So often we don’t understand why things happen the way they do. We long to understand the meaning behind the things in our lives, and we use different filters to process certain events. With my blogging style I normally write about a message I want to convey to people. With the Hayden family and baby Jace’s story, I felt compelled to share their journey. It is a difficult journey, but one in which you can see the hand of God at work. This story is not my story to tell. This story is one that can only be told by the person who knows her little boy best. This post is written by Lori Hayden. Even if you don’t know the family, it might make you appreciate all the wonderful things we have in our lives. Here is Lori, James, and baby Jace’s story…
August 2012 James and I found out that we were pregnant and due May 20th 2013. Unfortunately, in October 2012 we found out that the baby no longer had a heart beat and had actually passed a week or so before. We were devastated. On November 9th I had surgery to remove the remains that my body refused to let go.
The weekend of our due date we were blessed with our pregnancy with Baby Jace. We were scared, and so excited beyond words. After ultrasounds and visits with the Doctor we were optimistic that everything would be ok. At 5 weeks pregnant I was put on Progesterone to help prevent my body from losing the baby. At 12 weeks I experienced bleeding and had an ultrasound at the hospital. The ultrasound showed a sub-chorionic hemorrhage about 1 cm in size – this could cause a tear and separation of the placenta from the uterus, ending in a miscarriage. I was placed on bed rest for the weekend and encouraged to take it easy in the evenings long-term, with hopes that it would self-resolve – and thankfully it did. At our 20 week ultrasound we found out that our cute little peanut was going to be a squirmy little BOY!
Throughout the pregnancy I was easily winded, and gained weight very quickly, and had several episodes of high blood pressure. All of my symptoms were chalked up to being an expecting momma with a predicted big baby in my tummy. Halloween night my feet and legs were so swollen that they were not recognizable. My co-workers and family began to worry about me and my health. I ate healthy, rested and put up my feet at night, and attended my Doctor visits regularly. I passed my gestational diabetes test and all of my blood work throughout the visits.
At James’ parent’s home on Thanksgiving day, I began having intense upper gastric pressure and indigestion. I ate some Tums and took it easy on the turkey and gravy in the hopes that it was going to pass – it didn’t. I began having pain up under my right rib cage and slept propped up on pillows and dosed up on Tylenol and Maalox. On Friday we celebrated Thanksgiving with my family. My sister was massaging my feet and left handprints in my ankles and feet. I started feeling worse overnight and by Saturday I was extremely uncomfortable and sore. I called my Doctor’s office and spoke with the midwife on Saturday afternoon. She told me she felt like my gallbladder must be acting up due to the Thanksgiving over-eating that most pregnant women do – but I hadn’t. She instructed me that if my pain got unbearable to go to the emergency room. I decided to stay home, give a modified diet a shot and dodge the sick-bay at the hospital. Besides, I had a check-up already scheduled on Tuesday and it wasn’t unbearable yet – right? I took the Tylenol and Maalox again that she told me was safe, propped up on my pillows and tackled the night.
I worked all day Monday and a half of a day Tuesday at my job as a Dental Hygienist, taking breaks throughout the day to lie in the floor with my legs up the wall to allow my ankle fluid to drain. Tuesday afternoon I headed off to my doctor’s appointment to find out why I was in so much pain, and to check on our little peanut and make sure that he was ok. I could feel him wiggling and kicking so I knew he was still with us, I just hoped he wasn’t in danger. My appointment was at 2:20 and they actually brought me back a few minutes early. My weight was gaining too quickly, my urine had protein in it, and my blood pressure was 177/110. The doctor told me that my BP was too high so I would have to go over to the hospital.
The midwife and I walked over to Park Ridge Hospital and I was admitted to mother/baby. James arrived a bit later and we sat back to watch TV and relax. The head of the Baby Place came in and shut off the lights, shooed everyone out, and put a washcloth over my eyes. She said my BP was very high and it was endangering the baby and myself. They started playing soothing music and trying to talk in whispers to help keep me calm. The whole time I was there I was able to listen to the baby’s heartbeat on the monitor and that was a big help. My OBG came in and told me that my liver was having issues, my BP was too high and the baby and I were in danger. We were being transferred by ambulance to Mission Hospital because the baby would need to be born in 24-48 hours. Our world screeched to a halt – the baby wasn’t ready to be born! Would he be able to survive? The head of the unit started a Magnesium IV, gave me a steroid shot to help with his lung development and started a catheter. The paramedics arrived shortly after to take me to the hospital. James headed home to call family and work, feed the dogs and throw together an overnight bag, because suddenly we were having a baby! (He also thought to grab my stuffed hippo that he got me years before. It calmed me, gave me something to squeeze, and is now Jace’s buddy – how sweet!) The nurse kissed me on the head and told me she would be praying for my baby and I – I knew then that things were very serious.
On the way to the hospital the head of the Baby Place rode with me, and the conversation over my head with the paramedic was about the location of medications on hand. I recognized them as anti-seizure meds. I was blindfolded through it all and missed out on my (hopefully) only time looking or riding in an ambulance. When I asked about the medicines they played it off as procedure. The driver made a noise of surprise, and when I asked about it he played that off too. When we arrived at Mission he confided that a deer had run across in front of the ambulance. When we got to the hospital my riding buddy came up with me and worked with the staff to get me settled and a second IV started. They hooked up the baby monitor again and it soothed my mind and heart to hear his heartbeat.
Several staff came in and out of the room with introductions and papers to sign for treatment. I don’t remember half of them or what they said. James arrived shortly after. We asked for more information and the surgeon sat down and tried to give us enough information to help, but not enough to cause me to panic. She told us that I had HELLP syndrome. Although she didn’t tell us at the time, I found out later exactly what that meant– HELLP stands for H (hemolysis – basically the break-down of red blood cells), EL (elevated liver enzymes) and LP (low platelet count). My blood platelets were extremely low putting me as risk for a stroke, seizure, and/or coma. I was at a very serious risk of bleeding out – and had no clue. All the time I was so worried about that baby that I didn’t realize that I might not make it out of this alive either. The doctor said that although they do not know what causes it, the only solution is to deliver the baby. Because of my bleeding risk with an epidural they would have to put me to sleep, so James could not be in there with me. None of this was going the way I wanted. No tub laboring, no natural delivery and now no husband by my side. She told us that we were scheduled to deliver within the hour – did we have any questions? Thousands –I had thousands of thoughts and questions running through my mind, but at the moment none of them would come to me. We asked if he would make it; she told us he had a good chance of survival looking at his ultrasound and the fact that he was 30 weeks along. We asked if he would have any permanent disabilities; she told us that it did not look likely that he would have special needs, but he would have some delays in development due to being a preemie. If we didn’t have any more questions, it was time to go. James would be waiting in the room until the baby came by in the isolation chamber on the way to NICU, and we would follow the team up.
I asked for a chaplain. I am not always strong in my faith and I have a very hard time “letting go, and letting God.” I knew that he was in control and I was going to have to have faith that things would happen the way they needed to. No matter our fears, angers, past losses or pain – we had no control over this outcome anymore. The staff scrambled to find a chaplain before I went back, we didn’t have time. There is always time for prayer and reflection, and I am glad that we took that time. The chaplain prayed for the doctors, surgeons, for James, myself, and for our sweet baby boy. She prayed for skilled hands, successful procedures and calm hearts. I cried. The room she left in her wake was full of calming tears and silence. My heart hurt, my brain hurt, but my body settled. In my shock, panic and fear, I don’t know exactly what I said to James. I know I said I love you, goodbye, and choose Jace. That was the first time I really gave him that name myself. James had picked it out months ago but I had not settled on it, but it fit. And it was time. I was wheeled down the hall to the OR where 20-25 medical personnel were there to try to save my son and I. The surgeon asked if I was ready; no way. We didn’t have a choice, it needed to be done. The anesthesia team started counting back from ten and the world went black.
From what I heard later, baby Jace was out within 90 seconds. He entered the world with a cry, then quit breathing. He was intubated and rushed up to NICU with daddy in tow. His original APGAR score was 2, then after being stabilized and settled, he scored an 8. He was born December 3rd 2013 at 8:31pm weighing 3 lbs 11 oz and 16.25 inches long. He was actually a bit big for his age – something that would work in his favor. In the operating room I was being closed up. I ended up receiving two bags of blood platelets, one liter of blood, and they had a second on the IV tree ready for me.
James was there when I opened my eyes in recovery. I looked down and knew that the baby was no longer in my tummy. Baby Jace was alone in a plastic box hooked up to tubes above me, and we couldn’t see him or hold him. I was taken to a room until the Magnesium drip was complete and I stabilized. The magnesium made me feel intoxicated, uncoordinated and gave me extreme hot flashes all over my body. At 5 the next morning I was transferred to another room and I was able to see Jace for the first time. Daddy steered the wheelchair into the NICU and brought me ”bedside” to Jace. It was all so overwhelming. The ride down the hall was heartbreaking, and that day we only saw one of the five hallways in the NICU. Babies, machines, pumps and alarms all around us; families with red, swollen eyes sitting quietly, watching their little ones through portholes – this was our new home.
He was so tiny. The machines and cords made him look even smaller, and so frail. You could see every rib and vein, his skin fairly translucent. He was so still, but we knew he was with us. His chest rose and fell rhythmically and the machines flashed numbers and displays. Our little peanut was here, and his fight had just begun.
Later that morning family arrived to see us. We had asked them to hold off the night before because of the chaos and shock that we were adjusting to. I know it was hard for them, but they gave us our time. I felt sick, nauseas, weak, and my body and heart hurt. I threw up 30+oz of blood and bile. The nurses weighed me, and I had lost about 25 pounds of fluid since my doctor’s appointment the day before. The medicine for the nausea made me feel drunk and unstable and I slid into a deep sleep, missing out on family visits, but resting up. That evening I held Jace for the first time.
I was afraid I would break him or that after all we had been through I would do something wrong and hurt him. The nurses were so patient with us showing us what to do and getting us settled. They had us do kangaroo care – skin to skin, chest to chest with the baby. It helps them hear your heart beat while being against your warmth. They layer blankets from the warmer onto the babies to help trap in their body heat. It was heaven and hell at the same time. I remember fear, elation, tears, anger, relief, sadness, and a whole plethora of emotions. I wanted it to last forever, but it was over in the blink of an eye. He was a fighter, he was loved, and he would be okay – he had to! I prayed harder than I think ever in my life.
Our days became a routine of waves of doctors, nurses, emotions, trips to the NICU and covered plates from the cafeteria. James slept on the uncomfortable sofa under a cold window and I slept, drenched in sweat on the hospital bed. Everyday we tried to make a trip up to see our little man and four days after his birth, daddy held him for the first time “kangaroo” style. My two loves snuggled on a vinyl recliner, surrounded by machines and lights. This was our world, this was our new life, and this was our family.
After 5 days in the hospital we convinced the staff that I was okay to go home. I needed rest, and a hospital is not the place for it. But if I left, I had to leave Jace. Probably the hardest thing in my life was being wheeled out the front door of the hospital, into the cold, with empty arms and coming home to a quiet nursery. The sight of his things would cause me to burst into tears. James hid most of the triggers around the house before I could see them. I am grateful to him for that. The countdown to visitation the next day began, but a restless night of nightmares and pumping ensued.
For the next few weeks James and I would go to the hospital together before and after his work. Once I was cleared to drive again I made the morning trek on my own and James started back to work full time. The morning session was my time to snuggle, and daddy had kangaroo time in the evenings. We learned how to do preemie diapers, temperatures, how to rotate the baby, read the machines, silence alarms and start and stop the tube feedings. We started feeling comfortable in our new role as preemie parents.
One day a little girl down the hall was called home to heaven. The whole NICU took on a somber air, even the babies were more still that day. The nurses had puffy, red eyes and slow gaits, but still lathered him with attention and bragged on how cute he was. We became very close to a few of his nurses during our stay and keep in contact with them still! They were all so amazing and treated him like they would their own child. We began to sleep better at night knowing that he was in such loving, capable hands. I would call several times throughout the day and get the update on how he was doing, his growing weight, problems and solutions. He had episodes of bradycardia, apnea, and fluctuations in his oxygen intake. He was placed on caffeine by IV to help him regulate. He was weaned to non-forced room air, and graduated to an open air crib. He began taking a bottle and was even able to nurse! Our little one was fighting, and he was winning! We would have good and bad days and when they were bad it felt like being kicked in the stomach, but the good days still outweighed the worst. It was very odd spending Christmas at the hospital. They decorated with trees, wreaths and garlands, and I made a wreath to hang over his crib. Several families and groups brought gifts and food to the NICU, and shared stories of strength and support. One of the nurses put Jace in a stocking and took pictures that she had printed and waiting for us when we arrived to see him. We had our first family photo with Jace in reindeer antlers and socks, but his first Christmas bib from Grandma was bigger than he was.
On New Year’s Day we were transferred to a transitional room where we could “live” with Jace until he went home. He was still on a feeding tube in his nose, but most of his meals were coming from a bottle, or from me. I slept on the fold out futon in his room and daddy slept on an inflatable single mattress on the floor, but we were all there together, our little family was together. During the night there were alarms, feedings, pumping sessions, nurse visits and tears in the dark. Every morning the neonatal team would make rounds and check on him and make plans for the day. I soon became part of the meeting and the staff recognized and respected my input. The cafeteria staff recognized me and learned my “usual” preferences. The cleaning staff would come in to check on him and see how much he had grown. Our family of nurses had grown and so had Jace. He passed his car seat check on the second try, passed the physical therapy and vision test with flying colors, and had snuck by on the hearing check. Daddy and I gave him his first tub bath with help from one of our closest nurses. He was so small and slippery that we feared we would drop him, but we all survived. They took his feeding tube out twice before we could come home. It was a real step backwards the day they had to put it back in, and Jace was not a big fan. He actually pulled it out himself the second time, so we decided to go with it and he did great! Our little guy was now solely on bottle feeds and nursing. He could come home!!!
On January 17th 2014 after 45 days in the NICU, we celebrated our Homecoming Day. Baby Jace weighed 6lbs 5oz and had stolen the hearts of the NICU staff and his mommy and daddy. It took several trips to load up all of the belongings we had accumulated in our room, and several coolers to pack up all of the “liquid gold” milk that mommy had been pumping. This was it, we were going home. No more monitors, cords, oxygen, machines, pumps, or nurses to guide our way. Our world was complete and our home was no longer quiet and eerily still – our baby was home!! After months of colic every evening baby Jace settled into a rhythm and became relaxed and comfortable in his new home.
7 months and 14 ½ pound after birth, baby Jace is a light in our world. He has rolls and wrinkles and two chins – so much different than his birth. He has overcome so many obstacles and seems to learn something new daily. He is sleeping through the night most of the time and is even starting to cut some teeth. We have experienced some small delays in his development and he battles reflux and dairy/soy sensitivity, but those things pale in comparison to where we have come from. Our little man is a thriving, growing, happy, observant little monkey who greets you with a grin and a squeal. I thank God everyday for the chance to be his mommy, and the second chance at a life I had forgotten was so expendable. We are very blessed to have our miracle baby. We thank family, friends, and our communities for the thoughts, prayers and support that got us where we are today.