We got really good news at Avery's urology post-op! The deflux surgery basically worked. She has minimal in one kidney, but we are down one doctor unless she begins having issues. I am so relieved we don't have to watch her go through VCUGs year after year!
A-A and Bryce made shirts for Heart Month!
We visited Batson after taking Bryce to the doctor. We had to drop off Dr. E's yearly Heart Month happy and visit a few friends.
Sweet Emily, Mommy's past class-mate and Papaw's friend at the Cancer Center posted this! It warms my heart how many people love our sweet girl.
Avery, Caroline, and Sydney had their yearly photo shoot with Sydney's mom, Brandy. The pictures get more and more adorable, and the girls have so much fun posing! This year, we met in Downtown Jackson near Smith Park.
Some how, Jake made sure we had a pre-Heart Day date at Rusty's. I forgot how nice it is just to sit and enjoy dinner with your husband! He's a keeper!
Due to icy roads, we were unable to keep our appointment at the Radiothon; however, Avery recorded an adorable video for social media, and we shared lots of pictures, etc. to show our support for this amazing place.
I took part in a seven day challenge to spread awareness for Heart Defects. Below are some of the posts from that. I wish I could figure out why I couldn't find all the ones I posted!!
Day 1: Diagnosis, Part 2
Avery was also diagnosed with a CHD common in Turner Syndrome at birth, bicuspid aortic valve; however, the valve was supposedly not causing an issue and many born with it don't have problems. Avery had aortic stenosis, aortic regurgitation, aortic insufficiency...I don't even know really now because basically we found out that her aortic valve was completely fused and not working (unicuspid). It did cause issues...very serious issues. Avery saw the cardiologist every 2 months or so then, and he took her into the cath lab a few times. He was struggling because things looked okay one minute, then she looked really bad the next. He knew that timing was everything, and he didn't want to wait too soon or too late to handle it. Avery was really little, and size does matter when it comes to bug surgeries. Jake and I were both at every appointment, and since the previous one was a good one...she looked like surgery wouldn't come for some time bc the heart surgeon from D.C. felt it could wait...I went to this one alone. Dr. Ebeid came in and said she needed surgery and needed it immediately, and he was very worried. He needed me to ask for a 2nd opinion, and I finally "got" that, so I asked. Next thing I knew we would be sent to New York within about 2 weeks...life was a blur and the hand of God through others took care of everything.#1in100 #chdweek
Avery was also diagnosed with a CHD common in Turner Syndrome at birth, bicuspid aortic valve; however, the valve was supposedly not causing an issue and many born with it don't have problems. Avery had aortic stenosis, aortic regurgitation, aortic insufficiency...I don't even know really now because basically we found out that her aortic valve was completely fused and not working (unicuspid). It did cause issues...very serious issues. Avery saw the cardiologist every 2 months or so then, and he took her into the cath lab a few times. He was struggling because things looked okay one minute, then she looked really bad the next. He knew that timing was everything, and he didn't want to wait too soon or too late to handle it. Avery was really little, and size does matter when it comes to bug surgeries. Jake and I were both at every appointment, and since the previous one was a good one...she looked like surgery wouldn't come for some time bc the heart surgeon from D.C. felt it could wait...I went to this one alone. Dr. Ebeid came in and said she needed surgery and needed it immediately, and he was very worried. He needed me to ask for a 2nd opinion, and I finally "got" that, so I asked. Next thing I knew we would be sent to New York within about 2 weeks...life was a blur and the hand of God through others took care of everything.#1in100 #chdweek
Day 3: Siblings
Since Avery was our first child, and we'd tried for some time to have her, we waited until she was close to four to have another child. I really wanted her to have us by herself for a while after what she'd been through, and we wanted to get her stable, so hopefully this pregnancy would be way less stressful!
Other than a brief scare with my cervix feeling too short with my OB sending me downstairs for an ultrasound, everything was normal the 2nd time around. We even had a fetal echo as a precaution, and Dr. Shores, who is amazing, pretty much assured us that HE was fine. I remember thinking there was no possible way for a child to get any bigger in my belly (but so knew better), and Bryce Allen Bell was born on January 16, 2013. My OB surprised me by having the same special doctor assist in my C-Section, so I was thrilled AND afraid! It was like a flashback. The same OR, the same doctors, and the same (yet more understated) look on Jake's face. Bryce was taken, he was 8 pounds, and he was perfect. It was a completely different experience, and I loved every second of my time in the hospital with him.
Avery adores her brother. She likes to boss him around, tell him what to wear, take his toys, and love on him. She's a great big sister! He takes medicine because of how good Avery takes hers each night, and he learns all sorts of bad habits from her too- ha! It's an amazing feeling watching them together. We used to say, "Oh, Avery will have a brother to take up for her and protect her." That is true; however, we have a feeling it will be much more the other way around! He may tower over her one day and be able to throw her over his shoulder, but he will also learn true strength, how to be tough, and how to endure the hard parts of life from his sister. Surely, he will also know who to date as well.
#1in100 #chdweek #siblings #bryceandavery
Since Avery was our first child, and we'd tried for some time to have her, we waited until she was close to four to have another child. I really wanted her to have us by herself for a while after what she'd been through, and we wanted to get her stable, so hopefully this pregnancy would be way less stressful!
Other than a brief scare with my cervix feeling too short with my OB sending me downstairs for an ultrasound, everything was normal the 2nd time around. We even had a fetal echo as a precaution, and Dr. Shores, who is amazing, pretty much assured us that HE was fine. I remember thinking there was no possible way for a child to get any bigger in my belly (but so knew better), and Bryce Allen Bell was born on January 16, 2013. My OB surprised me by having the same special doctor assist in my C-Section, so I was thrilled AND afraid! It was like a flashback. The same OR, the same doctors, and the same (yet more understated) look on Jake's face. Bryce was taken, he was 8 pounds, and he was perfect. It was a completely different experience, and I loved every second of my time in the hospital with him.
Avery adores her brother. She likes to boss him around, tell him what to wear, take his toys, and love on him. She's a great big sister! He takes medicine because of how good Avery takes hers each night, and he learns all sorts of bad habits from her too- ha! It's an amazing feeling watching them together. We used to say, "Oh, Avery will have a brother to take up for her and protect her." That is true; however, we have a feeling it will be much more the other way around! He may tower over her one day and be able to throw her over his shoulder, but he will also learn true strength, how to be tough, and how to endure the hard parts of life from his sister. Surely, he will also know who to date as well.
#1in100 #chdweek #siblings #bryceandavery
Day 4: Realization
Wow. Once Avery actually got here, and I saw her, it was the same sort of surreal it is for any parent, I think. While she was hooked up to several things in the NICU, (she was so tiny and precious) things didn't really quite sink in at that point. I think when Jake and I had to hear all that could go wrong in surgery and give our consent...we came to the realization that a surgeon was about to cut our baby's heart...the sweet little angel we'd just met...the one we weren't sure we'd ever get to meet...we were about to send her into an operating room, and, well, the rest is something that is really hard to think about. While that was a crazy time, we were as prepared as we could be because of knowing that she could have this defect. We had learned about what the procedure would be in that case, so we were familiar with what was going on to some extent. The unknown of her second defect and the unexpected journey to New York carried much more difficulty because we'd had Avery in our lives for months at that time, and we were fearful that we could lose her after having this false sense of her being okay. After having a child in circumstances like this, you learn so much about life and how precious it is. You learn just how precious of a gift children are, and while things get (your kind of) normal, in the back of your mind you're always telling yourself to never take them for granted. You're also always fighting off fears for the future. You truly realize that God is actively present, and he's showing you some pretty amazing things through your journey. #1in100 #chdweek
Wow. Once Avery actually got here, and I saw her, it was the same sort of surreal it is for any parent, I think. While she was hooked up to several things in the NICU, (she was so tiny and precious) things didn't really quite sink in at that point. I think when Jake and I had to hear all that could go wrong in surgery and give our consent...we came to the realization that a surgeon was about to cut our baby's heart...the sweet little angel we'd just met...the one we weren't sure we'd ever get to meet...we were about to send her into an operating room, and, well, the rest is something that is really hard to think about. While that was a crazy time, we were as prepared as we could be because of knowing that she could have this defect. We had learned about what the procedure would be in that case, so we were familiar with what was going on to some extent. The unknown of her second defect and the unexpected journey to New York carried much more difficulty because we'd had Avery in our lives for months at that time, and we were fearful that we could lose her after having this false sense of her being okay. After having a child in circumstances like this, you learn so much about life and how precious it is. You learn just how precious of a gift children are, and while things get (your kind of) normal, in the back of your mind you're always telling yourself to never take them for granted. You're also always fighting off fears for the future. You truly realize that God is actively present, and he's showing you some pretty amazing things through your journey. #1in100 #chdweek
Day 6: Heart Mom
I'm a mom. One that has every curve of her children's faces and every unique mark on their bodies memorized. One that has wanted to be a mom for as long as she can remember. It's the most incredible thing I've ever experienced. While what happened with Avery- the journey- may seem so terrible, it has been a defining moment in my life and my walk with Christ. It's something terribly beautiful, and I feel so honored that Avery is part of my story...an extremely important part of my purpose. I've loathed every second of the fear and pain she's endured, and I would've taken it all tenfold just to be in her place. I'm still baffled that she's here with such a small chance of survival by earthly standards, and I often carry guilt because I got to keep her when so many others aren't so lucky. I don't have the answers, I don't understand, and I know I'm not supposed to. I do know that she's here, and her being here is amazing and amazingly scary at times. I press record in my brain when I hear her laugh (she's got a great one). I take more pictures than I know what to do with. I spoil her rotten, and I buy her more clothes than she can wear. Her birthday is a week long celebration, and it's also a day that means more to me than I could ever put into words. I'm a mom, and I'm lucky to be hers. #1in100 #chdweek
I'm a mom. One that has every curve of her children's faces and every unique mark on their bodies memorized. One that has wanted to be a mom for as long as she can remember. It's the most incredible thing I've ever experienced. While what happened with Avery- the journey- may seem so terrible, it has been a defining moment in my life and my walk with Christ. It's something terribly beautiful, and I feel so honored that Avery is part of my story...an extremely important part of my purpose. I've loathed every second of the fear and pain she's endured, and I would've taken it all tenfold just to be in her place. I'm still baffled that she's here with such a small chance of survival by earthly standards, and I often carry guilt because I got to keep her when so many others aren't so lucky. I don't have the answers, I don't understand, and I know I'm not supposed to. I do know that she's here, and her being here is amazing and amazingly scary at times. I press record in my brain when I hear her laugh (she's got a great one). I take more pictures than I know what to do with. I spoil her rotten, and I buy her more clothes than she can wear. Her birthday is a week long celebration, and it's also a day that means more to me than I could ever put into words. I'm a mom, and I'm lucky to be hers. #1in100 #chdweek
Day 7: Heart Dad
There's no one Avery adores more than her daddy. I can honestly hope that she marries someone just like him on day. He doesn't miss a serious appointment and actually takes Avery to most of her regular check-ups to save my days off work. Jake takes her to school every day, and does a better ponytail than I do. He stops everything after work to play with the kids, helps with baths and getting ready for bed, and will get up in the middle of the night when they are sick. He's more than a good dad, he's a great one. Avery is definitely the apple of his eye. Along with her sparkly blue eyes and long lashes, her confidence and sense of humor come from him. I forgot to mention that he even worked full-time while earning his Master's degree from MC as we went through my pregnancy and two heart surgeries. He's the tough one who helps us stay focused! #1in100 #chdweek
There's no one Avery adores more than her daddy. I can honestly hope that she marries someone just like him on day. He doesn't miss a serious appointment and actually takes Avery to most of her regular check-ups to save my days off work. Jake takes her to school every day, and does a better ponytail than I do. He stops everything after work to play with the kids, helps with baths and getting ready for bed, and will get up in the middle of the night when they are sick. He's more than a good dad, he's a great one. Avery is definitely the apple of his eye. Along with her sparkly blue eyes and long lashes, her confidence and sense of humor come from him. I forgot to mention that he even worked full-time while earning his Master's degree from MC as we went through my pregnancy and two heart surgeries. He's the tough one who helps us stay focused! #1in100 #chdweek
Bryce-Man....
A little St. Paddy's thrown in with a green iced donut from Shipley's!
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