Over the last year so so so much has happened and Ella is growing up crazy fast! Just a quick recap of some of the events (in no particular order)!
-Ella had another dance recital
-She lost her first two teeth
-She started first grade
-She started drama class
-She is 47 inches tall and weighs 47 pounds
-She loves making her own books and dressing up as different characters
-She is learning to swim in our new pool
-She is learning to ride her bike that she got for Christmas
-She adores her next door "neighbor friends"
-She turned 6... yes 6!
-She got glasses 
-She had her first dentist appointment
-She hosted a fun pool party and ran her own lemonade stand
She has come so far and this year has been full!
Heart health update.
Overall Ella is doing well, we see her cardiologist at least every 6 months and never get over the miracle of a good report! She has had a few things that have been a small concern for quite some time now. She still seems to lack endurance and energy that even with half of a heart they expect her to have and she is still having blue spells from time to time with activity. We've discussed these issues with her cardiologist multiple times and since her echocardiograms and EKGs have looked good and the symptoms haven't seemed too severe we have just kept an eye on her. We recently discovered that she is dealing with a high heart rate (tachycardia) with minimal activity and that seems to be causing her lack of endurance. For example we hooked her up to her pulse ox machine and let her play the wii. She ran/jogged in place for about 1 minute and her heart rate topped out at 191 and her oxygen was 84. You can imagine why she doesn't feel up to more activity and when she pushes herself to keep up with other kids she ends up losing her color and throwing up. We just finished doing a 24 hour holter monitor on her at home just to see how she does through a typical day (of course when I monitored her along side the holter her heart rate wasn't as high, but I guess that's how it usually goes!) We haven't heard those results yet. Based on her symptoms and the fact that we have been dealing with this for over a year and it isn't getting any better we, with her cardiologist, have made the very hard decision to send her into her 9th surgery. What it comes down to is, as good as the tests look on the outside, there are just some things that can't be seen unless they get inside. We are scared and struggling with sending her into surgery again. It's been 3 years since her last surgery and now that she is older we are sad that she will likely remember this surgery so well. The good news is that this will be a cath surgery NOT open heart! Much less risk and recovery time is minimal. That being said it is still surgery and she will still have to be put on a ventilator when she goes under and there are always risks involved. I'm not going to pretend this is easy or that I'm emotionally ready to send her back again, but Jon and I both feel a peace that this is the next step. There are a lot of unknowns and scary possibilities with the results or the outcome of this surgery but we are putting our trust in the one who already knows what that is going to be. Ella's surgery is next week. We will go into pre op on Sept. 12th and surgery is scheduled for 7:30am Sept. 13th. We have waited to share the news of her upcoming surgery until we had told her because we knew she needed to hear it from us and not a well meaning friend asking how we were doing with the upcoming surgery. She handled the news well and is scared but oh so very brave. She is mostly looking forward to watching movies in the hospital while she recovers and is dreading the lab work and IV the most, she said "the rest I'm okay with".
Will you join us in praying for our sweet sunshine as we send her back once again? Please pray for the staff, the surgeon, the results, safety from germs while we are there, prayers for strength, prayers for Ella's anxiety... etc. We just ask that you cover us in prayer. We know that this will not be easy, but we are trusting that God is in control.
-Ella had another dance recital
She has come so far and this year has been full!
Heart health update.
Overall Ella is doing well, we see her cardiologist at least every 6 months and never get over the miracle of a good report! She has had a few things that have been a small concern for quite some time now. She still seems to lack endurance and energy that even with half of a heart they expect her to have and she is still having blue spells from time to time with activity. We've discussed these issues with her cardiologist multiple times and since her echocardiograms and EKGs have looked good and the symptoms haven't seemed too severe we have just kept an eye on her. We recently discovered that she is dealing with a high heart rate (tachycardia) with minimal activity and that seems to be causing her lack of endurance. For example we hooked her up to her pulse ox machine and let her play the wii. She ran/jogged in place for about 1 minute and her heart rate topped out at 191 and her oxygen was 84. You can imagine why she doesn't feel up to more activity and when she pushes herself to keep up with other kids she ends up losing her color and throwing up. We just finished doing a 24 hour holter monitor on her at home just to see how she does through a typical day (of course when I monitored her along side the holter her heart rate wasn't as high, but I guess that's how it usually goes!) We haven't heard those results yet. Based on her symptoms and the fact that we have been dealing with this for over a year and it isn't getting any better we, with her cardiologist, have made the very hard decision to send her into her 9th surgery. What it comes down to is, as good as the tests look on the outside, there are just some things that can't be seen unless they get inside. We are scared and struggling with sending her into surgery again. It's been 3 years since her last surgery and now that she is older we are sad that she will likely remember this surgery so well. The good news is that this will be a cath surgery NOT open heart! Much less risk and recovery time is minimal. That being said it is still surgery and she will still have to be put on a ventilator when she goes under and there are always risks involved. I'm not going to pretend this is easy or that I'm emotionally ready to send her back again, but Jon and I both feel a peace that this is the next step. There are a lot of unknowns and scary possibilities with the results or the outcome of this surgery but we are putting our trust in the one who already knows what that is going to be. Ella's surgery is next week. We will go into pre op on Sept. 12th and surgery is scheduled for 7:30am Sept. 13th. We have waited to share the news of her upcoming surgery until we had told her because we knew she needed to hear it from us and not a well meaning friend asking how we were doing with the upcoming surgery. She handled the news well and is scared but oh so very brave. She is mostly looking forward to watching movies in the hospital while she recovers and is dreading the lab work and IV the most, she said "the rest I'm okay with".
Will you join us in praying for our sweet sunshine as we send her back once again? Please pray for the staff, the surgeon, the results, safety from germs while we are there, prayers for strength, prayers for Ella's anxiety... etc. We just ask that you cover us in prayer. We know that this will not be easy, but we are trusting that God is in control.
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