Saying Goodbye to Noah....
The doctors in the NICU were having a very hard time figuring out what exactly was going on with Noah since the beginning. He would have a few stable days, and then have a bad day with low blood pressure that had to be corrected with multiple medications. This cycle happened for several weeks. A dye test was done on 3/11 to try to figure out where the fluid was moving, and it came back with no answers. Docs decided to let his belly fill up with fluid to see what would happen. They tested the fluid again, and knew it was not urine or lymphatic fluid. Still didn't answer what it was. When his blood pressure would drop, his urine output would go down... indicating his kidney's weren't getting enough blood to function properly. So they would increase meds and replacement fluids... and he would be stable for a few days. And then repeat.
On March 16th, I finally got to hold my sweet boy in my arms. My heart was so full. Ben got to hold him the next day, and had him for 6 hour straight! The doctors and nurses thought it might be a record :) He also received his first tube feed with my milk that day, on 3/17. Sadly, the milk started sitting in his stomach and not digesting after the first day, so they had to stop feeds.
I posted this on 3/19- Didn't get to hold Noah today because his blood pressure was acting up again... So we held hands instead😃
He got a good amount of extra fluid today to try to help his blood pressure, so the docs are going to be doing an EKG soon to make sure his heart isn't working too hard with the extra fluid. There was more fluid leaking from the omphaloce site yesterday and today, so the surgeons came by and added some more glue. It seems to be helping. His feeds were stopped last night when there was 16ml of residual milk sitting in his stomach undigested... So he got a suppository and had his first little poopy! Not sure when the feeds will start again... Hopefully soon. Overall, an ok day. Praying for more progress!
On Friday 3/20, I received the worst news of my life. Ben had gone home, and was on his way back down. I headed to Noah's room first thing in the morning. The nurse had told me that the fluid leak was picking up. Dr. G came in and sat down next to me. I could tell from his face that he didn't have good news for me. He started telling me that there wasn't anything more they could do for Noah. I just couldn't believe it. I kept asking questions.... what about this? what about that? what changed? He basically said that the fluid leak was not stopping and they didn't know how to stop it. He told me they could try surgery again, but it would be risky. So I asked to talk to one of the surgeons. One came in soon after... and as she sat down, her eyes started filling with tears. And so did mine. She told me that since there was so much fluid in his abdomen, it would be difficult to go in and fix the patch that was leaking. She also told me that this wouldn't fix the problem... which was the continual accumulation of fluid that wasn't stopping. She was crying, and telling me how sorry she was that they couldn't help. At this point, I was a wreck. I called Ben... barely able to talk. He said he would be there soon. Not long after, Ben's mom Amy came with the kids. It was wonderful to see them, but I was still a mess. Ben arrived not long after. My parents were on their way to Florida, but canceled their trip and came. Most of our family was together.
We were able to let all of the Grandparents hold Noah, which was great. Pastor Chris and his wife, Doree, came down to visit us as well. We did a little Dedication ceremony which was really powerful, knowing that Noah was going to be with the Lord soon. There was also a photographer in the room that night taking photos of our family (they turned out great, such a treasure to have). After all of the family had their time, it was just Ben and I in the room. I was holding Noah... and he was wide awake and staring at us. We were crying out to God... asking him to tell us what to do. It just seemed so wrong to let him go.... So we didn't. We decided that we wanted a couple more days... to spend with him and to see if anything would change. Ben left to go get some air, and I was holding Noah in the room, just the two of us. One of the nurse practitioners came in and sat down next to me, and we talked for at least a half hour. She told me that she could see the light of Jesus shining through our family, and that we had made a major impact on many of the staff members there. She said that her Bible Study group had been praying for him, and that really touched my heart. She said, "Some people live to be 100 and don't have the same impact that little Noah has had in his short time with us." Wow. I'll never, ever forget that.
On Saturday, the weekend doctors came on. The attending physician said that his best guess to the fluid issue was that it was coming from the perineum layer in the abdomen that has a lot of capilaries, but he didn't know what would cause them to leak fluid. He did tons of research with the other doctors, and they only found 5 cases with babies with Beckwith-Wiedemann and Prune Belly... and of those, none had the fluid issue. He said that we could try lasix to see if that would do anything... it may have bought more time to see if the fluid leak would stop on it's own. The kidney specialist told us that lasix could damage his kidneys... but what option did we have? So they started them, and it didn't really do anything. His oxygen needs had been increasing as well, and one of his lungs collapsed. This was probably due to the tube moving down a little bit, so the respiratory therapist adjusted it. He was very heavily relying on the respirator though. The surgeon came in who did Noah's first surgery and sat down with us. She said that she could go in again and fix the patch... but again, it wouldn't fix the big problem. Plus, any surgery is risky. So, we spent the day enjoying every precious moment with Noah. On Sunday, we did the same thing. Took turns holding him, reading to him, and telling him how much we love him.
On Monday 3/23, our regular doctors were back on. It was nice to see them again... since they were the main ones taking care of Noah. They sat with us, and cried with us. On this day, we knew it was time to let Noah go home to Jesus. It was time for him to receive his full healing. They explained everything to us very thoroughly, and answered any questions we had. I was holding Noah, and Ben was right close with us. They slowly took his meds off, one at a time, and backed off on his vent settings. They removed the breathing tube, and our precious boy went from my arms to Jesus's arms. My heart was shattered into a million pieces.
As we left the hospital a few hours later, I felt like I was just walking away from him. I was a complete mess the whole way from his room to the car. Sobbing.... I felt like I was just leaving my baby forever.... even though I knew he was in the most glorious place, and that I would see him again.
The ONLY thing that has pulled me through this is the incredible, steadfast love of Jesus. He has given me more strength than I knew was possible. When I felt like my whole world was crashing down, he was right there holding me up the whole time. His Word promises me over and over that I will see Noah again, as long as I have Jesus in my heart. His Word also tells us about Heaven and how perfect it is. Noah experiences no pain, no sorrow, no tears... in a place more beautiful than we could ever imagine. He has changed me. I now can share my faith with others so much easier. It is really easy for me to talk about Noah and where he is. Before, I would sometimes feel like a hypocrite who wasn't all that worthy when I was trying to share the gospel. Sure, I'm still a hypocrite at times, but who isn't? That's why we need a savior. I also have a more eternal perspective on life. I've always believed that our lives here on Earth are short in the scope of eternity. Things on this Earth don't matter all that much... what matters here is how we love God and love People. After that, eternity is a pretty long time.
Noah has taught me a lot about God's will. While I prayed and begged God to heal Noah here on Earth, I always had a hard time adding, "if it's in your will." I wanted God's will to match mine. But obviously that didn't happen... which pointed me straight to Jesus praying before he was crucified. In Luke 22, Jesus prays, "Father, if you are willing, remove this cup from me. Nevertheless, not my will, but yours, be done." The next verse says- "And there appeared an angel from Heaven, strengthening him." God knew what had to be done. Jesus had to die on the cross, in order to save you and me from our sins, so that we may have eternal life in Heaven. This HAD to happen. It was God's will. We don't always understand why things happen to us... but when we fully rely on him, he will give us what we need. God DID give us 27 days with Noah before taking him to Heaven, and I am so thankful for that.
I know so many people who have grieved with us through all of this, and many have been deeply impacted. Our friends and family who stepped up to help us and love us have been beyond incredible. That's God's love pouring out through his people. My prayer is that everyone can draw closer to God through Noah's life. Noah is WITH God! Right now. Rejoicing, praising, and fully living. I greatly look forward to the day when I too will be doing those things. For now, God has me right here... and he has a plan for me and every one. I strongly feel that God wants to use Noah to bring more people to him. Life is short, friends. Live for the one who loves us more than we could ever imagine or deserve.
Thank you, Noah.... you've changed me forever. One glorious day, we will be together again <3
