From Hannah, Kayleigh's mom:
When I was 20 weeks pregnant I found out I was having a lil girl. I was super happy because it was the first girl for me. The next appt 4 weeks later they found some things that didn't look right in the ultrasound. The Dr came in and had informed me and my mom that she had a birth defect. Dr said she is surprised we could tell so early in my pregnancy, most the time we can't tell till towards the end of the pregnancy or after the baby is born. I was in shock devastated and hysterical. I was referred to a Dr in Wichita. Me and my mom went and they looked at ultrasounds and my records only to inform me they couldn't help that my best option would be going to Kansas City to children's Mercy. We got a appt and more ultrasounds. Me and my family were just happy we found Dr who could help save my daughter.
We made up a birthing plan so that closer to the end of my pregnancy I could deliver in KC at children's Mercy. Drs informed me that if I delivered in Salina ks where I live that her chances would be low. Her due date was 05-08-15. She was born 03-19-15. That is 50 days early, 7 weeks 1 day early. I thought I was just in pain for getting my house ready and lifting and moving heavy stuff but 2 hours passed the pain progressed. I went to the hospital to find out I was in labor. I freaked crying scared u name it I was a wreck. Dr promised they would make sure my lil girl got the best treatment. An hour passed Dr came back in to inform me she moved and is breach and I needed emergency c section. Again I freaked. 7 hours in labor and finally Kayleigh Mae Jenette Grawberg was born they immediately took her to intibate her to make sure no air got in her lungs. We were waiting for the flight team to show up from KC. They showed up got her ready to be life flighted to KC. I was a nervous wreck. I couldn't go with her due to having c section and having to stay in the hospital. 1 1/2 days they let me go early due to circumstances. When her dad and I got to children's Mercy they informed me she was stable doing good on the ventilator but couldn't do surgery till she got a lil bigger only cuz if she needed the ecmo machine and they did surgery right then it could kill her so they waited 2 weeks and was able to do surgery.
When they got in there more was in chest then thought they put things back where they needed to be and patched the hole. Surgery lasted 3 hours. She was a trooper she never had to be put on the ecmo machine and did very well. She did have to have 2 blood transfusions. Other then that she did very well. 4 weeks later we got told she could come home we were happy scared nervous. Both me and her dad had to spend the night due to them needing to tell us everything we needed to know and show us what to do in bad situations. She had to come home on oxygen and a pulseoximeter machine. We got her home and we're very happy. She did very well she went thru all her milestones later then a normal child but just worked hard to accomplish them. She turned 1 and I was so happy we made it that far she had only been hospitalized one time due to rsv in that year. When she was 14 months we were at a check up in Salina and had to have x-ray and it showed that her patch had come undone so she had to be taking back to KC. When we got there she had a xray and they gave me the best news that it had not come undone that not every one knows what to look for or how it should look when one comes undone. We got to go home. Dec 30 2016 she got sick with rsv again and pnemonia. She was hospitalized for a week, got better came home and is doing everything a normal child would do. She is now 2 and I can't be happier. She is the highlight of my life. She makes things interesting and fun. She very out going and is our baby. I know we are not out of the woods and probably never will be but we go day by day and make every day count with our lil girl.
You can follow Kayleigh's Journey on her Facebook page:
