Lucas Camilo

After much suspense and deliberation, Lucas went with the chili pepper costume for Halloween. It wasn’t an easy decision: he certainly charmed a few nurses with his pumpkin get-up, and the bunny ears received much praise from his adoring fans on the internet. But in the end he continued a family tradition started by his cousin Ellody of always being a chili pepper on your first Halloween.

Lucas bounced back well from the exhaustion of his 2 days off the vent. There’s no doubt he was tired, and therefore a bit relieved to be back on the ventilator after working so hard to breath on his own. Ever since the trach collar was removed and the vent replaced he’s been very active and alert, showing off at times and acting a little fussy at others. He got a couple of shots yesterday afternoon and threw a fit, complete with racing heart rate, red-faced contortions, and even a few tears running down his nose. We think that he’s sick of the hospital and ready to come home.

It seems clear that the work of breathing on his own played a part in slowing down his growth. He recorded a weight loss again on Wednesday – the day he finally hit the wall on the trach collar – before finally gaining 150 grams yesterday. The doctors have been concerned about his weight gain and we admit that he needs to put some meat on his bones. Lucas’s weight is now down to 7 pounds 3 ounces which, according to a baby book we checked, puts him in about the 15th percentile (based on his adjusted age of a few weeks old.) By contrast, his length of 24 inches puts him in the 95th percentile for a baby his age. If you haven’t noticed from the pictures, he is one long, scrawny little dude!

We talked to a couple of doctors from the pulmonolgy department yesterday who gave us more insight into Lucas’s breathing challenges. They said that a baby like Lucas who’s already had so much trouble breathing – such as respiratory distress at birth, collapsed lungs, and weak muscles around his airways that limit the air coming through – will likely see continued struggles with his respiratory system in the early part of his life. For now, the effort of breathing off the vent is huge, something like 100% more calories burned, and so if we want him to continue growing and getting stronger in other ways then it will be important for him to remain on the vent some of the time in the coming months.

Meanwhile, we’re getting the house ready for Lucas’s homecoming (did we mention that he’s coming home soon! :-) Of course we’ve been mentioning it repeatedly for about 2 weeks now and frankly we’re getting a little anxious. But we have a target date of next Wednesday and we’re doing all we can to move forward with the many details that need to get worked out for his discharge (more on that later.)

And did we also mention that Lucas’s grandparents, Nonna and Papa, are back in town? Unfortunately they can’t see him because of the restrictions at the hospital, despite our best efforts to get a special letter for them. However, as a consolation prize they got to help set up his crib yesterday, and go shopping for all the little things he’s going to need when he gets home. Nonna, who’s an interior designer, approved of the Italian crib that we picked up for a good price on Craigslist, and she gave it the perfect touch with a skirt inherited from his cousins.

Speaking of his cousins, he also inherited a fancy new onesie from them, and it matches well with his favorite pumpkin hat…

After nearly 48 hours off the vent Lucas finally hit the wall this afternoon. Shortly after we posted a glowing report about his 2-day trach collar run, and at the exact moment that the respiratory therapists arrived to wheel away the ventilator, Lucas decided that he’d had enough of the deep, consistent breathing needed to keep his oxygen saturation and heart rate up. They barely had time to put the vent back in the closet before the call came from the docs to reinstall it.

Still, we’re proud of the little guy, and at the same time we’re learning his limits. He will need to go home with a vent but can just use it intermittently (probably over night) and have the collar most of the time. The whole event was also good for us because we were able to mostly deal with his sudden slowing of breathing on our own… and imagine what it would be like if it happened at home. This time it was good to have the nurses, respiratory specialists, and doctors here to oversee and guide us, and we emerged from the experience feeling confident about what to do next time something stressful happens.

It’s been two days now and Lucas is still breathing with no extra help!  It’s hard to put into words how excited and proud we are to see him doing so well breathing.  All the staff in the hospital have been very congratulatory, and some of the nurses that know Lucas best have literally cheered for the little guy when they come to visit and seen him off the vent and on the trach collar.

We’re not sure that he’s ready to be off the vent for good quite yet.  For the past week Lucas has been slowly losing weight, and he’s lost almost half a pound.   The doctors aren’t sure why this is happening since he’s vomiting much less than a week ago.  He still has the occasional spit up, but not enough to explain weight loss.  Yesterday they decided to fortify the breast milk with even more calories, and in case he’s just hungry they’re going to increase his feeds beyond the typical caloric amount for a baby his size.

So it’s also possible that breathing without the support of the CPAP vent is requiring too much exertion.  It’s not uncommon for kids weaning off vents to stay on them at night and just use the collar during the day, so if Lucas doesn’t go back to gaining weight soon the doctors may try that vent/collar combination.  Even if he needs some nighttime CPAPing, knowing that he can go many hours without the aid of a ventilator makes the idea of being parents  at home that much less daunting.  It means he can move from one room to the next without needing the machine to go with him, or even travel from our house to the park or a doctors appointment without a machine.  What liberation for a little one… and for all three of us!

In the past few days we’ve been doing more to get ready for Lucas coming home.  We’ve been taking loads of frozen breast milk home from the hospital, fixing clogged drains around the house, and looking for living room furniture that we can sit and hold Lucas in.  Last night Burke assembled Lucas’s stroller — a sight so strange we had to get pictures to prove it.  Today we’ll choose a home nursing agency and order the medical equipment that he needs. We’ve also finally done all the training and passed all the tests, including changing his trach without assistance from a nurse.  Since Lucas’s time line for leaving the hospital is mostly out of our control (it’s mostly up to the insurance-home-medical-industrial-complex at this point), we’re doing our best to be patient while we enjoy our time with him in the hospital.

Here’s a slideshow of photos from the last month:

Lucas took another big step forward today: he was disconnected from the ventilator for an extended period for the first time since his tracheostomy surgery!   In fact, as this entry goes to press its been about eight hours since he moved from the CPAP vent to the “trach collar”.  This little device delivers humidified air to the area around Lucas’s trach tube but lacks the pressure, and therefore the complexity, of the CPAP.  It also makes him that much more mobile.

Initially it looked as if Lucas might drop his oxygen saturation or get tired off the ventilator but so far he’s been coasting along  It doesn’t mean he’s done with the vent for good but there’s a good chance that he will be soon… and this makes our prospects for home a lot easier.  That being said, the trach collar and humidifier still represent a hefty piece of equipment, as you can see in these pictures.

Lucas also graduated from his “nest” today.  The nurses usually build a ring around preemie babies to make them feel bundled (as if in the womb) and give them something to push their feet off of.   But guess what: Lucas isn’t really a preemie anymore.  In fact, he’s nearly 8 pounds, sporting regular newborn gear (no more shopping at Preemies-are-us!), and has passed the 40-week gestational age.  So at this point he needs to move around, explore different positions, and just keep wiggling.

One of our favorite night nurses who really loves Lucas is back tonight, and she revealed that Lucas isn’t just popular in the NICU during the day when we’re around; as she put it “he’s got lots of girlfriends”, which is to say that various nurses drop by throughout the night to see how he’s doing.  Maybe they all like him because he doesn’t raise a ruckus like some of the other babies, but we like to think there’s a twinkle in his eye that’s just irresistible.

Lucas is spending more time upright or semi-upright these days, and he seems to be enjoying the view.  Today we had him up for about two hours in his booster seat (see video below).  Later, he pooped like he’s never pooped before, soiling three consecutive diapers before finally smiling with satisfaction.

Today, October 25, is significant because it was Lucas’s original due date.  The doctors revised the date to early October based on ultrasounds that were done after Krista went into early labor in July, and of course due dates are fairly arbitrary anyway.  But October 25 still sticks out since it’s the date we first imagined Lucas arriving in the world…

Given Lucas’s rough start in life, we’ve come to recognize that he’s on his own timeline. We likely will never know what caused the hemorrhage in Lucas’s brain around the time of his birth, but since he’s never been diagnosed with any genetic, metabolic or neurological condition, the brain injury and subsequent bleed may be the sole cause of his prolonged hypotonia (low muscle tone). In a sense this is a good thing – as we’ve mentioned on the blog before, the brain injury scenario is a lot better than him having an underlying condition because there’s more chance of full recovery.  And each day of progress and improvement indicates that he’s on such a track.

Of course, whatever caused Lucas to have low muscle tone has slowed down his development significantly.  A lot of preemies tend to have issues that lead to developmental challenges in the first year or so of life, but Lucas especially has a lot of learning to do.  Right now the things we celebrate as achievements are different than most babies, but damn if it isn’t that much more beautiful to see him shine!

Yesterday Burke was in the hospital early and for the first time saw Lucas hold his arm straight up in the air, which he did for about 5 seconds.  When he was born he didn’t move at all, and according to the discharge papers we were reading recently from the Washington Hospital Center, he had hardly any reflexes and didn’t respond to pain.  We celebrated when he first made “anti-gravitational movements”, and have continued to get excited every time he expands his wiggle routine.  But the arm hold was a real acheivement in strength development.

Likewise, it was pretty cool yesterday afternoon when Krista lifted Lucas out of the crib (by herself, without the aid of a nurse), placed him on her knee, and rolled him onto his tummy.  He seemed a little perturbed at first but quickly got in the grove, sucking on his fist with pleasure while maintaining his oxygen saturation level (the big test of any new stunt).

Later on when we put him back in the crib his feeding tube got stuck on something and it really pissed him off.  He cried like we’ve never seen him cry before…. and it was wonderful!  Ok, so it’s never fun to see your baby in pain, but to see him respond with such strong emotions is another real step forward.  And though he can’t actually make a crying sound – because the tracheostomy is placed below his vocal chords – for the first time we heard an audible “honk” come through the tube in the vent that was clearly not in his usual breathing pattern.  As he continued on with his first major fit, he also gave Burke’s hand a helluva squeeze!

Whereas the car seat test was something he had to do to make it out of the NICU, each of these events represent small steps forward on a path to recovery, steps that we recognize as significant because of all that Lucas has been through.  In baby development literature they call them milestones, but the concept is somewhat problematic for us.   For one thing, Lucas is on his own timeline and to try to constantly compare him to “normal babies” isn’t fair given his rough start in life; of course, we suspect it’s going to happen a lot anyway as we continue to see therapists and other specialists in the months to come.  But the idea that child development is perfectly linear and that each child should aim for the same “milestones” within the same time frame is also problematic.  So we’ll keep celebrating Lucas’s achievements, and we know that all of you will continue to give him, and us, moral support as he maneuvers life’s path, whatever windy route he decides to take.

The little man cleared another hurdle today as he passed the much-vaunted “car seat test”.  Lucas had to prove, like all preemie babies that are getting ready to leave the NICU, that he could sit up in a car seat for 90 minutes without stopping breathing, dropping his heart rate, turning blue, puking all over himself, etc.  And he did!  Alright, he had a little trouble with the last category, but it wasn’t so bad.  About 70 minutes into the fist trial he finished his feed and spit up, just a few mls of milk but enough to clog up his system and drop his heart rate and then oxygenation.  He bounced back on his own, bringing his numbers up without extra oxygen support, but it was enough to make him fail the first round.  However, we kept him in the car seat and he proceeded to hang out for the next hour and a half without any more problems.  Nice work Lucas!

vroom vroom... check out my new hat!

There are more hurdles ahead but they aren’t really dependent on Lucas’s progress.  He’s pretty much there, though we know from talking to other NICU parents that there can always be steps backward that inhibit the trip home… just at the moment when it seems assured.

So as we keep supporting Lucas on his path to recovery we’re also working on getting everything set up for him at home.  We bought a crib off of Craigslist from some nice folks in the neighborhood yesterday, and they threw in the mattress and accessories, not to mention a potty training seat (still a ways to go for that one!)  And we’re starting to interview home nursing agencies to get someone picked out asap.  There’s a chance that we’ll be ready to leave the hospital by sometime next week but it’s just as likely that we’ll have to wait until early November to get all the pieces in place.