Sunday, August 15, 2010

Hello World!

We have finally decided to join the blogging community, not that we have a fascinating life or incredible insight to offer others, but simply as a means to allow friends and family to follow our journey with our son, Aaron... faith, hope, joy, tears and prayers included.

Well, I guess we’ll start from the beginning… below are the two letters that were sent to our family and friends initially during our journey, detailing Aaron’s story...

Our First letter:

Friday, May 07, 2010

To our friends and family,

Baby Selby has taken us on quite the unexpected journey over the past few days and we thought we should share this story with all of you who mean so much to us. This Tuesday we had the joy of finding out that we are having a son and can’t wait to introduce our sweet little boy to the world in September. However, during the ultrasound it was apparent that there was something not right, as the technician was having a hard time getting the images she was looking for. Our concerns were confirmed when our doctor said that they couldn’t get a good view of his entire heart and that we should be seen by neonatal specialists for further imaging as soon as possible.

Thursday we began at University Hospital, nervously undergoing an echo ultrasound of our baby’s heart and meeting with neonatal specialists. The results were not good and we were sent over to Children’s Hospital for another echocardiogram and consultation with fetal cardiologists. During our final meeting of the day with a cardiologist, we learned all the details of the four serious heart defects that our son has (and more about heart anatomy than we ever cared to know). Basically, one of the major heart chambers is severely underdeveloped and isn’t functioning properly due to a couple of undeveloped heart valves. To make matters worse, the main arteries that feed his heart muscle are completely out of place, making it impossible for surgeons to fix the two bad valves.

Today we went back to University Hospital for another full, detailed ultrasound of the baby’s body to make sure that there were no visual abnormalities other than what had already been discovered in his heart. The doctor is optimistic that the rest of the baby’s organs are developing correctly. Danielle also underwent an amniocentesis in which some of the fluid around the baby was extracted to be tested for any signs of chromosomal abnormalities.

Our little one’s heart defects will not affect him until he has to use his lungs after being born. Until then, our baby should continue to develop completely normal and healthy (besides his heart). Since we’ve been told that his heart condition is inoperable, we are only considering two other options: comfort care for the very short time he may live on his own, or a full heart transplant as soon as one becomes available after he is born.

We have never cried and prayed so much in one day. We thank God that we were able to see all of these wonderful doctors in such a short amount of time instead of making several trips and prolonging the devastating news we received. We are also very blessed to have had such knowledgeable and compassionate doctors and nurses during the last few days and are even more blessed to have such wonderful, supportive friends and family. Despite these terrible circumstances we trust that God has a plan for our little guy and our family, although I doubt we will ever fully understand it. We know we have a long road ahead of us, and will have to make some tough decisions that we never thought we would have to make. We ask that you will please pray for our baby boy, and that God will continue to make Himself known, guiding our decisions and healing our pain. We will continue to pray for a miracle; unceasingly and with the greatest confidence and faith.

With Love,
Dan and Danielle

Our Second Letter:

June 13, 2010

To those of you who have been following our recent journey with our son, Aaron Matthew Selby, we would like to thank you for every word of encouragement, phone call, e‐mail and prayer over the past month. They have all truly helped to pull us through one of the toughest times in our lives thus far and we could not be more blessed than to have such amazing family and friends to walk with us and support us during this difficult time. We apologize that we have not been able to respond to each of you individually, but we do want you to know that we deeply and sincerely appreciate everything you have done! Here is a recent update on our little guy and a testimony to the awesome power of prayer and faithfulness of our incredible God!

From reading our initial letter, you know that our doctors diagnosed Aaron with congenital heart disease at 21 weeks and determined his heart to be inoperable due to the combination of several heart defects including pulmonary atresia, an extensive coronary artery fistula and a possible VSD (hole in the wall of his heart that divides the two pumping chambers). Most of these defects could be surgically repaired; however, the coronary artery fistula would cause him to go into cardiac arrest if they attempted any operation as it would compromise blood flow to his heart muscle. We decided to pursue a heart transplant upon Aaron’s arrival, and know that through prayer and faith that God’s plan will be revealed in time.

This past Wednesday we met with our sonographer and new cardiologist at Children’s Hospital for our (now monthly) echocardiogram, as well as the neo‐natal transplant team to educate ourselves on all the details of the process of transplantation. The echo by the sonographer didn’t seem to us to reveal any significant improvement over the previous one; however, he was clearly puzzled and requested that the cardiologist join us to take her own look at Aaron’s heart. The look of astonishment on her face said it all as she described that she could NO LONGER find the coronary artery fistula which had been so obvious to her a month before! She went on to say that she had read about rare and unexplainable occurrences of this in medical journals, but had never herself seen one regress on its own. We are very encouraged that in the absence of the fistula, the option for surgery is now back on the table as perhaps the best course of action to repair Aaron’s heart. This is truly an exciting answer to our prayers and is evidence of God’s faithfulness and the healing work of His hands!

The surgical option would consist of a series of three open heart surgeries over the first few years of Aaron’s life and would essentially re‐route his heart’s “plumbing” around the other defects. These procedures are relatively new, as the first children to have had them are only now reaching their early 20’s. The results for many of the patients have been good and most have gone on to lead normal, active lives. A full transplant at birth may still be a viable option depending on further growth of Aaron’s heart; however, we are hopeful in the possibility of having a better option available.

Thank you again for all of your unfailing prayers for Aaron and our family! We absolutely believe in the power of prayer and that there is no explanation that can truly describe what God has done. Our prayer now is for continued miraculous healing of Aaron’s heart and His wisdom and guidance for the difficult decisions that lay ahead. Over the past several weeks, we have unquestionably felt God’s love and presence surrounding and comforting us. We will continue to follow Him, knowing that baby Aaron is in the palm of His hand and that He has a plan for us and loves us, and loves our son even more than we do.

With Love,
Dan and Danielle

“So let us come boldly to the throne of our gracious God. There we will receive His mercy, and we will find grace to help us when we need it most.” Hebrews 4:16

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