#zipperstrong

This girl had her sixth month cardiologist appointment yesterday. I always worry, even if there appears to be no reason to worry. It is a role I am destine to play. But she is strong and her heart is strong and we don't have to see her doctor again for another 9 months.❤ #zipperstrong #ullaannabelle #markovichedwardsclan

Folds for miles. #ullaannabelle #zipperstrong #markovichedwardsclan

And she is outta there! Goodbye @childrensrandallc . You all have been wonderful with our girl. Thank you. We will be honest though, we hope we don't have to be a guest for a long, long time...like, never. #zipperstrong #ullaannabelle #markovichedwardsclan (at Randall Children's Hospital at Legacy Emanuel)

Before + After + Whole lotta grateful Wow. Do you see that top photo? Do you see the narrowing? That is the scar tissue that had formed and was obstructing the flow to Ulla's lower body. Our jaws dropped when the doctor showed us this image. We had no idea. Not only was it worse than we all had expected (including the doctor) but Greg and I were shocked that we had not noticed any signs in Ulla. No labored breathing, no sweating, no fatigue. Our doctor explained that this occurs over enough time that the body acclimates itself. I am just grateful they found it when they did. Now notice the bottom picture. Ulla's healed heart. We are so thankful for modern medicine and great doctors and nurses who are taking care of our girl. Blood is flowing again! Thank you all SO much for thinking of us, again! Your messages, prayers and positive thoughts have really put us at ease. This coming from the girl who tends to wake up in the middle of the night and can't sleep because her mind starts telling her the sky is falling. We are currently in the waiting room and will see Ulla shortly. She needs an hour of recovery and stillness so we will wait. Then we get to see her and hold her and just be. The doctors want us to stay overnight. This is just fine with us. This girl needs to be healthy and strong as she has a crazy family to return to and I have a feeling she wouldn't want it any other way. Besides, I hear Hugo really misses her. #ullaannabelle #zipperstrong #markovichedwardsclan (at Randall Children's Hospital at Legacy Emanuel)

Before, after and a whole lotta grateful. Wow, we had no idea. Take a look at the top photo. Do you see that narrowing? That is where Ulla's scar tissue was obstructing the flow to her lower body. It was far worse than we thought and even surprised the doctor. We didn't notice any changes in her because this happened over a period of time that allowed her body to acclimate to the changes. Now take a look at the bottom photo. This is what modern medicine, good doctors and nurses can do. They are taking good care of our girl. Blood is flowing again! Thank you all for thinking of us today! We SO appreciate your messages and love. Greg and I are waiting until we can see Ulla. She has an hour recovery where they want to keep her as still as possible then we will get to see her. I will stay with her overnight so that she can be monitored. Fine by us. This girl is gonna need all her energy when she returns to the craziness we call our family. #ullaannabelle #zipperstrong #markovichedwardsclan (at Randall Children's Hospital at Legacy Emanuel)

This morning, she was given her wristband and a tiny green hospital gown. We parted ways only a short time ago and were told it would only take a few hours. I no longer feel nervous or scared. This is the necessary step for our girl to have a healed heart, I just had to be given some time to realize it. Of course, I will be thrilled when this is behind us . This girl, this tiny little girl, even today had her own way of reassuring us. As we waited for the doctors in the hospital room, she laid in the crib and with complete will and determination (we named her Ulla for a reason), she rolled over from back to front, her first time ever. Of all days,of all times, she had to let us know that she has this heart thing covered. See you in a few hours Ulla girl. #ullaannabelle #zipperstrong #markovichedwardsclan #donttellhugo (at Randall Children's Hospital at Legacy Emanuel)

I put my head to her chest this morning and listened to her heartbeat. I had never done that before. It was strong and loud and strong and loud. Just what I wanted to hear. As I studied her, my thoughts wished her an abundance of years and whispered that I was so grateful she was mine. Then today, we learned that her heart needs a bit more repair. The scar tissue that has formed where the aortic arch was connected during her open heart surgery is creating a narrowing in the arch and preventing the adequate amount of blood flow to her lower body. It was discovered when the cardiologist examined the pulse in her groin. It was too faint to detect. Later it was confirmed by an echocardiogram. At the appointment, I felt the blanket of heaviness fall on my shoulders. I am scared for her. I reach for something, somewhere, to brace myself for the worry and the fear. Yes the fear. It quickly crept in, as it usually does,finding an opening in a window that I had left open. All is not perfect. On March 1, Ulla will be put under anesthesia and a catheter will run up to her aortic arch. With the help of a balloon, the scar tissue will be stretched so as to create a much more viable opening. Because she is a baby, she will likely stay overnight to be monitored. I know this is a common procedure. I know that our girl went through open heart surgery and seizures and made her way home to us. I know she is a fighter and I know she will be okay. But I also know one more thing, I am scared. #ullaannabelle #zipperstrong #markovichedwardsclan