3 1/2 Weeks Since Surgery

It has been so long since I have written or posted any pictures so here are a few the last couple of days in the hospital and then on our way home. The pic above was right before we were discharged from the hospital. We were so ready to go home!

This was in the car on the way home from Utah. He had so much fun with the toys grandma Bates gave him-(Thanks grandma and grandpa).

I can't believe it has already been 3 1/2 weeks since Burke had his heart surgery. We have been home now for almost two weeks and I don't know where the time went. While we were in the hospital I had the time to update our blog about what was going on with Burke, but since we have been home I don't have the time or energy to update it as frequently as before. Here is an update on Burke's progress.

Burke slept a lot the first two days we were home. He slept all night long, and was doing pretty good until the throw up came up the first time. It was awful! It was bad for about three or four days just after we got home. He would somehow get gagged, and then choke really bad, that would then lead him to gasp for air and then we would hear the horrible gargling sounds inside him and he would proceed to throw up three or four times in a row. It broke our hearts. This little guy has gone through so much we didn't think he would have one more thing to worry about, especially during the recovery time after heart surgery. But, we are learning it is very common for heart babies to get reflux after surgery. He had it when he was a baby but it was definitely not this bad. We for sure thought we would get medication to control it or at least to have it not hurt him, but our Cardiologist suggested that we not do anything but wait it out. I was stunned when she told me that she wasn't going to prescribe anything for him. I was so mad. My little baby is in pain already and pretty much traumatised from surgery the least they could do it help the reflux. Wait it out, okay, I can be flexible. She told us that 9 out of 10 times you don't need to treat the reflux, it will just get better as time goes on. So, we would wait. And I can say that it has gotten better. EVery so often he does throw up everything he just ate, but he doesn't throw up everything all the time. For the most part he can hold his food down. I think he throws up when he eats too much. I just feel so bad.

He is a trooper though. EVeryday he is getting stronger and stronger. He is walking more now. I think though, he is having to re-learn how to walk. It is so sad to see him try because he is so skinny now and he just tries so hard to walk and he can only go a couple of steps before he either gets scared or he falls. I think he is scared to fall because he knows it will hurt, or he thinks it will hurt. He is awake a lot more now, and is almost, but not quite, back to his normal activities. The doctors said that it would take about 6-8 weeks for him to return to his normal self and activity level.Here is Burke Thanksgiving night and that was the first night he really came to life again. He was up for a long time and he was LOVING playing with Sydney's little dog Chloe! It was great to see him somewhat himself again. Thanks Kathy for playing with him that night he was loving it!

He is now officially completely and utterly terrified by doctors, nurses, and even the word "doctor". It is so sad. We have had two check ups with his cardiologist since being home. The first appointment I don't recall being as bad as the second. The second though, was horrible. He cried the whole time. The moment we stepped into the room he cried. Then he cried harder when he saw the doctor. It was bad. She told us that this behavior is normal for his situation though, which I totally agree with. I mean he was totally blind sighted when we took him into the hospital, he had no idea what was going to happen to him. And for all he knows, those doctors were NOT helping him, they just made him hurt so so bad. I can't even image what he is thinking. No wonder he clings to me nearly every second of the day. He probably thinks that some doctor is going to take him and cause him more pain. So, yes, he is basically velcroed to me, and it is hard sometimes, but I am glad that he can find comfort in knowing that I am here for him and will always be here to take care of him after his surgeries and here to rock him to sleep when he decides to be fussy at night. I am here and I love that I am here. The doctor also said that his age is the worst time to have surgery because they almost revert back to being a newborn in the sense that they need mom around all the time and they need the constant reassurance that I am there.

His two post-op check ups with the cardiologist went really well. His lungs looked great in the x-ray and they were very pleased to see him doing that well for all that he went through. He is slowly, VERY slowly, gaining weight. But the dumb reflux doesn't help us at all but it's okay. Here are some pictures since we have been home. I will for sure do more posts about what else has happened these past two weeks- like Thanksgiving and things like that. Until next time.Burke and Kathy (his aunt for those who don't know Kathy. But what am I saying, everyone knows Kathy, or it might be the other way around, she knows everyone. I'm not kidding, she does, right Kath?)