Day 54

The day was very good. A few changes made today. Went down a little more on his sedation meds and increased his feeds Hopefully he continues to tolerate it and they can keep increasing. Worried for the future days to come but one day at a time.
Liam had lots of visitors today. Uncle Tang still in town, Grandma and Grandpa Mirone also here. We had a nice visit with cousin Brian and Katie. He enjoyed all of them. He was wide awake a lot today which we all took advantage of. He loved looking around and interacting with everyone especially Uncle Tang. He told him lots of stories, unfortunately they were all about me and they were not very mommy like. Haha.
We are enjoying every second of everyday.
Xoxox

Day 53

My day ended with the best surprise ever. My best friend Josh (aka Tangy for all of you that know him) flew from California to see me and meet Liam. Such a great moment to see Liam meet his Uncle Tang for the first time.

The best physicians in the nation all got together today to review all of Liam's previous exams. They decided to get a cardiac MRI for further evaluation. We all know that Liam has a very complex congenital heart defect. So many options for them to consider. They want to go over everything in detail before making any plans. We all believe in miracles. Liam is that for sure!!

Prayer chain.

I need all my warriors to pray. Cardiac MRI scheduled for this morning. To evaluate Liam's pulmonary veins and to check his right ventricle to see if he is a candidate for a future surgery. This would be to make him a double ventricle heart, making blood easier to push through. Please pray to our Lord and Savior that this boy still has a chance. God, thank you for these physicians. They have hopefully found another chance for my little angel. To survive. Please let them find a possibility! We believe in hope and miracles!!!!!

Day 52

Liam had a abdominal series today to see if he had any obstruction or malrotation of his intestines. The results were normal. They are to restart his feeds tomorrow. He also had his 2-d echo today. Unfortunately the results were not what we had hoped for. His pulmonary vein pressure is back up. Devastating news for all of us. This is not something we want to hear. All the physicians are planning to review to see what they all agree on for Liam's future. We were told that there might not be much to do that would be beneficial to Liam. Our hearts are breaking.
Chris and I both got to hold him for a long time today. It's the best feeling in the world to get to hold my little miracle and to get to feel his warmth. He rested his tiny little hand on my heart and I just sat there and cried. Thank you God for that moment. I couldn't imagine loving him anymore then what I do.

Thank you to all the people in the PCTU. They help me cope with all these emotions and I am truly blessed to have met all of them. They kept me talking today and even laughing. I believe Liam has won them all over too!

Day 51

Thank you Lord for all that you have given us. Everyday is a blessing with Liam. His strength and his will to fight is amazing. Liam had an episode last night where he dropped his heart rate and his oxygen along with his vent settings. Lets just say he was super pissed and clamped down. He pulled out of it pretty quickly thanks to the team that was on. Thank you Nurse Molly!! He wants to keep things interesting that's for sure.
Chest X-ray a little hazier then yesterday's, hopefully it's just because they are making his lungs work harder with the vent settings being low. His goal today was pulmonary work. Nurse Jenna did some percussion on his chest hoping to improve his lungs in that manner and she also laid him in the prone position to see if that helps as well. Lets just say he was a crappy patty with both of those ideas but he does settle out pretty easy and he was able to be proned for 2 hours earlier and 4 hours later. Lets just hope it helped and his chest X-ray looks better tomorrow.
His feeds are holding steady at 5cc and hour but they want to advance him up to see if he tolerates. That is a concern as well. You never think of eating to be an issue right? The last few times he has gone up on his feeds his belly gets hard and distended, and they have to quit. hopefully we just have to get his bowels moving.
Liam is going to get his weekly 2-d echo tomorrow to check his pulmonary veins. Pray they are still at a good gradient. This always causes huge anxiety for us. With everything else going on we seemed to forget that Liam needs his pulmonary veins to be good ALWAYS!
The plan is to see how he does in the next week. In regards to his feeds, his surgeon said early next week he should have an abdominal series to check his intestines. Hetertaxy patients experience complications with them being twisted or having a kink in them. Hopefully that's not Liam's case. He has had his fair share of complications.

Thank you for all the food that you have been sending us. Chris and i have been eating so good. Special thank you to Amy Haug Boccieri for organizing all if it. Xoxo Also to the staff at St. Elizabeth maternal fetal medicine for thinking of us and sending us too! All of you are amazing.

His nurse today and yesterday was Jenna and we love her along with respiratory Kelly. I have so much fun with them. I get to have girl conversations and it is great to talk about other things beside medicine I have said it before but the people that work at this hospital are wonderful. I enjoy all of them.
Prayers always. Xoxo

Day 50

Liam had another solid day today. Chest tube drainage still slowed, chest X-ray no real significant changes but we will take it. They decreased his morphine so he is interacting with us more, which we love. Just a little wean made on his vent. Baby steps. He laid in his mommy's arms for four hours today. The only reason why I gave him up was because I had to go to the restroom. The physician came in and said that he is making improvements. We still do not know Liam's future but he is going in the right direction. Not sure if he can wean off the vent, not sure if he is a candidate for his future surgeries etc. but we will discuss that when we get there. LIVE IN THE NOW.....
Liam is one famous guy, so many visitors in and out of our room from the staff. We love all of them. I love talking to them and getting to know them. Nurse/Aunt Molly was his nurse this evening. She let me give him a bath, that's always so much fun. He hates it but I love it.
Xoxoxo love you all...

7 weeks

Don't stop Believing....
As all of you know things for Liam have not been good. Tomorrow was our meeting to discuss Liam's future.
Well......our SUPERHERO does it again. He told us he is not done yet. His chest tube drainage has significantly slowed, his chest x-ray was 1,000 times better, they weaned a great deal on his vent, decreased his morphine. Today was his day. The physician came into his room and said we are going to cancel his meeting and see how he does over the next few weeks. Liam is telling all of us to continue to fight!!! Thank you Lord for answering our prayers, thank you thank you!!!!!!!!! Hope has been restored to our lives. He has been given another chance by our Lord Savior. How can we not believe in prayer or miracles. With God anything is possible. A wise man told me today stay " Cautiously Optimistic" We are still on this crazy roller coaster called the PCTU but all I can say is GAME ON, the Sugar's are not done yet. He is an amazing little boy. Stole the hearts of so many. I believe in the power of prayer always and forever.

Today was a great day. We had fun with our nurses, ate wonderful food (we haven't eaten this good in a long time.-- thank you to all of you for sending us food). Chris gave him a bath, he got held, he got a hot dog halloween costume that we had a lot of fun with and we read some books. Thank you for this Day, one that has restored our hearts. Hopefully, tomorrow we are still going in the right direction. Day by day, moment by moment. I am so proud of my little boy.