Just breathe! Slow down, and breathe. You didn’t plan for this. You weren’t ready for this, but I wish I could tell you to soak in everything to come…and just breathe!
Today you had a baby. A beautiful baby girl who wasn’t supposed to be here for 3 more weeks. You didn’t understand what was happening as they ran you down the hall to the OR, but the sound of her first breath took yours away. The sound of her heartbeat was both frightening and magnificent at the same time.
That sound that the nurses called “a hummingbird”, doesn’t sound like it sounded at every single appointment until today. You can’t count the beats, and you don’t know what that means yet, and it feels scary and abnormal but I wish you knew how incredibly special that sound is! I wish you knew that even though you feel naive and unsure about what was coming, that it’s actually your mind’s way of protecting you from too much to process all at once…it’s actually a good thing because you just had to trust your instincts, and they are so much better than you believe them to be right now! Atrial Ectopic Tachycardia is what they called it and you felt like you were clueless and ignorant…but I wish I could tell you that you already knew everything you needed to know…You knew you loved that little girl more than you could describe and you would do anything to protect her and help her. They threw out words of medications like amiodarone and flecainide that sounded like a foreign language but you asked questions and became informed. You had no idea what was coming, but you had faith, so you had everything you needed.
“We need to send her on to Blank…and you have to stay here” felt like the worst sentence you would ever hear, but it won’t be. Just breathe. She will be ok. I wish I could tell you to take a mental picture of the flight crew that came to your room to transport her and burn their names into your mind forever, because you will forever be grateful to them, but because of everything coming, you won’t remember their names to be able to thank them later. They are part of you now and you don’t even know it yet.
That first night felt like the longest night you had ever had. As hard as it was for you, it was harder for Cory and your dad. You didn’t have to watch what they watched, as they tried to stabilize your sweet beautiful fighting girl by shocking her 6+ times. Watching her sweet body swell up from all the fluids they were trying to convert her hummingbird heart with. As hard as it was….I wish I could tell you all that it is worth it at the end….it turns out ok….this will fade away even though right now it is the most vivid thing in your memories! Just breathe.
You need to know she will make it through the first most crucial hours, and why wouldn’t she?? She was born a warrior! You will be reunited with your beautiful family, and again I wish I could remind you to pay attention to the people. There will be names you will never forget like Dr. VonBergan, Dr. Law, and Dr. Lozier…they will become your heroes….their compassion and patience will calm you everytime you are anxious and they will become part of your family. There will be others you will spend more time with and be forever grateful for, and you think there is no way you will ever forget that nurse who helped you hold her for the first time, or called you over night just to tell you she was ok, or brought you blankets and tea when you were really struggling…I wish I could tell you to write down their names. Learn their stories. Push the worry away and trust. These are the people who will change your live. Their kindness and compassion will carry you through the hardest days! You will owe everything to them, yet you will get 5 years down the road and remember their compassion but forget their names. I wish I could tell you to remember their names.
Again, they will come to you and tell you she needs to move…they aren’t sure what more they can do for her…so now it’s on to Iowa City. There is a whole department there devoted to electrophysiology and the study of electricity through your body/heart and they are the ones who have the answers. “There is a procedure they MIGHT be able to do at the U of I” they tell you…and you let your mind flood with the idea of what happens if that might turns into can’t.
You will start to wonder if you will go home with an empty car seat? You will start to wonder if you are strong enough for what’s coming. You will start to wonder if you will break even though you know she needs you, Cory needs you…little do you know…YOU need you…You can do this! Just breathe. You absolutely can do this, you are so much stronger than you think you are. Trust them. Push those thoughts out of your mind…let them fall away and trust that they have this….God has this! I wish I could tell you that when they hesitate at your questions like, “What happens if the ablation doesn’t work?” it wasn’t because there wasn’t an answer…it was because someone else had the answers, and that’s ok!! You will be ok!!!
They will try to let her grow and get bigger but her heart function will dip down to 13% and at the time, you will not understand the gravity of that note in her file….no idea what that meant….now you know….and it’s better that you didn’t!! You will soaked up all of the time you can with Cory and Chloe. You will learn that you never knew the depth of your love for your strong supportive husband who lifted you up every time you needed it until you saw how much he loves her! You lived in the moment for once in your life…I wish you could remind me to keep doing that. You will get so busy with the hustle and bustle of life that you will miss that moment when she stops being a baby/toddler and becomes a big kid….one day she is just eloquent and articulate and feisty and you can’t remember what life was like before she made you a mom. I wish I could tell you on that first night, how much of a miracle she is, and not just in the sense that all babies are….she’s special. I wish I could tell you on that first night that there was an answer to all of this…that she would be the small and youngest baby to ever have zero radiation catheter ablation performed, and they would have to modify all of the tools and instruments to fit her tiny body. I wish you knew that Dr. VonBergan was right when he said someday that would be cool. I know you can’t see it now, but it actually is pretty cool. He was right about everything…he listened, he taught, and he saved that beautiful, fast, tired, heart from wearing out. He gave you hope!
I know it doesn’t feel like it today, but this whole thing will define you in a totally different way and you will learn so much about yourself, your strength, and your faith. When you were worried about all of the things you needed to teach her and give her to help her grow, it was actually her who taught you all of the things you needed…she taught you more about courage, resilience, love, faith, humanity, and compassion than you ever knew were possible. She brought you the relationships and trials that would grow you into the person you are now. She changed your trajectory for the better and YOU are exactly the mom she was meant to have even though you doubt yourself every single day….that doesn’t change! 🙂 On that first day I wish I could tell you to cherish the time, remember the people, keep the faith, and just remember to breathe.
Guest Blog Post Written by Kate Simpson. Kate is the proud momma to Chloe (5) who is her heart hero warrior, Addie (1), and a bonus mom to her step-kids Tyler (23) and Megan (21). She lives with her girls and husband, Cory, in Fort Dodge, Iowa. She has a Master’s degree in Special Education and is currently an Instructional Coach for Fort Dodge Schools. She is an unbelievably proud heart mom and Army wife, who is forever grateful to her family and the doctors and nurses in the NICU at both Blank and University of Iowa, as well as Dr. Lozier, Dr. Law, and Dr. VonBergen. God is good all the time, All the time God is good!!!