Someday at Christmas.....

I love Stevie Wonder. This is one of my favorite holiday songs by him. While the message is about world peace and things like that, the song has a much smaller, personal message to me. 

I know that someday at Christmas, Colin will not be in an incubator, but happy in my arms at home. 

I know that someday at Christmas, I won't have to travel 8 miles to see my son, but I'll only have to walk a few steps.

I know that someday at Christmas, Colin will not weigh just over 2 pounds, but will be a much heavier, chunky Campbell baby!

I know that someday at Christmas, I won't have to pump my breastmilk to a cold, unfeeling machine, but I can feed it directly to my little boy who will be in my arms. 

I know that someday at Christmas, we will not have to celebrate Christmas in a cold hospital, but in the warmth of our living room with a Christmas tree to look at. 

I know that someday at Christmas, we will be able to send a Christmas card with a family picture, and Colin will be included, right in my arms. 

These are the little things that I dream about that I can't wait to happen next Christmas........

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.......

The "fight" of his life.......

Victor Griego, aka "Bobby Herman"

For those that don't know, Colin's middle name is Victor. He is named after this man above. This is a picture of my grandfather. He was a boxer in the lightweight division in the 1920's-1930's, until he met my grandma and got married.

I think it is ironic that I choose Colin's middle name after my boxing grandfather. This is exactly what Colin is doing at this point in his life. Fighting, but for totally different reasons. 

I was also reminded of the double entendre of "Victor" when Colin was at Glendale Adventist. It was a few days after his birth, and the pastor who counsels families and prays for them came to Colin's incubator to chat with us. After a few minutes, he offered to say a prayer for Colin with us, and we obliged. 

When he was done, he said "Well, I certainly believe that Colin will live up to his name and be a 'victor' in his struggle". When he said that, I was instantly overcome with peace at that thought. How perfect was the choice of this middle name for him!

As the days have passed, I sometimes struggle to remember this comforting feeling of Colin's middle name. For every few days that are good, they have usually been followed by not so good days. Our recent bad days have been marked by the fact that Colin has developed an infection located in his lungs. 

Even though he is in the NICU, there is no way to prevent infections from happening, no matter how diligent people wash their hands or things around him are sterilized. In his case, the infection was noticed immediately, and antibiotics were started. 

But routine illnesses are tough on the little guy. And when the first antibiotic didn't seem to be working after a day, they had to switch to a different one. The 2nd day with his infection turned out to be a tough one. His heart rate which had been holding steady after his heart surgery at 150 was shooting up as high as 200. His blood pressure was either really low, or really high. And his settings on the ventilator were constantly being adjusted, where a few days before, they were not touched at all. 

It's the hardest thing of all to watch all this going on with your child, and there is NOTHING you can do about it. Well, almost nothing. After the high of being able to hold Colin, the next day they had to switch him to another ventilator, and now I can no longer hold him for awhile. Only touch him.

So at least I found that when I place my hands on his head and legs, after a few minutes, he calms down. This gives me some peace. But otherwise, this fight is between Colin's little body and all the medical challenges he faces. 

So I try and take solace in the fact that he has a strong middle name, and that his blood is descended from a fighter. And I read this wonderful story to him called "On The Night You Were Born", and I hope that somewhere in Colin's mind I am instilling him with the will to fight all these challenges. 

But sometimes I'm reminded of the fact that I need to "fight" too. Fight the despair that takes over my days of confusion. Of trying to find order in waking up, pumping, going to the hospital, pumping, sleeping, and then starting my day again. Of seeing other mothers so happy with their children, and wondering if I will ever be that peaceful myself. 

I am told all the time that I am strong, yet most days, I feel so weak. Weak with no medical degree to understand all the medical terms that I am bombarded with each day. Weak in not knowing why my little boy has suddenly become racked with constant "seizure" like activity. Weak in not knowing how to incorporate my past life of friends, family and most importantly, me. 

Yet again, I have to remind myself that I have my grandfather's blood too. And even if I feel weak, I am still here each day. So I cry when I can, and rest just as much, and always hope that the next time I wake, that I will feel that peaceful feeling that I felt that day with the pastor. Because I want to be a 'victor', just like Colin........