One Year ago today

One year ago today we had our first cardiac catheter, where we found out about the PDA and the pulmonary hypertension. What a year it has been. Before this day one year ago we rarely went to the doctor and even more rarely took medicine. Both the girls were healthy. Since this day one year ago we have had 4 hospital stays, 3 cardiac catheters, daily meds, monthly blood draws, almost monthly cardiology appts, oxygen, horrible bloody noses, countless emails and calls to her cardiologist, ect and this is all normal now.
I used to make fun of my sister because since the day her first baby was born she would go in and check on her through out the night. Once my girls were down for bed, I didnt go in there until morning, I just wasnt worried about it. Now I go in and check on them. I always lay my hands on Haleys chest and I pray, I actually do this for both girls, but Haleys heart beats so hard, so fast and it stops for a beat or two and then goes again. This I will never get used to, it scares the shit out of me everytime. Why does it do this now but before a year ago it was normal? What makes it stop beating and makes it start up again? It doesnt make sense, why the doc says 20 years of her heart beating this way, he doesnt know. He is guessing and that is scary. When we were up in minnesota we went swimming with my BFF and she held Haley because she was cold. My BFF said she felt her heart and it scared her. I am fully aware that something awesome is going to happen, is happening, it is completely Gods grace that she has woken up everyday for the past 6 yrs. Everyday, with 3 massive holes in her heart. And she will continue to wake up everyday, until God calls her home, whether that be tomorrow, or when she 110. I cant imagine how many people take for granted just waking up, I do.

There is another thing I take for granted and that is my bodys ability to make my own red blood cells. We have friends whos daughter has Diamond Blackfan Anemia. Her body doesnt make red blood cells so she goes in every 4 weeks for a blood transfusion. I had the honor of donating my blood for her. It was my third attempt and first time actually getting to donate. i was nervous, I do not like needles, especially big ones. But I did it. This spunky little girl has a needle in her arm every 4 weeks. I can do it every 3 months or however long it is. I just get a babysitter then I get to go relax and have a snack for at least 20 min. Bam! Its gonna help someone.

So Haley has been in first grade for about 2 weeks and two days. She is loving it! She is so excited when she gets home and she tells me about the new friend she made, sometimes its an old friend but she hasnt played with them in awhile so now they are like a new friend. She had her first spelling test and she knows how to spell all the words. I think going full day is super helpful for her, she isnt so rushed. She has to go in to take meds after lunch. The first day of school Haley told me when she got back everyone was asking her why she had to go to the nurse, she put her hand on her hip and told them because I have holes in my heart. Hahaha shes crazy. She said after that no one cared that she had to take meds. Im glad little kids are so ok with stuff when you just tell them.

I am calling the doctor tomorrow to find out when the cath will be, I think when they say 2 weeks it really means a month or two. ;-) Thats it for now. We are just hanging out and being normal!