Where do I start? The beginning seems so long ago but is nevertheless where our experience was born. Although we haven't completed our journey yet, we have had such an amazing experience with our doctors at the Cleveland Clinic and since I've been thinking about it a lot lately, I want to call out some of our highlights.
Experience #1
At 21 weeks gestation, when we learned the news from our Perinatologist that our baby appeared to have a heart defect and Trisomy 21 - he was so very kind in how he shared the news with us. Furthermore, that evening, my regular OB doctor called me at home from her personal cell phone "just to check in". She and I talked for about 40 minutes and she counseled me on what would happen next in the pregnancy as far as what our "plan" would look like with appointments, delivery destination, etc. Although I wasn't considering terminating the pregnancy, we also talked about how the last possible abortion could happen at maybe 22 or 23 weeks (I can't recall the specifics now) and she answered my questions about what the process would be like and shared that it would be an induced labor and that I'd deliver the baby and possibly need some surgical intervention. I'd never really thought an abortion would ever be a choice for me... I've never felt comfortable with holding the power of ending a life (even that one time that I went deer hunting.... I closed my eyes before I let the arrow fly, partially hoping that it would miss...and I was relieved when it did!) Learning more about "the process" of having an abortion helped me solidify the decision against termination. I felt so grateful that my doctor took it upon herself (during her personal time) to call and talk with me. I was relieved and calmed by our conversation.
Experience #2
So my regular OB doctor's husband is an OB anesthesia fellow at Cleveland Clinic and we coincidentally met him during an appointment with our Perinatologist in Cleveland as he happened to be shadowing with him that day. It felt so good to have a connection to "home" while we were in Cleveland. He knew about our situation from talking with his wife and it made me feel at ease for him to be in on our appointment.
Experience #3
All of the appointments leading up to the delivery were well coordinated and we experienced a great level of knowledge and compassion from our doctors and their staff.
Experience #4
3:30 AM the morning of December 22nd, 2012... three weeks before my actual due date. I woke up with contractions and after realizing I had some bleeding, called the Special Delivery Unit (SDU) at The Cleveland Clinic (which was my planned delivery destination for my scheduled c-section on January 2nd). The doctor on call was great in helping me to diagnose my symptoms and suggesting that we come in (with the Clinic over an hour away and it being the middle of the night - and considering we'd have to call in some family to come take care of Matthew - we didn't want to make the trip without due cause) When we got to the Clinic, the nurses were waiting for us... we saw various nurses, OB related doctors and anesthesiologists as well as NICU doctors and cardiologists who were preparing for Luke's arrival.
Experience #5
7:45 AM the morning of December 22nd, 2012 - we were preparing for a 9 AM c-section with the doctor on call, when we learned that our Perinatologist who had been following me since 21 weeks was requesting that we hold off on the c-section until 11 AM. He was just beginning to start another unplanned c-section at a different Cleveland area hospital and he wanted to be there to complete my delivery. I was elated that he wanted to be there for us. He was the person that I'd grown to trust over the last few months and felt so blessed that he was asking us to wait for him!
Experience #6
Following recovery, the SDU nurses snuck me into Luke's room in the NICU so I could hold our baby for the first time :)
Experience #7
The morning of Christmas Eve, when we arrived at the NICU for Luke's morning feeding, we found 4 cardiologists completing his echo cardiogram. We were in one of the nation's leading heart hospitals and were allocated 4 of their cardiologists to complete a newborn echo? Such an amazing example of teamwork and collaboration!
Experience #8
The NICU director made a special exception on Christmas Day to allow Luke's big brother, Matthew to visit the NICU so our boys could meet for the first time. Usually it's against the rules for young children to visit. Matthew was healthy and they sectioned us off in a private room so he wouldn't be around the other babies. He was only there for 30 or 40 minutes, but it made our Christmas one of the most memorable we will likely ever have.
Experience #9
Being admitted to the hospital over Christmas wasn't real fun, but all of the staff were so kind! The spirit of Christmas was all around us and even the janitors mopping the floors were wishing us a Merry Christmas! One of the hospital's police/security guards gave Dustin his complementary employee Christmas meal tickets for the cafeteria. The employees of The Clinic were awesome. They are real people and they made us feel well cared for.
Experience #10
After being home a week, we noticed Luke had some labored breathing. It was 8 PM and since our local community hospital doesn't have a pediatric wing in their ER, we called The Clinic's NICU and spoke with the Director over the phone. We hung up to start a session of Face Time where he gave Luke a visual inspection and suggested we bring him up to the PICU for an exam. He was fine when we got there, but we were glad we took him in - they admitted him overnight for observation. The director told us he was glad we brought him in and that he wouldn't have been able to sleep if he had thought Luke may have been in distress. He even went so far as telling us that if he hadn't been on call, he would have driven to our house to inspect Luke there as it would have been more convenient for us with another young son at home.
Experience #11
A few days following our experience in the PICU, I took Luke for physical therapy in Wooster at Health Point. Luke's pediatrician, also a Cleveland Clinic doctor here in Wooster just happened to be there working out over lunch. He was out of the office the day we took Luke in for his 1 week exam so we hadn't seen him yet. He saw us in the lobby waiting for PT and he stopped his workout to come out and talk with us and inquire about Luke. We didn't talk for long, but the personal attention he offered us was really rewarding.
We feel so fortunate to have had such awesome caregivers and so far we are huge proponents of the Cleveland Clinic! I'm not really looking forward to surgery, but we trust we will be in good hands based upon our experiences thus far!
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