Mid July Jonathan’s doctor called me and said that his labs had come back that morning showing that Jonathan was anemic and needed a blood transfusion. He had been anemic in June and had a blood transfusion then, everything went just fine and there were no complications. When I heard the news this time I was fine and gave the okay to give Jonathan blood. That night when I went to visit him he was in the process of getting put back on oxygen. They said they didn’t know why but his oxygen levels were dropping and he wasn’t recovering by himself. The nurse he had that night was not my favorite and lacked tact when delivering the news. Then she just left me there, I don’t know where she went. I was overcome with emotion. I was looking forward to a nice long snuggle but instead there he was regressing and looking puffy from the extra blood. I couldn’t handle to be there very long that night. I cried in the car for about 30 minutes before I drove home.
The next day they told me that his heart had been racing at times and they didn’t know why. Right before I got to the hospital for my visit they weren’t able to get his heart rate to come down so they pushed some medicine on him that stopped his heart entirely and then restarted it. He was stable when I got there and the nurse delivered the news, a much nicer nurse this time (one of my favorites). The doctor called the NICU while I was there to check on Jonathan. He asked to speak to me. He told me that in his 20+ year career as a NICU doctor he had never seen a baby as old as Jonathan was all of a sudden start having heart problems. He said they had done echo’s and EKG’s and everything came back normal. They were in the process of talking to a pediatric cardiologist at Primary’s Children’s Hospital to see if they could get to the bottom of what was happening. After we finished our conversation I just stared at my sweet babe, I was able to hold him that night. We snuggled and my heart just hurt for him. I couldn’t contain my emotions. I lost it right there in the NICU. Uncontrollable sobs and tears running down my face. Jonathan’s sweet nurse came right over and gave me a hug. She told me everything was going to be okay. She said that Jonathan was meant to be here and that he was strong. She assured me that we were going to figure out what was happening. I appreciated the support and the kind words. When I got home I went straight to bed and cried myself to sleep that night.
The next day the doctor called and said that the pediatric cardiologist at Primary’s had seen baby’s hearts do what Jonathan’s was doing. He recommended that Jonathan be put on some medicine for the remainder of his hospital stay and to have a follow up appointment at Primary’s once he is discharged. My mind was full of questions. I knew for now that Jonathan was okay. He was on medicine that was helping his heart. However, I had no idea how things were going to be going forward. My mind was racing, worrying if he is going to have heart problems for the rest of his life. Would he be able to play sports? Would I have to worry about him exerting himself? So much worry. In the midst of all this worry I also felt peace. I knew that Heavenly Father was at the helm. The peace I felt told me that everything would be okay even if things didn’t work out the way I wanted them to. If Jonathan ended up having heart problems we would tackle that trial with faith. Until we knew more I was thankful for the reassurance that I had been receiving from the spirit. I still had my moments. I never knew I could produce so MANY tears!!! After the tears dried the peace came. Every time. I knew that Jonathan was Heavenly Father’s child too. He knew what was in store for Jonathan and I needed to trust in that, and accept whatever it may be. If it was going to be another trial I knew my Savior would be there for me just as He had been there for me so far. It was a very hard and trying week. The Sunday following his blood transfusion Russ invited my dad and our bishop to come help him give Jonathan a blessing. The spirit was incredibly strong. Russ was the mouthpiece of a beautiful blessing that offered comfort, understanding, and peace. I had an increased testimony of the power of priesthood blessings and the help and guidance that they can provide. I had an added assurance that everything would be okay, Jonathan would be fine, and that I would be able to take my son home.
The week following Jonathan’s blood transfusion his tummy started getting inflated again. This issue with his stomach was pretty much ongoing the whole time he was in the NICU. He was one the most gentle formula on the market, even more gentle than the first formula he was put on. Every time labs were run to check for infections they came back saying everything was normal. The doctors wanted to make sure they weren’t missing anything so they had Jonathan get an enema to make sure there wasn’t anything wrong with his bowels. There were talks of him needing to have a feeding tube a lot longer if they found something and learned that he was going to have digestive issues. They said in some cases nothing could be done. Again, came the worry and the stress. What kind of life was my little boy going to have? Would he have constant heart issues? Would he need a feeding tube for his life? Was he going to be deaf? (he had failed his first hearing test and they were waiting for him to get bigger to try again) Once again I was just overcome with so many emotions and gut wrenching worry. The enema came back clean, thankfully. They were hesitant to put him back on his formula so in went the IV with the TPN and Lipids. Jonathan went back into his incubator bed so he wouldn’t have to work so hard to keep himself warm. His oxygen levels were spotty so they put him back on that as well. I remember visiting him and not being able to hold him since he wasn’t doing very well. I just looked at him and all of the tubes and wires connected to him and I couldn’t help but notice that he was back on everything he had been on when he was first born. I felt like we had lost all of the progress we had made over the last two months. I left the NICU that night feeling so low and defeated.
Later that same week Jonathan seemed to bounce right back to where he had been before his blood transfusion. His tummy went back to normal so they took out the IV. He started breathing just fine so they took him off the oxygen. And we were able to resume bottle feeding. They re-tested his hearing and he passed. Jonathan was doing so well! He was finishing more and more of his bottle at each feeding. There were even a few times that he finished the whole bottle. The nurses and doctors told us that his last hurdle would be to get better at eating. As soon as he was finishing his bottles at each feeding he could come home. We were so excited! We started making preparations at home. We purchased all the things we would need, I set up his bed, hung up his clothes, and started dreaming of snuggling him whenever I wanted. The NICU really is a roller coaster ride for your emotions. It’s amazing how quickly you can go from worry and stress to excitement.
A few more really good days went by. Then we were told that Jonathan was anemic again. The doctor didn’t want to put him through another transfusion so he wanted to give Jonathan a round of hormone shots that would help his blood count levels. I was so glad that there was another alternative to the transfusion. Then the doctor told me that the first round of shots needed to last three weeks. I was heartbroken. Another dip in the NICU emotional roller coaster. I was ready to bring him home. I was so sure that we were close to busting out of there. Hearing that Jonathan had to stay put for another three weeks seemed to knock the last bit of strength out of me. When I hung up the phone I sat on the floor and cried. I cried until one of my girls found me and asked what was wrong.
The whole time Jonathan was in the NICU I felt like a horrible mother. I felt like I couldn’t do anything for my son while I was with him. When I was home I was constantly worried about him and my thoughts were always on him and how he was doing. I felt like my girls were getting half of me, if that. I didn’t feel like I had any energy to mother them the way they needed. All I wanted to do was cry or sleep. I didn’t want them to see me crying all of the time. I knew that it was okay if they saw me some of the time. I wanted them to know that when you are going through hard things that it’s okay to cry. However, I didn’t want them to worry about me. A few times when they would find me crying they would cry too and be scared for Jonathan. I didn’t want them to be scared or worried about mommy so I would have to find times and places to get my emotions out. I’ve lost count how many times I cried in the bathroom or in my closet during that summer. Most of the time I would use the drive home from the NICU to get my emotions out. I knew once I got home three little pairs of hands would be reaching for mine and three little mouths would be wanting to tell me what happened while I was gone. I wanted to be able to give them what they needed. When I got home I would listen to their stories or play their games when I really wanted to go upstairs and cry myself to sleep.