I can't believe that one year ago we heard the devistating news that Jack would be born with only half a heart. I can't believe we have made it this far. I was reading another "heart mom's" post today and it was her 100th blog post about her daughter and her fight with HLHS. It made me realize a few things, one being, I am a major slacker when it comes to updating this post. But also, it has been one heck of a year and I am so glad we chose to fight for Jack rather than taking the other road.. which is now the road less traveled by most. There were so many things that my heart mom friend mentioned in her 100th post that I can truly relate to. Not just the heart things but the mom things too.
Jack has been the greatest gift I could ever recieve. I enjoy every moment I have with him, even if its sitting in a hospital room for days and days, its time spent with the most wonderful thing that has come into my life. His SMILE, his belly LAUGHS, his CURIOUSITY, his STRENGTH, his FIGHT, and His HAIR (had to throw that in there) bring me so much happiness everyday.
I can tell you that our lives have changed so much. A lot in which it has taken time to get used to, and a lot in which we didn't want to change but knew we had to in order to make this work. We are trying to manage now with one income, one car, living at hospitals for weeks at a time, spending time apart because we (jack and I) have to be at the hospital and justin NEEDS to work. It hasn't been easy. But I wouldn't change it for the world. If this is what we have to do, then we will do it. We will completely simplify our life to where we need to be a little less than comfortable and if it is giving up the bigger and better things for now, then it has to be done! I just keep telling myself everythings gonna be alright. I always think of that song by Bob Marley, Three Birds. "Everythings gonna be alright"... It just has to be!
This has been a complete test of my strength. I always thought I was independant and strong. But not until this life change, I realized I really am strong. I have learned so much from this experience. Heck, the doctor asked me if I wanted a job because I read the echo before he was able to open his mouth and I read the xray with the tech and said "I see fluid" and when the doctor came into the room he said he hadn't seen it yet and I told him what was there. I was right! I never would have thought that I would have meds and doses in my head and know what Jack should be on based on his weight. I have learned to question doctors, yes they are experienced, but sometimes a mom just knows her child more. And sometimes me knowing him more actually gives doctors the answers they are looking for. I told a doctor my remedy for getting Jack to eat and he was amazed, like why didnt we think of that amazed. Although I never wish this on another, in a way it feels as though I was meant to be a heart mom!!
NOW FOR JACKS UPDATE:
He is doing great. His levels have been great and he is happier than ever. As some of you know we had Jack's christening a few weeks back, what a great day that turned out to be. But.. we ended up in the hospital ER the next day because Jack woke me up early in the morning with very heavy breathing. I brought him in to the hospital to make sure he was ok. His doctor came right in to meet us at the hospital and after xrays, ultra sounds and monitoring, we were sent back to childrens. The last cath that jack had did not last as long as we had hoped. With what the doctor said, we were going to have a cath and if the problem couldnt be fixed there, an unplanned surgery would happen. After the cath and another few days of monitoring, the doctors beleive that Jack would not need this unplanned surgery. Sweet Releif!! We are in hopes that this will be it until the next planned cath which should be right before his surgery at 2 years old. It would be nice to have a clean break from hospitals for a while. He is doing great now though. Rolling all over the place, talking up a storm, and still fighting.. His early intervention puts him at 10 months and being only 8months old (this week) thats great to hear. She said she was amazed at his mobility after being on bypass twice. It usually slows down the brain. We are thinking maybe it did the opposite ;)
Well if this wasnt the longest post ever!! Im off to bed. Still havent gotten the sleeping through the night thing down yet! Soon I hope but its ok, I like snuggling him as much as I can, so if its at 2am- so be it! Good night all!