Friday, October 19, 2007

A dose of reality

Sometimes I find myself thinking that this is all just a short term event. Colby will get bigger, he'll get stronger, then he'll come home and all will be fine.
We met with the doctor last night to talk a bit about Colby's condition. The doctor showed us the ultrasounds of Colby's head. It was very interesting. Colby's Brain Bleed is a Grade 3 bleed. This means that there was bleeding within the ventricles with some clotting. You can clearly see on the ultrasounds where the blood is and where it's clotted. As a byproduct of this clotting, Colby's cerebrospinal fluid that's normally generated and would usually drain down out of his brain is backed up filling the ventricles of his brain. On other slides, we could see just how large the ventricles in Colby's head have become. Everyone has ventricles which are reservoirs of cerebrospinal fluid right in the middle of their brain. But in Colby's case, as his body makes more fluid and as it backs up, pressure builds inside his brain pressing outward. If the pressure is strong enough, it will actually push the brain against the skull and thus enlarge the head. This is what's happened.
For right now, it looks like the clot is slowly resolving. Because Colby's head isn't growing very fast, the doctors believe that there is at least some draining happening. And this is good. We asked at what point would they intervene. They responded that if Colby starts showing clinical signs of excess pressure on his brain, they would need to do surgery to release some pressure. They are avoiding doing this as it can cause an infection and an infection in the brain is not a good thing.
I asked given Colby's current condition, what is the possible outcome. We were told that there are some cases when the baby's issues are minor, i.e. mild cerebral palsy. Or, others where it's more devastating. I asked when we might be able to know more specific information about Colby's outcome. He said that at this point, most of Colby's movement and behavior is instinct and unconscious activity, meaning that Colby's not really doing it on purpose. At about 2 to 3 months normal birth age (i.e. Colby should have been born on December 5th, so about 2-3 months after that), a baby usually begins to really try to utilize different areas of his brain to function. It will be more at that point when we'll be able to see what kind of affect Colby's condition has left.
The doctor said two things that can affect a babies outcome after having a brain bleed. The first is the timing of the bleed. The younger the baby, the more the brain can compensate for damage. For example if a particular area of the brain is damaged, at times the brain will use another area for this function. The other factor is the socio-economic situation of the family and their ability to provide therapy and support that the baby needs.
Then we had a group meeting with a pulmonary specialist. It was very interesting to hear her talk about the different machines used to help babies breath. She also talked about what scarring and damage may be done from being forced to breath so early. In Colby's case, he needed to breath 3 and 1/2 months before he was supposed to. So his little lungs although formed, were very stiff and immature. The specialist talked about how the babies lungs continue to create new avoli up to about 3 years of age and through this time, the babies lungs will be growing and repairing as best they can. Things that are minor to you and I, like the common cold, can reek havoc on a preemies lungs. So they said to keep Colby away from anyone who's sick or thinks they may be sick. Also to limit people touching him in the beginning as peoples hands can carry all kinds of things that are dangerous to a preemie.
Tracey and I in some ways felt better after last night's discussion. We have told the doctors from day one that we didn't want anything sugar coated and that we want to really understand what we're up against. We're fed tidbits of information every day, but sometimes it helps for a doctor to string all the details together into a comprehensive story.
When Colby does come home, he'll most likely have many regular doctors appointments. We'll need to hang low, which if it's during the holiday season will be different for us. And even once he's home, we'll continue to learn more about his condition and outcome.
For now, Colby is back on IV's. The doctors are giving him half of his calories from his milk and the other half through his IV's. In about a week to 10 days they hope to operate on him again.
Anyway, I feel more informed about Colby's situation. I need those little doses of reality every once in a while to keep me grounded. In some way it feels like a slap in the face, wrecking my perfect picture that I've formed in my head. But in other ways, it simply allows me to correct my still perfect picture to include a more realistic outcome. Either way, I believe that Colby will do well. I'm looking forward to raising our little boy.
It's a bit of a rainy day here in Connecticut today. I don't have any appointments and I'm going to do my best to hang as low as possible. This past week to week and a half I've felt emotionally and physically exhausted. More than I've ever felt before. My whit, energy and stamina is all but gone lately. I need to strike a better balance between the hospital, work and family as best I can.


Anonymous said...

I understand completely, with Maleia having Downs we have talked to many different DR.'s and have read a lot of information. It is nice to know what could happen but really sucks to have to wait and see what will happen.

Colby, we pray that you get your strength to wow the nurses and DR.'s!!!

Jamie, Jordan, and Maleia

Liz and Chris said...

Regardless of the outcome, you and Tracey have made the best out of everything the past couple of months and I'm sure will continue to do so. You have so many people that truly care (some around the block from you!) to allow you have an outlet, a sounding board, emotional and of course physical help. You'll all get through this and Colby will be one happy baby!!!

Cynthia said...

You are so right in saying that having a complete picture helps. Too often in the NICU you get this tidbit of info or that little nugget, but you often have to push very hard to get the whole picture.

We think of your family every day and love looking at the pictures of Colby. He is a real fighter!

Anonymous said...

Take a break. Even if it means just a day. It's important to regroup when necessary.

Recently, I went and saw Sam Goldstein, PhD, author of Raising Resilient Children (good read) speak. One thing he said, really grabbed me, "sometimes slow, is fast enough". The preemie ride (or Tyler's development), in a nut shell. Nuturing a child is so important, and you and Tracey show so much love for your children. I do believe that love has helped and will continue to help you through all situations.

Colby's outcome may not part of your original fullterm healthy baby dream, but with a little adjusting the new dream can be fantastic in so many ways. By the time you bring that little guy home he will be a happy and healthy, bouncing baby boy.

Invest in a pump bottle of hand sanitizer for everyroom. Tyler made it a whole year without a single sick day (pretty amazing for a lttle guy). From day one home, we even sanitized his hands and just blew on them until dry.

The whole lung issue is such a big deal. We recently had to resign from a mommy group, little sniffles for the other kids, turned into ten days of breathing treatments for us. Tyler is two and was only on a ventilator for 10 days (followed by cpap and vapotherm). Luckily the lungs do heal, but trying to keep them healthy while they grow is sooo important.

Here's to a weekend of rest and relaxation.