Where do I start?

Wow, where do I even begin....GOD IS GOOD!!! ALL THE TIME!! Our week started being freaked out at the idea of our little man going under general anesthesia and ended with bringing home a healthy child.

Monday was nerve wracking as you can imagine. Trying to keep Aiden comfortable and calm when he just visibly felt terrible. We packed for what we hoped would be a quick overnight trip and a quick "routine" procedure to insert a coil in Aiden's heart to close the hole and fed Aiden for the last time at 3am. Tuesday morning we wake up and head to admitting at CHOC. When we arrived we took care of all the paperwork and went to the Short Stay pre-op area where Aiden got his iv and they did all his vitals. There we found out that his procedure that was supposed to be scheduled for 9:30 or 10am was postponed to 11 or 11:30. Normally this wouldn't be a big deal but keep in mind that this child hadn't eaten since 3am. At 12noon we got word that they previous surgery was still going on and it would still be a longer wait. At this point, our child that had been doing really well all morning was now so hungry and becoming inconsolable. It was 1:30 when the came and took all of us to the Cath Lab!!!!!! Our poor baby was STARVING!!

Aiden and Daddy in Pre-op

They let us go in the room with him until he was completely anesthetized so they pull out a vile of white liquid they called milk and put it in Aiden's iv. Aiden's eyes rolled back in his head and his whole body went limp....and at the same time my heart sank in my chest and eyes filled with tears. I had to turn and walk out of the room. Drew and I have had our fair share of surgeries and knew what to expect, but to see your child go through that - it's an image I don't think will ever leave my mind. I looked at my parents and wondered how the heck they had done that so many times.

All puffy full of iv fluids again.....

They told us that the surgery could take anywhere from 1 1/2 to 3 hours. We went down stairs and tried to eat lunch and came back up about an hour and a half later and one of the surgical nurses was out of the room and said to us, "oh good, you're back." My husband as most of you know is an eternal optimist and I absolutely love him for it, but my mother's intuition kicked in and I knew that wasn't good news. The other surgical nurse came out and explained to us that the PDA was much bigger than they had anticipated and could not be closed with the coil. Only 1% of all PDA's are the size that Aiden's was (just over 4mm). They took us into a room and showed us the arthroscopic images from the procedure and I think I felt my heart break again at that moment. Dr. B went on to tell us that this wasn't something that could wait and needed to be taken care of right way. So, Drew and I decided to do the second surgery the following day. Off to the recovery room we go where they let parents wait for their child to wake up. That's when we met Nurse Crotchety. She was so cranky and had NO bedside manner what so ever! I asked her a simple question about Aiden's monitor because I wanted to know at what range they wanted to see Aiden's respiration improve to and the response I got was. "Mom, you be the mom and let me worry about the monitors." I just looked at her and took a deep breath but I'm sure if my eyes could talk - she wouldn't be happy with what they said. Dr. Palafox was going to perform Aiden's surgery the following day and he came down and talked to us about the surgery and observed Aiden's response to the anesthesia. He told us that he routinely does these surgeries on 1 pound babies and that Aiden should do really well so that made us feel comfortable with him, but still not happy to see Aiden have to go under AGAIN It was terrible to watch and hear Aiden come out of the anesthesia. His throat was so sore from being intubated and his voice was so hoarse - poor baby! You could see the pain on his face. He cried the most pathetic cry and wouldn't open his eyes for a little while. Once he finally did his eyes were open HUGE and he had very erratic eye movements and wouldn't focus on anything. Once he was stabilized we were off to our room in CHOC...... This seems like a good place to tell you how odd the relationship between CHOC and St. Joseph's hospital is - all surgeries are done at St. Joseph's from what we were told, but at any given minute you never know which stinking hospital you are in or how you got there. My parents would call and try to meet us somewhere and I couldn't even tell them where we were. AND, the receptionists are useless in knowing where to send people - but don't even think about going in the wrong part of the hospital with the wrong badge on. My dad was actually told that he couldn't use a specific bathroom because he had the wrong visitor's badge on. Are you kidding me?!?!?! Anyway, we got settled into our room (with a roommate) and tried again to make him as comfortable as possible. I think it was about 10pm before we could lift him without him crying in pain. He had a brace on his leg so that he couldn't bend or kick it or do anything that would reopen the hole they punctured in his groin to try to implant the coil. - yeah, he wasn't a fan of that one either. Poor thing again couldn't eat after 3 again and he was not thrilled about it and let us know it.

hooked up to so many monitors

About 10am on Wednesday they came to bring us back down to the pre-op area....again and all the nurses remembered Aiden and were so supportive of us and just loved on him for the time we were there. The surgical nurse came to get us. We were only allowed so go to the door with him this time. They didn't let us be with him till he fell asleep. So we walked away and I balled again...for like the 9th time and then headed to "the lobby by the gift shop" where the surgical nurse told us to wait and spent the longest three hours of my life waiting for any one of the surgical team to walk around the corner and tell me that my son was fine and everything went well. We waited and waited and waited and finally my cell phone rang about 3 hours later and they said that Dr. Palafox had been looking for us and that Aiden had been taken back to his room. How could they be looking for us when we were exactly where they told us to be?!?!?!?!? Needless to say, I was LIVID!!!!!!!!!!!!!! I grabbed everything I had and ran to the 6th floor where they sent him and was even more livid to find out that he had been there for an hour!!!! If I ever see that surgical nurse again - let's just say that she would never forget me. :) I was so upset and out of it that I didn't even recognize that Katie Jocoby was there, but after we caught our breath we were very relieved to know that Aiden was in excellent hands. Dr. Palafox had taken some pictures of the hole next to an actual ruler and it almost takes your breath away. He told us that 25% of Aiden's blood supply never actually circulated outside of his heart and to the rest of his body which led to the pulmonary edema. So now that the hole has been closed and all of his blood is circulating, his blood pressure is very high and will take some time to regulate. My 14 week old son is on high blood pressure medication - how crazy is that?!?!?!?!? We have some follow-up appointments next week, but when they last listened, there was no trace of a heart murmur. THANK GOD! We came home on Friday afternoon and set Aiden on the couch in his car seat and you could hear him sigh with relief.

Private suite in the CICU - Drew and I took turns being up with him and sleeping the first night and then Drew stayed in a "Ronald McDonald Room" after that - it's a room for parents to go and sleep in peace

Since we have been home, Aiden's color has improved immensely ....he isn't that hazy shade of grey he was before. He also has been breathing so much better. We like to let him sleep on our chests and feel him take long deep breaths. We still need to work on the feedings. He will have a really good one followed by a smaller one and so on, but feeding time isn't a wrestling match anymore which is nice. The dripping sweat has subsided and he just gets a little sweaty on the back of his neck now. People have been asking how he is doing and all we can say is that he is doing as well as he can be for going under anesthesia 2 days in a row and having his muscles cut through and his heart stitched shut :( He's getting there :) He have moments of happy smiles and moments of tears but all in all he is getting back to the happy little muffin we know and love! The part that I would love to see him forget besides, well....all of it is - my once happy and social baby that would go to anyone and smile now looks at faces he doesn't know and whimpers as if to say..."what are you going to do to me?" I'm sure that will change as times goes by. He does have a bruise in his groin area still and has a 2 inch incision where they went through his back to repair the heart. With babies they don't have to crack their chest - they can go through the rib muscles to get to the heart which is nice.

Another piece of good news we got on Wednesday was that I got a job offer to work at my old JR High School as an Instructional Aide so that I don't have to go back to work full time and have my summers and holidays with the boy :) I will be working with a special needs child and using Sign again. Woohoo! We are so excited, but I start on Wednesday so I am a little bummed to leave him so soon after surgery, but there isn't really another choice.

We can't thank you enough for all the thoughts, prayers, emails, calls and text messages. We are so grateful to everyone who loves our little man so much. People's true personality comes out in these situations and we know that we couldn't ask for better family and friends. We love you all!