuando Lucas vaya a la escuela.  También pensamos crear un apellido de una combinación de los dos — Hanstan era el favorito, o quizás Hansbury — pero estos también tenían sus desventajas.  Entonces el día en que nació, cuando estábamos llenando el formulario para el certificado de nacimiento, decidimos solo darle uno de nuestros apellidos y dejar el otro como segundo (o tercero) nombre.  Y siendo personas que nos oponemos a la patriarquia, nos pareció lógico que fuera el apellido de Krista

El luchador, Camilo Cienfuegos

A pesar de haber pasado mucho tiempo en el hospital en Seattle, logramos no saber el sexo del bebe y fue así que acabamos pensando en mas nombres de niñas que niños.  Pero no importo mucho porque el 17 de agosto aun no habíamos escogido el nombre, y cuando salimos corriendo para el hospital a las 3:30 de la madrugada, no agarramos la lista de nombres que teníamos.

Pero teníamos algunos favoritos, y uno fue Camilo.  Habíamos pensado un varios nombres de revolucionarios de America Latina – Farabundo, Augusto, Emiliano — pero no se traducían bien al ingles.  Camilo nos sonaba bien, y nos gusta la historia y el legado de Camilo Cienfuegos, revolucionario barbudo quien se unió a Fidel y Che en las montanas de Cuba en los anos 50s en la lucha para liberar la isla de la dictadura apoyada por los EEUU.  Camilo murió trágicamente poco después de la victoria de la revolución cubana, pero aun es conocido como un hombre con muy buen sentido de humor y aun en medio de la guerra de guerrillas.  Y para confirmar la selección del nombre, pocas horas antes que Lucas nacieras Krista soñó que dio luz a un bebecito barbudo.  Entonces tenia que ser Camilo.

De hecho, casi le pusimos Camilo como primer nombre, y la mayoría de nuestr@s amigas y amigos salvadoreña@ y mexican@s le dicen “Camilito,”  lo cual nos parece bien.  Pero sucedió otra cosa en la mañana del 17 de agosto que señaló el nombre “Lucas”.  Krista dio luz con mucho coraje — naturalmente, aunque no en la casa con parteras como habíamos querido — justo en el momento que el amanecer pinto el cielo de Washington DC.  Krista tomo pausa por un momento entre las contracciones para admirar el cielo rosado y anaranjado junto con Miguel y la enfermera.  “Lucas” significa “luz” o “el/la que trae luz”, y ese día el chiquitito si fue una luz maravillosa que llego al mundo.   Seleccionamos el diseño de este blog para recordar ese momento hermoso cuando Lucas vino al mundo.

Entonces así llegamos a Lucas Camilo Stansbury Hanson.  Es largo y llena la boca un poco, pero significa que Lucas tendrá muchas opciones para combinar si se cansa de “Lucas Hanson.”  Por ahora, a Miguel le seguirán llamando “Mister Hanson” en el hospital, y a Lucas por su seudónimo de asalta-banco mafioso “Baby Boy Hanson.”

Tomorrow Lucas will have surgery for the first time.  He’s lucky in a way – a lot of preemies have multiple surgeries along the way to help correct different issues they are facing.  Lucas will get a double surgery but neither is corrective: rather, the procedures will allow him to continue breathing and feeding with assistance (for now), but from a better place.  That place, if we didn’t mention it before, is home.

The first surgery is one we’ve already mentioned, the tracheostomy.  Lucas has tried three times now and been unable to go off the ventilator, despite having the lowest possible settings (including receiving room air as opposed to increased oxygen) and doing fine on the CPAP mode of the vent.  We finally got a good explanation from the ENT last week about why this is the case, and (not surprisingly) it involves his low muscle tone.  It seems that the tube itself is serving as a structural aid in keeping his upper airway open, and that the muscles in his throat still aren’t strong enough to fully hold open the airway once the tube is removed.  Therefore, the airway collapses inward and he’s got to work a lot harder to take deep breaths; consequently his CO2 level goes way up, and he gets exhausted after a while of breathing without the tube.

Lucas and dad on a conference call discussing the perils of "free" trade

A tracheostomy would create a hole in his neck that he can breath through – temporarily eliminating the need to take breaths through the upper airway – and where a tube can be inserted to keep him ventilated.  It’s a fairly simple procedure, heals quickly, and the biggest upshot is that he’ll be permanently free of the ET tube currently taped to his face.  And losing the ET tube means Lucas will be able to do things like make facial expressions, touch his face, and suck more easily.  And most importantly, with secure access to his airway we’ll be able to pick him up and hold him more often.

He’ll go under general anesthesia for the surgery, and it should only last about a half an hour.  Later on we’ll learn all we need to know about how to take care of the trach, and we’ve already started talking to some parents who’s kids have trachs to think through the benefits and challenges.  One thing we’ve learned is that at any time once he’s able to breath on his own the tube can be popped out and the hole will heal up, leaving only a little scar.

As long as he’s going to be in surgery and under anesthesia the doctors have also recommended a second procedure: the placement of a gastrostomy tube, or g-tube.  Though the removal of the ET tube from his throat will open up the possibility for Lucas to feed orally, he’s still not ready.  The strength and reflexes he needs to suck and swallow aren’t well enough developed – again due to his low muscle tone – and so it’s unlikely he’ll be able to accomplish oral feeding soon.  The g-tube, inserted directly into his stomach through a hole made by the surgeon, will allow us to feed him breast milk regularly while he also practices oral feeding and gets ready to breastfeed eventually.  Lucas has continued to struggle with his feeds over the past few days since he got an infection last week, so the break from feeding, which is necessary to properly insert the g-tube, might actually be beneficial in terms of giving his tummy a rest.

So there’s the game plan for tomorrow.  We’re not too nervous since they are simple procedures with little chance of complication or infection, so in some ways the decision itself was biggest step (for us at least, probably not for Lucas).  Of course we don’t want to get our hopes up too much that Lucas will get to come home with us in the next few weeks just because of these surgeries.  There are still a number of hurdles ahead, not to mention training for us to be able to do upkeep on the trach and g-tube and handle any problems that may arise.  Whenever it happens, it’s going to be a complicated homecoming, but we’re confident that the decision to get surgery is the best for Lucas in terms of helping him recover and ultimately arriving to a less infectious environment as soon as possible.

As we enjoyed a wonderful and moving wedding ceremony on Sunday, we recalled our own celebration back in June. After getting pregnant with Lucas we decided to have what we jokingly called a “shotgun commitment ceremony”, and eventually we brought a group of friends and family together for a celebration on a beautiful farm in northern Virginia.

For personal and political reasons we had chosen not to get married, but it was still important for us to mark this special moment in our lives: the monumental decision to have a child together, our commitment to each other, and the celebration of community that would continue to be a part of our lives once we became parents.

At the time Krista was five months pregnant and we never imagined that two months later Lucas would join us in the world. Nor did we imagine spending the subsequent two months in the hospital with people saying things like “Is your wife pumping, Mr. Hanson?” (There’s actually three things wrong with this statement: we’re not married; Burke’s last name is Stansbury, not Hanson; and it’s just kinda weird when random dudes stop by wanting to talk to Burke about breast pumping!)

Anyway, many people have asked us about how we came up with Lucas’s name, and so today we thought we’d explain a little about where it all came from. The background of our decision not to get married is important because the story actually begins with the last name. You see, a few hours after Lucas was born we still didn’t have a name for him… neither a first name or a last name. We’d imagined hyphenating our last names, but Stansbury-Hanson seemed like a lot of syllables for the kindergarten teacher to handle. We’d also imagined coming up with a new name that combined both our names– Hanstan was a favorite, followed by Hansbury – but that also had its drawbacks. So as we sat down with the birth certificate on the morning of Lucas’s surprise birth we finally decided to give him just one of our last names and make the other one a second middle name. Being anti-patriarchy and all, it seemed only logical to give him Krista’s last name.

So on to the first name. Despite spending weeks in the hospital after Krista went into pre-term labor in Seattle, we managed not to find out our baby’s sex, and therefore we ended up with a lot more good potential names for girls than boys. It didn’t matter much because on August 17 we still hadn’t settled on anything, and in the rush to the hospital at 3:30 am after Krista’s water broke we didn’t grab our scribbled list of baby names anyway.

But we had some favorites, and one of them was Camilo. We had explored a lot of Latin American revolutionary names but most of them – Farabundo, Augusto, Emiliano… – didn’t translate well into English. Camilo had a certain ring, and we liked the story and legacy of Camilo Cienfuegos, a revolutionary with a long, scruffy beard who joined Che and Fidel in the mountains of Cuba in the late 50s in their quest to wrest the island from the grips of a US-backed dictator. Camilo tragically died shortly after the triumph of the Cuban revolution, but he’s still remembered for his hilarious, irreverent antics, which he wasn’t afraid to pull out even in the midst of a treacherous guerilla war. And then the capper: hours before her water broke Krista dreamed that she gave birth to a bearded baby. Thus, Camilo.

In fact, we almost gave him this name as his first, and it should be noted that most if not all of our Salvadoran and Mexican friends insist on calling the little guy “Camilito”, which is all good by us. But something else happened on the morning of August 17 that helped lift up “Lucas” from the list of names. Krista courageously gave birth to Lucas – naturally, if not at home with midwives as we had hoped – right as a spectacular sunrise was lighting up the sky outside the hospital window. She even got to pause at one point between contractions to join Burke and the nurse in marveling at the pinks and oranges stretches across the sky. “Lucas” means “light” or “bringer of light” and on that day the little fella WAS the wondrous light that came into the world. The design of this blog also recalls that beautiful moment when we were so blessed to have Lucas Camilo join us in the world.

So there it is: Lucas Camilo Stansbury Hanson. It’s a mouthful, but he’ll have lots of variations to choose from if he gets sick of “Lucas Hanson”. For now, Burke will continue to be known around the hospital as “Mr. Hanson”, and Lucas by his 1920s train-robber alter-ego name, “Baby-boy Hanson”.

Lucas is doing a little bit better today. The big breakthrough is that after refusing to digest any food all weekend long, he finally started taking breast milk again this afternoon. For babies like Lucas with feeding tubes, “taking food” means digesting the milk and moving it beyond the stomach and into the small intestine. Over the weekend, every time the nurses checked to see what was left in his tummy after a feed, they proceeded to pull out every last milliliter of milk that they’d fed through the tube hours before. Since eating has never been a challenge for the little guy, it was disconcerting to see him refusing food, and clearly was a sign that the infection (confirmed to be a UTI) was ailing him. But after taking a half-sized serving of breast milk at noon today with only a little residual when the nurse checked 3 hours later, he went back up to his full milk dosage at 4:00.

Another highlight of the day was the collection of Lucas’s urine specimen. In order to get a sterile sample, the nurse used a catheter. Lucas was cooperative and let nurse Gigi insert the tube in his penis, but he then refused to pee. We stood watching for a while as she massaged his bladder, but he still refused.  So she decided that making him cough would have the desired effect, which she did by suctioning out his lungs.  And sure enough the pee came, shooting the catheter out and nearly hitting Gigi.  (Ok, so maybe he doesn’t quite have the range to hit his nurse yet, but it was still pretty funny, especially since it’s Gigi’s last day on the job.)  Finally she inserted the catheter back in and got the sample she was after.

Lucas continues to sleep a lot as he fights the infection, but he’s enjoyed having Gramma around reading to him. Yesterday his parents were gone for a full 6 hours in the middle of the day, meaning that Susan got to spend some quality time alone with Lucas.  We’re hoping that the milk and antibiotics will have get him back to full strength soon so that he’ll be more active and alert when Susan swings back through Washington DC on Thursday.  He also needs to get strong for his surgery later this week… but more on that tomorrow.