He's been tapped!

I can't begin to describe what this roller coaster feels like. It is up and down all week but when you step back and think about it, he's been fighting for almost 7 weeks. His up's and down's have been the story of our lives and as we have fought to only go day by day it's amazing to think how the time has passed. We have had some amazing experiences with our little boy. The experience that I had, as his father, to give him a name. To watch him grow, to feel his hand squeeze ours, to change diapers, to see him overcome odds week after week, to see Lynette hold him, to see him open his eyes for the first time one by one and then both together, to see him improve. We have truly been blessed with a little boy who is special. He has such a strong spirit and when times seem at their worst, he rises to the occasion and overcomes them.

Our testimonies have grown so much. I know we say that a lot but they have. They have grown in faith, in Jesus Christ, in the Atonement, in the Plan of Salvation, in Temples, in inspiration. Our testimonies are so personal and I am so grateful that the Lord has sought to strengthen ours.

William this week has shown some progress followed by some serious struggles. We began the week just the same way we ended last week, worrying about the kidneys and the urine output. They began to work with him and there came a day, Tuesday, that they thought they may have to tap him to relieve the pressure on his stomach. They did not proceed but we had the chance to sit down with the Neonatologist and discuss with him our options. He proceeded to discuss with us the different outcomes to our situation and even told us what he thought would happen. He described to us that we need to consider our child and his quality of life as we keep him alive. It was difficult to listen to as he spoke and I felt myself becoming very angry with him, and just said a quick prayer to speak calmly the thoughts I had. I told him we know the odds, we know that he has a huge mountain to climb, and told him that we would not quit trying as long as William was fighting. We told him that William would be the one to decide when enough was enough. I can only describe the feeling I had as that of a missionary when he feels so strongly the message to the point of confounding the doubters. We asked for another opinion about the possibility of tapping into him and other options for helping William remove the fluid from his body. He did seem bothered by this but we don't care. This is our son and we want to know we did everything possible for him if he doesn't make it. After this discussion, we began to see some improvement in his kidneys. He began to urinate with a little more regularity but not in large quantities. Then on Friday and Saturday he all but stopped and he began to swell up even more. His stomach was pushing 32 cm (2.54 cm in one inch) and his face and body were so swollen. This morning we received a phone call from the Neonatologist on duty. She explained that all the swelling was pushing up on his lungs and as they increased the ventilator settings it was doing no good. His lungs were unable to expand all the way. They told us that we needed to do something immediately to remove the pressure. She told me that they would tap into his stomach and begin to drain the excess fluid so the lungs could expand and profuse his body and organs. We said they could move forward and knowing we couldn't be there went to Stake Conference. We did, however, ask them to call us when it was done. They called us in and we were able to see his stomach so much smaller. He is supposed to be around 800 grams (460 grams in a pound). He was over 3 pounds and after tapping into his stomach, he has lost almost 400 grams of fluid. It was incredible, but the most amazing and wonderful part is that he began to urinate very well. Whether it was the pressure on his kidneys or what, all we know is we are extremely grateful for this change. We did find out that this wasn't just a simple procedure to remove fluid but a very critical procedure to make sure he still has a balance of fluid in his body. He is having problems keeping fluid in his blood vessels. They call this capillary leakage. If the fluid is not thick enough it will seep into his tissue and to his skin. When he was at his biggest, his vessels were very full and his heart had enough volume to pump and keep circulation. When the excess fluid is removed, this changes and the volume in the vessels changes and if it gets too low the heart will work even harder until it eventually wears itself out. We were shocked to hear this because they didn't tell us this when they called this morning. But we got to experience it first hand this afternoon. After returning to the hospital from conference we began to notice his blood pressure decreasing. He is usually in the 30's to 50's and began to drop into the 20's. I then noticed his heart rate drop below 100 but it came right back up. This is something we have seen multiple times and isn't too much of a concern. They do try and keep him between 120 - 180 bpm. We kept watch of his blood pressure and saw it drop in the teens. With this change we started to see his heart rate fluctuate more. The nurse saw the problem and worked very frantically to get more volume in his blood. His heart rate then dropped to about 65 bpm and I pulled Lynette away from his bedside and allowed the nurses to get him going again. It was so surreal. They got him stabilized but we then were very aware of the concern that they had mentioned. He is being watched very carefully and many are doing the best they can. We are so grateful for those doctors and nurses there who were able to help him recover and stabilize him. It was truly an answer to prayers.

I don't mean to scare you with this post or make it seem that he won't make it. We don't know. But we will be faithful and whatever the Lord see's fit He will do. It's much harder than I thought to fully hand over the reigns. He knows the path and how to get us there. He's been there before. We just need to trust Him. I always thought this meant believing in him but it quite literally means to trust that He knows what is best. Our Father in Heaven has a plan that some day we will understand in detail. As of right now, we must live day to day enjoying what is ours to enjoy. He blesses us in so many ways that I am starting to see more of them daily. The small things. The improved kidney function, the stable day, Lynette and I sharing our thoughts about him, talking with doctors, and friends about him, hearing how he has given faith and hope to many around him, and how Lynette and I have been considered a strength to others as well. Even though there is so much good, I still find myself reluctant to give him everything. That is our challenge, to fully trust in the Lord and let him lead us to an eternal home. What a bright light at the end of the tunnel. He lives, we know it!