On Friday (April 17) night my mom noticed that Paxton (who was 10 days old) was breathing a little faster than normal. We timed it and he definitely had over 60 breaths a minute. The book the hospital had given me about taking care of baby said to call the doc. It was late Friday night and nothing but the ER was open. He didn't have any other symptoms. He was eating well and was just his happy little self. We looked up a bunch of stuff and prayed about it and felt like we were okay for that night and that we would keep monitoring it the next morning and see how he was doing. Saturday morning he was still breathing fast.We called the nurse hotline and she said as long as he didn't have any other symptoms we were okay. However, as the day progressed we noticed that he was eating less and less. He was super tired and would NOT stay awake to eat. He had no interest in it. So we started to get a little worried. We called the on call physician for our doctor and he said to take him in. So at around 6:00 pm we took him to Urgent care. Right before we took him in we counted his breaths and got over 100 a minute. When we got to urgent care and told the nurse, he said probably not because his little heart couldn't handle it. he counted and got over 80. Then the doc came in and said he looked fine, we could take him to the ER if we wanted additional tests done (they couldn't do all of them at the Urgent Care) we asked the doc if he would go if it was his kid and he said probably not. So we were talking to the nurse and thinking about it and reading an article on this condition that babies often get (I can't think of the name) where they just breathe fast and it will go away on it's own. A few minutes later the doctor came back and said that he had been thinking about it and he would actually take his kid in and his recommendation was for us to go to the ER. That was enough for us. So we went home and a good friend came over and he and Wes gave Paxton a blessing. The blessing said that Paxton would fully recover, the doctors would be able to get him the help he needs and that he would come home and continue to grow as he should. That blessing is really what carried me through the next few days. So we get to the ER and they start doing all their tests. They put stuff everywhere they could on the poor kid. He had rectal temperatures taken, a catheter put in and they had to get blood...They couldn't get an IV in his hands or feet, they even used a special light that would help them see the veins but it didn't work... so they put one in his little head. That was sad. I don't usually get nauseous but the sight of them sticking a needle in my baby's head was not a pleasant one. The tests and x-rays came back and the diagnosis was: Pneumonia. So they started him on an antibiotic and breathing treatment. His lungs sounded great so that was good news. We got admitted to the hospital at about 10:30 ish on Saturday night. Sunday morning he had been eating better and everything was looking really positive. His IV in his head started leaking but since he was eating well and peeing and pooping and looked good they took the IV out and didn't replace it. During the day we noticed he started acting sick. that was a new thing. He hadn't looked or acted sick (except for fast breathing and not eating) this whole time. But now he was looking sick and he would just lay there and moan. It was really sad. He kept getting worse and worse throughout the day, he would just lay in his little bassinet and moan, it completely broke my heart. That evening when he once again was not interested in eating, we asked if they could put another IV in. The nurse came in and looked at him and noticed his lips looked a little blue, they had on and off throughout the day but he had a little oxygen mask that we would just blow at his face and that would help, he was having a hard time getting the oxygen into his blood. So that's when all the insanity started. They started doing more tests... they couldn't take him to the nursery because the pneumonia could be contagious so they took him to an infant isolation room where they called specialists at the St George hospital NICU. They had a webcam so the St George Dr was also looking at Paxton. This was the absolute worst part of the whole experience. They were trying so hard to get an IV in, I think 5 people tried. They poked his head and his arms and his legs and his hands and his feet.... everywhere. and could NOT get an IV in. They finally called someone from the ER who came down and was able to get an IV in his head.But they used the lights again and ultimately a little ultrasound machine so they could see the veins and the needle under the skin to try to get it in. During all this his breathing was terrible. He was retracting like crazy. Every breath you could just see his entire rib cage moving and his chest just indented. It was so so awful, I can't even describe how I was feeling during this. I had to keep reminding myself what his blessing had said. He would be okay and get the help he needed. But when you're watching your child struggle for every breath and work so hard for it...it's awful. I just walked up and down the hall (there were about 12 people in the room so we couldn't be in there) shaking my hands and crying. This was also the first time I ever saw my wonderful husband cry. That made it even worse. But as we tried to comfort each other and remind each other that everything was going to be okay, we definitely were able to give each other strength. I sure love that man of mine :-) So at this point they had decided that they were going to transfer us via life flight. They just weren't sure whether we were going to Dixie or to Primarys. They called in the x-ray tech and the poor man had to wait about an hour before he could do the x-ray because they were trying to get the dang IV in. Once the x-ray finally came through someone noticed that Paxton's heart looked slightly enlarged. So then they called in the Echo cardiogram technician. She was not super happy about being woken up at 1 in the morning when she had to work the next day... oh well. So she came in and at first there were two possible diagnoses. I don't remember what one of them was...but the other was a coarctation of the aorta. Very shortly after she determined that it was infact a coarctation. This means that a section of his aorta was narrowed, like an hourglass. So he had to work super hard to pump blood through it. So why did it take so long for it to show up? Babies, in the womb, have an extra valve in their heart called a PDA. Since they don't breathe on their own they don't need blood to go to the lungs, so it skips that part. After they are born the PDA closes. so when his closed and blood was only going through the aorta, he started having a hard time. So since it was a heart problem there was no more option of where we were going. Primary Children's it would be. It took a while to get the plane here (yes, plane. If we went to Dixie it would have been a helicopter but since Salt Lake is so far away from St George (where they come from ) a helicopter can't carry enough fuel so they use a plane). It took so long because the normal life flight crew that is always there waiting is for adults. So for infants they have a special crew, this crew is used less often so to keep up their skills they work in the hospital in St George as well. So when they get called they have to have to call people in to cover them at the hospital before they leave and then they can go to the airport and get going. So they were finally on their way. In the meantime, they called in a pharmacist to mix a medicine that would help to open up his aorta and hopefully the PDA. A common side effect of this medicine is apnea so they also called a Dr. in to intubate Paxton (shove a breathing tube down his throat). Life flight arrived and took over. They actually ended up intubating him. They also gave him another IV. In his foot, these people are good. They wanted an x-ray to make sure the breathing tube was in right, so they called the same x-ray tech back in. Poor guy, he had already made it back home. Luckily this time he didn't have to wait. They have cool portable x-ray machines so Paxton didn't have to be moved for any of his x-rays. The little "fish tank" they would transport Paxton in was in the way so the arm of the x-ray machine had to go way up and over it to get the picture. They were happy. One of the EMT's with the ambulance was so sweet, she was crying with us and offered to bring something up to SLC if we needed. During all this Wes and I had been trying to make our own plans for getting up here. Since it was a plane there was a greater chance that we would both be able to fly up. Neither one of us would have done very well being away from each other or Paxton for any amount of time, let alone 4 hours. But we had travel plans just incase only one of us was able to go. Trevor would take Wes to Spanish Fork and then Lynn would bring him the rest of the way. Thankfully, the pilot was totally okay with both of us going. So 2ish hours after life flight got there we were in an ambulance on the way to the airport. Paxton was stable and his breathing looking better, thanks to the tube. There are a limited number of seats in the plane so... I GOT TO RIDE IN THE COCKPIT! That was pretty awesome. Wes was in the back with the life flight crew and Paxton. he said they didn't have to do much on the plane because they did everything before so he had a good time with them. They were an awesome crew, we were joking with them. By this point when Paxton was stable we were in a pretty good place emotionally. Still a stressful situation, who wants their kid to be life flighted? no one. So in the cockpit the pilot showed me lots of cool stuff. This was a super fancy plane. not very big, it's width was probably less than a man's arm span. The pilot sitting in his seat could reach the stuff on the very right of the plane. The panel on the front was a million dollars. And it could do some really cool things. He pressurized the plane when we went up but then before we began descending he started changing it again so it was the pressure of ground level in Salt Lake. So when we descended there was no ear popping or anything. He also told the plane that he wanted to cross a specific point at a specific altitude so the plane automatically started a 3% descend so that we would...and we did cross that point at exactly 14,000 feet. It was way cool. He also took a different route into SLC so that I would have a better view of the city. It was an awesome distraction from why we were even going there. So we landed and got loaded into an ambulance. We drove through Salt Lake at about 3 AM. I have never seen it so deserted. there was hardly any traffic. Nevertheless, he turned on the siren every time there was a red light. a lot of the lights in SLC have sensors that can turn the lights green for an ambulance (he said something about strobes...but I'm really not sure how it works) but at the ones that didn't have sensors he would just flip it on. He told me a story about a driver who flipped a U and collided with a highway patrol car. It was a new ambulance and the first day on the road for the patrol car. Oops. She didn't turn her lights on when she did it, so it was her fault. So now anytime they do something against the law they make sure they turn on their lights. So we got to the hospital and wheel Paxton in. And NO ONE KNEW WHERE WE WERE GOING!! We went up to the third floor and asked where the CICU (Cardio intensive care unit, pronounced sick-u...but Wesley thinks it should be "kick-u" because Cardio makes a K sound, not a S sound...) was and they said fourth floor. So we go up. and wheel around for a while and can't find it, we have to take some diversions because there is construction going on in the hospital. Finally we find some nurses and ask where it is and they weren't sure...so someone called and found out... second floor! So we go back down and finally make it. When we got there there were tons of doctors working on him and doing tests: EKG, x-ray, echo, blood work, you name it. and finally things calmed down. My parents and Wes's dad had actually beat us to the hospital so we went to find them. We talked to them for a minute and finally the exhaustion began to set in. Paxton was stable, nothing else would happen tonight. They were just going to monitor him. The hope was that he would do well enough that they wouldn't have to do surgery until Wednesday or Thursday, giving him time to build up strength before it happened. At this point we didn't know if it would be open heart surgery or a thorocomety (between the ribs). So the lovely nurses found a sleep room for us (I'll explain more about those in a minute) and we were able to go to bed from about 6 to 9 AM.
Primary Children's is really an amazing facility. The nurses we had were always incredible and the doctors were amazing. They were really good about answering all the questions we had (and there were a lot). We were also able to stay at the hospital the entire time we were there. We stayed in 3 places. 1) The parent sleep rooms located in the CICU waiting room. These rooms were super tiny and boasted 1 twin bed. It's a good thing Wesley and I like to cuddle! We would get assigned a room at about 4:30 PM and then sleep in it and then in the morning we would take all of our stuff out of it and tell the nurse we wanted to be put on the list again. In Paxton's CICU room there was a cupboard that we were able to put all of our stuff in so that was nice. We didn't have to pack it around with us all the time. We got to the hospital with virtually nothing. Basically our clothes and Wesley's backpack. But by the time we left (thanks to amazing family) we had quite a bit of stuff. 2) The Ronald McDonald Sleep Room. Most people know about the Ronald McDonald house. It is basically a hotel where parents can stay for extended periods of time while their child is in the hospital. About a year ago they created the Ronald McDonald Family Room in the hospital. There is a big family room, a kitchen with lots of food (plus people sign up on a meal calendar to bring dinner), showers, laundry facilities, and 4 sleep rooms. These sleep rooms are the same system. You get assigned, sleep, and vacate the next morning. Since there are only 4 of these rooms for the whole hospital you have to be referred by your social worker to get one. They try to put you in them the night before/after surgery. So we were in this room on Wednesday night. It had a queen memory foam bed. It was so comfy :-) 3) Once Paxton was moved out of the CICU, we just stayed in his room. You could pull the back/seat off of the couch and it turned into a doubleish size mattress you could throw on the floor. We were just so grateful to be able to stay close to Paxton the whole time we were at the hospital. There were many options available to us, thanks to our amazing family and friends. But we figured if the only thing we need is a place to sleep and they have those here... why go anywhere else?
So Monday morning began the waiting period. They didn't have to do emergency surgery so it was still looking good for Wednesday or Thursday. We stayed with Paxton, visited with family and I pumped. Since I obviously couldn't nurse Paxton I pumped and pumped and pumped...every 2 hours. for over a week. It was miserable. But I'm glad I could do it because it made me definitely more comfortable and now I am nursing Paxton again. Plus, once he started eating (through a tube) he was getting my milk instead of formula. So even though I complain about pumping a lot...it was really a blessing. My parents went out and bought us essentials we would need to get through the week. My sister and sister in law brought some other things and some clothes....it was AWESOME to change my clothes! And my brother in law got a box together for us down in Cedar City and got it mailed up. Super cool thing that happened... we walked into Paxton's room on Monday morning and met the nurse. He was sporting some University of Wyoming garb so I got really excited. Turns out he is from Green River and knows my Aunt, Uncle and cousin Layne! Such a small world. It's amazing the little tender mercies that just make you so happy. (We actually ran into him 2 weeks later when we went back for our checkup. In the cafeteria! It was way cool) And so Monday passed. Tuesday we were informed that his surgery would be Wednesday afternoon. And Tuesday also just passed. There we watched and waited and lived for the few minutes when Paxton would open his little eyes and look at us. Tuesday night we decided that I would need my pump when we got out of the CICU (they had pump rooms with commercial grade pumps that I was using but once Paxton was in a room I would rather just pump there than have to go somewhere else). So we called our lovely EMT friend Laramie and she met up with Trevor to get a suitcase of things for us (like our OWN clothes! and my pump) to bring up when she came on Wednesday morning. The sweetest part of Tuesday was when I got to hold my baby for the first time in what felt like FOREVER!! It took 3 people to move him. The nurse, the respiratory therapist, and Wesley (to manage the cords) to get my baby to me. I had to be super careful and make sure he didn't wiggle too much so his breathing tube wouldn't come out. You don't always think about holding your baby as being something special, but this was one of the best moments of my life. It was so sad to see my little boy with so many tubes and wires coming out of him, but seriously I was so happy to have him in my arms. Wednesday morning we got up at about 6 to go spend some time with Paxton before his surgery. They had told us afternoon, but on Tuesday night they told us it was actually going to be at 8 in the morning! So we got there at 6 and both of us got to hold Paxton. It was a very precious moment to see Wesley holding his son this morning. They allowed us to have more people than we were supposed to at his bed so that we could give him a blessing. Wesley's dad and grandpa Paul were there and helped Wes. It was a beautiful blessing. It said that the surgery would go exactly as expected and that Paxton would have angels attending his bedside (I have no doubt my grandma and grandpa Webb (who Paxton was named after) were among those at his bedside that morning when I couldn't be. It said that he would recover quickly and he would come home and have the life of a normal little boy. What better blessing could a mother ask for as she sends her infant son off for a heart surgery?! The following 4 hours were the four longest hours of my life. They wheeled him down the hall, leaving me with only one of Paxton's stuffed dogs to hold. They had given us a pager with which they would send us text message updates on how the surgery was going. We got the first one shortly after 9. The anesthesiologist had done his thing and the actual surgery had started about 5 minutes previous. And we waited. The next one came right when I was ready to go pump. The surgery was going really well, would be finished in about 45 minutes. Right as I was finishing pumping (NOT 45 minutes later) we got the final text message. The surgery was finished, it had gone well and the surgeon wanted to meet with us. I felt like a kid in church as we tried not to sprint down the hallway to the OR waiting room. A couple minutes later the surgeon walked in. He told us the surgery had gone exactly as expected (exact wording from the blessing!) Paxton was in recovery and we would be able to see him in about an hour. They had been able to do a thorocotemy (between the ribs) which, they informed us, was the most painful place to have a surgery. Still...it definitely beats open heart surgery! At this point, Laramie got to Salt Lake and so we went out to meet her to get our stuff. She was actually on her way to VERNAL which meant she had gone at least an hour out of her way to bring us that stuff. What an amazing example of Christlike love and service. We are so grateful to her. Finally we got to see our beautiful Paxton. That was probably the best sight I have ever seen, despite all the wires and tubes. He had a big new one...the chest tube to drain out the fluid around his heart from the surgery. So the rest of the day passed much like the others...visiting family, watching Paxton, pumping... one really cool thing... They were trying to keep his blood pressure super low (so it wouldn't pop the stitches in his aorta). But every time Wes and I would walk into the room and start talking his blood pressure would go up, up up!! And when we left it would go down, down, down. He recognized our voices and was fighting to wake up and see his mommy and daddy! We are so glad our little boy knows and loves us! But since they were trying to keep it down, we tried to stay away a little more and keep our voices down when we were in with him.
Thursday, April 23. Our first wedding anniversary. We realized we are getting into a couple of habits we would really rather break. Last year on our honeymoon we were informed that our house wasn't going to close when we thought it would...so we were homeless. And this year we were floating from room to room....homeless (at least in SLC). Last year we spent $100,000 on our house. This year...our medical bills are higher than that. So goal for next anniversary: Don't spend 100K and don't be homeless! Despite being in the hospital with Paxton, it was a very nice anniversary. The best present we ever could have got was that Paxton got his breathing tube out!! yay! He was officially breathing on his own. He hadn't done that since Sunday! But the ultimate best part was hearing my little guy cry. That sounds weird I know, usually when they cry you do everything you can to get them to stop. But when you haven't heard that sound in so long because there was a tube down his throat (it goes between the vocal cords, so no noise at all) it is the best sound you could ever imagine. We even got to go on a date! We went to Bruges and got delicious waffles and frites (fries) and then went to Temple Square. We were sitting in the back of the tabernacle listening to the choir practice and cuddling and one of the cute old man ushers came up to us and said "if you two aren't newly weds...you should be." We smiled and said thanks and that it was our first anniversary. Then he smiled and said "well then, just pretend that this is the back row of the theater" haha. It was awesome. And then we went back to our sweet little boy. It really was a great anniversary.
Friday was an amazing day! When we got to the CICU in the morning, Paxton and his little friend in the next bed (a day younger than Pax) both had signs on them saying "I just fell asleep, please don't wake me. Love, Paxton" (of course the other baby had his name on it.) Apparently they had a competition all night to see who could scream the loudest. That game continued throughout the day. Poor nurses, especially the night nurse. haha, Later that day Paxton got moved out of the CICU!! We got moved upstairs to the surgical unit. He still had more fluid around his heart so he kept his chest tube in. Once we got upstairs things slowed down a lot. For the first time since being in the hospital we got bored. In the CICU it was open and there were tons of people. We could talk to the nurses and doctors and other parents. Upstairs we were shut in our own room and there weren't people around constantly to talk to. I also was able to nurse him again! So pumping went down dramatically which was SO NICE!! They were supplementing my milk at first but then they did a test to see how much fat was in my milk. Normal formula/breast milk has about 20 calories per ounce. Mine has 27. So they stopped supplementing. PROUD MAMA MOMENT!! :-)Saturday he got his chest tube out! YAY! I This day we also had a way fun nurse who would play with Paxton a lot. They would play a game where one would stick their tongue out and then the other one would do it. Back and forth and back and forth. It was super cute. We were hoping to go home on Sunday. Sunday morning came and Paxton had lost weight so we weren't going home. But in preparation for going home (hopefully the next day) we did Paxton's car seat test. He had to sit in a car seat for an hour with his vitals strong. He failed. His vitals were okay but he FREAKED OUT!! We also got to go to church on Sunday morning. This was one of the most sacred experiences of my life. The meeting is only a half an hour sacrament meeting. Being there with kids who were hooked up to their IV trees and in wheel chairs and with their parents was such an amazing experience. We didn't meet anyone in the hospital who was in a better situation than we were. We felt extremely blessed for how well Paxton was doing and for the relatively easy experience we were having. As we partook of the sacrament I was thinking about the Savior and the Atonement. I don't know that it has ever been so real to me as it was in that moment. All these people were suffering so much and the Savior felt each one of their pains and worries. The spirit was so strong and it was just...really an indescribable experience. My testimony of the Atonement was definitely strengthened on this day. Both Sunday's we were in the hospital we were able to read our Sunday School and Relief Society/Priesthood lessons (thank you technology!) and we watched "Joseph, King of Dreams" one week and "The Prince of Egypt" the next. It was nice to still be able to set apart the Sabbath day as something special despite our circumstances.
Monday morning came and we were crossing our fingers for weight gain so we could go home...BUT... he stayed the same. So now we were hoping for Tuesday. In preparation for that we had our car seat test again. This time HE PASSED! We also had to learn how to put a NG tube in (a feeding tube through his nose). This is something I was NOT excited to do! So Wes went first and it was so sad. Paxton absolutely HATED this experience. I would too. Getting a tube shoved through my nose to my stomach sounds like a horrid idea. Thankfully Wes got it in properly and I was off the hook for the moment. All the rest of the day I was just sick at the idea of having to do it. I understood why we needed to do it. If it came out at home and needed replaced it is nice to know how. Tuesday morning came and we waited for the weight results...HE GAINED WEIGHT!! Not very much, but enough that we were allowed to go home. I asked about having to do the NG tube and explained that Wes would be working from home so they said I didn't have to do it! YAY! Finally we were released. We stayed at Wesley's parents house Tuesday night and finally FINALLY got to come home on Wednesday, 11 days after we went into the hospital initially. But really... start to finish 11 days... not bad for having no clue/symptoms to post heart surgery. We were happy. Now Paxton is doing really well. He had his 2 week post-op check up and they proclaimed him perfect. He can grow up to be a normal little boy. We will have checkups with a heart doctor periodically. Thankfully we can go to one in St. George and the appointments will get farther and farther apart. His next one is in 2 months. Eventually they will go to 3 months...6 months...1 year...2 years...3 years...5 years... The greatest risk of recurrence is a 6% chance when he is in puberty. So hopefully by the time he is 20 or 25 he won't even have to go to the doctor for checkups at all anymore. We really couldn't be happier with how it has all worked out. Obviously no one wants to go through a situation like this, but everything has gone really well and we don't have any complaints. We have definitely learned a lot about ourselves, Paxton, and how much suffering there is in the world. We have also learned how much good there is in the world and have decided that we are going to do more to help out in whatever small ways we can. Our testimonies have also been strengthened especially of the Priesthood power and the Atonement. Watching our little boy struggle was a hard trial to go through but like it says in Philippians... "I can do all things through Christ which strengtheneth me." (Philippians 4:13). We also learned a lot about our little boy. He is a stubborn little fighter! He was such a trooper and dealt with this all so much better than I ever could have. He definitely has a strong little heart :-)
