Home sweet home!

We are home safe and sound, exhausted, and excited! We made it in around 1 am, slept late, and had a lazy day. I ran to town to pick up some meds, and now Sam is napping, he's still off schedule. We have dr appt tomorrow to get flu shot and to get orders so we can restart therapy. Also have to buy some items so I can start the process of trying his new tube feedings of actual food. I am very excited about this! He will start his medicine to increase his appetite tomorrow night, and I am anxious to see how this changes things.
I will try to continue to update this website occasionally now that I can do it from my phone, I know not everyone that follows sam's story has Facebook. We can never thank you all enough for you love, support, and prayers!

Ready to be home!!!

We had a good day yesterday. Slept in late, Sam had an appt at 3:30, ate dinner at longhorn, packed, and called it a night :) The boys are still sleeping this morning! I am trying to get last minute stuff packed. Sam and I are meeting our fellow heart friend and mom, Georgiana and Angela, for lunch today. So excited to see them! We have an appt at 4 pm to meet with the nutritionist, and we have a flight home tonight leaving at 8pm!!!!!! I am beyond ready to be home! I want to sleep in my own bed, not have to walk 2 miles to get somewhere, see our friends and family, go to church, and for the first time since Sam has been born, be home to enjoy fall! :)
Thank you for your love and prayers! Here are some pictures from the Prouty Garden at children's hospital. Oh, and Sam munching on his cheeseburger at longhorn! :)

Great day and beautiful water!

We spent the day with some friends, Amanda and Chris. Amanda is a friend from home that currently lives in Boston. They have a beautiful home on the water in Winthrop. We went for a walk, had a great dinner, and enjoyed the ocean front view at their house. Sam loved the water, walking up an down the dock, and the planes that take off and land right by their house!

Enjoying the city

We spent the afternoon at the aquarium. Sam loved all the fish, sea turtles, seals, and sea lions. We also watched an IMAX movie in 3D about sharks. I'm not sure which Sam liked more, the movie or the popcorn! I wasn't sure if he would wear the glasses or not, but he did! He kept trying to reach out and touch stuff and also tried to feed the sharks popcorn :) He is now pooped out back at the room. I'm sure this late evening nap will be haunting us at 2 in the morning!

Busy Day!!!

We had a very busy day, and I am pretty much exhausted :) We walked to brookline this morning to get Sam some clothes, I had only packed him one pair of jeans and a couple of long sleeve shirts thinking he be in the hospital the entire time. Then we walked down to Fenway and did the tour of the park. Walked home, took a short rest, then back to Fenway for the ball game. We just walked in the door a few minutes ago... Sam had a blast at the game! Here are some pictures of our day. Sorry, I'm not sure how to control the order they show up in...

We have a plan :)

We absolutely loved Dr. Rosen. It was the first time I felt someone understood exactly what I was talking about and shared the exact same concerns and actually had some ideas of what to do to help. They did see some dismotility of the esophagus on the upper GI study. She want to do an actual esophageal motility test to get a better idea of what's going on with that. That is scheduled for Monday afternoon. It is mainly for information, there isn't any medicine that can be used for this, and the only other option is undoing the nissen, which really isn't an option for him. Also, she is going do bloodwork to check his thyroid function. Her main concern is getting Sam to grow, not only in height, but to gain weight. She completely agrees that he should be tolerating much more volume in his stomach. She thinks the core problem is with his stomach. She's thinking there is some nerve damage that is causing the issues. So there are a couple of things we are going to try. She is starting him on some medicine, periactin, that should increase his appetite and help his stomach relax. We are also going to start tubing actual foods in his grubs along with his formula. We will start by adding a little stage 2 baby food meats in with his formula during his regular schedule. Over time the goal is to increase this amount and eventually we would essentially put what we would be eating into a blender and tube it in him. Also hoping that over time his stomach nerves would begin to learn to feel hungry and full. If these things don't work out we have a couple other options in our back pocket. We have an appt with the nutritionalist on Tuesday afternoon to learn how to advance his tubed food feeds over time. So after tuesday, we will be heading home!!
We plan to enjoy our time here in Boston in the meantime. We have never done anything while we have been here except be at the hospital. We have tickets to the red sox game tomorrow night, plan on visiting some museums, and also seeing some friends in our free time this weekend.
Please be in prayer about our next step in this feeding issue. I am very hopeful in Sam tolerating this new diet he will be on, and I am hopeful this will be the path to our long term success of him gaining weight and tolerating food and volume in his stomach.
Thank you for your prayers and for loving our boy. I will post new pics as I get them :)

Yawkey House Living...

We are back at the yawkey house for the time being. Sam had the upper GI study done and I think everything looked ok, but no official word yet. We have an appointment with Dr. Rosen (GI dr) at 7:45 in the morning. I'm guessing we will come up with a plan then. We saw his surgeon that repaired his nissen when we were here before (dr. Smithers), and I know he was goin to contact dr Rosen to discuss what we need to do.
Sam actually had a blast during his overnight stay at the hospital. We had one of our favorite nurses, Meg, last night, Another nurse we know, Danielle, had him today. Two of his favorite nurse practitioners were there, and another one of his favorite nurses was working. He spent the majority of the day riding the halls in his car visiting with everyone. He even got his own badge made and the pull clip that goes with it. :) We are truly blessed to have such wonderful people care for and love Sam!

No surgery!!!!

We have had a long day, but it has paid off. Everything looked good in the cath, so no surgery for Sam! We are beyond thrilled and relieved :)
We are staying the night in the hospital and will hopefully see GI tomorrow to see if we can come up with a plan. I am thinking maybe we will do some outpatient testing/appts, but really won't know anything until we meet with the doctors tomorrow.
Thank you all for the prayers! Sam is proof a million times over that God hears each and every one. Please pray he has a quiet and pain free night and we all get some rest. :)

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.