Help Repair Kinlee's Broken Heart




 My husband and I found out we were pregnant in September of 2013 and were so excited! We couldn't help but start telling people about the blessing God had given us! We found out the sex early and had a reveal party with our family and friends, and were so happy to find out he had blessed us with a baby girl ;) I was ready to go shopping that night! The pregnancy went on and the joy that filled our hearts was amazing, we just couldn't wait to meet our little girl, Kinlee Elizabeth Lewis, on May 29, 2014! On Jan. 2nd we went for our 20-week ultrasound and got to see her, she was moving and everything was great . . . until the ultrasound tech kept eyeing something. I started freaking out a little, she then told us she needed to get the Doctor to look at something. When she walked out of the room, my heart sank; I didn't know what was going on. Her and the doctor came back and he looked and said, the ultrasound tech was looking at her heart and yes her heart is bigger than it should be, twice the size it should be. We are going to send you to the Fetal Specialist. I lost it as soon as she walked out of the room to schedule the appt., but we prayed and prayed that maybe it was just the way she was positioned or their machine. The next day we went to the Fetal Specialist and after doing the echo ultrasound they explained to us her heart is actually 2-3 times the size it should be. He didn't say for sure but said Ebstein's Anomaly is more than likely what it might be, with a high chance of her going into heart failure the bigger her heart grows. He told us he wanted us to go and see a Pediatric Cardiologist at the Sibley Heart Center, Children's Healthcare of Atlanta. This was on a Friday and they made the appt with the Cardiologist that next Monday - Wow, talk about the longest weekend of our life. I was just sick after leaving his office and my body was numb, I didn't know what to do. We prayed and prayed for better news on Monday - and finally it was Sunday night. We prayed and went to bed with little to no sleep. We were there at 8:00am our appt time, the time we had waited ALL weekend for. They took us back, did their own echo ultrasound for almost an hour, we then went into the Doctor's office and the door shut. I didn't think the news was going to get worse, but I was wrong, it was diagnosed as Severe Esbtein's, Pulmonary Atresia, and Severe Tricuspid Regurgitation. He said there was a 30% chance of heart failure and a 50% to 60% chance after she was born and after the surgeries she would make it, and from now on I will be monitored regularly to check for fluid build-up around the heart and lungs. I lost it in his office as he was talking - this is my sweet baby girl. Why her? Why us? Once we left I didn't know what to do, or where to turn. I felt like I was loosing my faith, and I felt lost. I definitely didn't want to lose my Faith now, that's all the devil wants is for us to give up and lose our faith. Jeff, the preacher, who married Josh and I - I contacted his wife and asked if we could please come over so he could pray over us. Of course they said yes and they invited the pastor and another couple from his church over. I waited all day to go over there, I needed help and I needed to become strong again for Kinlee. We went over there, and first Jeff talked about we may never know why things happen and especially why they happen to us. We then got in a circle and they all placed their hands on Josh, myself, and Kinlee, and prayed to God. I felt so loved and so moved. After that the feeling I had was amazing, my Faith was stronger than it had ever been and I had become closer to God. We put it in his hands, and I asked that he wrap his hands around Kinlee and protect her through this, and help heal her. Back to the Cardiologist, after talking with him, before leaving he told us he wanted us to meet Kinlee's Heart surgeon and tour the Children's Hospital in Atlanta. So they called and scheduled for us to do this on Jan. 24. In the mean time we were scheduled to go back to the Fetal Specialist, for what would now be regular check-ups. We went and saw the Fetal Specialist on Jan. 17th, and after seeing our beautiful baby and watching her move all around, we heard great news, there was NO change in her heart, no fluid build up, so everything was the same, and it hasn't got any worse. We were so relieved, God was answering our prayers and I knew she was going to be fine. I finally started thinking more positive and not thinking negative. The days went on and my husband and I prayed together holding hands every night, also every night before bed I rubbed Holy Water on my belly. Prayers do work people! So the time was almost here for us to make our way down to Atlanta and meet the heart surgeon. It was the night before our appt. and I was twisting and turning all night, not able to get a lot of sleep. I was excited and nervous all at the same time, because I knew our baby would be our miracle baby!! Now it's Friday morning, Jan 24th, and we are making our way down to the Children's Hospital! My Mom came with us; she is the best Mom hands down! So we get there, sign in and register, and they call us back. We were all excited to see Kinlee again! We get in the room, and they start the fetal echo. They looked and looked and took pictures for a good 45 minutes I want to say. After the ultrasound tech is finished the Doctor that was in there, also looked some and took a few pictures. After he finished they wanted to go and get the Physician and make sure she was watching the echo and saw all the pictures. So they came back in and brought the Physician and we introduced each other and it was time to talk about what she saw and what she determined was going on. She explained Ebstein's to us and wanted to make sure we understood it as well. She had a picture of a normal heart and then drew a picture of Kinlee's heart. She went on to explain that her heart is taking up her entire chest cavity, leaving little to no room for her lungs to develop. Also, what supply's blood to the lungs wasn't formed properly, and just isn't working. She point blank told us the outcome is very grim, which at this point we need the truth. If she makes it to birth, the surgeries wouldn't help because her lungs will not be developed enough to support her. So she will live maybe a day or 2 after birth, if we make it there, like I said. Emotions started rolling and I, along with my husband and my Mother couldn't stop. Again I had the feeling of a numb body. I just stared at the wall as she kept talking, it's like the world had stopped for a second. She gave us a minute to collect ourselves and she said as of now it would take a miracle, and she has seen miracles happen. That's all she needed to say, when she said that I was bound and determined I WAS NOT giving up hope, and I was going to hope and pray, and pray and hope for a miracle for our sweet baby girl. I believe miracles happen, so before we left the hospital that was the decision I had made. Once we got home that night, before bed I cried and cried, I just felt so helpless. There was nothing I could at this point for the blessing growing inside of me, but God can do anything! I started a Facebook page called " Prayers for Sweet Kinlee " and the love and care people showed our family was absolutely incredible! I started going to the doctor every week to check for fluid buildup around her heart! Seeing Kinlee every week just made us so happy! She is so beautiful! In the meantime we sent my records to the Mayo Clinic for a second opinion from Dr. Dearani, who deals with this heart condition on a regular basis! After waiting and having dreams of the doctor calling me, I finally spoke with Dr. Dearani - he told me that until she is born he won't know if she will be able to have surgery - he has to see what all she can do on her own. Which, yes, that makes complete since, but I wanted to hear him tell me, she can have the surgery and she will be fine. Throughout this all I have wanted to hear is your baby will be fine, I think anyone would want to hear that. But that's just not the case, with these babies you just don't know, until like he said she is born. He then went to on explain we need to have her somewhere that has a wonderful Pediatric Cardiology Center, and down here I just didn't feel comfortable with these doctors. I explained to him, we would like to come up there and deliver; he thought that was an excellent choice. He told me to talk it over with my family and call him back within a few days. So we got off the phone, and yes he had given us more hope than ANY doctor down here, but it's always a lot to take in after hearing from a doctor. So, again I broke down. Like I said before I just want to know Kinlee is going to be ok. I just cried my heart out, and it felt good just letting the tears roll. A few minutes into me crying, Kinlee started moving - it's like she was saying, " Mommy don't get upset, I'm going to be ok. " I just placed my hands on my belly and just cried some more. My family and I had already decided that if Dr. Dearani agreed that coming up there was a good thing to do, then we would so it - so our decision was made. I knew it was going to be a long road ahead, but I knew with God by our side we could do anything! So I called his office back and told them that was what we were going to do - he wanted all of my records from the day we found out about her heart condition, so he could determine when he wanted me up there! We got all of that together and my Mom sent it to Dr. Dearani - a few days later I spoke with him again and he stated he wanted me up there one month before I was due - that would be the end of April. So that's where we are right now, getting ready to leave to go to the Mayo Clinic "“ My husband will come up for the birth of Kinlee but he will have to come back home to work so we can pay all of our bills. My Mom will be up there with me, and my Dad and my Husband will come EVERY chance they get, but they won't be able to stay. I know this is very hard on my Husband, not getting to spend time with his baby girl - and it will be hard for me as well, because I want him right there with me throughout all of this, like he has been. But without him working we would lose everything. We started this page to help us pay for current medical bills, and those to come along with living expenses while at the Mayo Clinic. Any donation is greatly appreciated. Please help our family to give our daughter the best care possible and to bring her home soon. God Bless and we love ALL of you!!



  • Anonymous 
    • $750 
    • 87 mos
  • Judy Smith 
    • $200 
    • 87 mos
  • Lynn Poole 
    • $100 
    • 87 mos
  • Sharon Jeffries 
    • $100 
    • 87 mos
  • Yvwania and Elyssa Smith 
    • $25 
    • 87 mos
See all

Organizer

Jenna Jones Lewis 
Organizer
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