An overdue update..

Hello all, it's been a couple years since we have posted. This is a good thing. Just a quick update on the last couple years... After we got through the initial terrifying news of having a baby with a heart disease, we had the baby, then we had a really rough couple months with his first surgery and labs, etc.. But as you can see from our lack of posts; once he was like 2-3 years old, he stopped getting sick  all the time, we stopped going to the hospital every other week, and we stopped posting on this blog. We just enjoyed having our son around as a normal kid.

In 2017 he started kind of dragging a bit, he wasn't keeping up with his friends, he was getting wiped out and tired every day.. We had to go through another round of surgery.  This time it was quite a bit different. We had a little kid that could talk to us and could tell us he was afraid or hurt. This was pretty hard. Even though we were really struggling with this internally, we could not let Michael  know that.  We wanted to be there for him, we wanted to make this an exciting thing for him; he was getting his Robot Heart! He could run faster, jump higher, he was going to be just like Iron Man.. No more deformed valve holding him back. 

In October 2017 he had his mitral valve replaced. He handled it like a true champion. He was brave and excited. It is incredible how optimistic and fun he still was during his first couple weeks in the hospital. We took lots of pics and videos, he was in the hospital for like 2 weeks. The surgery went well, and he healed up pretty quickly. Within a couple weeks he was doing normal stuff again.. for the last 2 years he has been an animal! Riding his bike, riding scooters, roller skating, swimming.. He even jumped on one of the neighbors motorcycles and took off down the street by himself - that was terrifying!  

There are things they don't really talk to you about until after you get the valve replacement. One of those things is the meds.. Mike has to take a blood thinner EVERY night before bed, and he has to get his blood checked multiple times a month to make sure his INR levels are good. This is pretty crappy for a 5 year old.. He has to go get poked at least once a week. He has been a champion for the last two years.. never cries, just goes and does his business. He is so amazing. A kindergarten age kid should not have to deal with crap like this, but he handles it and is happy to live his life.  We ended up holding him back 1 year and he did kindergarten twice. We didn't know how long the healing would be, we were worried about him getting hurt, etc..  There is no guide to follow when you have a kid with a heart condition, you just have to do your best and do what you are comfortable with.  Bryt and I have been very fortunate to have each other. We both take turns being the 'stable' one... if that is even really a thing...

Anyways.. Mike has been a champ, we ended up having 2 more babies after him, Emma and Maisy. and then we moved to Utah.  It has been a great move, but also challenging. We had to find a new cardiologist, new doctors, new lab for blood work, new emergency contacts, new Insurance.  Lots of 'adulting,' but we are making it work. We miss our old cardiology unit in Colorado. The hospital there was incredible, the cardiology wing was very comforting,.. maybe just because had spent so much time there. 

So with that long update out of the way... on to current events: Tonight Mike was hauled off in an ambulance again. He has been complaining about chest pain for a couple days and woke up tonight just looking miserable and in a lot of pain. We don't typically like doing the ambulance thing, but tonight it just looked like he was really hurting.. it is hard to handle because there is not really anything we can do about it. We had taken him to ER like 3 days ago for similar symptoms but they did not find anything really wrong with him and chalked it up to a belly flop at the neighborhood pool. We don't want to overreact, but we also don't want to watch him have a heart attack or something... so we usually just go with the ambulance route and play it safe. It is hard to see your kid go off in an ambulance, but after a couple times, you just learn to stay calm and trust the medical professionals.   You also have to learn to just trust your gut, or your instincts, or the spirit, or whatever you call it.   It is really hard to stay calm, but you cannot let your sick kid see you freak out and start losing it. You have to stay sharp in the moment. Once he is taken care of you can go cry yourself to sleep or whatever.  I am still just trying to hold it together until we know what is wrong. Bryt is in the ambulance on her way to Salt Lake.