Lucas Camilo

Tonight Lucas spent over an hour in Burke’s arms at the end of an eventful day.

The biggest moment of the day was his exam and our meeting with the neurologist.  Dr. Chang came to visit Lucas and was surprised to see how much more he was moving today compared to last week.  She was most impressed by his “anti-gravitational movements” (which is to say, he can lift his arms and legs up a little bit).  Having the neurology team confirm that Lucas has made notable progress was exciting.

Dr. Chang and the attending neonatologist believe that there are two possibilities for what is ailing Lucas.  The first is that there was some sort of “event” – a virus or trauma, or something else that we didn’t detect in the final weeks of pregnancy – that caused brain injury, and that’s what is slowing his movements.  This is a better scenario, since if an event caused brain injury then he can heal.

The second possibility is that there is an underlying brain condition that is causing his lack of movement.  If this is the case, his chances for recovery are less.  The fact that he was really active before he was born, and that he is now showing signs of improvement, give us – and his medical team – hope that he is on the path to recovery from injury.  In either case the doctors told us to be patient and they gave us long timelines: from 3-4 weeks in the NICU, to months.

Still, there are other good signs.  The settings on his ventilator are down about as low as they can go, so he’s drawing his own breath more often.  His breathing tube got dislodged today, and in the process of replacing it he went nearly 15 minutes off the ventilator.  The doctors saw him working really hard to sustain his breathing so they decided that he wasn’t quite ready to be extubated, but there’s no doubt he’s moving toward breathing on his own.

And he’s taking breast milk well, so he’s getting more of the good stuff today.  By tomorrow morning he’ll be getting about 2 teaspoons every 3 hours.  Still not enough to beef up his tiny waistline significantly, but assuming all goes well they’ll keep increasing the amount every day.

One other tidbit of note: Lucas takes after his dad and pees all the time.  During his evening diaper change he managed to soak two clean diapers before we could get a third one wrapped around him.  Luckily he didn’t stain his awesome new booties (hand-me-downs from his cousins Tya and Ellody).

Today is the last day of August, exactly 2 weeks since Krista’s water broke at 3:30 in the morning and sent us racing to the hospital a good 6 weeks before she was due to give birth (actually, Krista’s original due date was October 25 but the doctors changed it to late September based on ultrasounds done in Seattle.)  Thus began our adventure with Lucas Camilo at the Washington Hospital Center and now at Children’s Medical Center… Two weeks of life in the incubator, two weeks of stressful trips to and from the NICU.  We love every minute we spend with him at the hospital.  And we can’t wait to have him home.

Unfortunately it’s still going to be a while.  Though Lucas continues to show small signs of improvement, he’s still not breathing on his own and he remains very hypotonic, meaning that he doesn’t move around much or flex his muscles.  We’ve come to terms with the fact that we may never really know why Lucas came into the world this way, and its especially a mystery since he was a very active baby inside Krista’s tummy.  However, knowing the answer might not necessarily help; there’s probably not much they can do to treat whatever happened, and so the bottom line is that Lucas needs to keep getting better on his own.

And he is getting better, slowly but surely.  Again yesterday he showed more movement and had his eyes open for more than an hour as Tio Sha and his sister Julie read books to him.  Every time he rouses from a deep slumber and opens his eyes to the world we jump around and wave and say silly stuff to him as if he can understand, and even though he can’t, its in those moments that you see a little person beginning to develop inside that body.  In fact, Lucas has also started making more little facial expressions, from grimaces to eyebrow raises that seem to express puzzlement at the big people jumping around above him.  So as Lucas waves goodbye to August and hunkers down for the month of September, we look forward to more grimaces, puzzlement, and awe of life developing in front of our eyes, and his.

Lucas woke up feeling better today, and he was pretty energetic when we arrived at the NICU this morning.  His arms and legs were moving a lot more than we’ve seen before, he had his eyes open for a long stretch, and he even made some squinching facial expressions to show that he wasn’t happy with adjustments to his ventilator tube.  He got to hang out on both Burke and Krista’s chest for an hour each, and all the while he continues to do well processing the small quantities of breast milk going down his nose tube.  It’s nice to see progress, if only just a little.  Day by day, poco a poco, baby steps… that’s what we keep telling him.

He had more visitors over the last couple days: Max and Jess (who brought exciting finger puppets), Sha (with some new reading material), Ilana and Buddy (with a CISPES paycheck for Burke!), Becca and Becca (with more finger puppets), and Simon (who took us to see a movie after the visit, a nice break from reality.)  Meanwhile, Lucas got to check out all the wonderful, creative cards that his 4-year old cousin Madden has been sending him.  He was a little surprised to see the one that said “Lucas loves Madden” given that they’ve yet to actually meet, but he took her word for it.

Early next week we’ll sit down with all the doctors and specialists looking after Lucas and try to get a big picture of what’s going on and what lies ahead, knowing that they probably still won’t have a diagnosis.  The latest genetic tests for Prader-Willi syndrome came up negative, so they’ve pretty much exhausted the possibility of chromosomal disorders.

Tonight we’re back at the hospital after watching the movie “Taking Woodstock”, and it’s nice to spend Saturday night with Lucas, play him some Sweet Honey and the Rock on the stereo, and tell him stories of hippies sliding in the mud.

Lucas takes down 3 milliliters of milk for lunch

Lucas get lots of attention, even if he’s not usually awake to appreciate it.  Below he visits with his grandmas, gets to hang on Krista’s chest for a couple hours, and reluctantly receives his morning dose of the Washington Post (which usually causes an increase in Lucas’s heart rate, especially when he hears the latest about the health care debate.)

The big news today is that he took his first couple shots of breast milk: 3 milliliters each, 3 hours apart, through a tube in his nose.  Go Lucas!

(*note: we posted twice today, see next post for an update on Lucas’s condition)

We’ve started a morning ritual in which we sit on the floor of our new apartment, light a candle, and imagine positive images of our little guy – Lucas crying, laughing, being held in our arms without tubes coming out of him, and someday hiking with us in the mountains of the Pacific Northwest… It feels like these morning meditations not only help our state of mind, but might be helping Lucas too.  All the fancy machines, medical knowledge, and highly trained specialists will ultimately play a part in his recovery, but so far they haven’t been enough to even figure out what’s wrong with him.  Sometimes you have to turn to the cosmos and rely on positive spiritual energy to really make a difference.

As we meditated this morning, Krista concentrated not only on Lucas’s well-being but also that of the other 52 babies that currently reside in the Children’s Hospital NICU, many of whom are as sick or sicker than Lucas.  In many ways we find ourselves well-prepared to deal with this challenge and those to follow: we have health insurance (through Burke’s job at CISPES), access to the best medical technology and professionals anyone could imagine, and the education to be able to both process the complex information the doctors are throwing at us everyday, and make tough decisions about how to proceed.  So while many people have marveled at the enormity of the challenge that we’re facing (through Lucas), we actually feel very lucky to be in the position we are in, especially given the support of all our friends and family.

While Lucas is still getting most of our attention everyday, and while we really appreciate the energy he’s receiving from all of you, we’re trying not to lose perspective on everything else going on in the world, such as the intense suffering that many people experience, or the beautiful strength of those who struggle through such suffering everyday.  So we’ll continue to keep in our hearts the 52 other babies in the Children’s hospital NICU, as well as young people all over the world who are fighting the odds.

And in thinking about life outside room 638 at Children’s Hospital, we want to close this reflection by remembering a dear old man who passed away 2 days ago and the ripe old age of 93.  We met Julius Margolin when he was 90 and his musical career was just gathering steam after a lifetime of committed activism, which he continued until his death.  We hope that Lucas not only lives to the age of 93 but that he follows in the footsteps of courageous souls like Julius.

Today we met another family in the NICU who had been in the hospital a couple weeks more than us, and they warned us that every day is up or down or both.  We’re definitely finding that to be the case.

Although Lucas’s vital signs continue to improve, he’s still moving much less than most preemie babies.  They call it hypotonia, or low muscle tone, and it’s a big part of what is puzzling all the specialists.  Today we saw more of those specialists and here’s the latest:

The neurology team says that the MRI came back showing more cranial bleeding (which isn’t necessarily surprising for a pre-term baby), but no significant damage to Lucas’s brain or spine.  They said that they were now suspecting that his lack of movement is caused by something in the nerve/muscles, not the brain.  We weren’t sure whether this was a relief…

Then the neuro-muscular specialist came by and he examined all three of us.  Burke and Krista had to squeeze his hand, close our eyes tight, say lalala, gagaga, and answer questions about family history of muscle problems (we have none.)  He then examined Lucas with more taps and squeezes.  He told us that based on the bedside examination he saw good neuro-muscular functions and that therefore Lucas likely does not have a neuro-muscular disorder.  He recommended that the neurology team do more looking at Lucas’s brain.

Again, it’s hard to know whether this news is good or bad.  Lucas’s great nurse today told us that moving away from neuro-muscular problems is a good thing — the brain is stronger and more able to compensate or repair itself if it’s been injured, she said.

Finally, we didn’t see the geneticists today as they’re waiting for some very specialized chromosome tests to come back.  One thing they’re testing for is a rare disorder called Prader-Willi Syndrome, which causes severe hypotonia in babies.  However, our own google research found that a common physical sign of Prader-Willi in babies is small hands and feet.  Given that Lucas’s feet are already a baby-size 10, and that every nurse comments on his long, long fingers, we’re not holding our breath for the Prader-Willi test to come up positive.

So we wish there were more good news to report, but perhaps ruling out, one-by-one, the really bad diagnoses IS good news.

Look out for more pictures and reflections later tonight…

Ever since we heard the terrifying news last week that Lucas possibly suffered some sort of serious brain injury in utero, we’ve been nervously awaiting further diagnosis from the Children’s hospital neurological team. Yesterday afternoon they hooked Lucas’s head up to about 30 different colored wires and monitored his brain for 24 hours.  We held his hand and told him he didn’t really look that bad.  It was a good thing he didn’t have a mirror, though, because he looked a little like a baby Frankenstein, at least from the top.

Today around noon two neurologists came in to examine Lucas and look at the results of the EEG (brain activity test).  We held our breath and waited while they tapped his knees and elbows, peered into his eyes and analyzed the EEG results.  And then the neurologist turned to us and said that she thinks his brain activity looks pretty good; perhaps like the activity of a baby a few weeks younger than Lucas, but that could be a result of whatever is ailing the rest of his body.  In other words, her best read right now is that any slow functioning of the little guy’s brain, and his lack of body movement, is a symptom of something else, not the cause.  While it doesn’t bring us much closer to understanding what is making Lucas sick, it was a relief.  An even bigger relief will be hearing good results from the neurology team after his MRI test tonight.

We celebrated by giving Lucas a bath and a bit of a shampoo to get all the EEG glue out of his hair.  He took it well, and he had the softest hair imaginable after it dried.

Lucas also had three more visitors today – Tracy, Daniella, and Erin – following visits from Sha and Rosa yesterday.  Although he barely opened his eyes, we’re pretty sure he appreciated making new friends.

Lucas is settling in at his new home away from home. He’s got a pretty sweet pad and continues to get lots of visits from his parents and grandparents. Now that the doctors at Children’s have gotten to know Lucas they’re ordering more tests, including another EEG test (which measures brain activity) and an MRI (which shows the brain structure in more detail than the ultrasound and CTScan that he’s already had.) In the meantime, we’re seeing a little more activity today, and all of his vital signs and respiratory functions remain stable. It’s clear from what the doctors here have said that Children’s hospital has more resources to assess the issues with his brain, but it still looks like a full diagnosis isn’t coming nearly as soon as we’d like. So we’re settling in for the long haul alongside Lucas, charting out the bus route to Children’s and getting ready to spend some significant time here.

As we look forward, we’re so thankful for all the incredible love and support that’s been channeled to us and to Lucas in the last week… not to mention the 3 weeks before that when early labor had Krista in and out of the hospital in Seattle. The support has come in the form of visits, phone calls and emails, comments to this blog, not to mention good vibes and prayers (even from a few atheists!)

It’s during these moments in life – when we’re struggling to keep it together – that love from friends and family matters so much. Your support is what is making it possible for us to stay strong, keep up hope, and believe that Lucas will be ok despite all that he’s up against. As many people have said, he is indeed a fighter, and its that fight, along with the love he’s getting from all of you, that may just be the combination that helps overcome the odds.

And finally, a special thanks to his grandparents and Tia Ashley for being here with him so much over the last 5 days. Burke’s parents head home to the northwest today, and Krista’s mom tomorrow morning, but we’re sure they’ll be back soon enough…