Being bummed out

The fact that I am a mother of a heart child has once again smacked me in the face. Normally I can pretty much pretend that I have a fairly normal child because Evan is so active and a heart defect is not something that you can see. Recently after a long marathon of specialist doctor visits when I was looking forward to things with him quieting down I got some news I had hoped not to hear.

Evan had two tiny flaps instead of an actual wall between the two bottom chambers of his heart. The top flap is causing a bit of an interruption in the blood that is flowing out of his heart. This is something that we knew could happen going into his last surgery but the surgeon looked for it and it was not appearing. About a week later after Evan had his stroke the partial interruption was showing up in his echo. This was not seen as too big of a deal as long as the interruption was not getting worse.

Evan was being fairly closely monitored to make sure that things were fine in this respect so I had kind of thought he was home free. I was deluding myself a bit I think. At his cardiology check up the doctor told me that surgery was going to have to be done since the interruption was not getting any better. It would have to be done either before the final corrective surgery or during the final corrective surgery. This is because he will have even less blood flow to his heart further changing it's shape and the interruption would get worse.

I know that the surgeon likes to only do the final corrective surgery when he does it because it is too hard on the kids to start adding other procedures. He is fundamentally altering their circulation system and that can be hard on the body to get used to causing many complications and even death. I am very much in agreement with this policy because I have "met" too many parents of kids through the internet that have lost children in this final stage.

We will be going down to the city for a big work up in January and we will learn more about the timing of this surgery. Part of the reason this is hitting me so hard is because I had tried to plan my pregnancy around Evan's surgery. I did not want to have a young infant nursing while I was trying to take care of my first born in the hospital. Evan has to have a parent there at all times, that is just how I am. I do not want to leave him alone in the hospital because I know that while they try and give him the best care that they can Evan needs an advocate that can fight for all the things that he needs and is not distracted by the needs of other patients.

Control freak that I am I had decided that this caretaker had to be me and I was starting to get very stressed out about trying to care for two children. I am the one that coordinates Evan's care because I am the one that goes to all the appointments and takes care of him for the majority of the day, that is my job. My husband is also not a hospital kind of guy. He is very much a doer and there is not much to do at a hospital, you are more of a watcher and asker. He is willing though to put aside his distase of hospitals and take over my task. That is what makes him a great husband and help meet. When I can't do something he will take over and fill in for my weaknesses.

I plan on being close by though because I just can't give up THAT much control. I need to be there with my special little guy and help him as much as I can while also caring for his brother. There is just no true replacement for mom even though dad will be there too.

Traffic sucks!!!!

While I am glad that I live near many specialized doctors (for my son's sake) I hate that we live near a large population center. Today on the way back from an evaluation to see if my son needs occupational therapy I was caught in almost constant traffic. I left the hospital at 2ish and did not get home until 4 in the afternoon. I have no idea how people who work in the city can stand to spend that much time in a car.

My brain kind of shut off while I was driving. It was so mind boggling boring to watch the car in front of me creeping forward and then stopping. During the drive I really wished that I was my sister and I had an iPod filled with songs. The radio sucked big time and the stations kept fuzzing out on me. I ended up listening to NPR for most of the way home.

Another thing that did not help my mood was that last night my "darling" son kept waking up crying for unknown reasons. That caused him to be super cranky all morning driving my tired self up the wall. I normally get a nap when he does but the timing of the appointment threw that thought out the window. I think he knows the days when this happens because it seems like his waking episodes happen when I will not be able to have a nap the next day.

Oh well tomorrow should be a fun day, at least I will get to sleep in. I have a wonderful husband that gets up with the child on weekends.

Angry pregnant woman has emerged.

Be afraid, be very afraid. I am in the last six weeks of my pregnancy and I am so ready to give birth. The last month or so of my pregnancy a new person emerges. I call her angry pregnant woman. The slightest hint of stupidity, any questioning of what I am doing or why sends me off in to a rage.

My husband is constantly questioning what I am doing and why so he often bears the brunt of my anger. Last night he had the gall to question something I was wearing, I about lost it right then and there. Luckily for him I was in a rush to get somewhere and there was not time to murder him properly. If I am gonna do it, I want to do it right so that I will get off. Hey CSI is one of my favorite shows after all.

Luckily all this rage is cured once I get the giant baby that is growing in my womb out. Then I get all doped up from drugs for the pain and all the world is right again.

The first post

I am not quite sure what to write. I guess that I will introduce a bit. I am a stay at home mother with one 19 month old son and another one on the way. I know I am nuts. It gets better, my son has a heart defect and has had a stroke. He is not walking yet and is a little developmentally delayed. He is not a great eater and had to have a tube surgically placed in his abdomen so that he can get the nutrition that he needs. I not only do I have a high needs child but I am adding to my family. I think I am a glutton for punishment or something.