Following the stories of our customers is one of the most rewarding parts of our job. Some of the most heartbreaking stories we find often end up being some of the most inspiring. Today we meet Otto, who was diagnosed with a heart disease soon after he was born. We got the chance to have Otto's mom, Abby, take us through some of the hardest and most inspiring moments of Otto's journey.
To start off, tell us about Otto and his fight with CHD.
Where oh where do you begin with someone like Otto. Otto was born on July 27, 2017 with a known heart defect called AVSD or AV Canal which, long story short, is a hole in the heart. This was discovered at our 20-week ultrasound, but once he was born, there were more issues discovered. We had suspected the additional defects (mitral valve regurgitation and a hypoplastic aortic arch) (basically means his valve that pumps blood to the lungs leaks blood back in the wrong way and he has a narrowing of his aortic arch). The plan was to correct these issues between 3-6 months, but unfortunately we didn't make it that far and Otto had his first heart surgery at 2 months old (October 4, 2017). The surgery at first was considered a complete success but the next 24 hours proved otherwise. He was hypertensive over night and the stitches just couldn't hold. Our surgeon described it as trying to sew into wet tissue paper. Otto did not progress at all for two days and a second emergency surgery was scheduled. However, after almost 3 days of not being able to hold him, one of our nurses let me sit with him in my arms. For 4 hours I didn't move, and Otto's blood pressure began to calm down — so much so that the doctors walked in and thought there was something wrong with the monitor. Anybody who doesn't believe in the power of prayer and human touch can bear witness to Otto. I knew at that moment his father (Joe), Otto, and myself were sealed. We were a team. Before laying him back in his hospital bed that night, I held his little hand and told him, "Otto, you need to work hard. You need to get better. You need to help us get you out of here so you can be our little boy and we can be your parents."
Our surgeon postponed the emergency surgery because Otto continued to improve. Then it was postponed again, and again, and again until we were eventually moved out of the PICU (pediatric intensive care unit) and onto a recovery floor and eventually home.
Our goal was to get until 18 lbs or April. Here we are over 18 lbs and April, and the second surgery is getting pushed back further and further. The doctors still say one, two, maybe even three more open heart surgeries are in Otto's future, but there is one thing we know for sure: Otto is the definition of a fighter and will get through this.
Following Otto's story and your documentation of it has really inspired us. How has documenting the experience helped you and your family?
Having a kiddo like Otto forces you to slow down and take things one day at a time. However, time is still a thief and there are weeks that go by in a total blur. There are mornings I pick up Otto and I swear he has grown overnight. Being able to document his monthly progress allows us to look back and remember where we started and how far we have come. From his birth in the NICU, home for a few months, heart surgery, coming home and growing and playing and learning like any other baby has been an absolute answer to prayer. We are grateful for the reminder from each month that Otto is strong and God is good.
We absolutely love all the photos you post of Otto, but if you had a favorite photo, which would it be?
Oh no a favorite!?!? I would have to say my absolute favorite photo is the first one of him and me Earth side. We didn't find out what the gender was until he was born. I remember just holding my breath and looking in to Joe's eyes, and we waited for what seemed like eternity for that first cry, and then it came. The doctor called out "Does red hair run in your family?!" (No it doesn't, haha) But then she called out, "It's a boy!" I remember frantically looking over to my side trying to see around the curtain, and they held him up. I just remember my heart exploding and thinking I have a son. The man I love most in this world and I have a human here together and it's a boy and he is my son. They placed Otto by my shoulder and I reached my arm over and just... was speechless. Joe snapped a picture of that first moment and every time I look at that photo, I just remember everything about that moment and it was truly perfect.
We know this battle is long and hard for your family and want to know how you continue to keep fighting each day.
It's hard. I'm not going to sugar coat it. The reality of that first surgery is starting to hit us and it's terrifying to think that we have to go through this again and maybe even again. There are three things that keep us going. 1.) Otto is so happy. He truly is the happiest baby I have ever come in contact with. I made a promise to God when Otto was in the hospital that another heart mom shared with me. I prayed God, if you can heal Otto I PROMISE that Joe and I will give him the most beautiful life we can. Some days I am better at it than others, but we work hard to give Otto a beautiful life and that is motivation to keep on fighting. 2.) That day is not today. There are days when I find myself googling all the horrible things about valve replacements, surgeries, etc. But I have to close the computer and walk away. I tell myself that day is NOT today. It's not even on a schedule yet. Do not ruin this beautiful day and steal the joy from it by worrying about something that isn't yet to be. 3.) A great devotion I completed by Ann Voskamp shared that "Worry is the facade of taking action when prayer is." I've held tight to that day after day when I find myself slipping up and thinking too much about what could potentially happen. Worry does nothing.
Which milestones do you look most forward to with Otto?
Oh gardening with his mama for sure. We live on 12 acres in the country, and I cannot wait for him to help daddy with chores (we have sheep and chickens) and come play in the dirt with me. Gardening is my escape, and this summer I have a little plot out there for "Otto's Garden."
In what ways have those around Otto rallied around him in love and support?
Social media platforms like Instagram and Facebook have really made Otto everyone's baby. It is incredible the encouragement, love, and support we have received not only from in-person friends and family, but also from people all around the world that we have never met. There are people who have prayer groups, raised money for CHD in his name and shared his story from here in Grand Rapids, MI, all the way to Australia. It is an amazing feeling when one of the nurses taking care of your child mentions they follow his story on Instagram and were hoping they would get him as a patient. We have been put in contact with so many amazing doctors, nurses, support groups and fellow "heart parents" that we would have no idea existed if not for social media. The biggest honor is when a parent mentions that their child asks how baby Otto is doing. We even had one parent share with us that their child joined Jump Rope for Heart in honor of Otto. All the people that take time out of their day to tell us they love Otto, they're praying for him, they love following him, words can not express how grateful we are to them.
How can we support kids like Otto who are battling CHD?
There are so many amazing charities and foundations out there, but we are so grateful to the Helen DeVos Childrens Hospital of Grand Rapids, MI. Starting with the techs that caught the defect at 20 weeks to those who delivered him, Dr. Haw who performs all of these pediatric open heart surgeries, the nurses who cared for him during our stay, the doctors that call us out by name when they see us out and about. That hospital is incredible. We are so lucky to have them so close to us.
We are also grateful to the Renucci House, which is similar to the Ronald Mcdonald House. We live 1-hour from the hospital and instead of going home each night, we had a clean bed to sleep in connected to the hospital so we were never far from Otto.
Before Otto, CHD was not on my radar. I had another friend who had a son born with CHD but that was it. 1 in 100 babies are affected with CHD. Encourage women to ask questions during their ultrasound, ask for a doppler ultrasound of the heart. I had no idea this was even an option but I didn't have to. My tech caught it and she's amazing. Before babies leave the hospital, make sure they get a pulse OX test. This is a simple, non-invasive way of checking for a potential CHD. Most hospitals do this, but it never hurts to ask.
Lastly, we always like to ask: what is currently up on your letter board?
His last milestone photo phrase. I look forward to his monthly birthday and getting to switch the number before the month. It makes his progress seem extra official.
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