Welcome to Lilly Lorene’s CaringBridge Site
Sign In to Show Your SupportI can't believe it has been almost 6 months since I have posted an update on Lilly. A lot has happened in these last 6 months.
As I stated in the last update Lilly has a blood clot in her Fontan. It is the part of her heart that is from her last open heart surgery. She has been on a blood thinner called Xarelto. In February we went in for another cardio appointment, to get updated images and the clot still remains the same. It is in the same spot and it isn't any smaller. They believe that it could be attached to the wall of her heart. The plan is to continue the Xarelto and we go back at the end of May for ECHO and in June we will meet with hematology.. They prepared us to still expect the clot to still be there in May. The blood thinner Xarelto is a newer drug they are using on pediatric patients, if it doesn’t resolve the clot we may have to switch medication….which I am very terrified of. This could mean weekly lab draws if she goes on a certain blood thinner or worse daily injections by her Dad or I. We are REALLY hoping Xarelto works!!!
Right after Lilly's cardio appointment in November we also found out we were expecting Baby Rodriguez-Kearns #2!! This was a big surprise! Starting at 16 weeks I started going to a fetal medicine doctor to get anatomy scans done and at 24 weeks Lilly's cardiologist (Dr. Karrie) did a fetal echo and we are happy to say Baby BOYS heart is looking healthy. I got to graduate from fetal medicine and the plan is, he will go to Children's Hospital during his first week of life to get a Echo and Dr. Karrie will get a good listen of his heart. We are so excited to welcome Baby Boy this July and Lilly is very very excited to be a big SISTER.
Lilly has made so many improvements over these last few months. She started Soccer the beginning of this month and is making GOALS and keeping up with her team. She also has caught on to her scooter and is able to ride it for many minutes without needing a break. She loves playing with all of her NEW neighbor friends… YES- We moved to a house…FINALLY! Let us know if you would like our new address!!
She has been able to recover from all the fun germs we have had over this respiratory season. She had RSV (again), influenza A and norovirus. We had a scary fall in March and Lilly hit her head on concrete. We were really scared and startled because of the blood thinners she is on-they can cause bleeding if she gets a bruise. Luckily, her CT scan revealed no brain bleed. Lilly had a goose egg for almost 4 weeks. She is currently recovering from a nasty virus that has kept her home from school all week. We are hoping this weekend she takes a turn and starts to feel better!
This summer we are planning on her doing swim lessons again, trying out t-ball, bike rides and lots of pool days. We are looking forward to WARM sunny days and preparing for Baby Brothers arrival.
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