There Is Nothing To Fear But Fear Itself

I was putting this post together in my head for the past day. Over the course of that time, it morphed through a number of different subjects and emotions. I think that is because when your put in a situation like this, your mood is like a giant roller coaster that swings up, down and veers sharply in one direction or the other. Sometimes it feels like this is all a dream and we will wake up and it will all be "better". At other times I become so disoriented that I am not sure what day of the week it is or how many hours have lapsed since I last thought about it. Yesterday I had a horrible anxious feeling that simply would not go away and holding Owen and trying to feed him was almost scary because I was so afraid he would spit up and so worried that every set back would mean a longer amount of time in this hospital. I spend moments in denial...not asking the questions I want to ask (such as when can we leave) or explaining a strange movement as just a tick in order to calm myself and avoid hearing something I don't want to hear. I feel joy that Owen is here and lived despite the odds against him. Sometimes I am hopeful that regardless of what he has been through so far the road ahead will be bright and easy for him. At this particular moment I feel sort of sad because he may struggle (as many children do) and I only want him to feel complete happiness because he has been through enough.

The past 3 weeks has caused me to view the world from a whole new perspective. I would not say I had a hateful impression of society in general but I certainly felt that the majority of people were flawed in the fact that they only cared about themselves and would only do what they needed to get ahead. For myself, I was blissfully ignorant of the deeper struggles families and individuals were facing right in front of my eyes and I took the beauty in my life for granted.

Since Owen has been born and through his illness, my entire family has experienced an outpouring of love and support. Some of it has come from the most unlikely of places. We have found ourselves utilizing services that we "didn't need" before or so we thought, only to find some of the most wonderful and giving people we never would have noticed before. April and I would both like all of you to know that we recognize and appreciate everything everyone has done for us....we could not be doing this without you. Every word of support and kind gesture means so much and in some instances actually gets us through the day...thank you!

Okay...enough of my emotional baggage...lets talk about Owen. Over the course of the past couple of days he has been relatively stable His temperature continues to fluctuate but not to alarming levels as it was before. His feedings are still an issue...but it is getting better. They have completely removed the PICC line from him and are feeding him exclusively from the bottle again. So once again, he is cord free (with an exception of the little heart monitor patch that we can take off when we feed him). His spits are still larger in volume but they have begun to thicken his formula and give him more frequent lesser amount feedings. This just started today so time will tell whether it was a good or bad choice. The good news is that he has been consistently gaining weight and it now up to 6 lb. 5 oz. 2 more pounds and he will be up to Brendans birth weight! His head swelling has not been as substantial. They are still worried about hydrocephalus and monitoring him very closely...but at this moment they are not feeling any surgeries are necessary.

The physical therapist was here yesterday and checked Owen over. She said his overall body tone was a little bit lower than what she would like to see although he made many encouraging movements (especially with his head) that she thought were all good signs. April and I were shown some exercises to try and positions to put him in that may help with his strength. Dr. Elmo visited and let us know that some of the blood has absorbed back into the body and that they do see a small portion of the right side of the brain that they feel is most likely damaged as a result of the extensive bleed. The effects he said (are unknown) and could range from what he felt would be motor issues (most likely) on the left side of his body. But then again, he said, the brain could rewire itself and it could almost nothing.

Today Frank came in to let us know exactly what his plan was to try to improve his feedings and assist him in keeping it down. He suggested that once we are allowed to leave the hospital, we would want to make a point to choose a doctor for Owen that was a bit more in tune to a child with some of the setbacks he has experienced so far and may experience in the future. One thing about Frank is that he is extremely blunt. This causes some technical diffculties when it comes to me remaining in my blissful LA LA Land when I don't feel like coping with the world. Regardless, Frank smacked me back into the real world when he let us know that he will assist us in making a plan to get Owen seeing the right kind of doctors and to assist us in coninciding all of the necessary appointments into a tighter time frame so we can make fewer trips back to Madison once he comes home. He told us that the bleed was severe and that although it was more concentrated in the ventricles...there was still a portion that had made it into the actual brain matter and he felt there will be problems. This of course raised questions in my head and the denial reflex started to light up and although I knew I could continue this process by being quiet...I decided to ask what he felt some of the possible outcomes would be in his opinion. His answer, Cerebral Palsy. Frank felt that the most likely obstacle Owen would be facing is that of a physical nature and not so much of a mental one. Of course, time will be the only true test as to what exactly is going on. He said that normally indications will be a bit stronger at 6 to 9 months and that in the meantime, he would make sure we had all the necessary support outlets to proceed as easily as possible.

My old friend fear returned at the result of those words. Anger was the initial knee jerk reaction, but then I thought who would I be angry at? Frank? For honestly answering my question instead of sugar coating it with rainbows and unicorns? No, fear was more accurate because we don't know what will happen or how easy or how hard it will be. That concept drove me to write this post and have the realization that it really doesn't matter. Owen is here and at one point, there was a good chance he wouldn't be. He is incredible whether he dance the tango or not. There is not a case like Owen's out there so there are no statistics for us to weigh. It is a one day at a time thing (which sounds so cliche but true) and that is what he have been doing...and why change a technique that works?

Brendan enjoyed his day away and has been moderately better behaved since he joined us again. He needs his mom and dad BOTH all of the time. When he was napping he would talk in his sleep saying DAD! DADDY! Not quite so sure what that was about. He is now doing puzzles and playing with his darn loud toolbox. But if it makes him happy...we'll take it.