If it can be done, it can be done here.

We will upload pictures later but wanted to give everyone an update from our recent trip to Philadelphia.

Our trip was a success- first, little man travels like a champ and was an angel the entire time. We got to the Ronald McDonald House about 7pm on Tuesday night. Its an amazing place. The original home is from the 1800's and belonged to the owner of the Philadelphia Inquirer. We pulled up and were blown away by the holiday spirit- the Christmas lights sparkled across the entire property, Ronald's statue was waving at us and it just looked like a happy place. We were checked in and given a tour. They have so many play rooms, one is a dress up area with puppets. We let Liam play and will upload that picture. The teen arcade was near our room (Ms. PacMan-woot!), there is also a gym, media areas, library, business center, etc. They have a kitchen where volunteers come nightly and make a home cooked meal for the families staying. We got there as they were cleaning up but were able to have a plate of warm food before settling in for the night. Very much appreciated. It was tough looking at the other children there. Liam was by far the youngest there. Alex put it best when we saw a little boy at dinner, he obviously was doing rounds of chemo, had no hair, etc- kids should never have to go through this pain. He was sitting at a table with his Mom eating a Lunchable, like any other 5 year old little boy. I'm thankful Liam won't remember this part of his life, other than knowing what the scar on his chest is from.

We got up very early on Wednesday and headed to CHOP, which is about a mile from the RMH. My mom came down and brought my grandmother- Liam got to meet his great grandma. It was so nice to see her hold him and have a chance to meet her first great grandchild. We all had breakfast before heading upstairs to the clinic. The clinic consisted of a consultation with a cardiologist, an ultrasound of his heart and sitting down with the surgeon. The entire team was very professional, with the cardiologist walking us through care leading up to surgery and afterwards. She suggested the 4-5 month time frame but made it clear that he could start having "spells" at 4 months. We both want to avoid him having any spells at all to save him from having any pain, set back, etc. Spells are when infants turn purplish blue and sometimes pass out. Its not something we felt we could also deal with very well. Because of this information, we decided to schedule the surgery right before the 4 month mark allowing him to grow as much as possible.

The echocardiagram was interesting. Apparently most infants sleep through it and just lay there. Well...Liam was wide awake, going number 2, kicking, pulling off the EKG wires..enough so, that the technician got "sweets" to help calm him down. My mom was offended since the package said it was to soothe distressed infants. He wasn't distressed, he just wanted to play! The results of the sonogram were good though- nothing has changed and it was a textbook case of tetralogy, although it sounds like his pulmonary valve is very tiny and will need a patch during surgery, rather than just widening it.

From here, Katie who has been coordinating our care and has been amazing to work with, took us on a tour of the CICU and surgical center. The blog title is the first thing I noticed when walking into the surgery waiting area. Can that be a better quote to read? She walked us down the hallway where we will hold Liam and walk him to the surgical table and hand him over. I would be lying if I didn't say I was tearing up and trying to hold it together. I felt very lightheaded just imagining that morning. We were able to see the recovery area and where he as an infant would be. I am able to sleep and stay with him the entire time during his stay which made me feel some relief. They have a few parent rooms like the RMH for parents to eat, get online, even a pumping room for Mom's. We then saw the step down unit, where he would go after the chest tubes are removed and he is downgraded from ICU. Hopefully that will happen within 2 days. Overall, he will most likely be there for a full week. The only high risk he has going into surgery is the Down syndrome.

We then met Dr. Spray. I have spent a lot of time reading and researching, had a long list of questions to ask and had told myself I would make very clear my concerns for Liam. Whatever happened to that steel resolve, I don't know because as soon as we sat down with him, I forgot it all. During the earlier sonogram, the technician told us that Dr. Spray was one of the 3 top world surgeons. I think that may have scared me a little and put me more in awe with him, and the fact that we were going to talk to him. In fact, it was delayed because he was in surgery and his assistant told us, he would not be up until the baby was comfortable and he had spent time with the family. That alone impressed me. I want nothing more to hear how Liam's surgery went and what Dr. Spray would see- so that he refuses to leave until the family is calm and informed, what a great bedside manner.

Dr. Spray does 50-60 surgeries like Liam's a year and he came in with a good air of confidence about Liam, his future and what he needed to do to repair him. The only question I asked was the one I think most parent's probably have- what is the mortality rate? He said in general, it is 1% but that is when infections occur, when something odd happens and it is extremely rare. He said there was also a small chance of a future surgery if he was unable to do a total repair, which he did not think would be an issue and this is the only time I made myself hopefully clear. I replied that if he needed to go back in, I can handle that but at the end of the day, I want my son alive. I know the man knows this but this is my baby, not just a patient and the good thing, I think he got that. He was compassionate, more so than I expected. He put us all at ease because we barely said anything. Probably the most important thing we heard was we were lucky- Liam was born with the right parts in the right place, they just need a tune up. Many kids aren't this lucky with congenital heart defects. This was a straightforward repair. It is still open heart surgery but hopefully they can do the open heart piece in only 30 minutes- and that's the key to recovery. The quicker they repair, the less time on any machines.

After we met with him, Katie did tell us that Dr. Spray hadn't lost a patient in 2 years for this surgery, which was a great relief to hear. Another question we were worried about was that many kids have to relearn all that they knew after the surgery. Our biggest concern was eating since that is the core of his strength, both for him to maintain and gain weight but also for his Down syndrome therapy. She reassured us that isn't so and they have not found that in their surgeries.

We spent about 6 hours there and we probably won't be back until Liam goes in for surgery. There is a chance he will go earlier if his oxygen levels begin to dip but we are hoping March is the time. After we finished the clinic, the five of us went across the street for lunch and met Brian, Mary and their daughter Abby. Brian and Alex have been friends since childhood and Mary has known Alex since high school I believe. Abby really is one of the cutest little girls- we haven't seen her since her baptism, Alex is her godfather and she has grown so much. She is a little person now, not a baby. Brian works with a lot of DS children and even TOF children for therapy, which is a great resource for us to utilize. It was nice to catch up and talk, although it was way too short.

We all parted ways around 3 and headed home. It took us about 5 hours to get home, we just hit horrendous traffic in MD because a car blocked 95. Yay. But we are home and we feel that this is the right place for Liam to get his surgery done. The team and the facility are amazing. I've never been to a children's hospital and just the decorations and colors, it blew me away. It wasn't a cold place at all and that made me feel good for Liam. He deserves the best and we want this to be the only open heart surgery he needs to go through. I think we can do that at CHOP and get us back to a normal lifestyle. No more checking his breathing constantly and his color, several appointments a week, not being able to let him cry, etc.

After his recovery, the restrictions are going to lift and we are going to finally be able to take him out to the store and to the park. That seems silly but I am a proud mom and I can't wait to show him off and just do the everyday errands with him. Its going to be awesome- the little things are exactly what matters. Its been so hard not showing him the world but I can't wait to throw a huge party for him when this is all done. So pony rides and moon bounces, here we come!