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Mourning Perfection…and Laughing

The 5 days between receiving the diagnosis and when we had to go back to the hospital for surgery were a little, well, blurry. It was hard to think, or to keep a thought for more than a few seconds. I’d start working on something, and inevitably after a few seconds my mind would wander:

  • Oh, we need to ask the nurse…
  • What if…
  • We need to make sure we bring…
  • What if…

At some point Kayleigh made the realization that one of the things that was causing us so much grief was that we were mourning the loss of our perfect baby. Only days earlier we would admire our chubby, cute, slightly big headed baby, and just bask in his perfection. He can do no wrong. He is perfect. Suddenly though, we were slapped in the face with the fact that even at 2 months old he’s just like everyone else. His body is…imperfect. He has a medical condition that is going to effect him for the rest of his life. He has lost this one moment of (perceived) perfection that most humans get to enjoy, even if they are completely unaware that they are enjoying it.

While this realization didn’t take away from the sadness that this mourning caused, it certainly made dealing with this situation a little easier. Being able to put words to a before unexplainable plaguing sadness was very helpful in giving us the ability to live with this sadness.

There is also, as there always has been and will be in my life, humor. Some people call it a coping mechanism, all I know is that for me, it works. Even during this time when we felt like we were marching in place waiting to get punched by a face tattooed Mike Tyson, keeping the mood light also kept me sane. Joking around about the size of Declan’s head, pretending Amelia was a pillow on the couch and then “crushing” her, these things helped quite a bit. One thing that sticks out over and over for us is something a good friend said to me in an email. It was something like, “Hopefully you’ll go to the Doctor, and they’ll find out that Declan just has a lot on his mind”. A line that will probably be with me forever, and now the tagline of this blog.

It Begins

On Tuesday, May 10, 2011 Kayleigh took our son, Declan, to see his pediatrician for his two month well baby visit. His head measured in the 90th percentile, so the Doctor thought it may be a good idea to have an ultrasound done to rule out any “problems”. Our daughter, Amelia, had the same procedure (although she was a little older) so we weren’t worried.

We showed up for the ultrasound appointment on the following Tuesday, May 17. We didn’t really have any worries. We’d been through this before, and were just going to rule things out. The truth is, we didn’t even really know what problems having a head bigger than 90 percent of his peers could mean. The appointment went well. The technician was nice, and we went home thinking, “Glad that’s over with. Let’s move on.”

Later the same day the pediatrician called. The Doctor who reviewed the ultrasound had called her and was concerned about what he saw. It looked like there may be too much fluid around his brain. “Don’t panic…it may be nothing…whatever you do don’t look this up on the internet. You don’t want to worry yourself before you know what’s going on.” That was the basic message we got. Declan will need to see a neurosurgeon who will review the ultrasound and give us a diagnosis.

The Neurosurgeon’s office called, set up an appointment for Friday, May 20. They asked us to bring the ultrasound. They said they also may be doing an MRI while we’re there. This was the scariest part for us, because he’d have to be sedated. We were still being pretty optimistic, “It’s probably nothing, and even if it is, it’ll probably fix itself.”

We packed up a diaper bag with some snacks for Amelia, who is two and a half, and headed downtown to the hospital to see the Neurosurgeon. We waited…and waited…and waited. We finally went back to a treatment room, and waited a little more. The Neurosurgeon knocked then came in and introduced himself. He then took a look at the ultrasound, gave us a brief explanation of hydrocephalus, and told us that the ventricles in Declan’s brain were “huge”. He pulled out his smartphone, did a little clicking around, and said Declan would need to come back to the hospital on Wednesday, May 25, and have a shunt surgically implanted in his head.

The Doctor’s Nurse also came in and talked with us for a while. They told us what a shunt does. They answered some of our questions. The Nurse gave us her number and said once we had a chance to think of some other questions to give her a call.

What we knew at this point was that Declan had hydrocephalus, too much fluid in the ventricles of his brain. Failure to have this treated could lead to a lot of problems…possibly death. They were going to make cuts on top of his head, behind his ear, and on his stomach. They were somehow going to take a tube and route it from his head to his abdomen so that this excess fluid would no longer be putting pressure on his tiny brain. We also heard somewhere in there (along with about 100 other facts) that the device they’d be implanting had about an 80 percent chance of failing. What?

So, we headed home to try and figure out what all this meant.