Tears are for the Living
Buckle up friends- its a long one. All this time these memories have just been stored in my brain and I have never wrote anything down. Now, (almost) 10 years later I have taken the time to write down what I remember, so this is long overdue for me.
Let’s start story time with pregnancy. This might be TMI, but I knew immediately, from the moment of conception (if you catch my drift), that I was pregnant. I remember telling Riley just a week or two later, "I’m pregnant, and it's a boy" (This was before we even had a positive pregnancy test). He smiled sweetly at me and gave me a tilted headed nod- saying “Ok sweetie” - like he didn’t believe me. We took a trip to Illinois a couple weeks later, and it was during that trip that I took a pregnancy test and confirmed we were definitely expecting.
I remember peeing on a stick in this gross motel room in Cameron, Missouri and seeing those two little pink lines. Thrill and fear flooded my body and at that moment, I knew our lives had changed forever. To top it off, a few weeks earlier, I had found out that I had been accepted into grad school for a marriage and family therapy program. This was an accelerated program that required 18 months of full-time attendance, with only six days of absence allowed. And for some reason, I knew early on that being pregnant while attending grad school was going to be a bad fit for me.
Still in Missouri, I called ASU and told them that I was pregnant and asked if I could defer enrollment. They told me no, and that I would need to reapply when I was ready to attend. So, I informed them that I would have to withdraw due to my pregnancy. After the call, I felt an overwhelming sense of relief—like it was God's way of telling me I had made the right decision. Little did I know just how right that decision would turn out to be.
When I was about 5 or 6 weeks pregnant, my sister and mom came to visit. I told them I felt something wasn’t right, that I didn’t think this baby was going to make it. They were being dismissive and trying to console me in a not very understanding way. I was scared and worried and they weren’t helping the situation so I then told my sister and mom to leave my apartment - I believe the F word was thrown around (not my proudest moment). Even though I had no prior experience with pregnancy, I just knew that something was different, something was off. I tried to push the fear aside, but I couldn’t shake the feeling that I might lose him.
As the pregnancy progressed, I remember buying him a baby book and filling out the details we already knew, like the genealogy portion and back story on Riley and I’s time before his birth, stuff like that. As I was filling it out, this feeling came over me and I remember the voice in my head saying, "He will never see this, but this is for you." At the time, I wondered if I was already experiencing postpartum depression, especially after hearing about Makenzie’s struggles with it. I brushed it off, telling myself it was just anxiety and to get a grip.
At every doctor’s appointment, I voiced my concerns. “Are you sure everything’s okay with the baby?” I’d ask. But my doctor was dismissive, telling me I was just a worried first-time mom and that I needed to relax. That only made me trust her less and quite frankly dislike her. But she was the doctor, had delivered lots of babies and cared for lots of moms, she must know what she’s doing.
As the time approached for the birth, my anxiety grew worse. My blood pressure was high, so the doctor decided to strip my membranes to induce labor. This happened on a Wednesday afternoon, and she promised to call the hospital to ensure I could come in that night. Such a vivid memory is of me sitting on the chair my mom reupholstered for Jaxin, in our tiny one bedroom apartment begging Riley not to make me go to the hospital. All I knew in that moment was that I still had him with me, inside me- safe, I wasn’t ready to let that go. I was so scared. Riley was so sweet and just tried to reassure me that everything would be ok, but I insisted I didn’t want to go, and please don’t make me.
I wasn’t admitted until early Friday morning, around midnight. They started the induction with Cytotec, as multiple nurses came into check how far along I was. Im talking like 5 or 6 nurses in a 12 hour shift. They kept changing nurses and with each nurse change they would come in and insist on checking me. It hurt a lot and it made me think how this is just unnatural to have so many people checking my progress- GERMS! I basically just laid there in silence watching the monitor for the rest of that morning. They decided to give me Pitocin later that day and that made my contractions come too close together so they gave me a shot of terbutaline to slow the contractions which actually put me into active labor instead. It was a complete nightmare. I was finally given an epidural around the 17 hour mark and that didn’t work as expected—it only worked on one side—so I had to get a second epidural an hour or so later.
By 9:00 PM on Friday, Jaxin was showing signs of distress with every contraction, and they noticed meconium in the amniotic fluid when the doc broke my water. They decided to place a catheter vaginally and pump water into my uterus to cushion Jaxin. I remember lying there, as the doctor sat on the edge of my bed watching the monitor with me. I could see the concern in her eyes and I remember looking right at her and said, “You get the baby out whatever way you need to”- silently pleading for a C-section. She calmly said that she thinks she could still get him out vaginally and that it wouldn’t be much longer.
After eight more hours, the door swung open and the lights came on in a blaze as my legs were propped up in the stir-ups before Riley was even awake from napping on the couch. The NICU team was there with about another 4 or 5 nurses- the room was bursting at the seems and I was panicked to see so many people. It was time to push and I pushed and pushed, but he wasn’t coming out. I remember my doctor telling me not to make a sound (scream) as I pushed, I was so mad about that. Like let me do what I need to do to get this baby out. He ended up being pulled out with forceps (sad I know) with the cord wrapped around his neck. Sweet Jaxin was born at 6:58 AM on April 11, 2015. After I was told not to make a sound during labor I felt like I couldn’t even cry when he was born so I buried my emotions and watched as the nurses cared for him under the warmer. As I watched, I remember thinking, "I’m a psychopath. I worried for nothing. Everything is okay now." He was here, and despite everything, he was pink, beautiful and perfect.
The NICU team checked him over. He was doing well and his APGAR was 8- which was good. I was moved to the recovery room, and our family came to visit. Jaxin was passed from one person to the next and loved on so much, but no medical professional even touched him until the nurse came in to give him a bath around 4pm that afternoon.
The nurse that came in to give him a bath noticed his temperature was low and placed him under a warming lamp. (We later learned that a low temperature can be a sign of infection in infants). She was doing this so she could get his temp up before putting him in the bath. The pediatrician came in around the same time and looked him over while he was under the lamp. The doc gave him a clean bill of health and said he would be by tomorrow to check on him again. But a few hours later, Jaxin began making strange noises, (what we now know as him “grunting” or trying to open his airways in his lungs) but I thought he might be trying to go to the bathroom. I called the nurse around 7:00 PM, asking if she wouldn’t mind coming to check on us since it had been a few hours. She came in two hours later around 9pm. I told her that the baby was making this weird noise and that I thought he was trying to go to the bathroom. She immediately recognized something was wrong. She said, “I think it’s respiratory.”
Despite my lack of medical knowledge, I knew this wasn’t good. The nurse immediately left to get a charge nurse, and they took him out of my arms and my world changed in that moment, forever. They gave him a quick exam, and one of the nurses ran to call the NICU. I knew then it was serious situation. The NICU team arrived and began giving him bag breaths. I stepped outside the room, called my parents, and told them I didn’t really know what was happening but that they needed to come to the hospital right then.
Jaxin was rushed to the NICU, and everything after that became a blur. I remember we had trouble with the elevator because of the tracking device attached to his ankle (this is suppose to disable the elevators to deter kidnapping- yeah awful, but real). Once in the NICU, things were chaotic. A neonatologist showed us X-rays of his lungs, and they were almost entirely white. She told us he was very sick and in respiratory distress, possibly due to an infection. They began blood cultures, put him on a ventilator, and started broad spectrum antibiotics. (Side note- I don’t know if you will ever understand when I say to you that when this doc said my baby was sick, it was like not registering in my brain. My brain couldn’t even wrap around that phrase. It was so strange.)
By this point, it was the early hours of the morning on Sunday the 12th. The doctors gave us a bed in the NICU, but Riley and I barely slept, crying ourselves to sleep. We were later told that Jaxin needed to be transferred to Phoenix Children's Hospital to be placed on ECMO (heart- lung bypass)—life support. He was in septic shock and his organs were failing and this was his only option. They couldn’t airlift him due to the amount of machines he was on, so they transported him by ambulance. My dad drove us there at 100 mph, and we actually beat the ambulance to the hospital. We ran through the long hallways to the NICU, where we met Jaxin and his medical team at the perfect time and we followed them into the NICU.
Once we were there, the doctors told us Jaxin’s oxygen was only functioning at 20%, and that ECMO was his only chance at survival. We had to make a decision really fast: put him on ECMO or let him pass now. We chose to give him any and every chance. They ushered us to the waiting room which was empty because it was a Sunday (tender mercy). A nurse was put in charge of keeping us informed as they put him on ECMO. She came out at one point to tell us they had started the surgery but that he did code for 14 minutes prior. I began to sob and this blanket of peace enveloped me and I felt like he was gone, that was it, it was over just like that. A few minutes later that same nurse came out and said they were able to get him on ECMO and that his heart was beating again.
After a couple of days the blood cultures came back showing that Escherichia coli (E.Coli) had grown in his blood in 8 short hours. You may be asking, “How did he get E.Coli?” Unfortunately we will have to wait till Heaven for that answer. The doctors gave us some ideas of what may have caused the infection like my bag leaking and resealing or somehow in labor or delivery, but they ultimately couldn’t tell us for certain how he contracted the infection. After they found out the specific bacteria, they switched him over to antibiotics that dealt with this particular gram-negative bacteria. Over the next couple of weeks, we saw small improvements. It was like two steps forward, five steps back. It was a minute by minute situation, everyday. Jaxin had multiple surgeries, a pneumothorax, endless blood tests, scans and x-rays and he was on continuous renal replacement therapy (CRRT) because his kidneys weren’t working- (just to name a few challenges). [I could write a book about all the things this kid went through in his short 30 day life.]
Through all of this, we felt lifted by the prayers of so many people—some we knew, some we didn’t- but we were receiving prayers from all over the world. Our family and friends came to visit daily. There was this big window next to his bed that many people were able to come and look through so they could see him. We were blessed with priesthood blessings, and Jaxin had several of his own.
The last weekend we had with Jaxin was Mother’s Day weekend. That Friday, we were hopeful, as he seemed to be doing well. But by Sunday, he was no longer responding or opening his eyes, and his condition worsened rapidly. We spent Mother’s Day by his side. That Sunday night, his blood pressure tanked again. We left around midnight, and when we left things were stable, but just a few hours later, we received a call. His blood pressure was failing again, and I knew, in my heart, that this was it. I could hear it in the nurses voice.
Before we left for the hospital, Riley and I knelt and prayed in the family room. I don’t remember what we prayed for but I’m glad we spent those few minutes praying together because we were going to need it that day. I do remember we received every green light on the way, as we were making phone calls to family to let them know they needed to get to the hospital. When we arrived, I knew by the look in the nurses' eyes that it was time. I said to one of the nurses, “This is it, right?” She simply nodded and right then I began sobbing and hyperventilating into a cloth diaper (thats what they used for tissues).
We were able to hold him for the first time since they took him from my arms in the recovery room- it felt like a lifetime ago at that point. Each of us took a turn with him while he was still connected to the ECMO machine, but his heartbeat was quiet and slow. When we were finally ready the team clamped the ECMO lines and we just waited, crying and in reverence. I prayed to God in those last few moments with him in my arms and asked Him to take him quickly. He did. I felt him take his last breath about five minutes before Dr. Patel (our favorite) officially called the time of death. What an honor it was for me to hold him as he went on his way to the other side. It is one of the most important and meaningful things I will ever do in my life.
After he passed, we held him, bathed him, and wrapped him up in his blanket. We made handprints and footprints- some in clay and some in his baby book that I worked so hard on. We stood around in silence and in love as the nurses took such good care of him and us.
I was emotionally spent. We were waiting for my sister to come so she could see him before we left and I took a moment and went to the back of the room and sat in a recliner that faced Jaxin laying in his bed and out that big window. I let out a huge sigh and as I did two butterflies floated by the window and then out of the window frame. I sat up straight and started to cry again. (Side note- In some of my special memories a yellow butterfly had appeared, like the day I decided to marry Riley a yellow butterfly flew by my car window, so I have always taken it as a good sign.) Then the butterflies came back and fluttered there in front of the window for a few moments and then flew away, one was yellow and the other shades of orange and black. I took this as a beautiful sign from a loving Heavenly Father that my baby was safe and free from all the pain he had to endure in his short 30 day life. He is now known as our “little yellow butterfly”- hence our beautiful logo.
People would often tell me everything would be ok but what does that look like? I knew God’s “ok” and our “ok” were two very different things. The prayer I prayed most often during that month was “Please don’t make us make the choice to take him of life support.” That prayer was answered. Jaxin was called home despite every intervention to save his life. To me that is one of the biggest blessings of my life. We didn’t have to make the choice between life and death. I already had so much guilt thinking he was sick because of something I did or didn’t do, that I don’t think I could have survived that decision as well. I am so grateful God took him when his time here was done.
Riley has always said these 3 things to me:
He stayed till Mother’s Day.
In those 14 minutes when he coded, I believe he asked Heavenly Father to come back to earth for however long he could so he could be with us.
Jaxin didn’t get sick because of me and it wasn’t my fault. (Somedays I believe him and other days I don’t)
This sums up his short life fairly well. It’s not a complete history and I may go into more specific details at a later time, but if you have made it this far, congratulations you deserve a medal! What comes next is the life lived without a member of your family, something I wish no-one ever has to go through but unfortunately it’s inevitable. As my Dad always say’s, “We are all dying to get out of here.”
In Loving Memory of our Little Warrior
Jaxin RIley Jensen
4/11/15 - 5/11/15
