Lucas Camilo

Today Lucas got lots more loving from his grandparents, while the doctors were busy paying attention to his head.  They’re worried that the fluid in his brain is continuing to build up (see previous post on “Draining fluid”), so Lucas got his head measured multiple times, then had an ultrasound, and then finally went down to the second floor for an MRI.  They’re getting ready to drain some of the excess fluid tomorrow, either through another spinal tap or by going through the soft spot on the top of his head.  It sounds scarier that it really is, but still something we’d rather avoid.  Who knew we’d ever be crossing our fingers and hoping for “just” a spinal tap?

Meanwhile, Lucas continues to receive great love from friends, old and new.  A friend he hasn’t even met yet (in fact, who we haven’t even met yet!), sent him a card and poem a couple weeks ago.  Many people have helped us put words to the challenge and wonder of Lucas’s situation, and this poem did especially well.

Lucas Camilo

Your sacred way of growing
teaches us
to free ourselves
from the limits of narrow expectations
and its gradual changes over time
and to feel, to sense
with abundant clarity
the endless possibilities
of ways to move
in this world,
of ways to move
this world

keep moving, baby
in only your way
keep teaching, baby
everyone’s listening to what you have to say

One of the big challenges for preemie babies like Lucas is holding their temperature. So we were a little nervous the other night when one of his nurses suggested wrapping him up in a blanket (called “swaddling”), turning off the heater on his incubator, and seeing what happened to his temperature.

We came in the next day and Lucas was still swaddled in his blanket with the heat off, and since his teeth weren’t chattering they figured that it was graduation time: on to the crib!

The fact that he can hold his temperature means that he’s one step closer to going home. Meanwhile, they’ve got him up to 50 ml of breast milk every 3 hours, which comes out to about 13.5 ounces a day.

He’s been snoozing a lot since graduating to the crib – taking full advantage of his new digs – but he woke up long enough this afternoon to observe that his grandparents (Nonna and Papa) are in town. Their visit coincided with Nonna’s 63rd birthday yesterday, and her big present was getting to hold Lucas for the first time. She also spent a lot of time today helping Lucas practice his stretches, and was lucky enough to get to change two preemie diapers filled with poop!

This afternoon Burke’s parents hung out with Lucas for a while as we snuck off for a hike in Rock Creek Park. It felt great to be outside on a beautiful day, and to lay in the hot sunshine with our feet dangled in the cool, fresh water.

The long-awaited family meeting finally happened at the end of this last week. (Actually, it ended up being 3 separate meetings: first with the neonatologist, then with the neurologist, then the geneticist.) The idea of the “family meeting” is that we hear an update on the big-picture status of our baby and then get to ask all the doctors following his case the burning questions we have. For those that have been following Lucas closely, you’ll notice that most of this information is nothing new, but it was still good to have these conversations.

The neonatolgist who’s been looking after Lucas since the beginning of September decided to sit us down on Thursday since he’s not a fan of the big, intimidating family meeting structure. He’s a thoughtful, young doctor (he and his wife just had their first baby two days before Lucas was born) and we trust his perspective and advice. He explained in detail the very extensive “work up” (series of tests to check for infections and disorders) Lucas had been through, and the fact that he presented normal in all cases, pending a few tests that will also likely end up being negative. The conclusion, he said, is that we may never have a diagnosis for Lucas. For doctors this is a hard reality, because a big part of their job is being able to diagnose what’s wrong. For us at this point it’s ok, since what they’re testing for (mostly metobolic disorders) are usually so devastating that the prognosis for Lucas would be grim.

As 2:oo pm on Friday rolled around – the actual time of the family meeting – only our favorite neurologist was around in the halls of the NICU, so we decided to sit down with her alone to get more of her thoughts about what was going on with Lucas’s brain. Short a diagnosis, the primary factor ailing Lucas is the major bleed in his brain that happened around the time of his birth. We still don’t know why it happened, but the fact that he’s getting better shows that brain injury – and not a central nervous system disorder – is likely the cause of his low muscle tone, and of his struggles to breath. The neurologists are impressed with his continued movement and increasing strength, but they also warn that he’s recovering slowly and that it probably will take months for him to have the strength to fully develop the important skills babies need to survive without tubes sticking in them: most importantly, breathing and feeding. Therefore, they recommend as a possibility that Lucas get surgery to open a direct airway in his windpipe (called a tracheostomy) so that he can come home with us in the next month and be able to breath without the ET tube going down his throat. We had a lot of questions about this recommendation, but we’ll leave that for another post since for now we feel confident that Lucas deserves another shot at breathing on his own before considering other possibilities.

The neurologist also told us that they’ll wait a few months to do another MRI to assess Lucas’s brain structure and functioning. In the meantime, she confirmed what we have heard from the physical therapist, which is that there is much that we can do to help stimulate his continued development, both in terms of strength and flexibility of muscles, and in terms of cognitive functions. You’ll all be happy to hear that playing him music (and singing along) is a very good thing, so keep those baby CDs coming!

Finally, we sat down with the geneticist about 2 hours after the set meeting time. He presented us with the results of the “microarray” test, one of the last tests that had been pending. The microarray essentially scans all of the chromosomes up close to see if there is anything missing, or extraneous, on any one chromosome. Once again, Lucas came up normal (he had a small gain on one chromosome, but the geneticist told us that it’s clinically insignificant). There’s one metabolic test still pending, he said, but it’s unlikely that it will come back positive. However, the geneticists still haven’t closed the book on Lucas, and they’ll continue observing him occasionally in the coming months.

Lucas gets a bath from mom

So that’s the report. Lucas is still a mystery to the doctors, but he’s becoming less so to us. Whatever happened to him is proving tough to recover from, but he IS recovering. He’s doing it on his own time, and as he does, we’ll continue to sit close to him, help develop and flex his muscles, stimulate his brain with bright colored stuffed animals every time he opens his eyes, and rock out to his favorite tunes. We’ll talk to him, touch him, and hold him, every day that we can.

(PS: Lucas says “happy birthday grandma!” aka Nonna who arrives for a visit today)

Today we’re celebrating Lucas’s one month birthday.  It’s exciting to commemorate this special day with him, especially given that some doctors told us early on that Lucas might not make it this far.

Yesterday was a really good day for the three of us, even though Lucas was back on the ventilator.  The little guy was feeling stronger than ever, gripping our fingers with more muscle than his previous strongest day early last week.  He was also awake, with his dark blue eyes wide open, for almost two hours in the afternoon.  And he surpassed his previous high mark on the cuteness barometer, this time by accessorizing – check out the new hat and booties!

Today Lucas is snuggled in with some of our favorite stuffed friends (he’s got the cow, elephant, dog and red blood cell hunkering down with him).  We haven’t been able to hold him these past couple of days because his lungs are a little more fragile after his extubation and re-intubation.  Fortunately we’ve been learning more from the hospital’s physical therapist and from one of our midwives about how to snuggle, soothe and rock him even when he’s in his “nest.”

So happy one month birthday Lucas!   Keep wiggling, and keep building that strength, one day at a time.

Yesterday Lucas began his second voyage into the world beyond the endotracheal (or ET) tube.  First, at around 11 am on Monday the doctors shifted the settings on his ventilator to “CPAP” mode which means that the vent was no longer initiating breaths for Lucas.  The tube remained in place throughout the day, but Lucas had to take spontaneous breaths, with the machine still assisting him through extra pressure and oxygen.

Lucas took the change in stride, occasionally taking breaks from breathing for up to 7-8 seconds (which had his parents holding our breath along with him), and occasionally experiencing periods of takipnia (or rapid breathing).  But the oxygen saturation in his blood remained stable through it all, and he made it through the night with flying colors.

Based on his performance over night, the docs said this morning that he was ready to have his ET tube pulled.  The next step, they decided, involved a funky contraption called this SIPAP (prononced CY-PAP and meaning “Synchronized inspiratory positive airway pressure”).  This noisy sucker works similarly to the ET CPAP mode of the ventilator, but without a tube sticking down his windpipe.  Rather, a smaller dose of pressure and oxygen (a “burst of air”) is pushed in through a couple of prongs in his nose, but he only takes breaths when he decides to, and mostly using his own energy to breath in.

Lucas went at it on the SIPAP for a couple hours but from the beginning it didn’t seem like a good fit.  The air going through his nose was often escaping through his mouth, making it hard for the air bursts from the machine to do the job of assisting him.  The only way to keep the air in was by putting a pacifier in his mouth, but after a while he got tired of sucking on it.  At around 3 this afternoon he started looking like he was working too hard, his whole body straining with each breath.  The extra effort to take breaths in didn’t translate into powerful exhales, and not pushing enough CO2 out of his system led to his oxygen saturation level dropping, a bad sign.  Finally, the doctors decided to put the tube back in and let Lucas rest.   Round 2 lasted more than a day, but we’ll have to wait a little while longer for the tube to come out permanently.

It’s tough to see him struggling like he was, and discouraging that he had to go back on the ventilator, but rather than feel down we’ll take our cue from Lucas, and frankly he seems to be in pretty good spirits.   Two hours after the re-intubation he’s wiggling around more than before, looking up at us with one wide eye, and already gearing up for round 3.

Tired out..but at least I got all that stuff off my face for awhile!

Lucas rides the SIPAP machine

We’ve talked to a lot of people and read sections of books and articles about the experience of parents who have premature babies struggling in their first weeks or months of life. Already with Lucas we’ve gone through a range of emotions and challenges that would have seemed unimaginable to us before this all began, but we’ve managed to tackle those challenges as best we can, just like many parents we’ve met here in the NICU and many others who’ve dealt with such challenges under even more difficult circumstances (for example, not having access to the best neonatal medical facility around.)

When our friends and family graciously praise us for our will and courage, we usually say, hey, we’re just doing what we have to do to help give Lucas the strength to recover – how could it be any other way? But in those moments when we begin to waiver in our hope, or worry about the future, we sometimes question whether we’re really up for this. Like many parents-to-be, we had fantasized about the wonders of having a healthy little baby, and Lucas’s early life doesn’t fit into those fantasies. There is grieving in not having those expectations met, pain in imagining a future that looks different from the one we had envisioned, and sometimes even that question, “why us?”

And then the other day one of our friends – a wonderful mother and grandmother – said something that struck us both: “Lucas chose you”, she said. “You think that you chose to have him, but really it was the other way around; he picked you out as his parents knowing how tough the path ahead was going to be. He knew that he would need strong parents.” The more we think about this idea, the more it gives us strength and confidence in embracing Lucas’s struggle. Lucas’s undiagnosed sickness is by no means a burden for us; its a responsibility, perhaps even a blessing.

We also know that in picking us, Lucas didn’t just pick the two of us, but a large web of our friends and family that has already become part of his support network. Though neither of us ascribes to a particular religious tradition, we do believe in the concept of being blessed. As we continue to confront these challenges together, we know that we – the two of us and our community of friends and family – are blessed to be part this beautiful little life. And, we believe, he is also blessed in choosing us.

Compared to the fireworks of last weekend’s extubation, things are pretty quiet around room 638 these days. The biggest excitement on Saturday was a visit from Tia Ashley, who got to hold Lucas for a while before heading back to New York in the afternoon. The little guy was pretty sleepy during the visit but he cracked his eye(s) a few times to check out who this new person holding him was (not mommy OR daddy!) Ashley looked forward to telling stories of the visit to Lucas’s 3 little cousins back in Seattle, who continue to send him pictures and cards almost daily.

Lucas’s weekend was also brightened by a snazzy, multi-colored, “unisex”, preemie vest. (Note to our mothers: Lucas’s aunt had special permission to buy this NICU-ready vest, but we’re not soliciting more such online purchases since at the rate he’s growing he’ll be sporting full-size newborn gear soon enough.) Lucas had a few “episodes” of dropping his heart rate and oxygen saturation on Saturday, but they most likely had to do with water or secretions clogging up his ventilator tube. So on the whole he had a mellow couple of days as we look forward to sitting down with doctors and specialists sometime next week to talk more about the plans ahead for Lucas.

Yesterday Lucas tipped the scales at 2280 grams, which according to the conversion calculator makes him over 5 pounds for the first time. God job little buddy! Lucas weighed 4 lbs 4 ounces when he was born but dropped to 3 lbs 12 ounces in the first days of his life. Since he started on the breast milk two weeks back he’s been slowly climbing up in weight and he’s even developing a bit of a gut.

Five pounds is actually the somewhat arbitrary marker in some NICUs for when a baby is getting ready to go home, but we know that Lucas still has a ways to go. He may get another shot at extubation in the coming days, and if he is able to breath on his own for an extended period of time then that would be another step in the right direction. But despite the progress he’s made in the last few weeks, he still isn’t moving nearly as much as a baby his age and size should be, and his hypotonia (low muscle tone) remains a mystery.

The doctor’s haven’t given up on finding a diagnosis, and continue to test Lucas for a variety of increasingly rare disorders. We, on the other hand, understand that they may never reach a diagnosis, and so we’re mostly waiting and observing to see if he continues to get better. After a couple of very positive days earlier this week, Lucas has been somewhat more sleepy and lethargic the last 2 days. This could mean that his hydrocephalus (fluid in the brain) is increasing again, so they gave him a head ultrasound this afternoon to check things out. Then suddenly he started wiggling around more again, as if to say “I’m doing ok, thank you very much!”

Finally, the little guy continues to receive lots of visitors, and in the last week he’s met a bunch of new friends: Rebecca and Vera, Shana, Dan Moshenburg, Ulyses, Aaron and Evan (1 1/2 year month old Earl had to wait in the lobby), Lisa, Jacoby, and Claudia and Geoffrey. He also got return visits from Isham, Alexis and Heyward, and Simon (along with Paola and Frijolito, who hadn’t yet met Lucas.) Meanwhile, the spirit of our hard-core cycler friends – who biked 180 miles last weekend – lives on in Lucas’s beautiful blanket, made by Freddy and Story and signed by the crew.