Liam's big day

We are sitting here in the nicu the day after surgery. Yesterday was a long day. His surgery was scheduled for 12:30. They came at 12:25 to pick him up. We walked down to the pre-op area and waited. They came about an hour later to take him back. His tiny little body looked even tinier on the big bed. He is a big boy but he is still a little baby. We headed to the waiting room. We had a nurse come in every so often to give is an update. Every time the door opened we would look at the door to see if it was her. She didn't have any detailed information, just told us each time that everything was going okay. The surgery didn't start until 2:48. We eagerly awaited the end. The preliminary tests from Friday showed that it was focal which was just a small area producing too much. The dr and surgeon both thought it looked focal. A radiologist had looked at the pet scan and thought it looked difuse which is spead out. We knew there was a chance it could go either way, but we got our hopes up when we were told by the dr that he still thought it was focal. He had also told us that when the scan shows focal it comes back focal. That nurse pulled us into a different room and said dr adzick was just finishing up and he would be in to talk to us. This was about 5:00. He came in about 15 minutes later. I was nervous, had butterflies, and was very anxious. He came in and sat down and told us it went well but that it was difuse and he had to remove 90% of the pancreas. Talk about taking the wind out of our sails. He said he was disppponted as he could tell that we were as well. They had taken biopsies of each part of the pancreas and saw that they were filled with the cells producing too much insulin. We were surprised, disappointed, and relieved all at once. With difuse disease there are three outcomes. One, he will be totally fine. Two he will be treated with medication for I don't know how long. Three he will become type 1 diabetic sometime down the road. We won't know exactly what it will all turn out to be for a bit. As the dr said as part of his parting words "it is what it is" which is so true. We now at least know and can continue on. We headed to the nicu waiting room until it was time to see him. We were able to finally go back after what seemed like an eternity since we has seen him. We walked up to his crib and that is when I lost it. I had just witnessed the saddest thing in my life. My tiny little boy laying there with a breathing tube down his throat, a tube in his nose, a tube coming directly out of his tummy, and the steri strip on top of his incision. I burried my head and sobbed for a few moments. He lay there completely helpless. His mouth was wide open and you could tell that he was crying but no noise was coming out because of the ventilator down his throat. He was in a lot of pain. My heart was broken. I am glad my dear husband was by my side to strengthen me as he has every step of the way. We just sat by his side and held his little hand. He would just grab on and not let go. It's amazing to know that he knows us and was clinging to us for comfort. A couple hours went by and they were able to pull out the ventilator and switch over to oxygen. With all the medication in him it makes it harder to breathe so it is all pre-cautionary. He has all sorts of tubes and fluids going into him. He had an epidural in him which was helping the pain. They took that out this morning because the dressing was coming off so they didn't want to risk infection. His oxygen came off as well. He moans and makes sad little raspy cries while just laying there. It is sad. He is on morphine so hopefully that will help him. He also has no food either. He is on the sugar water but it will be nice for him to get fed through his picc line.
We are so so so blessed to be here. All the drs and everyone caring for him are so great. They know what they are doing which is so comforting. Danny and I have felt and known from the start that all will be well. We are so blessed to have the Holy Ghost to comfort us. Yesterday I went in to pump while we were waiting to see him in the nicu. I started praying and felt so comforted. I know that Heavenly Father is aware of us and what we are going through. This has been the hardest thing we have ever experienced. There are those frustrating days where I just want it to be over but I am always blessed to know that all will be well. We are hoping for a quick week. I am not able to nurse him while he is in here until his body has shown that it's ready. I am hopeful it will be sooner than later.
And again we are so thankful for the prayers and fasting. We will be here for 3 more weeks at the most. We are hopeful that it will be quick and short. We are thankful for our family who is helping out with the girls.