Feb 22, 2011 Latest post:
Oct 25, 2019
Okay so it all started about 24 weeks into my pregnancy. Shaun and I found out that our baby boy was going to be born with a congenital heart defect called hypoplastic left heart syndrome. Imagine our world at that time .....it was definitely hard news to hear. The doctors explained our options, terminate the pregnancy, OR give birth and have our baby go thru a series of open heart surgery to fix the problem.
On October 25th about 9:14am, Isaiah Jamar Bates was born!! He weighed 7lbs 14oz. I would love to tell you that he came out screaming and the sight of him brought tears to my eyes, but truth is that wasn't the case. When Isaiah was born there was no sound and he was immediately taken away to be examined. I never had a chance to hold or even take a look at him after my delivery (mothers, can you imagine). Shaun was actually able to see him a few minutes later, and yes I was definitely jealous! I first laid eyes on Isaiah around 2 that afternoon (5 hours later)!! He was absolutely beautiful and looked completely healthy.
On November 1st, Isaiah had his first open heart surgery the Norwood. Shaun and I were with him all that morning giving him all the love we had in us to give. I actually have a 1 minute video of him playing before they took him to the OR. We were able to walk with him to the elevator. The elevator doors closed at 9:14am exactly 1 week after I gave birth to this beautiful baby boy. That day was a day I could never forget. The support we had was awesome, my parents, Shaun's parents, my grandmother (traveled from NJ), and Shauns uncle and aunt (traveled from Wilmington NC) just to wait with us in the waiting room that day. Not to mention all the other family and friends that were constantly calling and checking in. Our family never gave us a chance to think anything negative or be down about our Isaiah. With all the prayer and positive thoughts, Isaiah was finally finished at 9:30pm.......yes, that's 12 hours later!! After open heart surgery, the chest has to remain open for a few days. The first time I seen my baby I could see the inside of his chest. He was triple in size due to all the fluids and he had 3 tubes coming out of his chest. Isaiah was laid out like a log. He was a completely different child from 12 hours earlier. My world just dropped!! Nothing could have fully prepared us for what we saw with our baby. Once the initial shock calmed down, we were able to speak with the surgeon who informed us that the surgery went well. Now it was time for the recovery.
Since November 1st, Isaiah has been through a series of different procedures. It ranges from a paralyzed left diaphragm, a feeding tube being placed in his stomach, a nissen fundoplication and multiple times of going on and off the ventilator just to name a few of those procedures.
On February 13th, Isaiahs body shut down and he had to go on an ecmo (extracorporeal membrane oxygenation) machine which is a big fancy word for life support (again extremely heard news to hear and deal with). The ecmo machine is a mechanical bypass that takes place outside the body and is used when the heart and lungs are not able to function on their own. Now there were a few different reasons this took place but to sum it up in simple words.....Isaiah body was overworked! The ecmo machine gave Isaiah body a chance to rest and not have to do any work because the machine did everything for him. On Friday, the 18th, Isaiah was able to come off the machine. It was truly a Beautiful day!! That was until I spoke with the surgeon, who started speaking about a "heart transplant" being an option that we may need to start considering. WHOA!! Once I heard those words in connection with Isaiah Bates, I shut down. I wasn't sure how much more my baby could take....not to mention how much more we could take. A few days later I had a meeting with the surgeon, cardiologist doctors, nurses, and social workers about the next steps for little Isaiah. Within this meeting, I discovered a few things. The mention of a heart transplant was to discuss the fact that we need to start considering all option as a precaution. I also discovered that in order for Isaiah to start to move forward in his recovery a tracheostomy may need to happen. Since he has had constant respiratory issues, a trach is a form of a breathing tube. Its an incision in the neck which would open a direct airway in the trachea (again not easy news to hear). Now you're up to date!
Isaiah is a big boy! He weighs 14lbs! He has the biggest eyes and the chubbest cheeks a baby could have. Oh and he has a lot of attitude (with reason)! He is our inspiration and this is his journey!! Enjoy