Thank you for joining Mighty Mara's Mission to spread music and joy to others. We will be celebrating Mara's 1st Birthday by honoring our heroes who helped us through her NICU journey. I hope you take the time to read her story below, get to know Mara, and donate to our mission in her honor. Details below.
Mara was born on February 24th, 2019 at 12:58 am. It was in the early morning hours that we learned she had a spot on her back that was a concern. She went straight to the NICU at Brookwood Hospital. After a MRI, an ultrasound, X-rays, blood work and a consult with the nuero team at Children's Hospital we had a diagnosis: lipomanengecele.
What on Earth does that mean? This is a neural tube defect where her spinal cord never correctly detached from the derma (skin), thus creating a little tunnel from the small of her back to the inside of her spine. This paired with a lipoma (fatty tissue) and a hemangioma (red birthmark) we had scary looking situation on our hands. Neural tube defects are most closely related to Spina Bifeda. Mara's condition is extremely rare, but very mild on the scale of defects.
She was transported from Brookwood hospital to Children's Hospital of Alabama and went in for her first nuero surgery at 4 days old. The surgery was to detether the spine from the skin and do a proper closure. She spent the next week in the NICU primarily on her stomach. I was hell bent on nursing and thanks to a very creative nurse, Melinda, we were successful. I would be at the hospital from 6 am until 7 pm to nurse her and see her doctors, then she was bottle fed by nurses at night.
Let's talk about those nurses. Candis, she was simply the BEST. She is a mom, she is kind, loving, funny, and she was exactly what I needed. She followed by breastfeeding wishes and loved on Mara. Candis gave Mara the nickname "Chicken" that she still has.
Paige is the discharge nurse who took rounds every morning with the NICU team. Paige looked at me one day while I was nursing (sorry, not bashful) and said, "You go Mama! Every sip of that she gets in here shortens her recovery time. Keep up the liquid gold medicine." I took those words ad fuel to my fire. I would NOT quit. In fact, I still haven't. Paige was in our corner. She talked to us like human beings and parents and helped decipher all the medical lingo.
Our NICU stay was largely uneventful, just healing of the wound. Checking her hearing, her nerves for damage, her legs for movement, her feet, hips, joints, etc. Spinal defects often come with bladder and bowel issues as the nerves effected are all in the same area. We did days of catheter tests to make sure she can empty on her own. The urologist was one of the only times I openly got upset. He ended his conversation with me by saying, "I'm going to teach you how to put in a catheter, review urine bag options with you. You and I are going to have a LONG relationship together." Mommy burst into tears. Mara peed all over him at her next test, showing she was just fine. I have yet to administer a catheter.
We were overjoyed to be released from the NICU and finally take our baby home after a little over a week at Children's. Finally, home with big sister Redding as a family of 4! Big sis was allowed to visit at Brookwood once, but was restricted from Children's. They have a strict no visit rule during Flu season. Well, unfortunately that stay was limited. Just 4 nights later after a sponge bath, mother's instinct kicked in and I knew her incision just didn't look right. I knew I wouldn't sleep until I knew, so off the ER we went with our 2-week-old right in the middle of flu season. The on-call doctor didn't like the way things looked, but we got some steri-strips to help close it up and on our way we went.
Monday morning, 15 days old, I received a phone call at 9:30 am asking us to be seen by the nuero team in the Spina Bifeda clinic at 10 am. What we thought was going to be a check-up on her incision ended in a whirlwind. She was soon to be rushed to surgery was a spinal "wash out" to clear the internal and external incisions of infections. THANK GOD it had not spread to her blood stream. Here we were, with a screaming baby who had not eaten and couldn't eat before surgery, a baby who was clearly in pain, and we were completely unprepared for surgery and another hospital stay.
During surgery she was going to receive a PIC line to receive her antibiotics. During the PIC line procedure, she had a cardiac event that required a ton of doctors and nurses help and eventually medicine to calm her little body down. When the team came to tell us about the successful wash out and the cardiac event, they informed us that the PIC line wasn't quite in the right place and we would likely have to go back to the OR the next day to fix it. Again? Do you know what it is like to sign paperwork with an anesthesiologist for your baby? It is gut wrenching and I didn't want to do that.
Back to the NICU we went and in comes Brandi. Brandi was about to go through shift change, but she was PIC line certified. She assured me that she WOULD get the line moved to the correct place and she WOULD NOT leave until she did so. So she and a few nurses suited up and created a super sterile environment as they began to work on tiny Mara's body. Brandi delivered on everything she promised and I am forever thankful for her.
The next week was spent with much of the same routine. 6am-7pm, then back home to Redding and Joey. Being a mom in two different places might possibly be the hardest thing I've done. This week doctors cultured the infection to see exactly how best to treat it. It wasn't until over a week later that we had a final diagnosis and treatment plan. Antibiotics were changed treat specifically what we needed. The next couple of weeks we moved rooms and floors several times. This was actually great news. Mara was known as the "big fat healthy baby". Well, big fat healthy baby that looked like she had a zipper on her back. Compared to babies in the NICU she was. She ate well, gained weight, kept her temperature up on her own, and lordy could she cry loud.
Mara spent a total combined 26 nights at Children's Hospital. 26 nights of medicine, tubes, tiny blood pressure cuffs, that darn beeping heart monitor that she liked to pull off. 26 nights of nurses rocking her to bed so I could put my big to bed. We found peace in a tiny music box that looked like an aquarium when we could not be there around the clock. Two little fish, a silly turtle, and a song I can hum in my sleep kept my baby company and happy when I couldn’t be by her side. She celebrated her first month birthday there. She missed Redding's first soccer game. I spent my first month of maternity leave at Children's, recovering postpartum in a hospital made for children.
At the time I felt so helpless. I was so confused as to why this would happen to us. Why did the doctors not know about her back before she delivered? Would that have made it any better? I asked God more than once what he was trying to tell me. Guess what? He never openly spoke back, but I'm pretty sure I heard him. After it was all said and done, Mara was good. We were good. We were showered with love, prayers, and a whole bunch of food from friends and family. Redding had the time of her life being spoiled by grandparents. We were good.
I walked the halls of Children's hospital hundreds of times that month. Walking past hospital rooms where little babies were all alone. They laid in hospital grade cribs, in cold, sterile rooms that were loud with beeping machines yet eerily quiet at the same time. Where are all the people we asked? How quickly I was reminded how fortunate we are to live Birmingham with such amazing medical resources at our finger tips. Some of these children aren't from the area and they are housed here for an extended stay. Their families have to go back to work, or go home to other children. We also learned of the unfortunate event where children are born to addiction or with a disability and they are abandoned. How could these children be alone? I'm fairly certain I cried more for what we witnessed than I did for Mara. I knew in my bones she would be OK.
She is named Mara after an AMAZING nurse we had two nights in the hospital when Redding was born. We joked with nurse Mara that if we ever had another girl we'd name her Mara. The name was definitely a contender, but suddenly Redding started telling people "If it's a girl, her name is Mara!" Mara it was. Little did we know how perfect her name is. Mara actually has a Biblical story where Naomi claimed the name after the death of her husband and sons. It's original meaning is "bitter". God uses her daughter-in-law Ruth to restore her and guide her. In the end, Mara comes to mean, "God has taken my bitterness and turned it to joy." I couldn't agree more.
Mara is the MOST joyful and happy baby. She smiles all the time which will certainly bring a smile to your face. We are not bitter or hateful for the journey we went through, or continue to be on. She is doing so great, we just have a lot of appointments and follow ups. Our mission is to help spread joy to others. We don't want to see any children in the NICU with lights, music, and mirrors to bring them happiness when they may be alone. We want to provide delicious coffee to the nurses who are fueled by compassion and caffeine. We want to help provide resources for nurses so they can get extra certifications and training, like Brandi and her PIC line certification.
Please help us celebrate Mara, and spread joy to those who need it.
Here is how you can help!
• Purchase a NICU approved item from our wish list: bit.ly/mightymara
• Make a donation to Children's NICU through this website
• Purchase Starbucks gift cards in $5-$10 increments for the nurses
• Donate aluminum pop tops to Ronald McDonald House
The Ronald McDonald House is an amazing partner of Children's Hospital. One that I have always supported, but never knew I would need. They visited us the first day at Children's letting us know we qualified to stay at the house based on our home location, at the time was 20 miles away. They provide a home for families of children who have to stay at the hospital for an extended amount of time. This is to ease travel expenses and hotel expenses. RMHC uses the pop tops off cans to fund the upkeep of the house and pay utility bills. They raised $15K in 2019 and have a goal to raise $20K in 2020! It is such a simple and effortless way to help make a difference for someone else.
*Any monetary donations made directly to Mindy have been uploaded here
Mindy, Joey, Redding, and Mara Dent