My Baby has a Heart Defect

A lot can happen in a week. Almost a week ago, Wednesday the 22nd at 11:33 I gave birth to a beautiful baby boy weighing 9.2 lbs. I never thought I would go into labor on my own but after having a meltdown that morning things started to happen! All through this pregnancy I had been praying not to have to have a c-section. It looked very promising that I would have this baby the old fashioned way. I was SOOOO close! Inches away really. His big 'ol head just would not budge! I was terrified! The last c/s was so awful, I didn't want to go through it again. I was panicking and crying the whole time. My poor doctor probably thought I was nuts. But with my husbands help I made it through.

I had to be drugged up with god knows what with my last c/s. I was out of it but I sure felt the pain right after. This time I felt nothing! I kept waiting for it to get worse and it never did. The doctors and nurses here were amazing. Everything about my delivery was better than I ever expected.

The next few days were pretty great. I just hung out and fed the baby, tried to calm him and just stared at him and held him. I was so happy and couldn't wait to take him home. Then the pediatrician came in.

They of course had been checking his heart the whole time we were there so it was really weird when he told me he heard a heart murmur and it was pretty significant. He wanted to do an EKG and Alex was gone for about 45 minutes. I wasn't too worried since I know murmurs are pretty common. My nurse came in and told me to get my husband down here. The doctor needed to speak to us right away. I looked at the nurse trying to see if she know anything. She just looked worried. I started to cry cause that's what I do best.

Rick got there and I honestly don't remember what the doctor said. Just that they needed to transfer him to Children's Hospital on the other side of town. I wasn't going to take my baby home. I get discharged and go down to the nicu. They were trying to put an i.v. in and apparently my son has the bad luck of being a "hard stick". It would be the first of many, many i.v.'s.

By the time they started to transport him I was in pretty bad pain. I still needed to get my prescription filled and figure out what to do with my five year old. He wanted to be with us and was almost crying but we had to send him with grandma. It sucked.

So we get to the hospital and my little baby has wires and tubes everywhere including his head. I broke down and I don't think I stopped crying till we left. Then we get to talk with a doctor. He had multiple thing wrong with his heart. And ultimately it would turn out he has hypoplastic left heart syndrome. A pretty shitty thing to have. There are 3 things they can do. Heart transplant, go home and let the inevitable happen or the Norwood procedure which involves. Right now the only thing keeping him alive is this little blood vessel called the ductus arteriosus. All newborns have it and it closes at about 3-4 days old. They can keep it open with medication. The heart sounds pretty normal up until the vessel starts to close. If I would have had a vaginal delivery I would have been sent home a day early and they would have not heard this. I guess it could be a lucky coincidence but I think God gave us a little divine intervention. Why couldn't God just let him have a normal heart I have no idea. 

So tomorrow morning is surgery day and it's going to be long and hard. The recovery is going to be long and hard. Who knows when he will get to come home. I just stare at all of this baby stuff during the day. His crib is in our bedroom and I stare at it during the night. I see little babies everywhere. I wish I was waking up every two hours to feed him.

I'm trying not to say "why me" or "this isn't fair". I'm just trying to deal with it a day at a time.  I'm so lucky to be in a state with such a great hospital. The doctors and nurses are so beyond smart and they are so nice! They don't act like shitheads like some doctors do. They are really caring and trying to do the best they can. I just pray that God gives them wisdom and a steady hand.