I think that I will forever remember the way I felt 10 days ago. I was sitting in one of our favorite places to eat with my oldest daughter and a good friend. School was called off because of snow and my friend and I had watched the kids sled and play hard all day so we snuck away to grab a bite to eat. But all day I had a sick feeling. I was worried about my baby boy. 2 days before he had stopped breathing. Enough that I had to breathe into his nose/mouth 2 times before he gasped for air. And then he was fine. The next day he seemed fine also. But this particular day he seemed different. His color seemed different. And I had a feeling that something was terribly wrong. But I couldn't figure out what. It was just a feeling. But I remember sitting there thinking I should be happy, I should be enjoying myself. Instead I had a horrible feeling of dread.
Thayne got home from work that night and I told him I was very concerned. We had dinner and everyone was hanging out in our room watching tv. I was thinking it would be nice to get to bed early since I hadn't slept much over the last few days. I had been feeding Nate but he really didn't seem to want to eat. For a second he stopped breathing again. I tickled his feet and told him not to scare me and he started moving around and fussing a bit, and I tried again to feed him. This time he completely stopped breathing. I told Thayne to grab him. I never see Thayne scared, but that day, I saw him terrified. It's not good when he loses it too... The kids were scared and crying and I was ready to start crying also. Thayne finally gave him mouth to mouth while Jace annointed him for a Priesthood blessing, Thayne then finished the blessing and we grabbed a blanket and ran. We knew we could make it to the hospital faster than help could get to us. By the time we got to the ER, he looked fine again. They took us right back though and the nurse wanted his weight and temp. While I was undressing him she said, in that tone people get when they think they know more than you do, "So, your first baby huh?" I knew what she meant. She thought I was a first time mom who freaked out about something that was nothing. I was so upset that I didn't even care to comment but said, "15". She said, "Your FIRST, right?" I said, "No, my 15th!" My sister was standing there and said, "I know, people always freak out when they hear that." The nurse said, "No really... how many?" Ummm... FIFTEEN! She takes us to a room and tells us that a doctor would be there soon. I asked her if I could feed Nathaniel. She said sure and that if he did it again to stick my head out the door and tell her. I won't go into how I felt about that. He ate for about a minute and then stopped breathing again. Thayne grabbed him and went running out there door with my sister and me following right behind. Of course upon seeing him that way the nurse immediately took us seriously. She and Thayne worked to get him breathing again. The doctor walked in, and told us that he would call Salt Lake. (I know we will see a very large bill for his prompt and expert attention) And that was the extent of his care that night! From here on out they only managed to torture my tiny son. They could not get the iv in on the first, second or even third try. When they finally got that in, they wanted to get blood. They poked, and poked until finally Thayne picked him up and told them no more! And we waited for the life flight team to fly from Salt Lake to pick us up. I am so grateful for friends that waited with us. They just kept telling me it would be alright. I didn't know how it would ever be alright again. Thoughts go through your mind wondering if he would even make the trip to Salt Lake. I wondered how I would tell the other kids. We had left them scared and wondering what was going on. I thought the worst for a while. We finally got to the hospital about 1:30am. And spent 3 1/2 more hours in the ER waiting. Doctors would come in, ask the same questions, look at him, ask more questions and then leave. Finally at 5am we got to a room. Thayne was able to sleep on the fold out chair. I held onto Nate for dear life. I couldn't sleep because I didn't know if he would breathe his last breath while I was asleep. I was terrified of what they would find out. They asked us about his heart murmur. We had never heard anything about a murmur. Was that the problem? Nobody knew.
Tests were scheduled throughout the day. First an ultrasound on his heart. Then an upper GI, then a swallow test. They also told us there would be brain scans and spinal taps and every blood test known to mankind. So I waited and worried and prayed for the best. They came in after the upper GI and swallow study to tell us that they found out he had significant reflux. I felt like jumping up and down with relief. That sounded simple enough. I asked them what they would do so I could feed him. They told me I didn't understand, feeding him would kill him. In my mind I thought that not feeding him wouldn't do much for his health either, but what did I know? And then they explained that there was a lot of inflamation and damage in his throat and they would be putting an NJ tube through his nose, bypassing his stomach and going into his lower intestine. I did not like the thought at all, but it would keep him alive and that meant everything to me. But while they were trying to get the reflux under control, he constantly stopped breathing. Apparently we never do anything half way, whether it is the size of our family, or how bad the reflux is! He doesn't just reflux. He aspirates on anything that went down his throat. And he did it silently. Instead of coughing or choking, he just stopped breathing. Did I mention that several times we went to buy him a bed, and everytime we were going to get it something happened? One time we actually had the bed, but for some reason though it was payday, and though the money had been in our account that morning, we went to check out and there was no money in the bank! He was never put down at night. He slept on my chest because I always had a sick feeling about putting him in a bed alone. The doctor told us that had we ever let him sleep alone he would have stopped breathing and we would have lost him. Add that to my list of miracles surrounding his birth!
The next several days were a nightmare. We watched the monitors day and night. Many times his oxygen dropped and we had to remind him to breathe by shaking him softly, tickling his feet and giving him oxygen. In the middle of all of this, they had to suction the mucus/saliva from his nose and mouth. The doctors rushed in and decided he had RSV because it was the season for it. 3 tests later still didn't convince them. They were determined to say he had some viral infection and that was why he needed oxygen. The nurses and I all felt it was from the mucus because he couldn't swallow his own saliva. They wanted us to stay, and stay, and wait and see. I was torn, knowing he needed me here, and knowing that the kids needed me home. But I have to say that the kids were amazing. They took on running the house, taking care of each other and did an amazing job. I have to say that I have the most amazing children ever!!!
Today they finally sent us home. It was so nice to walk into my home and hug and kiss my kids. We came home with the feeding tube in and oxygen. But we are home! I wonder, like I have so often in the past several days, what the new 'normal' will be for our family. Tonight they delivered oxygen tanks and I learned how to mix up my breastmilk and put it in a bag that would feed my baby 24 hours a day. And I now have to plan how we will go anywhere, how much time I have between his medications, how much time between running out of food and having to pump around the clock to make sure he has plenty of milk. This is now my new normal. Teaching the kids that this tube needs to be watched so it isn't pulled out. Wondering how long it will take for Nate's throat to heal. Will he need surgery? What happens when he starts getting bigger, and curious about the tube in his nose? I think, and worry, and wonder. But mostly I am just grateful that he is alive. I am grateful that I get to be his mom, and I am grateful to learn something else.... to see other parents struggling with their little ones, and knowing that some aren't as 'lucky' as we were. As if luck had anything to do with it. I believe there is a plan for all of our lives. What is scary are the moments when you realize that no matter what you want or hope for, you really aren't in control and what will be will be. I am grateful for the peace that came everytime I didn't think I could go forward one more minute. I am grateful that my faith in family and friends was strengthened, knowing that there were so many there to help us through at our lowest times. I saw the wonder, the love, the gratitude in the eyes of my children as they saw their baby brother again. There is a love, a bond between siblings that will always amaze me. These kids would move heaven and earth for each other. It takes the hard times to make us appreciate the good. I am not sure that I would ever want to relive the past 10 days in anyway. But these are the moments that change us, and hopefully make us more grateful for all that we have. Hopefully it teaches us to have greater compassion and empathy for others when they struggle and be more willing to help each other along the way. I am amazed at those that were there for us. I met two nurses that haven't been able to have their own children, but who scooped up my baby and loved him, cuddled him, told him how handsome he is and made a difference in the lives of everyone they came in contract with. There is joy when you give of yourself. The one nurse told me that while she wanted children desperately, and was doing all she could to have her own, she could never begrudge others who had them so easily, because she knows how real the desire is. She took her challenge and became strong because of it. She said she never would have become a nurse if it weren't for her infertility and told me how she found joy and fulfillment in doing this. She made a difference. We can all take our hard times and find a way to turn it around and make a difference. There are moments that change you, and hopefully make you stronger. I don't know that I am stronger yet, but I do know that I will try harder to be more positive and find gratitude when things are going well.
There are moments that change us... I hope that I learn whatever it is I am supposed to learn and quickly move through this, but I hope I always remember what I learned!