Written by Alexandria Danilovitch
April 1st is bittersweet, because I am not only pregnant with our rainbow baby and he will be here any day now, but 2 years ago this day, our hearts were crushed.
•April 1, 2017•
I was in New Jersey for a conference with some of my amazing girlfriends from my business team. I was excited to be there with them and I was walking around on cloud 9 filled with complete joy, because I was pregnant for the first time.
That morning started like any other. I needed to eat due to a little bit of morning sickness, but other than that I felt energized and good! Unfortunately, as the morning progressed I started feeling weird. I went to the bathroom and knew something was wrong. I went back to my seat and told a girlfriend (who was also a nurse) what was going on. I cross referenced my symptoms and it looked to be a subchorionic hemorrhage. After some discussion with my girlfriend, I decided to get checked out. I went searching for a women’s clinic that would see me, but nobody would. Every one I called told me to go to the ER, so I finally did. My girlfriend was kind enough to join me, bless her heart because it sucked there. They were swamped.
After a while, I was finally seen by a nurse who takes my blood to see if I’m really pregnant and then we waited. Test results came back positive. HCG levels were over 64,000, and the rest of my blood work look really good. Then I was transferred to radiology to get a transvaginal ultrasound and this is where things take a turn. The ultrasound tech was horrible. She had absolutely no people skills. She wouldn’t look at me, she wouldn’t let me see anything, and she wouldn’t speak to me. She just shoved her wand around inside of me as if I wasn’t even human and banged on her keyboard taking measurements of the baby and anything else.
Afterwards, I was just told to get dressed and we were then placed in a hallway to wait some more. A woman came by with a rolling computer and handed me a bill, for which I paid for in cash and then we waited some more. We were near a dr/nurses station so we could see what was going on. A paper came through on the printer, a doctor picked it up, took a look at it and came out to find the patient. That patient was me still waiting in the hallway. He looked at me, looked at the paper and said, “There’s no heartbeat.” and he proceeds to hand me the paper, tells me I can get checked out back at home, and basically sent me on my way. I looked at the paper and the diagnosis was “subchorionic hemorrhage”.
I was numb, I was in shock, and I thought it was a sick April Fools joke played by Satan himself, because in those 3 words my whole world was crushed along with my heart into a billion little pieces. The absolute worst part was having to call my husband and tell him.
Then I went into denial.
Remember I said I was at a conference with amazing girlfriends? Well they rallied around me, prayed for me, told me their stories, and gave me hope. Throughout the rest of the trip, my denial stayed strong and my hope stayed alive.
I eventually got home to see an OB and again my HCG levels were checked and they were only a few hundred below what it was in NJ. They said that it wasn’t a significant drop to be considered a miscarriage and that it could be just a difference in the two testing centers.Denial and hope remained. I was then scheduled for another transvaginal ultrasound. This time at least the tech was incredibly kind. She explained every little thing to us and let us see our baby on the tv screen. Unfortunately, she couldn’t find a heartbeat either and we were crushed once again.
April 1, 2017, started a month long miscarriage process. Yes, almost the entire month because my body didn’t recognize it at first, so I continued to have morning sickness and other pregnancy symptoms even though there wasn’t a heartbeat. Once I did start miscarrying, it was a hell of a lot more than just “a bad period”. I cramped for weeks and then had full blown contractions to release the baby and then also the placenta. That was something mentally I was definitely not prepared for. Again, my heart shattered.
Again, beyond my physical pain was the heartbreak of having to tell my husband and seeing his pain.
1 in 4 women have suffered a miscarriage and many others have suffered infertility of some kind and from stillbirths.
So, today I remember my first loss (1 of 3), but I’m excited for our rainbow, God’s promise after a storm; a new adventure and blessing that is on his way.
Written by Addison's Dad, Jake Englehorn
This is the second or third time I’ve tried to put everything down on paper. Three years later, the loss of my first daughter is still just as painful and emotional as day one. The pain and emotion have changed and evolved, but it is ever present, and I hope it never leaves.
We always wanted children. Admittedly, at first, my wife more than me. When we were married, my dream was to be a business owner, and her dream was to have kids. She fervently supported me as I started my business, and we both started saving our pennies for our future family. She worked as a NICU nurse at St Luke’s Boise, and she was surrounded by beautiful newborn babies. I don’t think that helped with the birth control. She was able to see the good and the bad, the sick and healthy. Slowly, her dream of having kids became our dream, and we decided the time was right to expand our family. Little did we know how hard it would actually be...
For the next 5 years we became acquainted with infertility and the depression that follows. We tried everything, and had zero success. Was our dream to remain a dream? We realized it would be a difficult road. A difficult road filled with more setbacks, sadness and misguided dreams, but we were determined. We spent hundreds of hours researching fertility and pregnancy, saw 3 different Fertility Doctors in 2 different States, took hundreds of medications and supplements, tried natural medicine, and finally had 2 separate IUIs and 3 IVF treatments.
In the summer of 2015, we had our first IVF embryo transfer. I couldn’t believe it had come down to IVF, but for some reason, after our first IVF transfer, I knew Jenny was pregnant. I knew it. I could just sense it, and she could probably feel it. When we got the phone call from the Doctor to confirm our belief, we were elated, and we were ready to make our dream come true.
We soon found out it was a girl. A daughter. My baby girl. We decided on the name Addison Capri. Jenny was the best pregnant Mom in the world. Haha. I don’t say that lightly! We spent an exuberant amount of money on recommended supplements and healthy, appropriate food for her. She wouldn’t eat certain ‘normal’ food, and I think a handful of restaurants and family members secretly hated us when we came over to eat. But we really didn’t care. We had a dream, and we were here to make this dream a (healthy) reality.
As a NICU nurse, Jenny has seen the good and the bad, the sick and the healthy. We had fought so dang hard for this pregnancy, and we were determined to do everything on our end to make it successful. We fought and worked on it every single day. It was a massive priority for us. Until it was all stripped away.
The morning of April 13, 2016 was just a normal day. The previous weekend was spent painting Addison’s nursery and preparing the house for an ‘any-day-now’ pregnancy. I had just sold my business and was getting ready to end the lease on my office building. Jenny was headed over to her sister’s house who lived nearby. Around 1030am my leasing agent left my office, and I happened to look down at my phone. I saw 11 new messages and 6 missed calls, all within a 10 minute time span. My heart dropped. I saw the first message from Jenny, and it said,
‘….get to the hospital… please.’
I quickly called her, and through the sobs I heard her exclaim…
’…they can’t find her heartbeat, she’s gone. She’s gone.’
I stammered for a minute in complete disbelief, promising her everything would be ok, and that they couldn’t be right. I sped the 13 minutes to the hospital, not even waiting for the elevator once I entered the hospital. I ran in, onto the wrong floor, and just collapsed onto the nursing station on the third floor. Somehow the Hospital Chaplain was there, and he quickly took me aside and escorted me to the correct floor to see Jenny. I only remember sinking into Jenny’s arms and sobbing together.
How could this be? A perfectly healthy Mom & Baby? More than 32 weeks along? Nothing bad is ever supposed to happen this far along. How could they not see this on the millions of ultrasounds? Why aren’t they doing something? Maybe everything will still be okay…..Maybe.
The next couple days were spent drenched in tears and filled with anger. By God’s grace we had the best nurses by our side, nurses that we still keep in touch with today. Jenny bravely delivered our perfect daughter, Addison Capri on April 14 2015. She was so beautiful. The perfect little nose. She had blonde hair in tight little curls. The Doctor described the loss as a complete fluke. Addison had a cord issue called ‘velamentous cord insertion’, and it had twisted so tightly at the point of the insertion on the placenta that it cut off all blood flow and nourishment. It was undetectable, unpredictable and unbelievable.
We spent as much time as possible with our daughter. Unfortunately, they had to take our daughter to the morgue to prevent any further decay. At this time, I vaguely remembering calling a funeral home and making arrangements, a phone call I never could of imagined making at 27 years old. I was going to bury my own daughter, and I was only 27.
A loss like this is simply indescribable. The hopes and dreams you had with your baby are now shattered. The ‘what if’s’ are the most difficult for me, personally. Nobody quite understands the little things, like why Holidays are difficult, or why a certain song brings tears, or why some jokes simply aren’t funny, or why life will never be the same. Society and family members can be spiteful, uncaring, and insensitive. Many expect you to move on like it never happened. Like your child never existed. It’s a personal journey, and I hope to never forget the pain and sadness, because I am feeling something, and my daughter is a huge part of life.
Through IVF in late 2017 we were blessed with boy/girl twins, Harrison and Hadley Capri. It’s so much fun to tell them about their older sister Addison. We tell them about the memories we made when Addison was in Mommy’s belly. We show them her grave site and celebrate birthdays and include Addison in everything we do. We kept some of Addison’s early toys, and we give them to our kids as ‘hand-me-downs’ like normal kids would get from their big sisters.
Some days are a real struggle. I am very involved with my kids’ lives, and I often look at my little Hadley, who is almost 2, and I think what if. What if you are just like your big sister? What if you had your big sister here with you? It breaks my heart every time, but I know I will see my daughter Addison again, and my kids will be with their sister again.
As an emotional guy, I felt very left out during our loss. From family, friends, and the entire bereavement community. I’m hoping to change that by volunteering with Little Joys. I started volunteering in order to give back and use some of my talents to help others. I have found such strength working in my daughter’s name and for such a great cause. What a joy to give families a few more hours with their kids.
Written by Kylee's Mom, Kim Fields
This is the first time I've ever written Kylee's story. The first time it will ever be heard. I know she is my angel keeper and watches over our family. She is loved as much as they day I found out I was pregnant with her. She is our Angel.
I remember the day like it was yesterday. This year, February 3rd marks Kylee's 11th birthday. Kylee's dad, David, was active duty in the Navy at the time and I was a working mom as well as a mother of 3 older boys. September we did a pregnancy test and it was positive! I made my first doctor appointment with my favorite OB, Dr. Henderson. It was the day of my appointment, I could feel butterflies in my tummy from you kicking and twirling around in your home... me. I had felt so close to her for months but today was the day I got to find out how far along I was. I was just shy of 4 months. I remember my blood pressure was very high and Pre-eclampsia had already set in. I didn't care. I was a fighter and I knew you were a fighter being blessed as my daughter.
It was a girl! It was all I had ever wanted. I was in tears that first appointment. The bad news about me didn't matter. What mattered was your health. I was fragile, morning sickness was constant and I always craved sweets. You were my little sweet tooth. My second appointment came around 2 weeks later (at that time and the rest of the pregnancy I was so high risk I had to be seen every 2 weeks]. My health was looking gloomy and that was the moment Dr Henderson said I need to refer you to pregnancy specialists at the University of Washington. My first appointment was made.
It was my day to visit the university, and they got right on top of taking lots of tests on myself and my angel. It seemed like a whirlwind. I got to see lots of pictures of you and my heart just melted. I was so in love. They decided I needed to have medications and a procedure done called a placental blood circulation. It was uncomfortable and painful for me, but I was assured it wouldn't hurt my baby. I had four procedures done over the weeks and the medication they put me on was making me feel awful. My fifth appointment at the university the doctor did his testing then asked to put me in a room. I told him I can't stay long because I have other kids and they are about to get out of school. He understood and told me we needed to have a serious talk. I needed to consider an abortion. A WHAT??!! I said "No, I'm too far along." He explained it is a special procedure in which I would give birth but she would be wrapped in seaweed as she is delivered and it would be considered a stillbirth (yes, you read that right). I told him absolutely NOT. I will go as far as I can in the pregnancy. I never returned back to the university again. I was disgusted, offended, and didn't understand why they wanted me to kill my daughter.
Fast forward to February 2,2007. I still saw my regular OB in Seattle, I went in for my weekly appointment and checked if I was dilating. I was not. The doctor made no indications that something was wrong. I heard her heartbeat and it was strong. She just wasn't growing like she should be which would mean time in the NICU. February 3rd is here, It's my birthday and I get a call from the doctor saying we need to get admitted ASAP. Kylee's dad and I were confused, What changed from yesterday? When we got to the hospital they immediately got an ultrasound machine and her heartbeat was barely there. It was time to induce quickly.
Kylee Kay Miller was born February 3, 2007 weighing 3 pounds 5 ounces and was 18 inches long. She passed just after she was born so she was considered deceased February 4, 2007.
We didn't get any answers as to why this happened. They brought her into our room wrapped up. She was stone cold. Not crying for her parents or making any noise. Her dad and I both held her, cried together and alone. Her Aunt Nikki came and held her and said her goodbyes as well as a couple of our co workers. It was and has been a painful day for the last 11 years. I long to touch her, hold her, see all her accomplishments she would have made over the last 11 years. Over the years I have come to terms with what happened, why it happened and it has left a hole in my heart.
We love you Kylee and I hope our story can help any other family that has gone through or is currently grieving the loss of their baby.
A Poem for Kylee
These words of love are for you, Our beautiful little daughter who never had a chance to bloom in this life.
You were a seed that grew in my womb, That never let the sun spread your joy to a world of our love for you.
We miss your life with us but will always have our own quiet and peaceful memories of you as you lay still. Your father and I, our spirit at that moment blessing your small being with all of our hearts.
Kylee Kay we will love you always,
Please let your own spirit be free and full, Knowing that someday in heaven all our spirits will shine in the sun together, and our grief will be no more.
Written by Sawyer's Mom, Deidrah Sturman
All my life, I've wanted to have babies. To get married and have a beautiful family of my own. To be a mommy. Shortly after marrying the love of my life, I gave birth to our first child, Kennedy Rose. It was the best feeling in the world to see the two of us combined into one tiny human being.
It was a love that neither of us had felt before. A year and a half later, we decided we would complete our family with one more child. That's where Sawyer Marie came into our lives.
My pregnancy with Sawyer was flawless and text book. All her tests were always normal and she was so healthy. Constantly measuring 3 weeks ahead; never showing a single sign that she wasn't going to make it earth side alive. Until the day, at 35 weeks, I stopped feeling her move. Which was not normal for my active little joy.
The drive to the hospital for reassurance that she was ok was long. I laid in that hospital bed while the nurse tried for what felt like an hour to find her heartbeat. I knew by the look on her face that our baby was gone. She went and got the doctor (because she can't tell me that) and he searched for himself. I knew by looking up at that ultrasound machine that the flicker of life that was once there, was no longer. There was no movement in the picture of her heart. I asked him, "she's gone, isn't she?" And all he could muster up the strength to say was, "I can't find a beat, I'm so sorry." My body instantly went numb. My whole world crumbled in those words. I looked down at my tummy, so big and full yet so empty at the same time.
With my body already going into labor, it was time to give birth to my angel. I was so scared yet so strong in those next 13 hours. When Sawyer came earth side, she was absolutely BEAUTIFUL. Curly brown hair and flawless porcelain skin. She was breathtaking.
The time we had with her was not long enough; Her body quickly changing from the lack of life inside of it. The moment I had to give her up felt like she was being ripped away from me yet again. But it was time to rest her little body in peace. I've learned a lot from that beautiful baby girl. About life and love. And for that, I'm forever grateful.
I will tell you one thing, once you give birth to death, you will never be the same.
A Letter to Sawyer
Written by Mom, Deidrah Sturman, and read by Sawyer's Uncle at her funeral
My precious Sawyer, my sweet baby girl. Where do I begin?
Last summer, I knew I was ready for baby number two. It took a few months of convincing your daddy, but he finally wanted to complete our family too. We tried for a while with no luck. Mommy quickly became impatient (as I usually do with most things), and a few boxes of ovulation tests later, there you were! Those two perfect pink lines we had been waiting for. We were so excited. Over the next couple months, we watched my belly grow and knew you were going to be big and strong. At my 20 week ultrasound, we found out you were a girl. Daddy was now completely outnumbered. He loved the fact he was going to be the king of the house. He was going to have 3 crazy girls on his hands, and he wouldn't want it any other way.
Then I started to feel you kick your perfect little feet. And you never stopped. Your movements were crazy Inside me. Like you were a one man band playing every instrument at once. I would push on you and you would kick back in such a sassy manner. Just like your big sister. So very sassy. You especially loved your daddy's voice. He often talked to you and let you know how much he loved you, and you squirmed around like you knew exactly what he was saying. Speaking of your big sister, she was ecstatic you were coming to join us. She practiced on her baby dolls, and often fed you with one of her fake bottles through my belly button. She kissed you and rubbed you daily, and with big wide eyes would yell, "sister Sawyer!" She would have been so good to you and the best big sister ever.
Working the super early morning shifts everyday at work was never easy, but I was never alone with you. As soon as I opened my eyes at 3 something in the morning, there you were. Saying good morning to mommy. We would go to work and open the coffee bar together, listening to Tim McGraw radio on Pandora. You were going to be my country girl, weather daddy liked it or not. Last Thursday, I woke up for work like any other day, but you didn't say good morning. I didn't think much of it; you were probably just really sleepy. As the day went on, my body just felt terrible. You still hadn't said anything to me and I was having mild contractions, so we went to labor and delivery just to make sure everything was ok. I was sure it was, but it wasn't.
Your little heart had stopped beating, you were no longer with us. Hearing that news was horrifying. Why you? Why our baby Sawyer? My heart screamed for you, for it to be a mistake. There are no answers, my love. You were just too incredible to be anywhere except for the hands of God. I then was admitted and prepped for delivery. I opted out of an epidural because I wanted to feel everything. Every intense pain of the labor process. I wanted that full experience with you. You deserved to be felt. I was so scared knowing that you would not be taking your first breath when you came earth side. I would never hear you cry. You would never open your eyes. When they laid you on my chest, you were so incredibly beautiful. I had never seen such a perfect baby in my life. Your skin was so soft. You had the most perfect little toes, and lots of curly hair. I really did give birth to an angel. You looked just like big sister Kennedy.
You were surrounded by so much love in that hospital room. We all took turns holding you, and I never, ever wanted to let you go. Although I don't get to have you physically, you will always be with me. Your heart will beat on in mine, and I will live everyday being the best me I can be for you. I won't get to change your diapers, feed your little mouth or hear your laughter, but you are in way better hands than mine. Every day will be a struggle without you and I will constantly have to learn to cope, but you're in paradise now. Save me a spot in heaven, my sweet girl. I'll meet you there and I'll never let you go. I will love you forever, Sawyer Marie.
Written by Mom, Stephanie Warren
August 10th, 2014 my world was turned upside down, and will never be the same! At about 5 a.m. my water broke while I was sleeping. I felt a large gush of water, a little pressure and then another gush of water. I woke J.C. and told him that my water had just broke, he thought I was talking in my sleep. He lifted the blankets, and sure enough my water had indeed broke and I was in a huge puddle of water!!! He immediately got up and got dressed. I made my way to the bathroom, I was going to get in the shower before we headed to the hospital. I got on the toilet to dry myself but when I went to wipe, I felt something. I didn't know what it was so I immediately yelled at J.C., he came to look.... it was part of the umbilical cord. He called the hospital and they said to get here QUICK!! I called Robyne Zollinger, our neighbor, with one phone, while J.C. called his mom on the other phone to come over and get the kids. Robyne was closer and could be here the quickest. We also called my mom and dad while we were on the way to the hospital. I didn't get an answer, so I kept calling... still no answer, so I sent them both a text message.
We got to the hospital and they were waiting in the parking lot for us. They had a bed slanted in the down position, I got on the bed, hanging upside down. The nurse stripped my pants off in the parking lot, jumped on the bed with me, and shoved her hand up my vagina. She was trying to get pressure off the cord so the baby could still get oxygen, since the cord gives the baby everything they need. I was then rushed down hallways into the OR where Dr. Cannon was waiting to perform an emercency c-section. I remember hanging on for dear life trying not to fall off the bed while being wheeled through the hospital, the lights on the ceiling were flashing, I finally had to close my eyes because all the movement was making me sick. The nurse also cut my shirt off in order for surgery. I remember asking the nurse if I was going to be able to deliver vaginally, and she said no we have to do emergency surgery. I was scared at this point, but I don't remember anything after this point.
I woke up to the lights flickering again, and hear noise in the background with people talking but can't understand what they are talking about. I was in the recovery room. I was shaking, my jaw felt like lock jaw, and my right elbow ached. Next, thing I know I was being wheeled around again in the hospital, I end up in the ICU now. While in surgery, my heart beat had dropped really low, and I was having abnormal heart rhythmns. So, I was sent to the ICU in order to monitor my heart.
I had learned that I had indeed gave birth to a little boy at 5:42 a.m. He was 5 pounds 12 ounces and 18 inches long, but he wasn't doing good and was being prepped to be life flighted to Boise to be in the NICU. The nurses did tell me that I was going to be able to at least see my baby before he would leave. They brought our baby in a little glass cage, I was only able to touch him for a few minutes. I felt devistated, there was nothing I could do for him!! To see him like that broke my heart, but I knew he would get the best care that he needed. We didn't know what was wrong just that he was being moved to Boise.
Meanwhile, J.C. didn't know what was going on with me, but he was able to go be with the baby in the nursery. J.C. was also able to go in the ambulance while they took the baby to the airport to transport him to Boise.
I didn't see J.C. until I was in the ICU. I remember thinking in the OR, "Where is my husband, and is my baby OK?" but I can't remember much of what was told to me. I was in the ICU and asked J.C. if he ever got a hold of my parents, he said, "NO." I tried calling them again, and still no answer, and still no response from text messages. I was sooo upset that I could not get a hold of them, I needed them!!! I finally had J.C. call Grandma to go see where they were and why my parents had not answered their phones!! We finally got a hold of my parents, and they came to Burley to the hospital and checked on me. Then my parents left to go to Boise for us to be with our baby, since I was stuck in the hospital and J.C. would not leave my side. When my parents got to Boise, I asked if they would contact someone and get the baby a blessing. The hospital had a list of LDS members they could call, and they were able to go to the hospital and bless our baby.
I called Robyne Sunday afternoon to see if Jon Zollinger would come give me a priesthood blessing, and they came with no questions asked. Soon Jon and Trevor Stapleman showed up with open arms and gave me a blessing. I know this helped me with the trials I was being faced with and also the trials to come!
While I was in the ICU, I was on morphine for pain from the surgery. My magnesium level was also really low, so I was given 2-3 bags through my IV. I was not myself and felt really wierd I could not concentrate, was very jittery, and could not sleep. I would be awake every 10-15 minutes and not know where or what I was doing! I was also having to get EKG completed every 6 hours to monitor my heart, which consisted of having blood drawn and stickers placed in about 7 locations on my chest and then a scan taken from the heart. I also had pressure belt socks on my calves and legs to help circulate blood flow through my legs so I would not get blood clots. Dr. Spackman was the heart doctor taking care of me. I spent the night in the ICU and was released back to Labor and Delivery Monday afternoon.
I could not get out of bed by myself, my legs were dead. I remember trying to lift them and I could not move them. But once I had my legs over the side of the bed, I had to stand there for a few minutes and let things settle, then I could slowly make my way to the bathroom. The doctors wanted me to try to start walking soon, in order to help the healing process and to prevent blood clots. I was pretty out of it while on the morphine, I remember telling the nurse just to leave the light off, close the door, and put my ear plugs in and just slept. I felt a lot better when I was off the morphine and was not getting magnesium.
After the baby was in Boise, we talked with the Doctor. They told us the baby possibly had brain damage but they did not know for sure. They also were "cooling" the baby in order to keep brain activity low. Monday afternoon I walked slowly to the Labor and Delivery department where I stayed until Tuesday morning. While here, I basically just slept as well. I was having troubles sleeping, so the nurse got me some nausea medicine and a side effect to that pill was being tired and sleepy. It was still hard trying to sleep knowing that my baby was in Boise and not knowing anything or having my baby with me!!
We finally decided on a name for the baby. His name is Axel J Warren. We had two names picked out, and for weeks prior to his birth we had been asking the kids what we should name their brother. For the longest time it was "Baby Brother." We took a family vacation the middle of July, and when we got back, all of a sudden the kids started calling the baby "Axel." I told J.C. since the kids had been calling him Axel, maybe we should call him Axel so the kids would not be confused if we changed his name. So that is how Axel got his name. Axel means "father of peace."
Jeanette brought the kids to see us while we were in the hospital. They knew their baby brother had been born and wanted to see him, but they were disappointed when we wasn't with us. We just told them that Axel was really sick and was in a different hospital but mommy and daddy would go see him soon! They were ok with that. So Tuesday morning rolls around, I get released from the hospital. J.C. and I head home long enough to get some clean clothes and another bag packed, food loaded in the 5th wheel camper and head to Boise to be with Axel. We didn't know how long we would be there or what was going on either. We finally arrive in Boise that evening, to find our precious Axel hooked up to many machines, and on a ventilator to help with breathing. The doctor informed us that they still were not sure about the brain damage, but there was a MRI scheduled for Thursday, August 14. Wednesday, when we arrived at the hospital we learned that Axel had also been having a few seizures, so he was being monitored with an EEG, which looked like he had a gauge wrapped around his head with blue tape holding the gauge in place. He also was continuing to have his body temperature cooled. The Elder's that went to the hospital on Sunday to bless Axel, came again on Wednesday to visit us and see how things were going. I asked them to give myself, J.C., and Axel another blessing, and to be with the doctors and staff, and for the MRI to go well.
We were told that the doctors were going to start warming Axel's body and if all went well with that, he should be up to body temperature by 6:15 p.m. and that I would FINALLY be able to hold my baby for the first time!!! I could hardly stand the wait, and would not leave the hospital. The nurses would increase Axel's body temperature 0.5 degrees an hour. It was almost 9 p.m. until I was able to hold our baby, between shift changes and different things. I just held Axel for hours, I didn't want to let him go!! I remember just staring and crying for my baby, not knowing all that is going on. I sooo badly want to kangaroo cuddle him, but that was just not an option. I even fell a sleep while holding Axel, I just didn't care about anything, I had everything I wanted at that moment! After a few hours, I decided we should go, I was pretty exhausted and starving since we did not leave and get dinner, but I was SOOO EXCITED to FINALLY hold my baby for the first time!!!
Thursday, the MRI was scheduled for 10 a.m. I wanted to be in the hospital to see Axel before the doctors took him off for the MRI. The MRI would probably last about 2 hours to complete with all the transporting involved. We get to the hospital probably 9 or 9:30 a.m. and get informed that the MRI has been postponed a little due to an emergency. So we just waited and waited, and then told it may be later that afternoon before getting MRI done. J.C. and I decide to go back to the camper to get some lunch while waiting. We get lunch and start to head back when mom texts us to tell us Axel just barely left for the MRI. So we stayed at the camper and rested for a little bit. Axel finally gets back from the MRI around 3:30 p.m. We wait for the report to be read and then we have a consultation with all the doctors for the results. There were a lot of people in the meeting with us: Dr. Scott Snyder, Dr. Fry, Nick (nurse), a patient coordinator, Gene and RoseAnn Vaughan(my parents), Paige Calhoun. The doctors came right out and told us all the facts. Basically, Axel did indeed have severe/global brain damage. They said usually when they see umbilical cord prolapse, damage is done to the organs like the kidney and the liver, and then a little damage to the brain... but in Axel's case ALL the damage went to his brain.
We were faced with MANY tough choices at this point. If Axel were to survive, it would mean he would be in a wheel chair, need a feeding tube, and a breathing machine, and could be blind, deaf, and the most interaction we would have with him might be a smile if at most. He would need 24 hour care. My heart just sank, and I think I blanked out most of what the doctors said, not wanting to believe another word they told us!!! I was sick to my stomach knowing that our precious baby was having soo many difficulties! and WHY??? What did we do? I'm so glad that my parents were there with us, because they were able to ask the doctors questions we DID NOT want to ask, or couldn't ask like, "Will Axel survive", "Is there any chance that Axel will have any type of normal life", "Is he sufforing now", "What kind of quality of life would Axel have", "If we pulled life support, how long would Axel live", "Would Axel be able to donate organs" we had sooo many questions going through our head at this point it was hard to concentrate on ANYTHING! We just sat and talked with the doctors for a while, then they left us to be with our family. The doctors told us it was not a decision that had to be made at that moment, but depending on our choice we would have to make more decisions like... If Axel were to be kept alive, he would need surgery right away, which poses a risk of even surviving the surgery; and if we were to remove life support, then we would need to make decisions about organ donations if that was something we were interested in. The decided we would meet with the doctors on Friday to let them know our decision. We were all heart broken and devastated! J.C. and I would not want to live life if there was no quality of life in the future. Our parents would not tell us what to do, and couldn't make any type of decision for us. My parents and Paige left J.C. and I to ourselves. My Mom went and called J.C.'s mom and told her they needed to come to Boise ASAP that we needed them, they could not come until Friday morning. We needed to sleep on things, the hospital was able to get a room in the NICU for J.C. and I. I didn't sleep at all that night!!
J.C.'s parents got to Boise around 8a.m. Friday morning, we had approved for them to go visit and hold Axel and know any information that wanted. J.C. and I were not moving very fast that morning. We finally met up with our families to discuss what we were going to do for Axel. My parents told us if we decided to keep Axel alive they would sell thier house and move closer to help us since Axel would need 24 hour care. J.C. and I knew in our hearts that we couldn't let Axel suffer and live with no quality of life!!! The decision was made to pull life support. This was the HARDEST decision we have ever made. We met with the doctors on Friday to let them know we were going to remove life support on Saturday. We wanted to give Axel a name and a blessing. We made some phone calls and got permission from our Bishop to let J.C. and my dad stand in the circle for the blessing, this had to be approved since they were not active members in the church. Our kids were at either Robyne's or Derk and Amy's house, we wanted them in Boise with us. We called Derk and Amy, to see if Derk would stand in the circle to bless Axel and also if they would bring our kids to Boise. We asked them to be in Boise by 11 a.m. The doctor told us when we remove life support, Axel could live for minutes, hours, days, or even possibly weeks. We were all praying that he would know it was his time and we were ok with the decision and that he would go quickly and not suffer! We all went and snuggled Axel. As each one of us held his, his spirit was sooo strong with us, it was like he told each one of us goodbye, and then his spirit was gone. We were all at peace and knew it was right!
Saturday was all about Axel... We had him named and blessed; had a professional come to take pictures; and also Harlee, Hudson, and Cameron were able to meet Axel for the first time! Axel was blessed by Merle Warren and others who stood in the circle were Derk Despain, Gene Vaughan, and J.C. We didn't tell the kids Axel was not going to be with us much longer, we just let them LOVE their brother. We counted his fingers and toes. Hudson also says, "Does Axel have a weiner? I want to see his weiner!" Everyone got a good laugh, even the photographer who was snapping pictures! We didn't look at his weiner though. Harlee wanted to hear Axel cry, and I wished I could have too, but I just told her he couldn't cry because of the tube in his mouth. The kids were all able to hold and love Axel, and they wanted to play cars and trucks with Axel, they each rounded up a toy car from the toy room and played cars. It was the most precious thing I have seen!! The kids were sooo excited to see Axel. We had soo many people in the NICU on Saturday.. J.C., myself, Harlee, Hudson, and Cameron; Gene and RoseAnn Vaughan; Merle and Jeanette Warren; Samantha Hawkins; J.J., D Ann, Robbie and Richie Vaughan; Trisha, Brian, Trey and Ally Gronenthal; Paige Calhoun; Derk, Amy and Shae Despain; and Jon Wilson. I didn't want the kids to be at the hospital when we removes the life support, so Sam and Paige took the kids for the afternoon. They went to the park and then went and spent the night at Aunt Paige's house and had a blast!! They petted the horses, fed the chicken, ate tomatoes from the garden, and I don't know what else! J.C. and I left the hospital grounds and got some lunch because the plan was after we ate to go back to the hospital and remove the life support. Our parents had went back to the camper to eat as well, but J.C. and I just needed to leave and have some time together to think. After eating, we went to the camper to pick up our parents and head back to the hospital, which I was dreading!
Our parent's were outside of Axel's room waiting. The doctor's waited for our ok to move forward with removing the life support. How can anyone be ready for this!?! I bawled as they removed the tubes. I couldn't control myself. The doctors gave Axel a shot of morphine, so that he would not be suffering when they removed life support. After they removed the tubes, Axel was placed in J.C. and I's arms, we just held him and told him how much we loved him, that things would be ok, that Axel needed to ALWAYS watch over us especially his sister and brothers, to fly high, and that it was ok he could we were ok with that decision. Axel took a few breaths, but it was not long, and I stopped crying and was comforted with a peaceful feeling; it was that moment that Axel had passed away. I remember looking at Axel, and it looked like he had a tear of joy in his eye. Axel became an angel at 5:45 p.m. on Saturday, August 16, 2014 in Boise, Idaho. Our parents also knew the exact moment Axel passed away before the doctor had told them, it was like his little spirit was with J.C. and I and then went outside the room to our parents and then went on to Heaven. The doctor told us Axel had passed away a lot sooner than what they had anticipated, which was a good thing. I will never forget watching our baby take his last breath! It was also a very cherished moment, I'm glad we were able to be there with our baby in the end.
He was so perfect, it is just really hard to understand "WHY?" I know without a doubt that Axel lived for 6 days, in order to meet his sister and brothers, and soo many family members!! After Axel passed away, we just held him, the doctor just stayed with us and talked and cried with us. Our parents came in after Axel passed as well, and loved J.C. and I and then snuggled our Angel again.
The hospital has some volunteer programs that offer services to patients who have babies pass away. One program was "Now I Lay Me Down To Sleep" it was a professional photographer who came and took pictures for us. Chad, the photographer, was so sweet and came and took pictures of the kids and us, but then he also came back and took pictures after Axel passed away. I will cherish them forever! The other program was a guy who makes plaster moldings of the hands and feet, and puts them on a plaque with the baby's name and dates. They are precious!
Written by Mom, Stephanie Warren