Cooper in the Hospital

Well, I haven't blogged in about 6 months. Part of that is because life has been busy. Another part is due to this post. I haven't wanted to "re-live" the hospital stay. I didn't want to look at pictures from our time there. Thinking back to that time is difficult. It was one of the scariest moments for Dayton and I as parents. As I think back to that time, all the emotions and feelings come rushing back. Tears come to my eyes and my throat chokes up-still. But, I feel like it is time I write about our experience. It was so scary and there really aren't words to even describe what it was like, but there were so many tender mercies and feelings of love that I want to record and I want Cooper to remember. (Sigh) So here it goes.

Hunter's birthday was August 31. It was his special day to celebrate him, but it was also the day Cooper first showed signs of being sick. Hunter had chosen to go to "Mapleton" beach. We took a lunch and all went toghether-Dayton had taken the day off to be with Hunter and the family. It was Cooper's usual nap time so it wasn't alarming that he fell asleep in Dayton's arms while the boys played in the sand. We got home and put him down for a nap. He slept all afternoon. I thought to myself, "he must be coming down with something." We continued to celebrate with Hunter. He requested hamburgers and a special Oreo cake. My parents along with Uncle Isaac and Uncle Preston came over for dinner and cake. We were getting the cake out when Cooper woke up. I got him out of his crib and he just wanted to cuddle and snuggle- also very normal for Cooper. He is such a loving cuddly baby. He seemed tired so I again thought he must be getting sick. He looked a little pale so I thought it's probably the flu. I held him in my arms the rest of the evening. I mentioned his "paleness" to my mom, but she didn't think it was too bad. Cooper was just in a diaper and I noticed a couple of very small red specks on his stomach. I also pointed this out to everyone.. was this a start of a rash? It was so small- you could barely see the few specks and they were so far apart that we weren't alarmed. Little did I know those few specks would be what would send us to Primary Children's hospital in less than 48 hours.

Everyone left that evening and I continued to hold Cooper close. I put him down for bed. He seemed so tired. In the night, I woke up to Cooper throwing up. He had thrown up a little in his crib. So it was the flu I thought. The next morning, he didn't have much of an appetite- just wanted to nurse. He kept the milk down fine and didn't throw up again. He didn't have a fever or diarrhea and didn't seem to be in any pain- just tired with little appetite. I put him down for a nap and he slept most of the day. When he woke up from his nap, he seemed even more pale and just lethargic. I wondered if this was something more or just a weird flu virus. I took pictures of him and sent them to my two older brothers- both doctors. They replied that it was probably a virus, but if he still looked pale tomorrow, to take him in to make sure.

Sunday morning. Cooper was still pale and looked even a little yellow. I was worried and texted my friend's husband- he is a pediatrician at my clinic. He asked me a few questions and none of my answers were alarming. He said it was probably just a virus but we should probably take him to an insta care just to safe. At this point, I was getting a little worried and felt a little sick to my stomach. I sent Dayton and the boys to church and decided for my own peace of mind, I needed to take Cooper in. We arrived at the insta care in Springville. He was just in a diaper with a blanket. The receptionist took one look at him and told me we could start on paper work, but she was going to get a nurse because she didn't think they would see him and we might need to go to a hospital. At that point, two nurses and a doctor came out. They looked at Cooper in my arms. The nurse mentioned the tiny specs on his back and turned to the doctor. They gave each other and look and then said, "We won't be able to seem him here. You need to get to Primary Children's hospital in Salt Lake. It's not an emergency, but you should start driving there as soon as possible." By this point, I was in tears. What was wrong with my baby? What weren't they telling me? I immediately stepped out and called Dayton. "Dayton, they want us to go to Primary Children's. I have a horrible feeling about this. I feel sick." He replied, "It's going to be okay. When does anyone ever have a good feeling about these things?" I told him to grab the boys and meet me at the house. I told him we should pack a bag of toiletries and a change of clothes because I had a feeling we would be there overnight. We frantically pulled a few things together and loaded the kids in the car and headed to Salt Lake. I kept thinking, "what was it about those specks on his back that they immediately sent me away?" I did what any parent does, and turned to google. Bad idea. Cancer in the blood. Cancer. Cancer. Cancer. Cancer was listed in every top search result. I quickly put away the phone and brushed it off. He might have something wrong with his kidney or liver or something, but he didn't have cancer. I should just wait until we get to the hospital and see what we are dealing with. Besides, anyone can google symptoms and can think they're dying. Cancer was not in my mind AT ALL.

On the drive, I texted my parents, who were in church. Call me immediately I said. Almost instantly my mom called me. I explained our situation. She was just with him on Friday night and was a little surprised to hear they wanted us to go to Primary Children's She met us off the freeway and took Hunter and Carter. We then drove to Primarys. Dayton parked the car while I walked in with Cooper. He did not look good at this point. He seemed so tired and had zero energy- which if you know Cooper, he is normally such an energetic, happy, social little guy. There was someone else at the front desk, so I got in line.  A nurse saw me, and immediately pulled me to the side and checked Cooper's vitals. She said a doctor would be in shortly and would grab some blood to run a few tests. Dayton met us in a room and we waited for results to come in. The doctors wanted to know what the people at insta care had told us. They hadn't really said much- which by the look of it seemed to relieve the doctors. I knew it was serious by the way everyone was acting, but honestly I really didn't know what was going on. I felt awful- like I had done something- or not done something- to make my child this ill. 

While we waited for results, an ER doctor came in to talk to us. He asked us what we knew or what we thought was going on. He then proceeded to tell us that they weren't sure yet, but that everyone here was thinking Leukemia. My heart just sank and I could barely talk. He left after that and said he would come back in a few minutes with blood results. Dayton and I turned to each other and the tears started coming. Dayton said, "well, lets pray it's not that." I couldn't believe cancer was really on the table at this point. My dad was leaving to Bear Lake with Isaac and his friends. I texted my mom saying that leukemia was a very real possibility. They immediately canceled the trip. Issac volunteered to watch Hunter and Carter and my parents came to the hospital. Christian and Charlotte also came. The ER doctor came in again and explained that his white cell counts were high and his hemoglobin was at a low of 4- one of the lowest they had ever seen. He honestly was lucky to be alive at this point and was in desperate need of a blood transfusion to bring his hemoglobin up. His platelets were also lower than they would have liked- which was causing the small red specs on his skin. The ER doctor told us it was leukemia. He explained we were in for a long haul of hospital stays and treatment. He said, "This is going to be a long 3 year road, you are going to need all the support you can." He left Dayton and I alone with Cooper and we both held him and cried. I felt absolutely sick to my stomach. Awful thoughts were running through my head. How could may baby have cancer? He wasn't even 1 years old yet. There was no way he could survive this. Cooper is seriously the happiest baby I've ever met. He has a special light about him. Is this why he got sick? Is he already too perfect and could leave this world? Fear and complete hopelessness consumed me. I reminded myself I need to stay strong. Leukemia does have good odds compared to other cancers. I tried to stay positive- especially on the outside, but on the inside, I believed Cooper wasn't going to survive this. 

My family arrived and we wanted to give Cooper a blessing. Dayton gave the blessing. My brother Christian and my Dad also laid their hands on his head. I felt so grateful for the priesthood-God's power- at that moment. I felt this was the one thing we could do to help Cooper. It was a beautiful, emotional blessing. There aren't words to even describe that experience, but it is one I will always remember. During the blessing, I felt an overwhelming peace come over me. I felt like a giant blanket was wrapped around my soldiers. Everything was going to be okay. God was aware of me and he was aware of Cooper. I honestly didn't know how things would turn out, but I knew it would alright and that we could get through this- whatever the outcome would be. The fear I felt before, was overcome by faith. I started to remember all of the tender mercies up to that point. First, we took Cooper in when we did. If we hadn't, he might not be here. Second, I had my two older brothers and my friend's husband that helped give advice over the weekend that led to me bringing him in. My older brother Brad just happened to be an oncologist/hematologist finishing his fellow with Harvard. He knew EXACTLY what we were going through and was the biggest advocator for Cooper. He later told me that when I texted him Saturday, he immediately had the thought that it was Leukemia, but didn't want to scare me. He was afraid that was what he thought because of his profession. He told me that morning he woke up and just felt sick and had a really bad feeling about Cooper and couldn't get it off his mind. He told his wife this and they were worried about him and were glad to hear I was taking him in. I know those thoughts were coming from Heavenly Father. He wanted to make sure Cooper was going to the hospital that day. That was not a coincidence. I felt immense love from God. I felt overwhelmed by the love and support from my family and knew they would be there to help us in every way during this journey. Afterwards, Dayton and I both received blessings. I received one from my father, which was powerful and echoed the same feelings and thoughts I had during Cooper's blessing from Dayton. Christian gave Dayton a blessing- and I was so grateful for that. The moment the doctors relayed the news, Dayton's shoulders looked like they were holding the world. Dayton has always been an amazing husband and great supporter. He has always taken care of our family financially and I knew that finances were on the front of his mind. We don't have great insurance since he is a small business owner. He was worried about what they would cover and how long that would last. He was worried about missing work. Luckily, his parter and all his employees at work told him they would take care of everything and for him to be at the hospital as much as possible. That was a relief. The blessing helped ease some of that worry as Christian declared he would still be able to provide and support his family and that work would be okay.

After the blessings, were were moved to the Cancer unit. I wrapped Cooper in a blanket and carried him to his room. I walked past countless families dealing with the same nightmare we were. I saw too many sick children with bald heads laying in their beds. I started to cry. I then made a rule- never look in anyone's room. It was too painful to see how sick everyone was when I knew that would be Cooper. It sounds silly, but the thought of Cooper loosing his beautiful, thick, blonde hair was too much. 

Once in the room, we were told Cooper would be getting a blood transfusion as soon as they could find a match. He ended up needing two transfusions that night because he was so incredibly low. He was hooked up to a million different monitors. I'm pretty sure I didn't put him down the entire time. I couldn't let him go. I know it probably sounds dramatic but I just held him and thought, is this going be the last time I hold him? It's amazing what your thoughts can do. I couldn't believe how fast things had changed. I wanted to enjoy and remember every minute. I had started to wean off nursing- Cooper was turning 1 in just a few weeks, but I knew if he was going to start chemo- I wanted to nurse the entire time. It was something I could do that I knew would help him. I was nursing Cooper as much as he would like and drinking so much water so I could hopefully get my milk supply back up. Luckily, he did want to nurse even despite his zero appetite for anything else. 

The oncology team came in and met us and my family. Michael and Katie also came and were so sweet to bring us food and blankets to make our stay more comfortable. We had no idea how long we would be at the hospital. They were so thoughtful and generous and again I was overcome with love and support from my family. When the oncologist talked to us, they explained they weren't sure if Cooper had leukemia yet. They wanted to go ahead with the blood cell transfusions that night and then hopefully if they were a little more stable tomorrow they would do a bone marrow. They got even more blood and were sending it off to different labs to look at his specific cells to see if it really was leukemia and what type is was. They were hopeful that after Monday, we would have more answers to what we were dealing with. "Wait, so he doesn't have cancer?" I asked. They explained that it was very likely and that's what they thought at the time, but they were also going to test for different things and see what the tests came back as. I'm still not sure why that ER doctor told us it was Leukemia. I was angry that he did. However, I still was pretty sure it was cancer at this point and was trying not to get my hopes up.

Cooper got two transfusions that night and seemed to perk up a little after that. He still looked pretty awful, but he didn't look so lifeless. I kept telling the nurses to watch out for Cooper because he really is extremely charming and has the best smile. I said as soon as he starts feeling better, he will win you all over.

Eventually my family left for the night. We continued to monitor Cooper. Dayton and I slept in Cooper's room. I slept on the small "couch" and Dayton slept on some cushions on the floor. This was our routine for the next two weeks and it was miserable! I felt like they kept coming in all the time to grab more blood and more samples. It was absolutely horrible to have to watch Cooper continuously being poked with needles. 

I could tell Dayton and I were both nervous and scared, but we couldn't go there. We couldn't talk to each other about our awful worries and thoughts because we couldn't say them out loud. We knew we needed to be strong and positive for each other. (Although after things looked better, we confessed to each other the awful things we felt and thought). We said lots of prayers together. I was so grateful for Dayton and that we could be with each other the entire time with Cooper. It made it more bearable to have him there. I felt close to him and I knew this would make us stronger together.

Monday came. Cooper had his bone marrow and Dayton's parents came to the hospital to see Cooper. They were upset and emotional. It was a hard thing for everyone to grasp. Cooper was a champ and did really well with the bone marrow (he still has scares from the two needle pokes). One of the tests came back and looked relatively normal. It was hard to be excited when there was still such strong possibility and so many unknowns. 

Getting blood transfusions. Just heartbreaking.

By this time, word had spread to extended family and friends. I received countless texts and calls and it was so comforting. I again, was so incredibly overwhelmed with love and support. I knew we had a lot of support. I could feel everyone's prayers for our family. 

Over the next few days, Cooper received more transfusions. His platelets were also dropping and he was getting more petechiae- the small red specks over his body. He now had them on his back, stomach, arms, neck, nose, and legs. He was getting little bruises on his body as well. The tests continued to come back negative- which was supposed to be a relief, but honestly the unknown was still just as bad. What if it was some rare form of leukemia? How long is it going to take to figure out what is wrong? How is Cooper going to get any better if we still don't know what is causing this? My brother Brad was constantly calling to check on us and Cooper. He wanted to know every lab result and talked with the oncology team. I'm sure they were annoyed with him, but I was grateful for his additional knowledge and insights. I also appreciated Brad being able to talk to me as a brother and not a doctor. Sometimes I felt like the doctors weren't always telling us what was really going on. It was nice to call him and tell him to give it to me straight. My brother Michael just happened to be assigned to Primary Children's hospital for the next few weeks. He started his rotation the day after Cooper was admitted. Coincidence? No. Just another tender mercy from our Heavenly Father, letting me know he was so very aware of me and my family. Michael was working on the floor below us and was able to come up and visit between patients. I've never been one who likes to be alone and that was definitely true then. If I was alone, my thoughts would spiral and I would think awful worse case scenarios. I couldn't go there. I appreciated the distractions and again felt so much support and love. It was comforting to know so many people had our back. 

                                                           Cooper after his bone marrow. 

This was the first time Cooper had perked up. He was sining and showing off to his nurse Sydney.

It's funny to look back at these videos. At the time we thought he was being so cute and finally showing some personality. We saw any improvement as HUGE. They really aren't great videos though. haha.

The doctors were stumped at this point. They had no idea what was going on. Thursday it was confirmed that Cooper didn't have Leukemia. Again, it was a relief, but honestly I didn't feel that. The unknown was awful. The oncology team consulted other specialties, trying to make sense of Cooper's condition. A kidney specialist came and saw Cooper. One possibility they were considering was HUS (Hemolytic Uremic Syndrome) specifically atypical HUS because Cooper had functioning, normal kidneys. The kidney specialist was very skeptical. The very definition of HUS is kidney failure. How could Cooper have HUS when he has functioning kidneys? When he brought it up to his team, he said they almost laughed at the idea. His symptoms just didn't fit. He felt they were pulling at strings, but didn't have any other good ideas. He wanted to take some urine samples to see what was going on. They came back and showed Cooper had quite a bit of protein in his urine- it looked like his kidneys were involved, they just didn't know how. He decided to take a stool sample, just to see what other information that might give them. We got the results back and an E coli bateria (O157:H7) was found in his stool. This proved he did indeed have HUS- just the typical form of HUS and not atypical. Typical HUS is a condition that affects the blood and blood vessels. It destroys platelets, results in a low red blood cell count and kidney failure because of damage in the small blood vessels in the kidney. Luckily, Cooper's kidney was fine and he didn't need dialysis like most cases. That was another huge blessing. We now identified what was causing Cooper's illness and it was something that would go away, unlike atypical HUS which seemed more serious and would be a condition Cooper would deal with for life. We had absolutely no idea where he got E coli- he didn't even have teeth and wasn't eating very many solids. We hadn't been around livestock or swam in any lakes or ponds- all very common sources. He could have gotten it form anywhere. This is frightening as a parent. I've never considered myself to be an over concerned, worried parent. But, it's hard not to have a little anxiety after having witnessed your son get deathly ill over something possibly as simple was someone not washing their hands. Cooper also hadn't had any diarrhea or bloody stool up to this point. He had an extremely odd presentation of HUS, but it was treatable with blood transfusions. With time, he platelets would slowly increase. We would continue to take urine and blood samples to monitor his kidney. We were transferred from the cancer unit to an infant unit. 

 

Ever since Cooper was born, he was nick named "Super Cooper," by Hunter. In the cancer unit, he was given a super hero cape. We felt it was very fitting for little Coops. He truly is Super Cooper.

More transfusions. . . 

It took another week or so of being in the infant unit before Cooper was stable enough to go home. The big waiting game was frustrating. It was lonely and boring. There really wasn't much they could do for Cooper besides more transfusions and wait for his body to start to get better. The days were the same and they were long. Cooper wasn't allowed to leave his room. We were getting pretty stir crazy. I was grateful for the McDonald room in the hospital that I could leave to when Cooper was napping. I would go there and read and look out the wall of windows over the city. It was my sanctuary during our stay. Dayton stayed the entire time the first week. Then once things were more stable, he worked in SLC and attended meetings during the day. He would come back in the evenings to be with me and Cooper and to stay the night with us. It was so good to have him with me- another blessing.

Primary Children's Hospital is such an amazing place. They have everything! Poor Cooper couldn't leave his room, so they did everything they could to make him comfortable. They got a big mat down for him so he could crawl and move around. I was stir crazy, but this kid had been in a crib or someone's arms for over a week! They brought him new toys everyday and he loved it. It was so good to seem him finally eat a bit and play around!

More transfusions, but this time we got to let Cooper play on the mat instead of being held in my arms for 4 hours.

Now Cooper was definitely showing more of his true colors. It was so fun!

My mom continued to watch Hunter and Carter. She took them back to Mapleton off and on. The both had their first days of school- that I had to miss. I also missed Carter's speech evaluations, Hunter's choir audition and first rehearsal and Hunter's first several soccer games of the season. I was heartbroken, but I needed to be with Cooper. Since I was nursing him, it was even more important that I was there to feed him every couple of hours since he still wasn't eating much else. It was hard to be away from them but luckily my mom brought them up to visit us. They quiet enjoyed the hospital- especially Carter. He liked the play room for patients siblings, the McDonald room in the hospital that provided food and snacks for families, and the Spiderman statue. To this day, he still refers to the hospital as the "Spiderman hospital." We had lots of friends come visit, Dayton's parents took our dogs back to Roosevelt with them, our neighbors and family took care of our garden and yard, and several people brought us meals. My friend Ellen, Lindsay, and Christie even provided me with freezer meals and snacks that my mom would bring to the hospital. Because of my special dietary needs, there wasn't much food available at the hospital for me. Those meals were gratefully appreciated. Again, so so so much love and support. 

 We got this crane and construction set for Hunter and Carter as a "sorry we are in the hospital constantly" kind of gift. Hahah. They loved it!

 First Day of School pictures! My mom was so nice to take a picture of them and drive them to Mapleton so they could keep a normal schedule throughout the chaos. 

 Playing at the hospital play room.

Making Slime

Playing with Play-dough  

The "Spiderman Hospital 

Carter the "doctor." The boys each got a doctor kit and a little doll with an IV so they could "practice" cleaning the iv and taking care of their babies. 

The doctors were right and with time his blood levels stabilized and his platelets were at a safe enough level for us to be released. Cooper did have a bowel movement that day with blood- which scared me and I was worried we wouldn't be able to go home. I was soooo done with the hospital at that point. I hadn't left in almost two weeks and I didn't know if I could last another minute. Luckily,  they assured us that everything looked fine in his labs and on Coopers 1st birthday we were released from the hospital!!! It was the best birthday present!!! The nurses were so cute with Cooper and brought him birthday gifts and decorated his room. I was right- Cooper won everyone over with this smiles and giggles once his red blood cells increased. Everyone was impressed with Cooper's smile, energy, social awareness, and charm. 

Coming home from the hospital, I was so nervous! Where were the monitors? He has to sleep alone in is own crib? The idea terrified me. What if he got sick? How would I know if something was wrong? Immediately, a felt the spirit tell me, "Cooper will be okay. Have faith. You have the gift of the Holy Ghost. As long as you are living worthily, the spirit will tell you when to be worried, when something is wrong. This is a gift you have as a mother. Right now, it is with Cooper and his physical needs, but as your children grow, their needs may be more spiritual or emotional. Stay close to the spirit and he will guide you and inspire you when your children are in danger or when they need you." That has given me faith and comfort. I may still panic for just a minute when I look at Cooper and think he looks a little more pale than normal, but those moments decrease with time. It's not always easy to chose faith over fear, but with God we can. It took Cooper a few months to look and act like his normal self but since about Thanksgiving his has seemed so much better. We continued to monitor his blood and urine. In December, we got great news. For the first time his protein in his urine was completely gone! His blood levels continued to increase since leaving the hospital and have been stable ever since. I'm grateful for everyone and all they did for our family. I'm grateful for the love, prayers, and support our family received at this time. 

Cooper is a light. He has been the perfect baby and just what I needed. He radiates a special light that draws everyone towards him. I've seen this at the grocery store, church, lines in Disneyland, at the gym daycare, and pretty much everywhere we go. You can't help but fall in love with him. That smile. That twinkle in his eyes. The way he scrunches his nose when he laughs. He is pure joy. I feel so fortunate to be his mother. To this day, I look at pictures of Cooper and get an overwhelmed feeling of joy and gratitude that he gets to be in my life. I have had it witnessed to me- several times- that Cooper is here and alive for a reason. He was spared because he has a special purpose only he can fulfill. Part of that is being a light to others. His light is contagious. His special light brings others to Christ. 

I had so many tender mercies in the hospital. It was the scariest weeks of my life, but I hadn't felt closer to God and my family in a long time. I felt his presence everyday. I know there are angels that walk that hospital and watch over those sweet little kiddos. I know God is real. I know he lives. He is aware of me and my trials- however big or small. He knows me. He loves me. God is good.