One unexpected part of this experience for us was just how long it can take to get a surgery scheduled. I suppose we should have known being that it is a children's hospital that boasts some prestige, but even having the inside connection just having the heart catheterization there and the doctor recommending the surgery, it still took a month to get the date set. When one of us is a planner and both are admittedly control freaks, well, it stretched us a bit! We finally got the call yesterday and surgery is scheduled for February 1st. It's funny how the relief of having the date comes at the cost of the reality that it IS happening. How fickle emotions can be, but oh how real they are. All in all, we are at peace and trust that God is in control. One of the positive things about being scheduled is knowing which doctor will perform the procedure. We feel comfortable with any of the doctors that were recommended to us but having our cardiologist's top pick of doctors feels good too!
Thanks for your continued prayers!
~Aaron and Danae
Saturday, December 31, 2016
Wednesday, December 21, 2016
Life is an adventure...
Dear Friends and Family,
We find ourselves, once again, feeling the need to update mass amounts of people and trying to find the most effective way to do just that! To that end, we've created this blog page. We are not sure just how long we will maintain it, but for the time being, we hope it will be an adequate way of sharing our journey with you and allowing you to walk along side us.
We've been slow in sharing this update as we have been waiting for all the information to come together. As life would have it, that information has not all come together as we had anticipated and we are already feeling that "sinking" feeling of not having shared enough in a timely manner. To anyone who has first heard this from a source other then ourselves, we are sorry!
Now that we have your curiosity truly piqued, here's at least a partial update. =)
Many of you followed our adoption journey that brought sweet Jadelyn into our lives and home. She is such a blessing and fun addition to our family. She has such a sweet and feisty spirit and is determined to keep up with her brothers. She is full of life and energy and makes us laugh on a regular basis. It has been an amazing process over the last (almost) two years to watch her respond to our love and learn to interact within a family. With all the excitement of adoption, and the joy of watching her {dance, run, somersault, hop, jump, tumble, slide and bounce}her way through each day it was often easy to overlook that she was ever born with a heart condition. The only reminder for us was the regular visits with her cardiologist every three months.
{Back track}
Jadelyn was born with a heart condition known as TGA (Transposition of the Greater Arteries). In everyday words, that means that her Aorta and Pulmonary arteries (the two main ones in the heart) were flip-flopped. Normally, blood flows in a figure 8 pattern (heart to lungs to heart to body). With TGA blood flows in two closed circle patterns (heart to lungs to heart AND heart to body to heart). The problem is that oxygenated blood never goes to the body and therefore this condition is not conducive with life. However, as often is the case, Jadelyn had an additional heart condition VSD (ventricular septal defect) which means that the wall between the bottom two chambers of her heart was not complete. This allowed for her oxygen rich blood to mingle with the oxygen deprived blood and consequently, have oxygenated blood go to her body as well. Jadelyn underwent surgery in China at six months of age to have the arteries switched back to their correct places and to repair the VSD. China did a great job with these surgeries, however, adoption often has limited information and while we knew she had a repaired heart when we adopted her, we didn't know when we went to China to make her our daughter and bring her home just what her condition would look like or what (if any) interventions she would need in the days, months, and years to come. Life is an adventure, right?
{Back to Present}
Jadelyn's cardiologist has been monitoring her consistently since we have arrived home with her and has kept telling us that we are in a holding pattern and are waiting as long as possible to take any actions. It's almost what we've come to expect when we go for our visits. Our September visit was different. During her surgery in China the doctor needed to use some type of synthetic (or not Jadelyn's natural) tissue to "extend" the patch between her pulmonary artery and her right ventricle. This patch has not grown with her and consequently, as her heart has grown, she has outgrown it. The result is a narrowing that causes her heart to work too hard and enlarges her heart. Our doctor advised us that it was time for a heart catheterization to attempt to enlarge the narrow patch through a balloon procedure or stent. This procedure took place in November at the Children's Hospital of Philadelphia (CHOP) and it doesn't matter how simple the procedure is, it is NEVER easy to send your child in for it. During the procedure, it was determined that they would not be successful in enlarging the narrow patch and placing a stent also was determined to be not a sufficient option. We learned much from the imaging done through the heart catheterization which is very beneficial! The final outcome, however, was not the words we were hoping to hear. The doctor who performed the heart catheterization recommended that it is time for Jadelyn to have an open heart surgery to replace the narrow "tubing" with a larger one. We have been in the process of scheduling this procedure and while we do not have a specific date, are looking at sometime in January/February 2017.
We are a mixture of emotions as we look at the coming months. Anxiety and trust. Fear and peace. Discouragement and hope. Wanting control and needing surrender.
We are so grateful for a medical facility relatively close that is so skilled at the type of surgery she needs. (Our cardiologist described it as "changing a tire" for the surgeons at CHOP. Not at all downplaying the significance of heart surgery but encouraging us with it's "simple" nature as they are use to reconstructing hearts.) We are also grateful for our Heavenly Father who knew all this when He brought her to us - even when we didn't - and for the plan He has for Jadelyn and our family. We are trusting Him to carry us through.
Thank you for your love, support and prayers especially over the coming months. We are so very grateful for them.
~Aaron and Danae
We find ourselves, once again, feeling the need to update mass amounts of people and trying to find the most effective way to do just that! To that end, we've created this blog page. We are not sure just how long we will maintain it, but for the time being, we hope it will be an adequate way of sharing our journey with you and allowing you to walk along side us.
We've been slow in sharing this update as we have been waiting for all the information to come together. As life would have it, that information has not all come together as we had anticipated and we are already feeling that "sinking" feeling of not having shared enough in a timely manner. To anyone who has first heard this from a source other then ourselves, we are sorry!
Now that we have your curiosity truly piqued, here's at least a partial update. =)
Many of you followed our adoption journey that brought sweet Jadelyn into our lives and home. She is such a blessing and fun addition to our family. She has such a sweet and feisty spirit and is determined to keep up with her brothers. She is full of life and energy and makes us laugh on a regular basis. It has been an amazing process over the last (almost) two years to watch her respond to our love and learn to interact within a family. With all the excitement of adoption, and the joy of watching her {dance, run, somersault, hop, jump, tumble, slide and bounce}her way through each day it was often easy to overlook that she was ever born with a heart condition. The only reminder for us was the regular visits with her cardiologist every three months.
{Back track}
Jadelyn was born with a heart condition known as TGA (Transposition of the Greater Arteries). In everyday words, that means that her Aorta and Pulmonary arteries (the two main ones in the heart) were flip-flopped. Normally, blood flows in a figure 8 pattern (heart to lungs to heart to body). With TGA blood flows in two closed circle patterns (heart to lungs to heart AND heart to body to heart). The problem is that oxygenated blood never goes to the body and therefore this condition is not conducive with life. However, as often is the case, Jadelyn had an additional heart condition VSD (ventricular septal defect) which means that the wall between the bottom two chambers of her heart was not complete. This allowed for her oxygen rich blood to mingle with the oxygen deprived blood and consequently, have oxygenated blood go to her body as well. Jadelyn underwent surgery in China at six months of age to have the arteries switched back to their correct places and to repair the VSD. China did a great job with these surgeries, however, adoption often has limited information and while we knew she had a repaired heart when we adopted her, we didn't know when we went to China to make her our daughter and bring her home just what her condition would look like or what (if any) interventions she would need in the days, months, and years to come. Life is an adventure, right?
{Back to Present}
Jadelyn's cardiologist has been monitoring her consistently since we have arrived home with her and has kept telling us that we are in a holding pattern and are waiting as long as possible to take any actions. It's almost what we've come to expect when we go for our visits. Our September visit was different. During her surgery in China the doctor needed to use some type of synthetic (or not Jadelyn's natural) tissue to "extend" the patch between her pulmonary artery and her right ventricle. This patch has not grown with her and consequently, as her heart has grown, she has outgrown it. The result is a narrowing that causes her heart to work too hard and enlarges her heart. Our doctor advised us that it was time for a heart catheterization to attempt to enlarge the narrow patch through a balloon procedure or stent. This procedure took place in November at the Children's Hospital of Philadelphia (CHOP) and it doesn't matter how simple the procedure is, it is NEVER easy to send your child in for it. During the procedure, it was determined that they would not be successful in enlarging the narrow patch and placing a stent also was determined to be not a sufficient option. We learned much from the imaging done through the heart catheterization which is very beneficial! The final outcome, however, was not the words we were hoping to hear. The doctor who performed the heart catheterization recommended that it is time for Jadelyn to have an open heart surgery to replace the narrow "tubing" with a larger one. We have been in the process of scheduling this procedure and while we do not have a specific date, are looking at sometime in January/February 2017.
We are a mixture of emotions as we look at the coming months. Anxiety and trust. Fear and peace. Discouragement and hope. Wanting control and needing surrender.
We are so grateful for a medical facility relatively close that is so skilled at the type of surgery she needs. (Our cardiologist described it as "changing a tire" for the surgeons at CHOP. Not at all downplaying the significance of heart surgery but encouraging us with it's "simple" nature as they are use to reconstructing hearts.) We are also grateful for our Heavenly Father who knew all this when He brought her to us - even when we didn't - and for the plan He has for Jadelyn and our family. We are trusting Him to carry us through.
Thank you for your love, support and prayers especially over the coming months. We are so very grateful for them.
~Aaron and Danae
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