I won't believe it unless pigs fly.....

Today was a hard day for us, but mostly for Colin. Let me start by explaining his brief history. On the 3rd day of Colin's life, he had a serious scare in that his heart rate suddenly dropped. I wrote about it in a prior blog post. After he stabilized, ultrasounds revealed that he had Intraventricular Hemorrhaging that occurred in both the left and right side of his brain, basically bleeding in his brain. Here is a picture of a babies ventricles, and a link to a description of what this is:

IVH description

Why does this happen? Well, preemies are so small, and all their blood vessels are more susceptible to being ruptured, especially when they have low blood oxygen levels (what happened when his heart was stopping). When it does occur, the hope is that the bleed isn't severe enough to cause too much damage to the brain. 

We always knew that this brain bleed would have to be dealt with at some point. Basically, the ventricles are like drain holes in a sink, and once they get clogged, things start to back up. The hope was that the blood that was there would slowly be reabsorbed over time. However, after monitoring it for the past 3 weeks, doctors realized that instead of being reabsorbed, the ventricles were slowly starting to enlarge. This meant that the "sink holes were backing up" and the blood was causing the brain fluid to build up, a term that is called hydrocephalus.

So yesterday when they noticed his head circumference had enlarged, his NICU team referred his ultrasounds to the Neurosurgery department to get their opinion about what should be done. We had hoped that they would give an answer like "oh, this is normal, we'll look at it again in another few weeks", much like they had been saying up until this point. However, they decided that the buildup could not wait any longer. 

Usually with hydrocephalus, doctors put in what is called a shunt, a small tube that is passed from the ventricles and drained into the abdominal cavity. However, Colin is still too little for that, so they decided to put in a Cerebrospinal Fluid Reservoir (or CSF for short). Please click on the link below and scroll down to "Neonatal Reservoir" for a description and pictures:

Neonatal Reservoir (CSF Reservoir, Ventricular Reservoir)

This is what leads me to the "pigs flying" title. After the surgery, the doctor came over to talk with us. He gave the usual details, "surgery went good; things should progress fine from now on", etc. However, when Rich asked him what this meant for Colin's long term outlook, what the doctor said got under my skin. 

He felt that because Colin had extensive brain bleed, the damage it caused was quite severe. He felt that Colin would "most definitely have neurological defects, like not walking, seeing or talking". Now, I'm a realist as much as the next person, but this is the one thing that I really have a problem with. I know that doctors look at "average outcomes" of patients, but I think it is wrong for them to assume that my son will automatically have this fate. 

I have read countless stories so far of other preemies who were diagnosed with Grade 3/4 brain bleeds and who are walking, talking and are lovable little kids! Google it yourself, or see this link: Other preemies with Grade 3/4 brain bleeds

So for now, he doesn't know what Colin is capable of. He can't predict the future. Yes, what Colin faces are real possibilities, but so is the possibility that I might get hit by a bus or win the lottery. Unless it ACTUALLY happens, I am not going to let that determine Colin's outlook. When pigs fly, I'll believe it!

But where does that leave us now? Sad, angry, confused. These are all things that I and Rich are feeling right now. Every day that we build up faith, something comes along and tries to knock it down. Some days are easier than others. But today, all I feel like doing is getting mad. I refuse to let someone else dictate what is not yet written. I am putting it in God's hands, and until then, I have decided that starting from today, I am going to spend the rest of my life helping my little boy find a purpose for his life. I know he was brought here for a reason, and whatever shape his life takes, I can't wait to help him develop that purpose. 

Pigs flying will be our reminder of this purpose. This has been the theme of his nursery to this point. While the drawings haven't been painted yet on his walls by me, they will now. And I will remind Colin every day that until pigs fly, no one can determine the future, not even his.......