Ella was born at 38 weeks and appeared perfectly healthy! I had a normal pregnancy and delivery with no issues. She did have to get an ultra sound at 2 weeks old where there was concern about a small dimple on her lower back and they were not sure if her spinal chord had fused or not. Thankfully it was fine. When Ella was about 7 months old she started getting ear infections, and by her first birthday she had already had about 8. So shortly after her first birthday she received her first set of tubes. After tubes she was still getting ear infections, along with 2-3 ruptured eardrums and by her 3rd birthday she needed another set of tubes. I also just want to put a disclaimer that I try to be as natural as possible, we were also using oils, chiropractic care and anything else I could try.
At the time we were living in Los Angeles and did not have the greatest insurance because my husband was self-employed. At one of Ella’s ear infection check ups, which I forgot to add that because of so many doctor appointments, Ella was a challenge to take to any doctor appointment. She screamed from the time we walked in the door until we were back in the car. Seriously top of her lungs! Anyway back to the appointment…the doctor had mentioned he thought she may have Turner Syndrome and was sending her to a genetic specialist. So I did what any mom would do and went home to Google! We then saw the specialist and he looked her over for about 15 minutes examining her arms and legs, asking Jason and I both questions about our family history, and many other questions. At the end of the appointment he said “I don’t think she has Turner Syndrome, mom and dad are not very tall and I don’t think she has enough physical characteristics.” So he did not request the blood test. I said ok great, nice to meet you and off we went. Today when I think back to this appointment I always think why did I not request the blood test?! Well to be honest Beckett was maybe 6 weeks old so I was only half way thinking normal with the lack of sleep and I think we put a lot of trust in our doctors.
So fast forward a year later, we moved back to Nashville to be close to family. We finally had good insurance and a month after we moved I took Ella to her 4-year check up. At that check up is when the doctor heard the murmur, which led to discovering her coarctation and need for open heart surgery. Although it was one of the scariest days of my life, I’m so thankful for her team of doctors and support we had at Vanderbilt Children’s for her surgery. I had remembered reading in my Google search from a year ago about how heart conditions were common with girls with TS, so I asked my pediatrician to do the blood test. He said he would but he did not think that she had it. I also asked my cardiologist and he had the same response, “I don’t think she has it.”
I share all of that to say that you know that “mom gut” we all have? Well I’m thankful for once I listened to mine and continued to ask for the test. A few weeks after Ella’s heart surgery our pediatrician called and I’ll never forget, he said, “I’m honestly surprised, but her test came back positive.” This then led to a list of routine doctors where we learned so much more.
Turner Syndrome affects 1 in 2500 girls. And like most girls with TS we began to see a lot of doctors. We had already handled multiple ear infections with ENT as well as audiology, coarctation of the aorta repair along with a bicuspid valve with our cardiologist, we learned Ella has a horse-shoe shaped kidney that continues to be monitored for hydronephrosis by her nephrologist, ophthalmologist where we learned her left eye was delayed in development and she began to wear glasses, but thank fully has now corrected itself. We also see endocrinology where we learned about non-functioning ovaries and how she will need estrogen and progesterone for puberty. Currently she also takes daily growth hormone injections to help her grow after falling off the growth chart. Her endocrinologist also monitors her thyroid because girls with TS have a higher risk of hypothyroidism, autoimmune diseases like hashimotos, celiac disease, and Type 1 diabetes. So she spends a lot of time getting poked and blood drawn. We also see an orthopedic to help monitor her knees and growth development. Last summer Ella had plates inserted to help with dislocation, and will have another surgery later this year to remove the plates. I often joke about how we need a frequent buyer card at Vanderbilt. I’m very thankful that we do have some of the best doctors looking after her, but it does get exhausting.
Although she has been through a lot, I’m always encouraged and amazed with her determination. I’m also thankful that I can say I’ve truly seen God’s hand in every step of the way. So even when days seem hard, keep trusting, he’s always there!
After a traumatic first pregnancy and birth of her first son, Misty was told by 3 different doctors there was no need to worry about future pregnancies. It wasn't until she was 5 weeks pregnant with her second son, Steele, that she started experiencing complications. The bleeding lasted the majority of her pregnancy until sweet Steele was born
"We did an amniocentesis to ensure he was sick and he was so-very sick. We had a choice to end our pregnancy or keep going with the high possibility I would die. I couldn’t make that choice and they gave us several hours to decide on a plan. During those hours God intervened in a big way my water broke and long story short at that point Steele was delivered stillborn but still so loved. We never had to choose and God knew we couldn’t. Why he saved me and not him I will never know but I know God showed us grace that day. Grace on so many different levels. Our sweet angel Steele Scott Robinson was born at 20 weeks and 2 days on June 23rd at 9:50 am. Our sweet Steele should be coming home to his mother, father, and awesome big brother in 14 weeks but he’s with the angels instead."
Please join us in praying for Misty and her family as she recovers emotionally and psychically. Because of your support, we are able to serve Misty and remind her she is loved. Misty's hope is to be able to one day give back in Steele's name for God's glory. If you'd like to reach out and encourage or support Misty, she can be contacted here.
I always remember driving by a gas station in town and seeing moms and dads exchange their kids. It must have been “the meeting place” for separated parents. I remember thinking “I don’t ever want my kids to have to go through that”, well little did I know that a few years later I’d be doing the same thing. Have you ever heard the saying “When we make plans, God laughs?” Well, he must have been cracking up with me.
I was 3 months pregnant before we got married and not too late after that I was pregnant with another baby. I was miserable. I thought because I was pregnant, I had to get married. We were married for 4 years before I realized the manipulation, cheating and the abuse wasn’t normal in marriage. When I decided to leave, I found out I was pregnant with my 3rd daughter. The fear of being a single mom with no money and having another baby set in. I struggled with the thought of abortion and I truly believed that I couldn’t make it if I kept that baby. God reminded me otherwise and showed me His faithfulness.
When my youngest daughter was 3 months old, I met my current husband while I was having dinner at a restaurant with a girlfriend. I always told myself “no man in his right mind will date a women with 3 kids! Let alone one of them being a newborn!” (Again God laughed) Fast forward 5 years and today I am so thankful to say that I am happily married to that man from the restaurant now for 4 years and we had had another baby together. We just got full custody of my older 3 girls and soon my husband will be adopting them as his own.
Remember, God will always use a situation for His glory. I’ve learned to never doubt how great our God is. You do not have to carry the shame of your past anymore. You are cleaned from that and ALL THINGS are made new.
I am a 17-time felon. A life of drugs and crime caused me to be homeless and lose custody of my children. My story is not pretty, but it is real and I hope it provides a glimpse at what is possible when you forgive your past and focus on your future.
My father passed away when I was just six years old leaving my mother to care for six children including myself. She worked two jobs to support us which meant that we spent most of our days at the local community center. We lived in a decent home but being unable to keep it up it began to deteriorate with holes in the floors, a roof that was falling in, and no heat or air conditioning. I can remember my mom placing hot water bottles on all of her children’s feet at night to keep them warm. Although we struggled, our clothes were always clean, our bellies fed, and we were loved without question.
My oldest brother became the father figure of the family. He had a positive impact on me and helped support my mom in her efforts to raise us. He was shot and killed while on duty at work. This traumatized me and became a significant source of depression. I was fifteen when this occurred and stopped going to school as a result. I didn’t want to engage with anyone. Ultimately, I do not feel that I would have fallen into substance abuse had it not been for this event.
After some time, I went back to school and joined the basketball team. I had found my calling, and received all city and all state MVP my senior year which resulted in several scholarship offers. I didn’t have a parent that knew about achieving a college education and felt overwhelmed at the opportunities that were being presented to me. I chose to attend a community college to stay close to home and help my mother. In my second year of college, I became pregnant with my first child. Three years later I entered into a life of addiction.
I used drugs for the first time in my twenties, but by thirty-two I was in jail multiple times and lost custody of my children. My longest stint in jail was 3 years. My mother was of course disapproving of the life I was leading, but still through everything my mother never stopped encouraging me to do better.
When I started using I stopped going to church. I was ashamed of the life I was leading but too immersed in it to quit. While in prison I was fortunate to have some role models that didn’t give up on me. A volunteer named Ms. Dezi kept encouraging me to go to church service. My counselor Ali Marlow, saw that I was scared to change, and told me I didn’t have anybody to answer to but God. This encouragement stuck with me and impacted the changes that I would make in my life.
I was released from prison for the last time on April 27, 1997 with only the clothes on my back. I was driven to a halfway house where the women were selfless and kind. They offered their bus passes when I didn’t have transportation to get to work. Someone dropped off a bag of freshly laundered used clothing in my size. These blessings continued. God was shining a light on me through his people. I started to develop a personal relationship with Him and knew that He loved me just where I was.
After some time in recovery, I started to rebuild my life. I started a cleaning business and was able to eventually buy a home. I received custody of my children again. Life was looking up, but I saw such a great need for support for women trying to re-enter society after a life of substance abuse. I didn’t want to sit idly by so I decided to pour into others as they had poured into me. I offered a room in my home to one woman coming out of prison. I made sure that she was working a recovery program, had food to eat, transportation, and helped her to rebuild her confidence in her ability to overcome the hardships she had been through. I was once told that “when a student is ready, the teacher will appear.” I wanted to be there to help women like me who were ready.
That small program I began in 2003 led me to develop Mending Hearts, a nonprofit organization in Nashville that has now served over 5000 women. We are a long-term treatment facility that offers hope and healing to women in a supportive community environment - regardless of their ability to pay. It was important to me that we address the whole woman and her needs beyond her substance abuse disorder.
The stigma of addiction is trying on the soul. It’s especially difficult for women who are typically seen as caretakers. To address this issue Mending Hearts started National Women Touched by Addiction Day that will take place every July 23rd. This is a movement to provide education, open conversations, and build resilience to understand this disease and its impact on not just the woman that has faced addiction first hand, but also those that have felt its effects through others.
We all go through the challenging times and can look back at what a mess we’ve made. God has taken my mess and turned it into a message. I don’t just have faith in myself now I have faith in others. I will continue to right my wrongs and lift up my community and the women in it. Through His grace I have been forgiven and that extension of love will always be at the forefront of my personal mission.
My ex-husband and I were young when we married and even younger when we had our three
children. We were high school sweethearts that grew up together and from the outside looking in; we had the classic teenage love story.
But things are not always what they seem, and behind that love story, there was a relationship
filled with pain and riddled with abuse and infidelities. However, I was committed to "fixing" our relationship mainly because I was convinced that raising my children in a two-parent household was best for them.
So, we spent years in and out of marriage counseling and had even weathered a separation.
During which my ex-husband completed a batterers intervention program, and we attended
family counseling. And there were times when I thought that the worst was behind us and that my ex-husband had genuinely changed.
But the same issues continued to resurface and became extremely loud during the pandemic.
I finally realized that having a two-parent household isn't enough. I wanted my children to have a
physically and emotionally safe home and see parents who are happy and healthy modeling
I knew the only way to do this was to file for a divorce. Now here I am, seven months later, divorced and raising my children alone. If you had told me that my children would go seven months without seeing their Dad and that I would be parenting 100 percent of the time alone, I wouldn't believe you, but this is my reality.
The first few months were a mess, and when my kids were sleeping, I cried, I screamed, I
yelled, I worried, and I prayed. I worried about how I would provide for my children, and I worried how the divorce would affect them. I worried if my sons would miss out on moments with their Dad that would help mold them into the men they are designed to be. And if my daughter would choose a partner that modeled similar bad behavior to her Dad.
More than anything, I worried if I was enough to sustain my children physically, emotionally,
financially, and spiritually. Then one night, during one of my meltdowns, I heard clearly from God that I didn't need to worry and that everything was already working out for our good.
That night I had my first good night's sleep in months. Over the next few months, I realized that my life was not destroyed, it was just disrupted, and God uses our disruptions as a catalyst to change our situations and restore us. The transition into single motherhood has been tough for sure, but there has also been peace and joy during the storm.
I have seen God show up for my kids and me in big ways. And Slowly but surely, we are working towards healing and restoration. In my most challenging moments, I remember that I am not walking alone and that there are so many more beautiful days ahead.
Meet Emily Long from Helen James Foundation
At 38 weeks pregnant, my husband, Joel and I heard the words every expecting parent fears, there is no heartbeat. The shock and terror of that moment is truly indescribable. I have never felt so scared in my life. There we were looking at our baby girl, Helen James , on an ultrasound machine. We could see her, but the heartbeat and life that had been so vivid for 38 weeks was gone. In the blink of an eye, Joel and I had lost our daughter.
Helen was a very active baby and moved constantly. On June 4 when she didn’t move after dinner, I knew something was seriously wrong.. We called my OB group who advised us to come to the hospital. I delivered Helen via C-section during the early morning hours on June 5 at Saint Thomas Midtown Hospital in Nashville. From the surgery to the aftermath, the nurses and doctors were simply amazing. I will never forget them telling us that we had a beautiful baby girl. The cause of Helen’s death was never determined. There were no visible signs of issues with the umbilical cord or placenta during the C-section. We chose to have an autopsy, but that also did not provide any answers. I’m not sure that a concrete cause would have provided us the closure we needed, but we knew we had to try to find out what happened.
Following the C-section, there was mention that Helen could be in our hospital room with us. Joel and I could not comprehend what the nurses were saying. The shock, lack of sleep and pain medication numbed my senses to the full magnitude of what was happening around us. But then a nurse brought Helen to our room around 6 a.m. and said that she could stay with us as long as we wanted her there.
The hours went by, and we did not want to let her go, so the staff set up something they referred to as a cooling blanket, which was set up in a crib and was so discreet you would never have never known it was there. This Cuddle Cot became a lifeline to our daughter. Over the course of three days, our family and friends traveled from all over the country and as far as Panama where my sister lives to come and meet Helen James. Our hospital room was filled with emotions – tears and sadness and heartbreak, but there were also moments of laughter and love. While the experience was beyond painful, it was also one filled with hope.
The Cuddle Cot gave our family and friends a way to both rejoice and mourn over our daughter in the same moment, to hold and kiss her and to love her. We are so thankful that Saint Thomas Hospital had a Cuddle Cot, and that we were given this additional time with Helen James. We believe it was a crucial part of our acceptance, grieving and healing, and we cannot imagine our situation without it.
We were sad to find out that very few grieving parents will have access to Cuddle Cots. The device is practically unavailable in most hospitals, despite 24,000 babies being stillborn in the U.S. every year, which is 10 times as many deaths as those that result from SIDS. In our case, the Cuddle Cot was donated by a family who had been in a similar situation in the past. A huge part of our healing process has been having a mission — somewhere to funnel our grief and confusion and love and energy. Joel and I decided to honor our daughter by creating the Helen James Foundation. Its mission is simple: To support grieving families who are experiencing a pregnancy or infant loss. We have focused on Cuddle Cot donations across the state of Tennessee and in Chicago. Additionally, we donated funds to the Saint Thomas Midtown Hospital to help with the construction of a new Family Bereavement Room. This room provides families who have lost a child a place inside the labor and delivery unit to spend time with their baby. They will be able to give their child a bath, dress them and create hand and foot imprints keepsakes in a private space. We plan to continue raising funds for Cuddle Cots and also to support families through donations for grief counseling and support groups.
We recently added infertility to the foundation’s mission in January of 2021. Our hearts have been heavy as we have walked beside our friends who have experienced this. Our hope is that we can help raise awareness and support and be advocates for those experiencing the difficult journey of infertility.
Joel and I will always cherish our first-born child and forever remember the ways that Helen has taught us to love and hold tightly to one another. We hope our story brings much needed attention to this rare, but life-changing Cuddle Cot device that gives grieving parents like us the gift of time. We also hope that we can be a source of support for parents experiencing pregnancy and infant loss or for those who are hoping to become parents.
We love you always and forever, Helen James, and we are so thankful to be your parents.
I was sitting in my absolute favorite place… toes in the sand with nothing but the expanse of the emerald waters of the gulf coast before me. To my right, my husband was drifting in and out of sleep. All around me the sound of my four kids and their friends enjoying the first day of our summer beach vacation.
My cell phone vibrated and my gynecology office number popped up. Ah, the obligatory phone call to inform me that everything looks good, but because of my dense breast tissue I’ll be receiving a letter to notify me.
I answered and Brandi explained, “something...something...anomaly...can you come in first thing Monday for an ultrasound?”
“Monday...ummm no. We are at the beach for the next week. You know I have dense breast tissue so I’m sure it's just ummm dense breast tissue.”
Brandi asked me to hold for one minute while she spoke to the doctor. She got back on the phone and explained, “the doctor would really like you to come back in as soon as you are able. Does the following Monday at 8 a.m. work? There is a small mass in your left breast that wasn’t there on your last mammogram. When I saw it, I pulled your previous mammogram to compare to make certain it was just dense breast tissue, but it is a change that is of concern.”
All I wanted to do was hang up the phone so I responded, “Next Monday is fine. Thank you.”
Anomaly. Mass. Did she say anomaly or mass? I should have asked that….should I call back? No. It's just dense breast tissue. I just had a mammogram a year prior. I’m fine. It's fine. Breathe. Don’t panic over nothing. I looked over at my husband. The steadiest person I know--until it comes to me. No. Don’t wake him. Breathe. I closed my eyes, but in that moment I felt the Spirit: open your eyes Carol. And, when I did, I saw the light sparkling on the water. I marveled at it’s deep jewel tones as it spread to the horizon, but up close the same water was invisible because it is absolutely crystal clear. I dug my toes into the sand and felt the warmth of the sun. I heard my kids laughing..maybe bickering...and I praised God for his goodness. I thanked him for surrounding me with the evidence of His majesty and my blessings. I thanked him for taking me out of my panic and reminding me that even if the worse lay ahead...I can count it all joy. In that moment, I surrendered my circumstance to Him. At that moment, I knew for the next week this was a private conversation between Jesus and me. Time enough for everyone else’s concern and worry. At that moment, I wanted to focus on God’s abundance: a week surrounded by his beauty, my family, and His peace.
The week that followed was a blur of biopsies, mammograms, a breast mri, radiologists, oncologists, breast specialists, and surgeons. The initial plan: lumpectomy to type and stage.
My breast cancer was caught early (Praise Jesus), but the lumpectomy was more complicated than thought: the mass was not only larger than anticipated, but they found multiple other areas of concern (11 to be exact!) As well, lab work revealed I carried the BRCA1 mutation. The breast specialist went over my options, but was quite clear that a total bilateral mastectomy was unavoidable. Chris and I prayed. We made the decision to get everything removed immediately, wait for the pathology report, and then take the results one step at a time.
As I write this, I am 1 ½ years cancer free. Reconstruction is almost complete (still waiting for some tattooed nipples….) and I am getting better at not bashing into things with a chest I cannot feel.
My story, however, is not about breast cancer, BRCA, mastectomies, or recovery. So many courageous women have fought much tougher battles and shared their hearts to encourage others walking that path (myself included). My story is not about what I lost to cancer. I realized early on my story is about the abundance I have in Christ.
Throughout my journey I wrote to God (I am a writer who frequently types her prayers and conversations with God). Today, I felt moved to share three of the entries:
The last month or so I’ve struggled to trust. My constant internal loop: I will trust. I will trust no matter the results. In the morning when I wake up and in the evening when I go to sleep: I will trust. I will trust. Trust is to relinquish control...it's not easy. Especially for a control freak like me. Honestly, my trust in this sounds more like: Jesus take the wheel! But I’m just gonna backseat drive in case I don’t like where we are going. Lord, give me a heart that turns “what if” to EVEN IF….
In my brokenness, I hear the Spirit whisper: BREATHE. BE STILL. SURRENDER. When I do, each time I do (because let’s face it I’m a multiple times a day arms crossed, foot tapping, obstinate girl), I feel my defiant spirit softening. I feel my unrest settling. I feel my fear receding. I feel His strength propping me up. I feel His peace filling every inch of me. He reminds me: my hope is secure.
In the stillness...I remember:
His Will...my protection
His Word...my armor
His Grace...my abundance
His Spirit...my helper
His sacrifice...my salvation
In my weakness, His power is made perfect. I remember the words of a dear friend...Jesus is not just a life vest; He controls the waves. I know with Christ, I have more than I will ever deserve. So, I will trust.
As I face this uncontrollable circumstance filled with uncertainty, I can choose to drown in my fear and self-pity or I can rise by delighting in your sufficient grace. So God, I thank you. I am simply overwhelmed by your goodness and desire to be near. You have protected me, strengthened me, and provided precisely what I’ve needed to take the next step in this journey, one I truly don’t want to take. You have given my spirit peace in the waiting. Evidence that you hold me in the palm of your hand. This morning I wrote Psalm 139 on my hand. To remind me of your faithfulness, goodness, and steadfast love when I feel uncertain and unsteady. I know just as you have carried me to this moment, you will continue to carry my broken, battered body. I know EVEN IF the worse news comes, you’ve got me and all those I love.
Please God bless all those that have covered me in prayer and showered me with such love that despair withered. Please stay near to Chris and our children while they wait. Please bless Lisa and thank you for having her, one of my prayer warriors, in the OR with me managing my anesthesia so my husband and children can have a bit more peace.
Thank you for your steadfast love...I will trust.
3 surgeries in 5 months. After a journey, I never anticipated traveling and one I am blessed to come out on the other side with more time with Jesus, more time to share the goodness of God, and more time to love and be loved, my thought: what precious treasure is found in the midst of trial. So many lasting gifts from God to be thankful for, but two that stand out. The first treasure was time in stillness. As a mom to four--a Martha through and through--this trial forced me into stillness. Forced stillness of waiting endlessly in doctors’ offices and weeks (that turned into weeks and weeks) of being confined to bed rest (some obnoxious healing complications). In that forced stillness, I sat at His feet, immersed myself in His Word like I’ve never done before. The more I sank into His Word, the more it filled me to overflowing. The more I realized the beauty of the simple truth: God’s Word is living. His Word breathes light and life into the darkest and deepest pits. His Word edifies as it comforts. It convicts and it transforms. I don’t know what God has planned for me, but I know these past months were a gift to teach me to surrender more fully and cling more desperately, a gift to remind me when God is the greatest desire of my heart it is well with my soul. A gift that every “what if” can be used for good and for His glory. The second treasure: this past year taught me with Jesus I have all the abundance I will ever need and far more than I deserve. That time not sharing Jesus is time wasted. I want, with all that is within me, to bless the Lord with my life. I want to burn with passion for Christ. I want every moment I am given in this fallen world...wrapped in my brokenness...to be used for His glory: because of who He is, all that he gives, and all that He did through Jesus.
My breast cancer journey ignited my faith in ways I never imagined possible. But, then again:
Through Christ all things are… He truly trades ashes for beauty.
“But seek first his kingdom and his righteousness, and all these things will be given to you as well.” Matthew 6:33
We are a family of 5, although the outside world only sees four. I am a new mom(again) even though my arms are empty.
On the morning of August 17th, 2020 I was almost 33 weeks pregnant with our daughter, Saylor, when I noticed she wasn’t moving like she normally did. I decide to go in to see my OBGYN just to check things out, even though I had been there a few days prior, and everything looked great. Because of covid restrictions, I went alone, and all alone on an ultrasound table, I got the worst news a mother could get. There is no heartbeat.
How could this be? Her nursery was already decorated with bright pink flamingos and monogrammed art. I already had a stash of matching outfits and bows for her and her sister. My 3 and 4 year old were anxiously awaiting their baby sister’s arrival with plans to help out with feeding her and playing peek-a-boo.
How could this be? Her nursery was already decorated with bright pink flamingos and monogrammed art. I already had a stash of matching outfits and bows for her and her sister. My 3 and 4 year old were anxiously awaiting their baby sister’s arrival with plans to help out with feeding her and playing peek-a-boo.
And just like that, our daughter would never be coming home.
What followed could only be described as the “worst case scenario”. After giving birth to Saylor, which was a heartbreaking, life-changing experience, my body started shutting down. I went into DIC, which is where your blood stops clotting, and my kidneys shut down. Statistically, most women don’t survive this kind of trauma.
After 6 units of blood and plasma, 10 days in the hospital, half of that time in the ICU, a dialysis port surgery, and countless tears, I was able to leave the hospital to continue my recovery at home. They wheeled me out with a small box of memories on my lap, instead of a swaddled baby.
Our lives are forever changed, but not all of it is bad. I have never felt more surrounded or loved in my lifetime than I did right after Saylor died. So many people, some we had never met, were lifting us up in prayer. The lyrics “it may feel like I’m surrounded, but I’m surrounded by you” felt so real. Our community, our church, the women of faithfully restored, were the hands and feet of Jesus that were surrounding us in our greatest time of need. Countless meals, toys for my kids, beautiful memorial gifts were dropped off at our door daily to remind me that we were loved. That my baby was loved. To this day, I’m not sure how we survived the first couple weeks, and all I can think is by the grace of God.
As Christians, sometimes we have this false sense of protection that nothing bad can happen to us because the Lord is with us, and that’s just not true. Bad things happen to goos people all the time. I am not alone in that regard. But God most certainly DID promise to walk through the fire with us, and I have felt his presence, every step of the way.
I’m not sure what the future holds for our family as we grieve and grow and move forward while always carrying Saylor in our hearts and saying her name out loud, but I do know who goes with us, who goes before us. Who’s love is unfailing and who is near the broken-hearted. Jesus.
Meet Tianna from Tennessee. A domestic violence survivor and advocate of Mothers against Murder. Just four short years ago, Tianna witnessed her son being murdered. She held her son Anthony as he went home to Jesus. Knowing she wanted to make a difference and turn her pain into purpose she started seeking assistance to go back to school to help others in similar situations.
During this time, Tianna met a new friend that changed the trajectory of her life and set her on a new path. That friend, a Faithfully Restored supporter, referred us to Tianna and the rest is history!
Currently, we have paid for her first year of schooling at a local college where she is going back to get a degree in counseling. And, with your help we would love to continue to help Tianna and so many other women like her. Join us!
Written by Amie Martin
October 19, 2015 - Ava has been in the Cardiac ICU for 70 days, and 63 days wait listed as a 1A heart transplant...seems like a long time but there are children that have waited longer, and there are children that still wait. People always say to Brian and I, "you're so strong" or "I don't know how you are keeping it all together?" It's not easy, I don't feel strong...you trudge along because the alternative is not even worth mentioning. I pray Ava isn’t suffering, and I pray she will leave the hospital with us with a beautiful new heart. We've been exposed to a whole new world of fear, relief, heartache, triumph, friendship, isolation, sadness that makes your heart just plummet into your stomach, and joy that can not even be put into words. I've waited outside my daughter's hospital room door to embrace a fellow heart mom when the news came that her 18 month old son would finally get the gift of a new heart and then weeks later sobbing in that same embrace because there was nothing more that could be done to help their sweet angel. I've crouched in the corner to watch in awe a champion of a human being walk almost run down the hospital hallway after only receiving her new heart a week prior. We've seen doctors, nurses, therapists, and administration wipe the tears away from their faces as they walk away from a patient's room one last time. A child they have looked after for months on end, and when they come in for their next shift that patient will not be there.
It's exhausting, but we stare at the photos of Ava in all her beauty plastered all over her hospital room...we see Ella and Ava light up with joy and screech with excitement when they see each other over FaceTime...we feel the generosity of so many of you...we love viewing the #wherewillavagonext photos...we hear about and meet people with success stories and amazing qualities of life when all of this is behind them...and we are recharged by this hope and light that we see at the end of the tunnel. We don't even begin to think that our situation is the worst there is out there. It sucks, there's no sugar coating that...some days are better than others, but we have one hell of a fighter in our #AmazingAva. We don't waiver in our belief in God or her for one second. She is stable, still intubated, and her team knows that she walks a tight rope. So we wait, we welcome the good days and hunker down on the bad.
We have the privilege of spreading awareness about congenital heart disease and pediatric organ donation. This is just the beginning of a lifetime of educating all those that care to gain insight and learn about a disease that effects 1 in every 100 children. There is no filter, no prejudice, no socioeconomic barrier. We see children and their families struggle from all walks of life. With continued research and medical advancements these children have the opportunity to become adults, and families get to raise their child that quite possibly they were told they still had time to abort before 25 weeks gestation.
Thank you to anyone who has taken one moment to think about our family and Ava...if I haven't been able to thank you personally...Thank You for helping us get to where we are today. I/We can not wait for the day that we get to spread the news of Ava getting her gift.
I wish I would have written more down on paper during this journey. In all reality, we were surviving one day at a time, so I’ll give myself some grace in that it wasn’t my first priority to blog and document my feelings and chain of events during this time. It all began at our 20 week ultrasound. Since it was our second child, I told Brian he didn’t need to come with. I figured it would be a quick in and out. I knew something wasn’t right when the radiology tech was measuring the chambers of the baby’s heart over and over again. Crazy thing…it was a radiology student doing the exam. She kept her composure, but I knew something was up. She left the room at one point to get her supervisor and instructor. The instructor came in and measured the same thing over and over again. They asked me to go to the bathroom and empty my bladder to get a better position of the baby. That was their opportunity to discuss I assume. They asked me to head back up to my doctor’s office where I waited for what felt like two hours for the review and diagnosis to come from the radiologist. I remember feeling anxious yet calm. My OB doctor brought me back to an exam room and broke the news. I didn’t cry. I felt a sense of hope in my doctor’s eyes. Maybe she’s delivered this speech enough times before. Additional testing would need to be performed. I got in the car a bit shocked and frozen in my thoughts. I called Brian to give him the news but couldn’t get the words out. He worked a few blocks away, so I drove to pick him up…and so it begins.
Our little girl was diagnosed with a congenital heart condition called Hypoplastic Left Heart Syndrome. Further testing was completed during pregnancy to confirm the severity and other malformations of her heart. Within two weeks we had a fetal echocardiogram. Once again, my nurse brain told my husband not to come; thinking it would just be testing not a conversation of diagnosis and prognosis. Wrong again. The specialist saddled up in a small exam room with me and laid it all out. We were at 23 weeks gestation by now. Hypoplastic Left Heart Syndrome confirmed. A narrowing of her aorta confirmed. Ventricular septal defects probable. The medical team is required to inform us of diagnosis, prognosis, and all of our medical options. I was told we could abort our pregnancy before reaching 25 weeks gestation in the state of Illinois. I was told we could carry to full term, and she would most likely struggle. I was told we may have two minutes with her or a lifetime. Surgical intervention would be absolutely necessary to help her survive, and he gave me a short synopsis of what those procedures were. Lastly, pediatric heart transplant was discussed as a possible last-ditch effort to sustain life.
We didn’t even think twice about our options. God created this life, God created her, God would see her through. Brian and I get asked all the time if it were better that we knew so early on, or if we would have rather not known the fate of our unborn baby. Brian and I would not have changed our path for anything. It was a path that was already laid out for us. We had faith early on that Ava would be okay. We were able to research her diagnosis and interview with a team of specialists that would be caring for her after she was born. We moved into a tiny 600 square foot apartment two blocks from the children’s hospital a few months before Ava was born to keep life as local and simple as possible. The hospital we chose was Lurie Children’s Hospital of Chicago, and they gave us nothing but hope that Ava would prevail.
Ava was born on July 16th, 2014 at 11:18pm. She was perfect. Apgar scores of 8/9. There were a million people in the room waiting for you know what to hit the fan, but nothing. Stable. I was able to hold her for about five minutes. There was a peace and calmness about the room. I didn’t notice that everyone, but Brian and I, was holding their breaths. And whoosh, they swept her off to the NICU holding area with Brian in tow, to get her looked over before sending her to the Cardiac ICU at Lurie Children’s Hospital next door. About 2am they let me sneak over to the NICU holding area in a wheelchair to see her again before being transferred. I think I slept for 4 hours in my assigned room before heading next door to the 15th floor of Lurie’s to see my girl. I’m pretty sure I wheeled myself over there in a wheelchair. It is a little blurry, but I’m pretty sure I didn’t wait for help or permission. The hospitals are connected by bridges, so it’s not like I was the crazy person in a hospital gown roaming the streets of Chicago. I may have gotten a few strange looks though. Adrenaline is real. I was about 7 hours out from pushing a baby out, and I’m cruising the halls of a massive hospital complex to find my child’s room a city block away. I didn’t crash until 1 week later when Ava went down to the operating room for her first open heart surgery.
Ava was in the hospital for only 2 weeks. She had open heart surgery at 7 days old to repair her aorta. She thrived up until 6 months of life. This is when her next open-heart surgery was scheduled. Her left ventricle was showing signs of growth, so they decided to try to repair her septal defects rather than perform the Norwood-Glen-Fontaine procedures. Unfortunately, our girl struggled, and she was failing to get off of bypass during this surgery, so they had to make a couple adjustments to their plan. Too much pressure was building up inside the chambers of her heart, and the pressure was backing up into her lungs as well. They did what they could do to stabilize her to get her off of pump, but from this point forward we were on a downward slide towards heart failure. Ava was finally discharged home after 6 weeks of being in the hospital. Our hope was being crushed, but our faith was still strong.
For the next 7 months at home, we watched our baby girl deteriorate. She had little to no strength to sit up and keep food down. She would sleep 17 out of the 24 hours of the day. We fed her through an NG tube, which is a tube that goes up her nose, down her throat, and into her stomach. Her crib was in our bedroom, and I slept with my head at the foot of the bed so that I could leap up as soon as I heard her vomiting in her sleep. We would lay 3 to 4 blankets down underneath her, so we could just peel one layer back at a time after each episode. Routine visits with the cardiologist was painful. I knew they didn’t want to speak the words but there wasn’t much else they could do until she really fell off the deep end. I begged for a G-tube from her specialists to remove the tube from her nose and throat. Finally, on her first birthday, July 16th of 2015 she had surgery to place a G-tube. This was a boost of hope that maybe life would be a bit more manageable at home. It was one day at a time still. Surviving on multiple levels. Physically. Emotionally, Mentally, and Spiritually. It is all a blur.
An appointment was set to consult with Ava’s surgeons to discuss next steps. Her chart had been sent to Boston Children’s Hospital and John Locke, MD (the head of pediatric cardiac surgery in the best cardiac children’s hospital in the world) was reviewing her case to see if they had any thoughts on how they could help her. The decision was made for Ava to go to Boston for her next minimally invasive cardiac surgery because the team did not feel confident that she would survive another open heart surgery. We just had to put our faith in whatever was to come. On August 18th, 2015, I took Ava for a cardiac follow up appointment to do her routine imaging and discuss the teams plan for her next heart surgery. Similar to the 20 week ultrasound during pregnancy, I could tell the radiology tech was not at ease during the ultrasound. I was distracted by a giggling, playful one year old though. In all of Ava’s struggles, you would have never known she was sick.
We went back to the exam room to wait for Ava’s cardiologist to discuss Boston a bit more in depth. I was distracted in the exam room again because Ava was laughing about something silly, and it kept me from the unease that I was feeling. Ava was far from well, but Brian and I were doing our best to keep medicine and food in her. We were not in denial that she needed more surgery to try and optimize her sick heart, but I don’t know that we ever allowed our thoughts to believe that Ava would be in heart failure awaiting a heart transplant. As her doctor walked in the room, I knew she was about to deliver a blow. She was calm but stated we needed to make our way over to the hospital and get Ava admitted so she could fast track her to the cardiac cath lab. The ultrasound revealed Ava’s left ventricle was no longer pumping. Her little pumper had had enough. She was in heart failure.
On August 18th, 2015, when Ava was 13 months old, we were told that she was in heart failure and her only hope was to wait for the gift of life, a gift that another family would need to decide to give her when hope was pulled out from under them. She struggled but fought every second. She was on a ventilator on and off at the beginning, but when arrhythmias threatened to take her life the medical team decided to keep her intubated until that gift of a second chance at life would come.
Ava waited 111 days before getting “the call.” She was on a ventilator for 68 of those last days. Awake and playing through some, sedated but awake through others, and paralyzed in a medically induced coma to help her rest during shaky times. Twice we gathered our family and the chaplain and prayed over her. My aunt, who is a Catholic nun, was in Chicago on a layover the first time Ava was steps from heaven. We sat on the couch in Ava’s room together and she asked me what I needed. I said to her, “I just want to pray. Can you help me pray?” We prayed the rosary together. The next time Ava took a turn for the worse, I laid my head next to hers, held her cold hand and prayed. I hope I never repeat this to her again. I prayed and asked God to take her if she was suffering. I whispered to Ava that it was okay if she couldn’t fight anymore. Never did I doubt Ava or lose faith that everything would be as it should. Whatever God’s will, we accepted it. Hope and Faith are powerful things. Jamie and Daniel Heard have taught us even more about the meaning of these words…
On the morning of December 14th, 2015, we received the news that Ava would be receiving her heart that day. We didn’t know at the time, but Jamie and Daniel decided that weekend to donate William’s heart. Our girl Ava would be the child to receive the most beautiful gift from the sweetest boy. Jamie and Daniel, you have given us Hope, Faith, Love, and Life in your darkest hour. You took your tragedy and selflessly gave us a gift that all the money in the world cannot buy. You poured your love and faith into your child and now that overflows onto us. Although I know God has always had a master plan for our Ava, I believe that He gave you the strength to help Him carry out that plan. Your sweet William is “Alive in Heaven Now,” and your son has given our precious daughter the chance to live here on earth for whatever remaining years we have with her. As you told me, you asked your beautiful William, “Who made you?” and he would reply, “God made me!” The same goes for Ava the first time around and now a second time, “God made her.”
We look at photos of your family…the joy, the love, the faith, and your hope for a new home for your beautiful baby boy’s heart. Thank you for giving us joy, showing the world how to love, strengthening our faith, and giving us hope for our sweet Ava. Thank you for giving us the ability to honor your son every day for the rest of our lives. Thank you for having the courage to reach out to us during a time when most parents would shut out the world because of their unending pain and grief. Thank you for reminding us that there are people like you and your family in this world. Thank you for the second chance at life you have given Ava. God put this spirit of survival and perseverance in her and all of us.
Click here to learn more about organ donation or to sign-up to become a donor.