Lucas Camilo

“Roller coaster” is the analogy most parents who have been through the NICU use to describe the experience, and with good reason: just when you want to feel happy about improvement, your baby has a setback, something changes, a new question emerges.  Yesterday “roller coaster” actually came up short as a descriptor.  In fact, it almost felt like the doctors were just plain messing with us to see how strong our spirits have grown in the last five weeks.

Since Friday, a series of specialists have been preparing us for the possibility of a “fontanelle tap”.  They tend to introduce scary ideas to us in stages.  The neurologists mentioned it to us as a possibility a week ago.  Over the weekend the neonatologist ordered a head ultrasound and told us that if Lucas’ ventricles were growing in size (due to increased fluid volume and pressure on his brain), we’d have to do the drain fluid again, either in through his spine or through the soft spot in his head (called the fontanelle).  On Monday afternoon, the neonatologist explained that if we couldn’t tell from the head ultrasound if there is “communication” between the ventricles and the spine, they’d go ahead and drain through the fontanelle.  Then, less than 30 minutes later, the neonatal fellow came by and told us that the ultrasound results were inconclusive and therefore they were ordering an MRI.

This raised a whole bunch of questions: Is a fontanelle tap so much riskier that we should try to avoid it at all costs?   Why did a different doctor tell us they’d go ahead with the procedure without another test?  How traumatic will it be for Lucas to go through a second MRI?  The fellow convinced us it is better to know, so we agreed to doing the MRI… but on Tuesday morning he came back to tell us that the MRI was also inconclusive on the matter of whether fluid was flowing between head and spine.

So that meant we would have to move forward with draining through the soft spot.  The neurologists dropped by to explain the results of the MRI, with some good news.  Since the last MRI, there’s been normal growth in Lucas’s brainstem (the place that information passes through on the way to the brain and where neurological functions necessary for survival – such as breathing, digestion and heart rate – are located)  meaning that the injury to his brain has probably not affected this key structure.  They can also see from the MRI that his head is growing faster than it should be, due to the fact that fluid continues to build up, causing his ventricles to enlarge.  As they showed us eerie looking images of slices of Lucas’s head, they fully convinced us that he needs to have the fluid drained.

A team from neurosugery was to do the procedure.  Two neurosurgeon residents came to do a physical examination, and they left after hand shakes and a quick look at Lucas.  An hour later, two more neurosurgeons came to get us to sign a consent form for the procedure, and they repeated everything we’d heard already: why he needed the tap, what it entailed, and the possibility of having to do it repeatedly.  About 10 minutes into the conversation, one of them reached over to touch the soft spot on Lucas’ head.  Then he turned to the other doctor and said, “This baby doesn’t need to be drained.”  She stopped talking to us and moved to Lucas, touching the soft spot before turning back to us.  “I’m sorry,” she said.  “His fontanelle is still soft.  If there were real pressure in his head, we’d feel his soft spot get hard and tight like a drum.”  It was confirmed: he didn’t need the procedure.

We were almost speechless.  The doctor apologized again, but in a very friendly tone, reminding us that this is a good thing – Lucas won’t have to get a needle stuck in the top of his head, at least for now.  But what about the conversation with the neurology team an hour ago when they convinced us he needed this procedure because otherwise the excess fluid could lead to brain damage?  What about the pictures that showed his ventricles to be twice the size they should be?  What about the growing head circumference?  This team assured us that if there were dramatic pressure on his brain, we’d feel it in the fontanelle.  Soft fontanelle means no fluid drain for Lucas… and that was that.  (By the way, Burke’s parents were with us through all of this, so they can tell you that we’re not making it up.)

Shortly after the docs left, Lucas woke up and gave his grandparents a few good finger squeezes and kicks before they left for the airport.  He spent a good part of the afternoon awake and looking around, and we talked to him about how well he’s doing healing on his own.  In the evening, Burke got to “kangaroo” with Lucas, holding him skin-to-skin to help transfer all the love and healing body heat as directly as possible.  And we all slept well knowing that despite the doctor’s differences of opinion and our many questions, we’re doing the best we can to help Lucas get better.

Lucas says "come back soon Nonna and Papa!"

Kagarooing at the end of the day with daddy