Good news...

Sorry this is the first update, I had to learn how to add pictures when updating from my new iPad my hubby surprised me with :)
We are at the house now, the boys are still napping, I just woke up! We have had a good, but very busy two days. The plane rides were good and Sam loved them! We had an hour delay once we were on the plane in Detroit, but as soon as wee took off (or "go fast!" as Sam called it) he slept the rest of the flight. We got some dinner when we got to town and called it a night. We had a clinic day today starting at 7:30 this morning, which included X-ray, bloodwork, vitals, echo, meeting with our cardiologist and a few other people. It went very smoothly, just busy and tiring. Sam sat in my lap for his bloodwork and we held his arm out, only two sticks to get his labs today(which isn't bad for him) only later to find out they clotted before they got to the lab of course. No repeats today though, will just do them when he's asleep in the morning for his cath. One huge difference this time already has been his talking...it was much harder to take hearing him say "ouch!, owie, and that hurts!" but I couldn't keep from smiling because I was proud of him using his words :).
It is priceless how much coming back to the same place and the same wonderful people means to us. Sam recognized his cardiologist, whom we love!!!! Also we went up to 8 east, the floor he is always inpatient on and visited, his favorite nurse was there today, Christine. She literally started dancing and tearing up when she saw him...and he recognized her! (we had been looking at pictures of her on my phone lately) No one could believe how good he looks and how big he is, especially how tall.
Now for the amazing news you have all been not only waiting, but expecting to hear....Sam will have a cath tomorrow, he has to be at the hospital at 11 am (we are an hour ahead of Kentucky) and that time is a little up in the air because we are not first case there is no way of knowing what time the cath will actually start, it depends on what time they finish with the kiddo before Sam. They are going to be doing mainly measurements and possible interventions if they see fit. Dr. Marx (our cardiologist) said he needs to see the results from tomorrow's cath before he is convinced Sam needs surgery. He said that some pictures, referring to his echos, his aortic valve look pretty bad, but in other pictures it looks pretty ok. He is curious to see if higher pressures on the left side are making it look worse than it really is. So our prayers are working!!!!
The other big new of the day is Dr. Marx is completely on board and in agreement that we have to get to the bottom of these GI issues! Shew!!! What a relief to feel like someone finally understands and will help us push to figure something out. (not that our cardio dr at home didn't, but we were getting nowhere with GI in Louisville) I also requested a certain GI dr that was recommended from another heart momma that she loves and was not dismissive about her kiddos problems either. Please be praying this is our gal, the one who will understand how big of a problem this is and be willing to do what it takes to figure this out, her name is Dr.Rosen. Here are some pics from our journey so far...

Sleepless night...

I lay here awake, trying to go to sleep, knowing I am going to be tired in the morning, but not able to settle my mind...my emotions...  I am just staring at my sweet boy, asleep next to me, so peaceful. And I am overflowing with thoughts and emotions. The love I have for him literally consumes me and takes my breath away. I am a disaster thinking about this next week and am so ready for it to just e here because when you have no choice but to hit it head on and go through the motions it is so much easier to do. It is now that is the hard part. Knowing what is coming, knowing that once again our world is going to be turned upside down. You would think the sixth time going into this would be easier, but I think it only gets harder. There are no words to describe handing over your newborn born baby to have their first open heart surgery, you already more love for them than you could ever imagine, I find it ironic to say that it was easier then. The older he gets, the bigger the toll it takes on all of us. He is absolutely amazing about the whole thing, he is willing and ready to take on all the twists and turns that usually comes with surgery. He is awesome in the hospital and always goes right back to our normal hospital routine filling his days with roaming the halls in the stroller and flirting with all of the nurses. And I know that once we are in it I will be fine too. I keep trying I remember if I am always this much of a wreck before we go in, and I probably am, it must just fade like the rest of it. I keep telling myself that everything will be fine and go smoothly and in a couple of weeks I will once again be laying in this bed watching him sleep, but the reality of it is that there is a possibility that won't happen. This is actually probably going to be one of the least complicated surgeries he has had, we aren't changing blood flow or anything we are only replacing a valve which should make things that much better. But I have known several families that went in for a simple procedure or even just get sick and they are laying in their beds tonight without there little one. It is not something I dwell on, I feel confident Sam will be fine, but in our world, it is a possibility. I often think of the families that have lost their sweet babies and wonder how they do it, how do they get though the day, how do they ever get out of bed again...I literally just keep praying that I don't have to figure those answers out and I pray for those families and that God will give them the strength to face each day. Even if everything goes perfectly, I struggle that he has to do this again at all, and knowing it probably won't be the last time either. How do you take a happy and seemingly healthly two year old and put them through their sixth open heart surgery, how can I not feel guilty about this? I wonder if he understands that this is something that has I be done to save his life? And really that is all it boils down to, no matter what emotions I am feeling, no matter how much I hate it, the reality is that it has to be done. So, I am sure as the week goes by and we make our final preparations to go, I will get myself in check and ready to face what is ahead of us. I can say with everything that I am that only God's grace has gotten us where we are today, and I know that He will guide my every step as we head into this journey. Please pray for us this week, pray for a peace that only God can give, pray for safe travels, pray for our health (I have been a little sick, Sam can't get sick at this point), and pray for us to enjoy these last few days at home with each other, our friends, and our family. I am so grateful for the amazing support system our family has, and I know we would not be where we are today without such wonderful people. We will fly to Boston on Sunday, and I will try to update regularly on this website. Thanks for loving my boy.