I am a 19 year old stay-at-home mother to my now almost 3-month-old son, Daniel. We are originally from Uhrichsville, Ohio, but we moved to Columbus in August with Daniel’s dad, Alex, 22, while he finished his senior year of college at OSU.
Daniel was born at Union Hospital on Dec. 28, 2012. On the 30th, before they released us from the hospital, they told our family that they found a murmur during Daniel’s newborn assessment and that we needed to follow up at Akron Children’s Hospital to get him further checked out to make sure that nothing is wrong.
This is our first baby together and it was the scariest thing we’ve ever went through. The hospital told us that they could keep Daniel again overnight to monitor him if we were too afraid to take him home and watch him ourselves, but we wanted our sweet baby home with us.
So that night we stayed up all night just watching him sleep, making sure he didn’t start to turn blue or stop breathing through the night.
The next morning we had an appointment with Dr. Jacobstein at the Heart Center at Akron Children’s, and they did an EKG and an echocardiogram on Daniel. Then we met with Dr. Jacobstein to talk about the results.
He told us that Daniel has a severe case of aortic stenosis. Daniel needed to be admitted to the hospital that day for some further testing and for a catheter procedure, which is a balloon dilation procedure to try to open up his aortic valve.
That wasn’t the way that we planned on spending our first New Year’s as a family, but we got the best care and support from all of the staff and nurses at the hospital, which made our stay a little easier.
We were finally able to go back home on Jan. 2 with our little baby and it was such a relief knowing everything was okay again.
We were scheduled for another check up with his cardiologist, Dr. Bockoven, on Feb. 27. They did another EKG and echo to make sure that everything was still okay.
During that visit we found out that Daniel’s valve is tightening again and he most likely needed another procedure. We waited a week until Dr. Bockoven could meet with the other Heart Center doctors to decide what to do next. As we planned for, they wanted to do another cath procedure to see if they could try to open the valve one more time.
Finally, March 7 was here and we had to drive from Columbus to Akron again for Daniel’s next cath procedure on the 8th. We were able to stay at the Ronald McDonald House this time with our little boy the night before his procedure.
I can’t begin to express how thankful we are for something like the Ronald McDonald House to make parents and families’ stays a little easier.
March 8 – the day of Daniel’s procedure
It never gets easier handing over your little one to the doctors to go back and be prepped for surgery. But I did have a sense of relief when I was able to meet and speak with Dr. Waight (the interventional cardiologist) and the anesthesiologist right before they took Daniel back. I knew my baby boy was in good hands.
After the procedure was over, Kristen Breedlove came out so we could talk to Dr. Waight about the procedure and find out how our little one was recovering.
When we got into his office he explained what all he did during the procedure and showed us the pictures and videos of the valve and the catheter and how they tried to open the valve again. Unfortunately it wasn’t a success this time either and it had barely opened anymore at all.
Dr. Waight told us that Daniel would need an open heart surgery because there’s nothing more they can do to try to open the valve because it’s so thick. That was the hardest news I’ve ever received and I couldn’t hold the tears back.
How can you watch someone so small that you love so much go through something like that? But I knew they had Daniel’s best interest at heart. Daniel was in the ICU again overnight and he had the BEST nurses taking care of him that I could have ever wished for.
One nurse in particular that I remember was Vicki. She was the kindest hearted lady I’ve ever met. She didn’t just take care of Daniel as a patient, but she treated him like she would her own child.
She was always there for us popping in to see if we needed anything, talking to Daniel and getting him to smile, and helping us with absolutely anything that she could. She even brought me in some baby books so I could read to him.
I will remember Vicki for the rest of our lives. She made our stay that day as stress free and as happy as she possibly could.
Before our release, all of the doctors did their afternoon rounds and talked about Daniel and all that he had been through and discussed possible future plans and what they thought was best for him.
Dr. Smith, one of the cardiac surgeons, came in and talked to us after the rounds about his recommendation for the next step towards getting Daniel better. He recommended an open heart surgery called “The Ross Heart Procedure.”
He talked in depth with us about what the surgery is and why he feels it would benefit Daniel the most. He said that he wanted to wait and talk to the team of cardiologists that following Wednesday to see what other doctors recommend also.
We drove back to Columbus that night and came back to Akron that following Wednesday afternoon to meet with Dr. Smith at the Heart Center after he was able to speak with all of the other doctors.
He informed us that all of the other doctors agreed that the Ross Heart Procedure would be most beneficial and they decided that sending us to Mott Children’s Hospital in Michigan would be the best place for Daniel to have his procedure done.
So now Daniel’s surgery is scheduled for April 19 in Michigan and we will tackle that obstacle once it gets here.
I can’t thank the doctors and nurses at Akron Children’s for making such a big decision that is best for Daniel. I could tell by that meeting that the doctors aren’t just in this field of business for the money, but to actually help children and do what’s best for them.
You don’t see that in very many places anymore. I’m so thankful that we were sent to Akron Children’s. I wouldn’t ever choose another hospital for my children. Thank you so much for all of the love and care.