Paxton Ray Walls: Fearless Pax Man
Back Story: In the late part of November of 2019, I was constantly getting yeast infections and constantly thirsty. I went to the OBGYN where we lived in Montana trying to figure out what the heck was going on with my body. If anyone knows what a yeast infection is, it is not fun at all and can be painful. After what seemed like the 20th time being treated my OB decided to look at my blood work and my blood sugars. We got the blood work back quickly and not only was I diagnosed a Type 1 diabetic, but we also found out I was pregnant as well. It was a surprise to everyone with both diagnoses, we had been trying to get pregnant after having a miscarriage early that summer but becoming a diabetic was a new thing. I had gestational with our first pregnancy, but I was completely fine after delivering. I was immediately put-on insulin to control my blood sugar and was referred to an endocrinologist as well as the high-risk clinic to be further monitored throughout this pregnancy.
First High-Risk Appointment: We got into the high-risk clinic for our first appointment in the beginning of February. When we first found out we were pregnant late November and the first of December I was still only at the very start and not far along. So, we went to the Maternal Fetal doctor and I had seen them before with our first son’s pregnancy, so it was nice to see them again and know I was in good hands already. They did the normal routine ultrasound and testing. When they doctor came in, he had the look of concern and we knew immediately something was not right. He told us our baby’s heart was on the wrong side of the chest so on the left side and completely turned the wrong direction as well. He wanted to take a sample of the fluid around our baby and test the cells to see if there was anything genetic wise that would be causing this. He referred us to the pediatric cardiologist who we later saw a couple weeks later. In between our appointment we found out that there were no underlying genetic problems going on and we found out we were having another little boy. We were over the moon excited and terrified. I was so happy and excited to be a boy mom and have Cooper our oldest be a big brother.
Cardiology appointment: Going into this appointment we were so nervous and scared for what we might here or what could possibly happen with our sweet boy. The cardiology did an extensive ultrasound and looked at every part of our boy’s heart. Once they figured everything out, they sat us down and I’ll never forget the feelings and words in this conversation. We heard your baby has Heterotaxy with right atrial isomerism as well as Dextrocardia. His heart was completely flipped, and nothing had formed in the right places. We also risked having his stomach and other organs completely on opposite sides as well. His pulmonary artery was exceedingly small and at the bottom of it there was muscle growing making the opening for blood flow extremely hard to get past. He later would be diagnosed as well as a right sided single ventricle.
The cardiologist told us he might not make it to term and if he did, he would not last very long without surgeries. We were living in Kalispell Montana at the time and they did not have the manpower or specialists to care for our little warrior, so we decided to transfer care to Salt Lake City Utah and be seen by The University of Utah and Primary Children’s Hospital. Going home after that visit was devastating, we did not know how long we would be able to have both boys together and Covid 19 was just starting so we knew it would be even harder to have this little boy during the pandemic. I think I cried for days of not knowing and looking up everything I could and reaching out to other “heart parents” to really see what path we were heading down.
The Move: We moved to Utah quickly because we wanted to get established with the team here and get to know everyone before we had our boy. Plus moving in the middle of a pandemic was a joke so we did not want to wait till it got worse. I was supposed to deliver in August, and we moved in to Utah the first of April. We got settled into our tiny apartment and began all the countless of doctor’s appointments at the University. It was a breath of fresh air knowing we were in great hands and that they were very hopeful for our little baby since they do this everyday and treat kids with congenital heart defects. We ended up deciding we would name our little boy Paxton Ray Walls; Ray is after my great grandpa Ray who id never was able to meet but he was a well-respected doctor at the University of Utah, so it seemed fitting and my moms middle name is Ray after him as well. We adored our little Pax man so much already and looked forward to the day we would be able to meet him.
With his diagnosis he would need a series of three open heart surgeries and one day a heart transplant. We started to prepare for our new life with Paxton and what that all included. I was always measuring big throughout my pregnancy and we always attributed it to the diabetes. My momma instincts knew something was off the whole time because I was constantly getting asked if we were having twins. By the time I was 28 weeks Paxton was already weighing in at 5 pounds. I knew he would have to come way earlier or else id be having a 10-pound baby by the time my due date rolled around. I ended up going into preterm labor at 30 weeks and this was at the begging of June, so I had a while to go still. We prepared to welcome Paxton into this hectic world, but his team of doctors were able to stop be from going all the way. They gave me a bunch of medicine to help Paxton’s growth ramp up a bit quicker since there was no way of knowing how much longer he would last. We needed him to continue to grow a couple more weeks to give him a fighting chance for surgery.
Its go time: I went in for a regular non stress test on June 27, 2020, I had one just two days prior and everything was great so I figured it would just be another quick one. During the time I was on the monitor Paxton was hardly moving and his heart rate was steady and would not dip or jump like it normally does. The nurse called my doctor and they wanted me to head to the hospital to be further watched. Just thinking it will be a false alarm and a regular appointment I had none of our bags ready in the car. I went up the university and got all hooked onto there monitors. My OBGYN walked in and said we will watch him for a bit but if it does not change, we will probably start inducing you. I called my husband and told him what was going on but he didn’t need to rush right away to the hospital, so he stayed a little longer at work and got off early to go grab our bags and come up later in the day. Right as my husband walked in the doctor ran in and said we are taking you in for a emergency C section his heart rate is dropping he needs to come out now. Thank goodness Hunter was there and had just made it in time for them to prep me and wheel me back. At 5:05 that evening Paxton Ray Walls was born and taken straight to the NICU at primary children’s hospital. He weighed 8.9 pounds so pretty much a 9 pounder at 33 weeks. All the doctors were floored at how huge he was for being born so early.
Life after delivery: Paxton was in the NICU for the first month of his little life and he overcame so much. On July 23, he had his first open heart surgery and did amazing. His surgeon was so pleased of how things went with how complicated his body and heart is. After having his surgery Paxton was watched a little longer in the Heart wing of the hospital because his heart rate was constantly high even while resting. During this time we loved on our little boy and held him every chance we got and always let him know mommy and daddy were so proud of him. Paxton was finally able to come home August 8. We were overjoyed to finally be a family of three, and for Cooper to finally meet his little brother. Paxton thrived at home and we just loved having him home. We would go in every other week to see his team of doctors for check ups and he was doing great. He had some problems eating and drinking from a bottle so we went in for a swallow study on September 3rd. Paxton started to breath hard and had deep retractions so cardiology came down and looked at him and felt it would be safe to just admit him and see what is going on. Not knowing that day would be his last day at home and our lives would be turned upside down within the next couple days. Paxton ended up getting a NJ tube placed and when he came back to his room his heart rate was 230.
Every doctor and nurse were in his room doing everything they could to get it to come down. The only thing working would be placing a bag of ice over his face so when he would breathe in it would lower his heart rate. As the days went on, he for some reason would completely drop in oxygen and heart rate would skyrocket. His team was running about every test you could think of trying to figure out what was going on, but everything would come back fine. After three times of calling a code Paxton was transferred down to the ICU and was intubated. At this point he was completely reliant on the vent and would de sat if they tried to lower any of the settings. After all these tests we finally figured out what was causing his little episodes. His pulmonary artery had grown so fast somehow and was compressing his airway causing him to not be able to breath and be in distress.
That Friday September 10 we had a huge conference with every member of his team to figure out what the next steps were. We were given an option to travel to Michigan to be placed in a trial to see if they could repair the airway and put in a permanent trachea. His surgeon was not confident in even doing this because there was no way of knowing if it would even fix the problem. Paxton’s anatomy made it extremely hard for what sometimes can be a straightforward fix. All through our journey hunter and I made it clear we want Paxton to have a good life and to never be in pain and not suffer. During this meeting I immediately knew what we were going to have to decide since his team had no other options of being able to give Paxton all those things. Hunter and I decided we wanted to just take Paxton home and let him live out the rest of his little life and be a family. With COVID-19 and having Paxton hunter and I were never able to be together in his room or by his bed at the same time, but we finally got permission to do so and we were able to take Paxton’s bed outside so Cooper could see him, and everyone could say their goodbyes. I have never cried so hard and so much out of sadness and anger wondering why us what did we do to deserve this.
The next 24 hours Paxton went downhill extremely fast still being in the hospital and ended up developing NEC as well. Saturday night he finally opened his little eyes with the strength he had left and looked up at us and we knew it was time he was ready and done fighting. His little body had been through so much. Sunday morning, we held our sweet boy as he passed away in our arms and loved him as much as we could before it was our last time. The feeling of leaving the hospital empty handed knowing Id never see my baby boy again was a feeling I could never describe. I long for the day to see my sweet boy again and hold him. We know he is pain free and has a perfect little body in heaven and is watching over us while we are still on earth. We will cherish the 4 weeks we had all together at home and being a family. Paxton fought such a hard fight and is our forever warrior. We miss him so much each day and will never stop love our Pax man.