My Heart Baby

So, since the creation of Facebook, I have found myself updating my life through that instead of our blog. The only problem with Facebook, is that I like to put down everything that's in this head of mine, and not just a sentence or two. Yes, I'm one of "those" Facebookers who feels the need to write a novel as my status update, instead of the catchy little phrases that will hook people in to ask more.

I think this will be a better outlet for me to write about what's going on with us, Evan's health, and whatever else may cross my mind. Sometimes I feel like everyone else must think I'm a hypochondriac (which to some extent I will admit that I used to be) when it comes to Evan, or "Bubbas" as we like to call him around here. First, it was the never ending eczema on his face and body. Then, 6 months later, we finally realized he had the peanut and egg allergy that was causing the eczema. Once I eliminated any trace of these foods from my diet, he began to look like a whole new baby! The last two or three times that he has caught a cold, it turned into something bad real fast. Because of this, his pediatrician thought he might have asthma, but we were going to watch and see, watch and see...

On Labor day weekend, we took Evan to the after hours clinic to see Dr. Unis. He had been sick with a cold/flu thing for a week now, and had just had 103 fevers on the two previous nights. He was also getting his two top teeth and I knew this might be why he had the fever, but wanted to check just to make sure he didn't have an ear infection, or any fluid in his lungs, etc. Dr. Unis ordered up a chest Xray and along we went to have that done. Within an hour or so, she called us on my cell phone because she wanted to go over the Xray. They found something she wasn't expecting. Evan's heart was much larger than it should be and she wanted him to see a Cardiologist right away. The Cardiologist looked at the Xray and thought it could wait until Tuesday morning.

So, on Tuesday the 7th of September, off to the Cardiologist we went! They did an Echocardiogram on him (basically just an ultrasound of his heart). His Cardiologist, Dr. Manohar (Who I cannot say enough good things about), very carefully took the time to explain that Evan will need to have open heart surgery soon and why. Evan has an Atrial Septal Defect (ASD), basically a large hole in his heart. The type of ASD he has is called Sinus Venosus, for the location where it is at. It's located near the top of the atrium where the blood enters the heart from the body. He also has Partial Anomalous Pulmonary Venous Return (or PAPVR), which means that his pulmonary veins are directing blood flow to the wrong areas of the heart. His oxygenated blood is mixing with the unoxygenated blood and pooling at the bottom of his heart, thus enlarging it. This also causes a lot of excess blood flow to the lungs, which makes them a sponge for bacteria and other infections once he gets sick with a minor cold, etc.

The prognosis for Evan is good! The hard part for Obee and I is just making it through the surgery. Once we have made it through that, and his recovery, he should be just fine, thank goodness! It still doesn't make it any scarier for us though. I have had so many questions/thoughts racing through my mind over the last week since we first learned of this.

Today we met with Dr. Nasirouv, Evan's Pediatric Cardiotherasic Surgeon. We both really liked him, and he sat down and answered all of our questions. Evan loved him, and wanted to be in the Dr.'s lap the whole time! One comment the doctor made that really stuck with both of us was when he said he considers each child to be like his own when they are on that operating table. He asked if we wanted to do the surgery this Monday, and I about fell out of the chair! I am not mentally prepared (nor organized enough for the other kids) to do surgery this Monday!!! Finally, we agreed to do it on Evan's 1st birthday, October 7th 2010. What a birthday to remember! I am telling myself that this is a GOOD sign. What can go wrong on your birthday, right? Of course, deep down I'm scared like you cannot imagine....

Both doctors mentioned it would be good to keep the kids out of school, to be sure we don't bring any germs/illness into the house. I don't really think this is realistic, but we've talked about having the kids stay at my parents house instead during this time. If we do that, it will be like 3 weeks that they are there and that is just one more thing I'm stressed about. I don't want to be away from my other three "babies" for that long! On the other hand, I really cannot imagine having them here around Evan when he is healing. The girls are going to want to pick him up and hold him, and I'm not sure I will be able to convince Jordyn of why it is so important that they don't.

We should be in the hospital 5-7 days total. It doesn't seem like that long, it took us at least 40 minutes to get there today. I think I'm going to see if there is any room for us to stay at the Ronald McDonald house. I plan on being at the hospital the whole time, but this would give Obee and I the chance to switch off and go to a place close by to wash clothes, shower, make food, and maybe see our other kids. I think it will save us a lot of money on food if we can buy groceries and cook them somewhere instead of eating out all week. We certainly don't have any extra money to spare right now! So much to look in to and so little time! Agh.

The scariest part of all of this is the horrible thoughts that I cannot get out of my own head. Why do I have to be so crazy and always over think everything?!! I hate that they will saw open the chest wall of my baby boy. My sweet tiny little baby boy. They will break his sternum and then piece it back together to heal on it's own over the next six weeks. I hate that they have to STOP his heart to do this! The surgery will be about 4 hours and he will be on the bypass machine for at least 1 1/2 hours. That means my baby will have his heart stopped and a machine keeping him alive for over an hour. This may seem so normal and like no big deal to people who have already been through it, but to me...right now...it seems like the worst thing imaginable. I hate, hate, HATE, that he will not understand any of this, and will be in pain, in a big bed with wires coming out of him everywhere. This is an elective surgery. We don't HAVE to do it to save his life right now. It will GREATLY improve his quality of life, and his lifespan the sooner it is done, BUT..what if something were to go wrong. How could we ever forgive ourselves for making the decision to do it and not wait for some other day......Then again, when will I EVER think it's a good day to put him through this? Probably never.