Time with Reese!

Today, we got to go for our second non-stress test.  We started these tests last week and will continue them weekly until Sam's birth.  It involves monitoring Sam's heartbeat and any contractions for about a half an hour to measure if Sam is in distress.  Last week, Sam had fun getting himself off the heart monitor so that his heartbeat could not be monitored.  He also enjoy not listening to his dad who kept reminding Sam to cooperate so that his dad and mom could get to work.


This week, Sam and I got to have Sam's cousin, Reese, join us during the test.  Reese was excited to come to hear Sam's heartbeat.  During the test, she spent time reading to him as well as providing valuable information to the nurse.  The nurse asked if I could feel movement.  She was quick to tell the nurse, "Oh yes, she can.  He moved all night and she did not get any sleep.  But I did get a good night sleep."  As well as letting the nurse know what book (We are Going on a Bear Hunt) got him to move the most and what part was his favorite (It is a bear!).   Sam really enjoyed Reese reading to him (probably more then dad's reminders to cooperate the week before!). Even through he would still move so he was off monitor some during the test, we learned he is doing well and is not in distress at this time.  Too bad Reese will not get to come keep Sam entertained each week!

This journey begin as we found out we were growing to a family of 3 this past September.  The excitment continued to grow as we shared this wonderful news with our family and friends.  On December 26, we found out that our addition would be a a little boy named Samuel David.  During this ultrasound, the tech said even through Samuel was proud to let everyone know he was a boy he was not so happy to show off his mouth and the top of his heart.  We were scheduled to come back for a follow up ultrasound on January 11.  

We were excited as we went to this follow up ultrasound thinking that it was a bonus time of getting to see our son.  We quickly learned from the ultrasound tech that Sam's heart was not developed correctly and that the doctor would be talking to us more about it.  At that time, we hoped that the ultrasound was wrong.  The doctor came in starting with "What we found was serious" and ending with "At a time like this, you cannot pray enough."   We knew it was serious when the doctor wanted us to see the fetal cardiologist as soon as possible.  Unfortunately, it was a Friday and we had to wait until Monday to get in.  

We were able to meet with Dr. Patel at Akron Children's Hospital on January 14.  Through this appointment, it was confirmed that Sam's heart had not developed correctly and had been diagnosed with Hypoplastic Left Heart Syndrome, a condition where the left side of his heart was not developed and would not ever develop.  This diagnosis would mean that Sam would spend about his first month at Akron Children's Hospital and would face open heart surgery at a week old, a second at 4-6 months, and a third at 4-6 years.   The surgery would do "re-plumbing" that would result in Sam's heart working with only the right side being functional.  

Since the initial diagnosis, we have had numerous appointments with Dr. Patel, the Fetal Treatment Center at Children's Hospital, and our general OBGYN.  Through all those appointments, it has been reinforced that the left side of Sam's heart will not change but the right side is continuing to develop as it should and what they are able to tell at this point, there are no other health concerns for Sam.  

We hope this blog will allow us to stay connected to family, friends, and prayer warrior through this journey to keep everyone connected to Sam through his journey.  We appreciate all the support and prayers we have received so far as well as the support and prayers that we will receive in the future.  

This is not the journey that we expected to take as we learned about our growing family in September but we know it is the journey that God has for us.  We have seen many miracles since that original diagnosis.  We are blessed to be so close to a wonderful Children's Hospital as well as have a team of wonderful doctors who can use their God given talents to help Sam.