Tuesday, August 31, 2010

Before the Morning

Sometimes I wonder how life is supposed to go on. It has only been a handful of days since Aaron was called home to be with our Father....the sobbing and tears still come daily, though less frequently, but we still miss our sweet baby boy constantly. There is such as large void in our lives, but the pain is now a pain of such an important piece missing in our everyday life...taking Aaron on long walks, singing to him, calming his crying, being up at all hours of the night feeding and cuddling him...these are the things I long for. It's amazing how badly you can miss something that you've never even done before.  I know that God's comfort and peace will fill this void over time and we will find joy in life again. I'm learning that it's okay to smile and laugh...a little...without feeling guilty and that over time this sorrow that is so fresh and raw will subside and when we think of Aaron, they will be joyful memories of our son who is now watching over us.

Dan and I heard something that struck a chord with us yesterday in the midst of a meltdown...it is just so true and fitting right now in this time of sorrow and grief, but really at any time in life...

"If we can trust God with our eternity, we've got to trust Him with our now."

This quote came from the story of another family who has been on the same journey with their son and was the inspiration for Josh Wilson's song "Before the Morning". (Link to song and interview is above)  The interview hit so close to home for us and we just sobbed as we watched it...from the diagnosis itself and numerous doctors offering to terminate our pregnancy, the story is so similar and the song so beautiful. What an awesome testimony to God's grace and love, although our stories have different endings. Had we listened to many of those doctors, we never would have had the joy of knowing our son or had those two precious days to love him. He is no longer suffering and God is now using him for greater things... we can rejoice in knowing that.

Saturday, August 28, 2010


Our lives have been changed forever this week.  On Wednesday, August 25th at 1:26 pm, we welcomed our son, Aaron Matthew Selby into the world....he is perfect and beautiful in every way; every tiny detail of him created by God's hands. Aaron showed us his strength and fighting spirit as he sailed through open heart surgery early on Friday morning at only two days old. We were blessed that Dan was able to hold and cuddle him prior to surgery and that we were able to spend quite a bit of time praying over him, laying our hands on him and simply basking in the joy of our son following his surgery that day.

Last night, we decided to make one last "secret" trip to Children's Hospital for the day (as Danielle had not yet been discharged from University hospital) to kiss him goodnight and love on our sweet baby boy for a few more minutes. Little did we know it would be our last chance to do so. As we were praying over another sweet baby in the CICU with her parents, Aaron unexpectedly went into cardiac arrest due to undetected severe internal bleeding. After 45 minutes of CPR, surgery right there in his isolet, and multiple attempts by the surgeons to get him stabilized on a heart and lung bypass machine, we heard the words no parents ever want to hear...."there's nothing more we can do". Our sweet little Aaron had earned his angel wings and left us to be with our Heavenly Father.

We said tearful goodbyes as we rocked our baby boy, kissed his sweet face and sang lullabies together as a family. He is no longer suffering... no breathing tubes or monitors, IV lines or surgery; he is free to be the little boy he was meant to be and is being held in the palm of God's hand now. We know that angels are singing him lullabies and rocking him to sleep, and we look forward to the day that we get to see our son again in heaven and do so ourselves.

We were so very blessed and our lives have been changed forever for the better to have known our son for the many months that we carried him and the two days he was actually here for us to hold and love on. God has shown us his faithfulness through many miracles in the past months as well as two days in which He entrusted us with the care of His child.  Even though our hearts are torn and broken, we rejoice in knowing that Aaron is back with our Father in Heaven and that he no longer suffers in this imperfect world.  And while we will never understand why Aaron was called home, we do understand God's love for us and that He has the power to work through this for His glory.

Aaron Matthew Selby, 5 lb, 15 oz, 19.3 in long...our sweet baby boy

Meeting mommy for the first time before heading to Children's Hospital

Our first family photo

Love from mommy; as close as I could get to holding my sweet boy

Quality time with Daddy before surgery

Early morning cuddle with Daddy...overjoyed to hold his son
Our little champ after his surgery

Quiet Moments with Mommy...in awe of the strength of her son

Sneaking out of the hospital to visit our precious guy after surgery

Proud Grandparents

Precious moments of saying goodbye to our beautiful gift from God

Thursday, August 19, 2010

"Hurry Up and Wait"

We have a few new updates on our little guy Aaron. It feels like the last couple weeks have been spent rushing around and hurrying to get doctors appointments in so we have a "plan" in place for Aaron's birth (whether that is a planned c-section or natural delivery, heart surgery or transplant?) only to find out from doctors that there is no plan other than to...wait. I am such a planner and like to be in control; God is certainly teaching us about faith in HIS plan and patience through all of this!

We had several doctors appointments last week (@35 weeks along) in which we found out:
~ Little man is measuring in at approx 5 lbs and 10 oz (and still growing!). Our Doctors are all very pleased with his size since kiddos with CHD tend to be on the smaller side.

~At 30 weeks along, our echocardiogram showed that the original fistula (that had eliminated surgery as an option initially) was still nowhere to be found (a 100% God Miracle!); however, a new small fistula from the right coronary artery was developing. 

~Last week, our echocardiogram showed no significant changes that our cardiologist or the surgeons could see and they are unable to determine at this point if the new fistula will be a limitation to surgery, so the consensus is to let Aaron arrive in his own time...followed by an angiogram and then a decision to go down the path of either surgery or a transplant. We are so very blessed to be in such capable hands of all of the doctors and nurses at Children's  and we are truly thankful for our WONDERFUL cardiologist; they have all been compassionate and remarkable every step of the way!

 It is amazing how quickly time has been flying by! A few weeks ago, I felt like I had all the time in the world before Aaron's arrival and now he could be joining our family any day (although we hope he waits a while longer and grows a bit more)! We are so excited to finally meet our little guy, see who he looks like and hold him in our arms, but at the same time, I am honestly anxious and fearful for what's to come. At times, I wonder if fear and anxiety show weakness in my faith, but I've spent the past nine months bonding with this little guy, feeling every kick and hiccup and watching him squirm away form the sonographers when they're on the brink of getting "that perfect shot" they wanted on an ultrasound. God knows my heart, including my fears, hopes, anxiety and prayers...and I guess I couldn't really consider myself a mom if I wasn't worried about what's to come for our son. As ironic as it sounds, once he's in our arms, we can't protect him anymore... but we know that God has a plan and He will have His loving and healing hands around our son. All we can do is continue to pray and have faith...

"For you created my inmost being;
You knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well." 
~Psalm 139: 13-14

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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