Help Out Our Heart Warrior
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My name is Ashley and I am the proud mother of the most beautiful little girl, Gracelynn Eloise. I found out I was pregnant in February of 2018. Everything was going normal until we got our genetic testing results. We found out our daughter was high risk for Down Syndrome. I was a little scared at first, but I was more excited to know I was having a baby girl! Since she was high risk for Down Syndrome, we were told I would need a level 2 ultrasound. In simpler terms, it just means to get a better look at the fetus than a normal ultrasound. Our appointment was set for July 13th, 2018. I was about 5 to 6 months pregnant. I walked in nervous but feeling good. It didn't take long for all that to change. I was lying there on the table with warm jelly on my stomach and the doctor says, "your daughter has a heart defect." I'm not sure there are words to describe how I felt in that moment. Once she was done with the ultrasound she wiped my belly and told me I could sit up. She continued to go on about the heart defect and to be honest, I couldn't tell you what she told me that day because as soon as I heard those words my world stopped. Her heartbeat was always so strong and everything seemed fine. I just didn't understand why or what this meant for my daughter. All I knew that day was my daughter was diagnosed with Complete Atrioventricular Canal defect, and she would need open heart surgery between 3.5-5 months old.
As months went by, I had multiple check ups making sure my daughter was growing and there were no complications that would put her in danger. Every week I got to see my little girl get bigger and bigger despite her defect. I even was able to see all her hair thanks to the fancy ultrasounds. She was beautiful and I loved her so much already. Since she was diagnosed with CHD(congenital heart defect) I was offered to switch my care to another hospital that specializes in cases like Gracelynn's defect. At 36 weeks pregnant I switched my care to Advocate Christ Hospital in Oak Lawn, Illinois. I had about 3-4 appointments every week making sure everything was okay. Two weeks later on September 27th I started going into labor. On the night of September 28th I welcomed my beautiful baby girl. She laid on my chest for maybe a minute before she was taken to the NICU. I was told I had to wait two hours before I could see her again due to all the tests they had to do on her.
Fast forward to the first week of her life and everything is going well. There was even talk of my little peanut being discharged and coming home with us in a matter of days! That conversation took place on a Monday, but by Wednesday it was a different story. First, she just needed a little oxygen, but it turned into so much more. We found out our daughter was in heart failure. That meant she would not be going home after all. She needed a ventilator to help her breathe, a tube to eat, and medicine to treat her heart failure. Fast forward to the first month of her life and we are still in the NICU. A week or so before her 1 month birthday we found out they could no longer medically manage her heart failure, and she would be getting her open heart surgery to repair her defect. On October 31st her surgeons went in to patch two wholes in her heart and turning her one valve into two separate valves. This type of surgery isn't normally done this early in age because a baby's valves and/or tissue is not strong enough for repair or is too little, but Gracelynn didn't have a choice. She needed the surgery then. Fast forward to a couple weeks and she doesn't seem to be improving. They do an echocardiogram to look at her heart. That is when we found out one of the valve repairs had not worked and she was now suffering from what is called mitral valve regurgitation. It means she was suffering from backflow of her blood because her valve was not closing properly. As time goes on, we found out the amount of leakage is so severe that she will need another open heart surgery at just 1 month 22 days old. On November 19th she went back in for round 2 of open heart surgery to try and fix the mitral valve. As we sat in the waiting room knowing our daughter's heart was stopped and her life was in another person's hands all we could do was hope that this surgery would be the one to get her home. Unfortunately, that was not the case. Her tissue was not strong enough and was too abnormal prior to surgery that the repaired did not work. That meant my daughter would stay in the hospital on a ventilator until she was big enough to get a replacement valve. We weren't sure how long that would be and neither did the doctors. Within weeks of her second open heart we found out that our little Gracelynn would not progress without a replacement. For a week or so the doctors discussed if they could perform the surgery safely due to the fact she was still just too small, but Gracelynn had other plans. She decided for them. It was now or possibly never. So at almost 3 months old my daughter will be getting her third open heart surgery to get her replacement valve. I'm not sure if this one will get her home or how long she will need to recover or what this exactly means for her future. But I do know she is the toughest person I know and I am so proud to be her mom.
As her mom, there isn't much I can do for her since her main caregivers are doctors, nurses, surgeons, respiratory therapists, and the list goes on. They have been her primary caregivers since the time she was born and that's okay because she needs them just as much as she needs me and my husband. My husband is a wonderful man and has been with us everyday since we welcomed her into this world. He's been on FMLA since September which means his has not had a consistent means of income . We have had some family help us here and there which we are beyond grateful for. I believe our family could use a little more help. I am normally not the kind of person to ask for help, but its come to the point where we have run out of options. If you would like to help our daughter and family we would be so incredibly thankful. Any money raised would be going to medical bills, medicine, aftercare, and making sure she has a home to come back to whenever she is discharged from the hospital. Even if its a share on your facebook page we will be thankful. Thank you for taking time to read about my heart warrior's story. We are blessed to be her parents. She's our everything.
As months went by, I had multiple check ups making sure my daughter was growing and there were no complications that would put her in danger. Every week I got to see my little girl get bigger and bigger despite her defect. I even was able to see all her hair thanks to the fancy ultrasounds. She was beautiful and I loved her so much already. Since she was diagnosed with CHD(congenital heart defect) I was offered to switch my care to another hospital that specializes in cases like Gracelynn's defect. At 36 weeks pregnant I switched my care to Advocate Christ Hospital in Oak Lawn, Illinois. I had about 3-4 appointments every week making sure everything was okay. Two weeks later on September 27th I started going into labor. On the night of September 28th I welcomed my beautiful baby girl. She laid on my chest for maybe a minute before she was taken to the NICU. I was told I had to wait two hours before I could see her again due to all the tests they had to do on her.
Fast forward to the first week of her life and everything is going well. There was even talk of my little peanut being discharged and coming home with us in a matter of days! That conversation took place on a Monday, but by Wednesday it was a different story. First, she just needed a little oxygen, but it turned into so much more. We found out our daughter was in heart failure. That meant she would not be going home after all. She needed a ventilator to help her breathe, a tube to eat, and medicine to treat her heart failure. Fast forward to the first month of her life and we are still in the NICU. A week or so before her 1 month birthday we found out they could no longer medically manage her heart failure, and she would be getting her open heart surgery to repair her defect. On October 31st her surgeons went in to patch two wholes in her heart and turning her one valve into two separate valves. This type of surgery isn't normally done this early in age because a baby's valves and/or tissue is not strong enough for repair or is too little, but Gracelynn didn't have a choice. She needed the surgery then. Fast forward to a couple weeks and she doesn't seem to be improving. They do an echocardiogram to look at her heart. That is when we found out one of the valve repairs had not worked and she was now suffering from what is called mitral valve regurgitation. It means she was suffering from backflow of her blood because her valve was not closing properly. As time goes on, we found out the amount of leakage is so severe that she will need another open heart surgery at just 1 month 22 days old. On November 19th she went back in for round 2 of open heart surgery to try and fix the mitral valve. As we sat in the waiting room knowing our daughter's heart was stopped and her life was in another person's hands all we could do was hope that this surgery would be the one to get her home. Unfortunately, that was not the case. Her tissue was not strong enough and was too abnormal prior to surgery that the repaired did not work. That meant my daughter would stay in the hospital on a ventilator until she was big enough to get a replacement valve. We weren't sure how long that would be and neither did the doctors. Within weeks of her second open heart we found out that our little Gracelynn would not progress without a replacement. For a week or so the doctors discussed if they could perform the surgery safely due to the fact she was still just too small, but Gracelynn had other plans. She decided for them. It was now or possibly never. So at almost 3 months old my daughter will be getting her third open heart surgery to get her replacement valve. I'm not sure if this one will get her home or how long she will need to recover or what this exactly means for her future. But I do know she is the toughest person I know and I am so proud to be her mom.
As her mom, there isn't much I can do for her since her main caregivers are doctors, nurses, surgeons, respiratory therapists, and the list goes on. They have been her primary caregivers since the time she was born and that's okay because she needs them just as much as she needs me and my husband. My husband is a wonderful man and has been with us everyday since we welcomed her into this world. He's been on FMLA since September which means his has not had a consistent means of income . We have had some family help us here and there which we are beyond grateful for. I believe our family could use a little more help. I am normally not the kind of person to ask for help, but its come to the point where we have run out of options. If you would like to help our daughter and family we would be so incredibly thankful. Any money raised would be going to medical bills, medicine, aftercare, and making sure she has a home to come back to whenever she is discharged from the hospital. Even if its a share on your facebook page we will be thankful. Thank you for taking time to read about my heart warrior's story. We are blessed to be her parents. She's our everything.
Organizer
Ashley Conlon
Organizer
Westville, IN