Caleb died last night at 11:05.
We got a call from a surgeon at about 5:30 last night. She said Caleb had taken a sudden turn for the worse. His stomach was swollen, red, and hot to the touch. His stomach was so swollen that at one point the swelling had cut off the circulation to his legs. He was starting to have a lot of his episodes. She said they needed to do a surgery to his intestines and try to save any non-damaged parts. She said he had all the signs of having NEC. She said that if all of the intestines are damaged they will not be able to do anything and you can't live without your intestines.
We got to the hospital around 7:00. The surgeon wanted to talk to us as soon as we got there. They took us into a private conference room. We knew it wasn't good. With all of the stuff we have gone through at Egleston, this is the first time they took us to a private conference room.
The surgeon came in and said he didn't have any good news. He had been doing surgeries for 20+ years and this was the most air he had even seen in a baby. The infection some how causes air to fill up in the intestines. The air in Caleb's intestines had moved on to his liver and spleen. His intestines were completely infected. He basically had gangrene in his intestines from his stomach to his rectum. The surgeon said there was nothing they could do. There weren't any healthy parts left of his intestines. He gave us a few choices of what to do. All of the choices ended with Caleb passing away soon - probably within the night.
We called our parents and told them to come see Caleb. Cary and I went to Caleb's room to see him. He didn't look like himself. His color was off. He was cold, so he had blankets all over him. There were a million nurses in the room hooking him up to medicines to try to keep him alive until we were able to spend time with him and decide what to do.
After the grandparents got there and everyone was able to see him and spend time with him, we decided it was time to let him go. Caleb's nurse called the chaplain and Caleb was baptized. We held him for a little more. Then, we told them to take him off the respirator and turn off all of his medicines. We felt like he was already gone. He was on so many medicines. Cary held him while they unhooked him. Then Cary's mom held him (for the first time). Then I held him. The doctor came back in a few minutes later to check for his heartbeat. She looked at us and said "He is already gone." At 11:05 pm Caleb died.
Everything happened very fast. The last time he had NEC the nurses told me stories of how fast NEC usually happens. One nurse told me she was taking care of a baby who was doing great. She went back to check on him 1 hour later and he was very sick. They took him down to surgery and NEC had already killed all of his intestines. We were lucky with the first round of NEC. It moved very slowly and the surgeons where able to remove all of it. Last night, the surgeon said sometimes NEC comes back and when it does come back, it is a lot worse. That's what happened to Caleb.
Thank you for all of your thoughts and prayers along the way. Caleb had a great 6 1/2 months.
We don't know what the funeral arrangements will be. That's something we've never thought about. We will let you know when we figure it out.
Please no calls or visits (except family). This is a very hard time.