Our daughter Harper was born on January 16, 2015. We knew before she entered this world with us that we would be faced with some challenging situations. Harper was diagnosed with HLHS at 25 weeks before birth. We knew she would have to overcome many obstacles, but not once did we lose our faith that God would take care of our girl. She was born 7lbs. 7oz. 18 inches at 2.09 pm @ Vanderbilt. She was exactly what I imagined she would be beautiful and rosy pink.
When she was three days old she underwent her first OHS known as the Norwood. During this time waiting to see how she was doing we were informed by our Cardiologist Dr. Mettler that her heart was the poorest they have seen in a very long time. They didn’t think she would make it through the night. But our God came through and she was put on ECMO for about 14 days. During those 14 days she underwent all sorts of different procedures trying to give her the best shot to come off ECMO. She finally did and we were so proud God pulled through for us once again. She did well and looked amazing for 7 days.
During the 7 days they did many ultrasounds to make sure all was well with her and it was, but they didn’t predict what would happen next. We went home just to get a good nights rest with her older brother Gavin. I kept telling my husband (Josh) that something just was not right with her. I had that feeling. I kept telling the drs but they assured me that they didn’t suspect anything form all the tests they had ran. But early morning I called to check on her before heading back and the nurse reassured me she was doing well and had a great night. But 15 minutes later they called back and she had went into cardiac arrest. I knew it I said and I flew up to Vanderbilt. When I arrived I knew that feeling that she was not going to be ok from now on. She immediately went back on ECMO and sustained being on that machine the rest of her time.
After cardiac arrest they did numerous test EEG, EKG, and ultrasounds. They even took her back again for another OHS to try and remove the clot but it was gone and we thought our prayer was answered then. But little did we knew it just moved around in her little body messing every organ up that stood a chance. During the next couple of days we watched her to see how she would progress. They decided they would take her back for another OHS to redo what they did in Norwood and just rerun her bt shunt straight to her lungs. I thought ok this is it we got this. But over time her progression just seem to worsen and we as parents had to dig deep and come to a conclusion that God needed her and we were so lucky to have her as long as we did.
Days to come she was put on dialysis to get the fluid off. She just was not doing well at this point. They told us during many meetings with them that a time would come when we would have to call family to come see her. So we called every close relative to come as soon as they could. We waited out three days of visits just to make sure everyone got to see and hold her as best as they could.
On the 15th of March at noon they would slowly turn down the ECMO machine to see how she would do. Within minutes we all knew that this was it for Harper. Her lips turned blue instantly. We prepared at that second a time we thought we would never have to face as parents. I held her in my arms and as my husband sat beside us as we watched her pass in my arms. I know that God was right there with us the whole time. Harper lived for 59 days but most of her life was spend on ECMO except 7 days.