Hero is spelled: Reverend Julia Messer

Reverend Julia Messer

In December 2011, our daughter, Peyton, started what would begin a string of very long and devastating hospital stays. Before this time her average stay was five to seven days of just trying to figure out why her body would not cooperate. After this time she would rarely be impatient for less than fourteen days, and it was a constant battle just to get her back to baseline, praying we would be bringing the same child home. It was a huge turning point in her disease and her life in general. It was the last time she would be fed, the last stay she would have without daily oxygen, the last stay she would have without a permanent intravenous line, and the last stay that we had where we were able to convince ourselves she could get better. This was that point on the map of life where I can officially say we lost our compass.

Very rarely did we have roommates when we were impatient, thankfully. It can be such an inconvenience to share a room. I would spend most of my time waiting for our roommates to be discharged when we did have one. We had a constant flow of; minor infection kids, minor surgery kids, minor illness kids in general. Not to say these things aren’t difficult for the parents who must go through them, but to us they were a constant reminder that again our daughter wouldn’t suddenly recover, she wouldn’t just be discharged and be ok.

December 2011 changed everything for us. In the middle of the night we got a roommate. I rolled my eyes and wished again that we had a private room. The baby next door cried and cried that her leg hurt. Peyton awoke and asked me to give her, her books and crayons. She is a much more gracious human being than I could ever imagine being. I walked across the room to fulfill Peyton’s wish and looked into the eyes of a precious angel in pain, and her loving family and religious community who were all pulling for her to get better. Instantly my annoyance with having a roommate disappeared and what it was replaced with was admiration and acceptance that though our fights were different we were all fighting for our babies.

The next two weeks were spent with not only their family, but ours being surrounded with love by that same community. It took very little time for us to become acquainted and feel as though we were truly cared for. It was an amazing feeling, one of those true in the right place at the right time situations.

A few weeks after we were both discharged our fast friends had invited us to their Church, the same Church family who had been praying for our daughter for weeks without ever having met her. They had made prayer shawls for the girls, and wanted to present them to us. Honestly I was so humbled. I had never felt so much warmth before.

It was then that we really got to know Reverend Julia Messer. She made it so very clear that she was there for us now and whenever we may need her. We barely knew her, but she already loved our girl and made it very clear that she would be there until the bitter end.
Not a day goes by when I don’t feel her prayerful presence in our life. She has been angry for us, she has been happy for us, she has grieved with us, and most importantly she has been there physically to support and walk us through this journey.

Not only has she been there for me as a friend, but she has been there consistently for our sweet girl to visit her while she is not well. She has been able to undoubtedly always put a smile on her sweet face, and for that I will be forever grateful. She also makes sure that our other little ones feel loved and cared for and always seems to be there right when we need her. She is my true definition of a hero. She has given herself completely without any expectation of reciprocation. She is truly one of God’s people and we are beyond blessed to have her in our life. Thank you Reverend Julia for being our hero, thank you for helping us rediscover our compass.

 Kate Sytsma is mom of four, two of which battle mitochondrial disease.  Kate is a strong advocate for families of children with mitochondrial disease.  She is the owner of Caelum's Cannula Caps, founder of Peyton's Promise of Hope, and Marketing & Publications Coordinator for Mommies of Miracles. 

Hero is spelled: (Cincinnati CHMC) Center for Infants and Children with Special Needs

Dr. David E. Hall and Ava

They are the smallest clinic at Cincinnati Children's and they care for the sickest children.  They are not your typical medical team.  They call randomly at 9 pm to check on your child just because they were thinking of them.  They are selfless.  Dr Levin, who founded the clinic, was a NICU Dr for years.  He was discharging children with multiple health problems that no "run of the mill" pediatrician could treat.  He started his clinic and has a HUGE hand in why so many medically fragile children are home where they belong.  He advocated for home nursing when it just wasn't heard of. Children home with tracheotomy and vent?! Never!  He is a reason so many children are home on vents running away from their nurses, pulling their vent stand with them!

We met this team while my baby was inpatient.  Her pediatrician had tearfully told us Ava was too involved for her.  "I have residents calling me daily to update me on testing I have never heard of" she said.  This was before Ava had a diagnosis of Mitochondrial disease.  In fact, she was on the fourth floor on TPN (total parenteral nutrition) and terrified of everyone who walked in her room.  I had called this clinic and asked if they were accepting new patients a week prior.  Here walks in 3 physicians, 2 advanced practice nurses, a nutritionist, and social workers.  The team to welcome us.  They sat with us, handed us our first medical binder and listened.  They listened.  Sometimes that's what we need. 

Ava and Wendy Choeteau, RN CNP

Ava is now 4 and she tells Dr Hall she loves him.  When she sees Wendy, who she renamed "Popcorn", she lights up.  She is inpatient so much and we've never had a day where they haven't been in her hospital room.  They not only get to know, but work very well with all her specialists.  If they can't answer a question (which is common with Ava) then they will find an answer or someone who can.  They have went above and beyond the expectations of others to provide a directory for families that need any type of help with their special needs child.   http://www.cincinnatichildrens.org/patients/child/special-needs/directory/default/ 

These people are heroes.  They have made having a child with special needs easier.  I know I have a medical support system whenever I need them, any time of day. They love these special children as much as the families love them.  The entire team, although small, means so very much to so many.  To have an entire team  behind you is like a breathe of fresh air.  Ava has never been textbook and we know she is writing her own book. I know this amazing group of people will do whatever they can to make sure her story has a happy ending.

Hope Lawson Carter is mommy of Ava (and other children).  She is active in the fight against mitochondrial disease and advocates for awareness, research, and a cure.

Hero is spelled: Dr. Lenora Fitton, aka "Doc"

The Kottonbrock's and their beloved "Angel" Noah

Our Hero is our Pediatrician Dr. Lenora Fitton. She is unlike any other pediatrician we have ever met. The day she took on our one special needs child she stated "I would be honored to partner with you to help him reach his full potential.". Wow as many of us know that is HUGE in our world? We had been very unsatisfied with our former doctor and was having trouble finding a physician that wouldn't just push our son aside. We were willing to drive however long it took to find Brenton just the right doctor. We asked the disability clinic staff at Cincinnati Children's Medical Center and Hospital (CCMCH) if they had anyone that worked really well with them. To our amazement Dr Lenora Fitton was only fifteen minutes away from our home! Dr. Fitton has continued to support and encourage us along this journey of medically fragile foster care and adoption with the addition of Collin, Addison and Noah to our family.

Doc (as referred to by her patients will make house calls when your child is very ill to keep you from having to drag them out of the house, she answers the phone no matter what time of the night you call, she will do everything within her powers to keep your child home and out of the hospital. She also knows when it is time to go to the hospital. When you are in the hospital she keeps close contact with the family and the treating team of physicians. During times of critical illnes, as was the case with our son Noah,  she called the treating physician and us multiple times daily.


When it became obvious Noah was not going to remain here on this earth with us and the time for him to earn his angel wings drew near, Dr. Fitton rearranged her entire practice, her hospital rounds, her own children and personal schedule to be there. Chas went and picked her up. She came to CCMCH and helped Chas and I transport Noah home and kept him comfortable. Dr. Fitton stayed at our home for several hours that night and then went home. When things took a quick turn she was back within fifteen minutes and was here to call the time of of his death. She is also a deputy coroner for her county in her "spare time" (she has a very busy life).  Dr Fitton (Doc) is truly one in a million. I am not sure what our family would ever do without her. We have informed her she is not ever allowed to retire. We love her very much.

Dr Fitton gave Noah the gift of being home with his family when he earned his wings and that is a debt we can never repay.

Tracy Kottonbrook is mom to fve children all of whom have had or have medically complex diagnoses and two of the five children are heavenly angels.  She is a nurse, and advocate for special needs children in her community, recently winning an honorary award for excellence from her county board of developmental disabilities. 

Hero is spelled: Hocking County Ohio Help Me Grow Program

Catherine (left) and her Help Me Grow Heroes

Most of us can remember a person who came into our lives who made a difference. It might have been a coach, a teacher, or a relative. But how many people can say they've had 6 of those people before they were 3 years old? Well, Catherine can. Through the Help Me Grow Program she has had most of these ladies in her life since she came home from the NICU when she was 4 months old. In the hospital when we found out about her rare chromosomal abnormality, the doctor said she couldn't tell us whether Catherine would walk or talk or how well she would learn.

Then a Help Me Grow representative at Children's Hospital asked me if I would be interested in getting therapy services for Catherine when she went home, and I emphatically said yes. I finally felt like someone could help us. Because honestly, we didn't care what Catherine could or couldn't do or what her future was going to look like, we were just happy she was alive after the roller coaster of the NICU. We wanted to help her be the best that she could, whatever that looked like! 

Catherine began receiving speech therapy, occupational therapy, physical therapy, and early intervention services. These ladies helped us to focus on what she could do and even though it's their job, they were like family, rejoicing with us when Catherine finally rolled over, sat up for the first time, began crawling, began signing "more", making her laugh (and cry!) like I've rarely seen her and more recently when she began eating. They also cried with us when Catherine developed retinoblastoma.

Now that Catherine is 3, the therapy that she receives becomes the responsibility of the schools and she will begin preschool in a few weeks and will leave Help Me Grow. We are so blessed that a few of these ladies will also be providing her therapy at school, but are also very sad that we won't continue to see some of them on a regular basis like we're used to. I have been made to promise that I will keep them updated on the blog and on facebook so they can continue to see Catherine grow and develop, and of course I will.

Thank you so much Michele, Christina, Carrie, Jill, Amy, and Michele. You truly are like family to us. You have no idea how much you've helped Catherine and our family. We promise to stay in touch!

Nicole Hahn is a registered nurse, home schooler, mom to Catherine - who has complex medical needs, and mom to fiver healthy boys, wife, and co-owner of Real Life Rosary.  She is one of our original founding Mommies of Miracles.  To learn more about Catherine's Story visit www.jamesmhahn.blogspot.com

Hero is spelled: Meagan

Logan and his hero, Meagan

Logan's first physical therapist, Meagan will forever have a place in our hearts! She was with him from the time he came home from the hospital in November 2008 until May of 2011! It's hard to let go of someone who cares as much for your child, seeing them succeed & progress as much as you do! I can't even begin to describe the thankfulness that we have for her & the effort that she put into helping our son!! But, because of her we now know what our son is capable of and strive to help push him to learn & grow the best that we can every day!

Tiffany Whalen, is the mommy of two which includes Logan who has Spina Bifida.  She is a champion for parents of children with Spina Bifida and runs the Spina Bifida Support Group called United By Spina Bifida .  She also blogs about her life with Logan at  her blog: Growing from the Obstacles.  In her "spare" time she is an Independent Scentsy Consultant http://tiffywhalen.Scentsy.us, former Mommies of Miracles group administrator, and contributor to Mommies of Miracles programs and services.

Hero is spelled: Cathleen Dickinson

At 36 weeks into my by the book, perfect pregnancy, my husband and I were busy planning the upcoming arrival of a healthy baby.  We didn't know the sex so we had names picked out for a boy or girl.  We had a green and yellow 'Winnie the Pooh' nursery to cover us either way.  Around 34 weeks we took a pregnancy class.  This class talked about what to expect with labor, when to go to the hospital, how to reduce pain and discomfort, etc.  Aside from packing our go bag, we were ready (or so we thought).

After spending the day taking pictures at my husband's triathlon we returned home for the evening.  A few hours later, our lives changed forever.  I was in horrible pain and thought for sure it was labor.  When it did not let up at all, I knew there was something wrong.  Luckily we got to the hospital (4 blocks away) very quickly (as did my OB/GYN).  After a few agonizing moments in Labor & Delivery the nurses realized the baby and I were in danger and I was rushed into the Operating Room for an emergency Cesarian.

The birth of my daughter was very traumatic.  She was a full code (APGAR 0-0-0).  When they were able to resuscitate her she was taken to the Neonatal Intensive Care Unit  (NICU) immediately.  I was taken to the ICU as well.  I was put out for the procedure and woke up hours later, no longer pregnant.  My husband had been going back and forth between the ICU and NICU all night and came in shortly after I woke up.  He told me we had a little girl and that she was upstairs in the NICU.

I was eventually let out of bed and wheeled up to the NICU to meet my daughter for the very first time.  The NICU is a scary place.  When I saw Casey all hooked up to what felt like a million machines I started crying.  She was so beautiful and so fragile.  All I wanted to do was pick her up and run away.  Instead I just stood back and watched.  I didn't know if I could touch her without hurting her.  I had been in love with her since conception and my heart broke into a million pieces as I watched her lay there.

The nurse taking care of Casey was named Cathleen.  She introduced herself to me and then gave me the most amazing gift.  No one knew if Casey would make it through the night, so they let us break a few rules.  Cathleen made it so that I could hold Casey.  Only for a minute.  Casey was on a ventilator, and in order for me to hold her Cathleen had to manually bag her to breath.  I will always treasure that minute. 

Casey was in the NICU with Cathleen for a month before transferring to another NICU.  During that month all of the nurses caring for Casey were wonderful, but Cathleen was special.  She was Casey's primary day nurse and she treated Casey like her own child.  She would cuddle with her when we could not be there.  She would hold her hand and talk to her to calm her down.  She showed Casey so much love and that to us meant the world. When we were moved to a larger NICU we were very sad to leave the nurses, especially Cathleen, that we had come to trust and know.

We eventually made it home with Casey.  We took Casey to visit her original NICU nurses and show them how well she was doing.  While we were there Cathleen offered to come by and watch Casey at our home so that my husband and I could take a break every now and then.  The rest of the time that we lived in Santa Monica, Cathleen would come by every week or two and stay with Casey for a few hours.  She became part of our family.  We knew if we left and Cathleen was there, Casey was safe and loved.

We moved away shortly before Casey turned 2.  Casey turned 6 this year.  Cathleen still checks up on Casey every couple of months.  She remembers her birthday every year.  The experience of being in the NICU was one of the hardest times in my life.  Cathleen helped to make that time a little easier on all of us.  We will never forget all that she did for us by showing our daughter so much love.  Casey doesn't travel well.  We hope that one day she will be strong enough to make it back to Santa Monica to reunite with Cathleen.

Marty Barnes, mother of six year old Casey, Mommies of Miracles admin, founder CLU Campaign