Life is unpredictable. I don’t know about you, but I always thought the really bad things in life only happened to “other” people. I’m not sure where that naïve thought came from and who those “other” people were, but I was positive nothing that bad could ever happen to MY family. 1,315 days. That’s how many days it’s been since part of my heart broke and it has never fully healed. I spent hundreds of those days searching for answers. Trying to comprehend how this happened and how to somehow go back in time and fix it all.
On December 7, 2011 I was at the hospital about to have my second baby. Before I became pregnant I had suffered through three miscarriages and then endured months of infertility appointments and high doses of fertility medicine. We were beyond thrilled to be having a son. Our first baby was now three years old and she was so excited to finally have a sibling.
My delivery with my daughter was chaos. My epidural had completely stopped working and I was, to put nicely, in a PANIC. (My apologies to my husband, all the nurses, and my doctor for things I may have said during her delivery!) I had prayed for months to have a calm delivery with my son and that my epidural would work this time. I was so grateful when it was done and began working so easily this time around. The entire day was spent calmly talking to my husband and mom about this sweet new spirit about to join our family.
Around 6 pm, I woke up from a nap and felt that it was time. I called in my nurse, and sure enough I was just about ready. My heart was racing and I couldn’t stop smiling. So many prayers were about to be answered and I couldn’t help but feel so grateful for my little family. With my husband by my side offering the sweetest words of support while holding my hand, I knew it was time for my son to be born. I pushed through two contractions and he was here.
Jaxton Ryan Worthy was born at 7:49 pm weighing 6 pounds 7 ounces and was 18 inches long.
He was perfect. He had ten tiny little fingers, ten tiny little toes, and the sweetest cry. He had the strongest grasp as he held his Daddy’s finger during testing. He calmed instantly the moment they gave him to me. I kissed his forehead and snuggled him tight. I was in love. He was here. He was alive. He was his own person. He was healthy. Perfectly healthy.
The room quickly cleared out and we were left to bond to this beautiful new baby. He wasn’t a great eater and I was told it would come with time. He just wanted to snuggle. He had his first bath around 10 pm and was dressed in his very first outfit. He had so much blonde hair like his Daddy and my nurse spiked it up on top so he looked just like him. I melted when he came back. He didn’t look like a “newborn” to me. He looked like HIM. Exactly what he was supposed to look like. Sweetest little features that defined HIM. He smelled heavenly. I couldn’t take my eyes off him.
We settled in for the night around 11:30 pm. We had just turned the lights off and were ready to get some sleep when Jaxton started squirming and making a small grunting noise. We tried to feed him and he wanted nothing to do with it. My nurse took him for observation and I think we called her every ten minutes for updates. They did an x-ray on him and they saw a small spot in his lungs, but nothing concrete enough for the pediatric doctor to come in or to have him admitted to the NICU. Early that morning he was finally admitted to the NICU for more observation. Everything in me went into shock.
I kept thinking any second the door would open and they would wheel in his little bed with him sleeping soundly and perfectly healthy. That never happened.
The NICU Neonatologist finally came in at 8 am. She called us into her office shortly after. She had an accent so strong I could hardly piece together what she was saying, let alone understand all the medical side of it. Her first sentence was, “Your son is in critical condition and most likely will not live”. She kept interrogatingly asking what I did during my pregnancy, what I took, what sickness I had. I MUST have been the reason my son was so sick. Through my tears and uncontrollable sobbing I kept saying I didn’t do anything. I was SO careful my entire pregnancy.
Her last words to us were that they were starting him on antibiotics to help fight whatever the infection was he had. They hoped to not have to put him on a ventilator, but it was a possibility. We wouldn’t be able to see him until they had finished. We went back to my room in shock. I was shaking and crying harder than I thought was possible. My husband and I said a prayer together and he held me until I calmed down a little. He went in the bathroom, hoping I couldn’t hear him, and called his dad. I’ve never heard my husband cry like that. He was the rock in our relationship. The calm one. The one who always KNEW things would work out and be ok. This time was different. This time he knew things were out of our hands. My heart broke a little more in that moment. Reality was starting to settle in. Maybe we would be “those” people that something horrible DID happen to.
We got the call around 10 am telling us we could come see him. We rang the bell to enter the NICU, signed our names, and spent the next five minutes scrubbing every single germ off our hands and arms. We quietly followed a nurse passing one tiny preemie after another. I kept thinking, “my baby is big and healthy, he isn’t early. He will be JUST fine. He has to be fine. Give him a day or two and he will be back in our arms and heading home to be with our family”.
Then the nursed stopped in front of the last bed in the row. She moved out of the way and there we saw our sweet little baby. He was hooked up to more monitors than any other infant in the NICU. He was on a ventilator causing his little body to shake rapidly. Even typing this, every part of me crumbles. My heart was broken. I knew this was bad. Very bad. We were told he was still in critical condition and had sepsis, a blood infection. They were waiting on the test results to tell them which main infection his poor little body was fighting and in the meantime he would be on three antibiotics.
We weren’t allowed to touch him, speak more than a whisper near him, or hold him. So we sat closely beside him. Silently sobbing for days. Every now and then I would quietly sneak a soft kiss to his forehead and whisper I love you to him. I can still vividly remember what that touch felt like and how he smelled.
The test results came back with devastating news. He had Group B Strep. I was completely unaware what it even was, how he could have gotten it, or that I had been tested for it during my pregnancy. I was tested at 33 weeks. My test result was negative so it was never brought back up. I never took the time to even look it up. I had NO idea what I had been tested for. The more I speak to other women the more I realize I was not alone in that ignorance. I wish more than anything I would have been more involved in my healthcare and more knowledgeable on each test done and all the possibilities of complications.
He would need to be in the NICU for at least 14 days at the very minimum if his body continued to respond to antibiotics. The place he was in in the NICU was one of the loudest spots possible. He was across from the bathroom, the door to the nurses break area, and next to him was an empty place so that often became the break circle for many nurses to relax during downtime. My husband and I sobbed almost the entire time we were there. We were told from Day 1 that any extra stimulation would cause him to suffer from pulmonary hypertension, which if it went too far there was no coming back from it and he wouldn’t make it. We felt so alone at times. We didn’t know who we could talk to and didn’t want to make those caring for our child angry with us for saying something. We failed him in that way.
We were his voice. We were the ones to speak for him when he couldn’t. I will live with that choice forever.
On day 5 the NICU was in chaos. The nurse assigned to our son was not in the right frame of mind to be caring for him. She was very short with us when we asked questions. She couldn’t see his IV’s very well and kept holding her glasses away from her eyes to try to see better. We were horrified. When running his blood tests, the respiratory therapist poked him over 10 times. When I got up the courage to ask through my sobs how many more times he would poke him. He chuckled and said, “until I get what I need”. This all felt like a horrible nightmare that could NOT possibly be happening at a hospital that was supposed to be one of the top NICUs.
We came back at 5 pm and the NICU had changed back to a quiet and calm atmosphere. Our son’s new nurse, Diane, was so sweet and kind to us and most importantly to HIM. She told us he was doing really well, still critical, but going in the right direction. He was losing water weight and his oxygen levels were getting much better. We breathed a sigh of relief.
We spent the evening sitting near him with a sense of peace for the first time. We finally had hope again that he could make it through this. Around 7 pm, my husband went out to update friends and family. I loved that quiet hour I had alone with my son. Even though I couldn’t hold him, I sang quietly in his ear the song I sing nightly to our daughter, “I am a Child of God”. I kissed him gently and he held my finger for a moment.
We had just gotten to my cousin’s home where we were staying, and were discussing all the events of the day. I smiled for the first time in five days. I felt calm again and knew we had a long road ahead, but we could get through it.
Then my husband’s phone rang.
“He’s taken a turn for the worse; you need to get here as soon as possible”. That sentence will haunt me for the rest of my life. We hit every single red light on our drive to the hospital. I have never felt my heart beating so hard. I said a million prayers hoping for a miracle.
We ran in to the hospital, down the long hall to the NICU, and were met by the Neonatologist working at the time. He told us Jaxton’s heart had suddenly stopped beating and they did CPR for 25 minutes and he came back, but it would most likely happen again and be worse each time it happened. We were told we had to make the decision to take him off life support. A decision NO parent should ever have to make.
Just like the first time we entered the NICU, we followed a nurse past all the preemie babies to the end of the row to our son. We were in complete shock when we saw our precious baby. So much of the swelling had gone to his little face during CPR. He no longer looked like himself. I knew the decision we had to make and my heart completely broke. My husband gave him a name and a blessing and then we somehow gave them permission to take him off life support. They had us wait in the “bonding room”, the room parents were allowed to stay in once their baby was about to leave the NICU and go home.
Diane brought him to me with tears falling down her cheeks. She placed him in my arms and I held him so tight. I never wanted to let go. I kept thinking he would start breathing on his own. I needed him to just breathe. To be ok. To stay here with us. To meet his big sister. How would we tell her he went to Heaven? How would we ever heal?
We sang him our song and prayed with him in our arms. Utah Share members came and were so kind to us. They will always hold a place in my heart. They made hand and foot molds that we will cherish forever. My sweet friend and photographer, Amber Rust, came to take pictures for us. She gave us a gift that means the world to us. He changed very quickly once off life support and she was so gentle in editing our pictures. She made him look perfect and gave us beautiful pictures to hang on our walls forever. No words can thank her enough for that.
The following days are a blur. Planning a funeral for your child is not ok. Ever. Every little detail sent me more over the edge than the last. Our parents and other family members were so wonderful and supportive. I don’t know how we would be where we are without them.
The days and months dragged after that. I was so lost. I didn’t know how we would heal and how we could find our “happy” again. I made the decision to buy a gift for Jaxton whenever we bought anything for our daughter, Brinlee. Every holiday or event we would buy him something and place it in a bin to donate on his first Birthday. My sweet friend, Holly, asked if our church could do their service project in honor of Jaxton. Having others remember your child is by far the most amazing feeling as a mother to an angel. Our church made over 100 blankets and 25 gift baskets for NICU families for us to deliver with the rest of our donations. Holly also talked me into putting what we were doing on Facebook and giving others the opportunity to donate as well. I was terrified. I did not want others to feel obligated to do something. The response was opposite than anything I created in my mind. For weeks, the donations kept coming. Our living room was bursting with them.
There is nothing that could have brought us more joy on his first Birthday than having that opportunity to deliver all of those donations to Primary Children’s Hospital. Since then we’ve done this every year on his Birthday or Angelversary. I’m so grateful for the joy felt during those darkest days and for the generosity of others to not only donate to the sweet children at the hospital, but to give us the opportunity to deliver it all in honor of our son.
My hopes with writing this post, are to inform every pregnant woman on Group B Strep and hopefully save sweet babies in honor of Jaxton.
Every pregnant woman SHOULD be tested between 35-37 weeks in pregnancy. The reasoning for that is to be as close to delivery as possible to get the most accurate result. I was tested at 33 weeks pregnant and I tested negative. I should have known that this was too early and my hope is all women WILL know better than I did and be on top of their testing. If you test positive you are given antibiotics during delivery to protect your newborn.
Approximately 25% of women test positive for Group B Strep during pregnancy (I don’t fall in that category, because I tested negative). There are two types of Group B Strep in newborns. Early Onset (what Jaxton had) and Late Onset. Group B Strep can cause Sepsis (a blood infection), Meningitis (infection of the fluid and lining of the brain), and Pneumonia (infection in the lungs).
Signs and symptoms to watch for in a newborn are a fever, difficulty feeding, irritability, lethargy, difficulty breathing, and/or bluish color to skin.
The CDC has a page with many explanations, facts, and treatment options. Read and share with every woman you know. Knowledge is power. Mothers, be your child’s voice when they can’t speak for themselves. Be aware of symptoms and notify your nurse or doctor immediately. http://www.cdc.gov/groupbstrep/index.html
Stephanie is a Stay at Home Mom to 5 children, Brinlee, Angel Jaxton, Twins Madi & Sadie, and new baby Dawson. You can get a peek into her love for her family and positive outlook on life through her Instagram feed @stephanie_worthy