Lucas Camilo

Today is the last day of 2009, a year that we’ll never forgot.  A lot of amazing things happened in our lives in 2009, from witnessing the victory of the FMLN in El Salvador to throwing a commitment ceremony in Washington DC.  Of course, August 17 will go down as the most amazing moment of the year: the day Lucas Camilo arrived in our lives two months before we had planned.  During that first week of his life things didn’t look so good, and we were grateful to be surrounded by family and good friends as Lucas struggled to survive.  We thought we’d include a picture from one of his first days in the world to show just how far Lucas has come.  (Don’t worry, we’ve got some more pictures at the end of this post that are much more uplifting.)

Lucas on Aug. 18, day 3 of life

The birth of your own child is a mind-boggling, life-changing experience.  When your child is born and doesn’t breath or move, and doctors tell you might have to starting thinking about “ethical choices”, the grief is indescribable.  And then he begins to get better, and it’s exhilarating.  Over the past 4 1/2 months we’ve been through more with Lucas than we could have ever imagined, and each day that we wake up and see him wiggling in his crib is a blessing.  Two days ago Burke got hit with a fever (probably the flu) and had to quarantine himself until he felt better today.  Moments like this, when we’re not able to hold or interact with Lucas for extended periods of time, reinforce how strong the love and attachment we feel towards him really is.

Of course, as we often remark on this blog, there are many more challenges ahead.  Lucas’s health is improving, and he has come so far since the days when that picture was taken.  And yet, at times his progress feels painstakingly slow.  We still don’t know what to expect 6 months or a year from now, and yet we feel well prepared for whatever comes.  We can’t wait to see Lucas continue to grow and develop, accomplish new feats, make new friends, and further explore – with his characteristic wonder – the world around him.

We thank everyone for following Lucas’s story and for sending so much love and support our way since Lucas was born.  We wish you the best in the new year and hope that you keep in touch and keep following the blog.

Oh yeah, and here’s those pictures we promised from the past month:

and something else we promised in a post a few days back is a list of the organizations that we chose to support this year, in part as a form of gratitude for all the support we’ve received.  So here it is, with links to the respective websites.

Lucas took a big trip out of the house on Monday, returning to Children’s Medical Center for consecutive appointments with three different specialists.

Lucas shows off his new Bivona trach

We started with the ENT (Ear, Nose, and Throat doctor) who did the surgery to place Lucas’s trach nearly three months ago.  We’ve had lots of questions about home trach care – about suctioning, humidity, secretions, irritation of the trachea, and developmental concerns related to the trach limiting Lucas’s head movement.  The latter issue has been particularly frustrating since the “trach guru” in the hospital effectively blocked us from trying a different trach (despite the fact that physical and occupational therapists had recommended it).   But yesterday, the ENT trumped the trach lady after hearing our arguments and after he put a scope down Lucas’s trach and saw that the tissue was completelyhealthy.  At the end of the visit the doctor removed Lucas’s old Shiley trach and put in a Bivona Flextend.

In the medical equipment world people like to use car metaphors.  More than once we’ve been told that a Mercedes version of some piece of equipment exists, but that this Toyota (ventilator, air compressor, etc.) will do Lucas just fine.  We like to believe that the “people’s medical equipment” is as good as the fancy stuff, but in the case of the trach, the Mercedes turns out to be even more decked out than we had imagined.  The Bivona trach has an extra tube that sticks out further from Lucas’s neck and hangs lower, so if he wants to move his head from side to side while he’s lying on his back his chin won’t get caught.  And it’s made of a much more flexible plastic material than the hard, rigid plastic on the old Shiley.  Before, moving Lucas often caused the vent tubing to pull on his trach, which in turn pulled his neck.  Now, the flexible trach absorbs a lot of the movement so his stoma is spared the stress and possible injury.  The doctors say that suctioning may be more difficult now, but we’re still happy to have the elite trach.  It seems like a real triumph, in fact; funny the things we get excited about these days…

Our second stop was with the gastroenterologist and the purpose of the visit was twofold: first, to check his weight gain, and second, to learn how to change his feeding button.  On the first front, the doctor was happy to see that Lucas had gained another pound, and while looking at his chart and chatting with us, she agreed that we could stop adding formula to supplement the calories in his breast milk.  Then she went over to examine Lucas – who had stripped down to his diaper – and immediately changed her mind: “he’s still too skinny to take away any calories!” she said.  So we’re keeping the supplemental calories AND increasing the quantity of breast milk, and hoping for even more chub.

At the end of the day Lucas had spent nearly 6 hours out of the house.   He was awake most of the time, and he probably had some flashbacks from his time in the NICU as he underwent the usual doctor poking and prodding, including a rather uncomfortable experience getting a urine sample.  He also wasn’t a big fan of the cold, winter air on his face during transport.  So when we finally made it home Lucas curled up and took a long nap… and we pulled out a six-pack, ordered pizza, and celebrated a successful day.

It feels like only yesterday that we were blogging about Lucas hitting the 5 pound mark… in fact it was more than 3 months ago, but yesterday he officially hit TEN pounds, or 4550 grams, and what a difference doubling your weight can make!  We gave him a bath last night in the little pink tub we brought home from the hospital and he barely fits.  Meanwhile he’s wearing cloths that say “3-6 months” on the tag instead of “preemie-small” (which is where he started out).   And if you could just see the chunkiness in his thighs!

Speaking of baths, Lucas had quite an episode at the completion of last nights satisfying soak.  After Krista rinsed Lucas off, Burke picked him up, rolled him up in a towel, and tempted fate by seating the little guy on his lap without a diaper.  For a while all was merry as Krista straightened up his crib and prepared the scale.  In the end, though, Burke’s roll of the dice proved disastrous: suddenly Lucas’s face contorted, his rear end started to rumble, and out came a giant diarrhea right in daddy’s lap.  Burke managed to slip part of the towel under him in time, but Krista was no help, cracking up uncontrollably on the other side of the room.  Lucas’s present to his parents, perhaps…

Finally, there’s a new stuffed animal in town who Lucas has taken quite a fancy to.  His name is Jesus (the Spanish pronunciation, i.e. “Hey-sous”) and he was so named since Lucas first laid eyes on him during Christmas day.  He’s a goat with lots of long limbs that are the perfect size for sucking and gripping, and Lucas makes googly eyes every time the two lay across from each other in the crib.  We think that he’s excited to have someone his length around to play with.

We celebrated solstice on Monday with Gramma Susan, enjoying the cozy darkness of winter while also cheering for the coming of more light as the days start to grow longer.  Our friend Hally gave Lucas a santa outfit, with a baby santa hat that we had to stretch out in order to slip over his big head.

The little guy seems to be celebrating the transition into this new season by doing some of his best breathing yet.  Overall, he’s had more days lately when he can go 3+ hours off the vent, and fewer moments when his trach gets clogged and we need to move quickly to remove the plug.  Yesterday was one of his best ever, though, with his oxygen saturation monitor riding at 100 % almost the entire day, even when we turned off the vent for long periods of time.  Another exciting development related to Lucas’s lungs is that he’s coughing more now, meaning he makes an effort to clear clogs in his airway and signal to us that he needs help.

Lucas also continues to look around and explore his surroundings more, which we captured in the mobile video a few days ago.  He still tracks objects slowly at times — and not at all when he doesn’t feel like it — but when he’s in the mood and in the right position, he’ll move not just his eyes but his whole head, if only slightly, to look at something interesting.

In other news, Lucas has been pooping lots lately (or having many “bm’s”, as his nurses say).  Over the course of the last two weeks he went from only pooping once every other day to soiling his diaper four times a day.  He may actually be having a small bout of diarrhea but seems perfectly happy in every other way.   Lucas uses cloth diapers with a cloth cover/protector, and he’s been pooping so much he’s maxed out his diaper cover supply (four) each day for the last week.  We never imagined we’d be so happy to have a washing machine!

Finally, Lucas has been smiling a lot recently.  He still has a low-muscle-tone smile, but it makes it all the more beautiful knowing has to work harder than most babies to flex his cheek muscles and show he’s happy.  They say that it takes more muscle tone and strength to smile then to frown, and since he’s been doing more of the former lately than the latter we imagine that he’s a pretty happy baby… which says a lot given all that he’s been through so far, and the fact that he still gets a plastic catheter shoved down his windpipe ten times a day.  It must be all the fun music he gets to listen to (we just got a batch of old-school children albums on vinyl); or maybe its all the soft, cuddly stuffed animals passed down from cousins, neighbors and friends; or maybe its the collection of flying critters on his mobiles; or perhaps its just the love…

A foot and a half of snow fell in Washington DC over the weekend and had we not been shoveling the steps and walkway every 3 hours on Saturday we may have gotten stuck in our basement apartment.  As it was, the four of us managed to stay warm inside with hot apple cider, while also escaping into the snowy streets a couple times (Krista, Burke and Susan at least, not Lucas).  It was beautiful and you can check out a few pictures we took at the bottom of this post.

Lucas mostly busied himself with his favorite flying animals on the “modern” (battery-operated) mobile.  But he also discovered the wonders of self-propelled toys, moving to the other side of the crib where his artsy, old-school mobile is located (a present from Tia Ashley).  We tied a string to his wrist so that he could make the owl, fox, and froggy fly, and he loved it.

We also want to wish a happy winter solstice to all!  Lucas, for one, is happy to be celebrating holidays – be them pagan or religious – at home this December…

Its starting to feel like the holidays around our house.  We hung up a strand of white lights around Lucas’s crib, the kitchen is overflowing with baked goods, snow is piling up outside, and we have family visiting.   We even bought the Bob Dylan Christmas album, for Lucas’s sake, of course.

Krista’s mom, aka Gramma Susan, arrived on Wednesday well ahead of the big snow storm (there could be up to 20 inches on the ground by tonight!)  She and Lucas had met before, but both times Susan was here in the fall Lucas was in rough shape and barely opened his eyes to see her.  This time Lucas is feeling great (maybe because of all the pumpkin pie/zucchini bread/vegan cookies/tea cakes/fudge/biscotti in his breast milk), alert and ready to snuggle.  He even got in the holiday spirit and agreed to wear a Christmas outfit.

For the last week we’ve started off our morning by listening to Democracy Now’s coverage of the climate change conference in Copenhagen.  As each day goes by, and the world seems further away from an agreement that will truly reduce the greenhouse gases that cause global warming, its hard not to get depressed.  Having just brought a new life into the world, its scary to imagine what it will be like a few decades from now when Lucas gets old enough to engage and understand the environmental, social and political complexities of our earth.

We’ve been involved in activism and organizing now for most of our adult lives and so its probably no surprise that we often feel daunted about the direction of the world: from economic collapse which punishes the poor (while bankers and rich people get bailed out), to continued US-sponsored wars, to trade policies that further impoverish developing countries, to racist profiling of immigrants, to environmental destruction… and so on.  To be honest we thought a lot about whether or not we were ready to bring a child into the world at this moment in history.  In the end we decided that the love and inspiration involved in expanding our community outweighed our concerns about the future of the world.  And indeed, sharing life with Lucas so far has been amazing, perhaps even more so because of the health challenges he’s faced.

But we still can’t help but agonize about the future sometimes, especially at these pivotal political moments when world leaders have a chance to take action in order to mitigate the most significant environmental problem facing us today… and apparently don’t have the will; or when lawmakers in our country have the chance to reform a tragically broken health care system… and will likely fail; or when a president, who appeared to be the most progressive elected leader in a generation, has the opportunity to advocate for real changes to our financial regulatory and tax system… and won’t even bother trying.  Not that we mean to get you down, just to say that it’s a tough political moment, especially if you’re on the progressive end of the political spectrum.

So as we continue following the events in Copenhagen and imagine how to explain and teach to Lucas about all that is important to us, we’re also thinking about how to help affect change now.  For us, the end of the year provides an opportunity to contribute to a variety of organizations that are organizing to confront all the policies that we mentioned before.  This week we’ve laid out our giving plan and will be donating to 15-20 different organizations (we’re still finalizing it): groups that tackle environmental justice, international solidarity, media reform, immigrant rights, racial discrimination and economic inequality, and health alternatives.  We’re giving more in that last category than in previous years, including to a local birth center (we had hoped to have Lucas outside the hospital with midwives), to a group that connects and supports parents of preemies, and to a fund at Children’s Medical Center for parents of children with special needs who don’t have the resources to cover their expenses.

This giving is one little way that we can try to make the world a better place for Lucas as he gets older, and its also a way for us to recognize and pass on some of the amazing love and support we’ve received over the past four months.  We’ll share the list of groups that we’re giving to this year in a couple of days, and we invite you to join us in supporting these groups and others that are working to make our planet a more humane and healthy one to pass on to Lucas and all children.  Despite the many injustices in the world right now there are also many inspiring movements that are working to challenge the status quo – and that’s what gives us hope as we sit down to do physical therapy with Lucas on a cold winter morning.

After the heaviness and detail of our last post we thought it would be good to share a fun video of Lucas today.  Plus, one of Lucas’s avid blog followers complained the other day about the lack of recent Lucas videos – sorry!

Here he is doing his wake-up routine, which usually includes lots of wrist-sucking, shoulder rolling, and satisfied, open-mouthed smiles (which only come after the wrists have been adequately sucked, of course.)