03 October 2012

26 Weeks Pregnant: Re-Capping Our Day at the Cleveland Clinic

Our day began at 5:45... up and at 'em: shower, prepare ourselves for the day, get Matthew up and packed for the babysitters and we were out of the house by 7:20.  We left ourselves plenty of time to get to the Clinic as we weren't sure how much extra time we'd need for traffic and parking once we got downtown (and we even stopped for gas and McDonald's breakfast on the way).  After circling the parking garage, we finally found a spot and began making our way to the main building. 
Our first appointment of the day was a repeat fetal echocardiogram to take a look at baby's heart defect and verify it hadn't grown worse since our last appointment 6 weeks earlier.  All in all, the appointment went well and we learned that baby's heart defect is still present, but is mostly unchanged.  The doctor reminded us that his right ventricular chamber is considered to be mildly unbalanced as it is a bit smaller than the left side, also she found a new minor leak below one of the artery valves.  She described the leak to be very minor and not something for us to worry about at this point.  Following the fetal echo, we called our fetal care coordinator, who came to meet and walk us to the genetics department.  While there we met with a genetic counselor who talked to us about baby's diagnosis... she shared lots of scary statistics about other health issues often related to Down syndrome and I left the appointment feeling discouraged and a bit upset.  We then found our way to the cafeteria, which was an overwhelming experience.  As a note to self: avoid the lunchtime rush and never, ever go to that place between noon and I PM again!  After lunch we met back up with our fetal care coordinator and she led us on tours of the "special delivery unit", where baby will come into the world, the rooms in the recovery area where I will be moved to following delivery and of course the NICU and PICU areas.  Following these tours, as we waited for our meeting with baby's surgeon, we were able to rest a bit in one of the familly waiting areas.  As we sat there, I began to cry (again!) and Dustin proceeded to comfort me by putting his arm around my shoulders and he also reminded me that while baby is in these units... he won't be in our hands, but he will be in the hands of great nurses and doctors and he will be okay, we will manage and we will be home before we know it.  During this conversation, I noticed a woman a few seats away from us look our way... she almost seemed as if she wanted to say something, but before should could, our coordinator came back and we were immersed in conversation with her again.  We found out that our surgeon was in an operation with one of two twins that were born three days earlier.  In place of the surgeon, we talked with the pediatric cardiac nurse practitioner who will be assigned to our baby after he arrives.  She was very encouraging as we talked through questions and concerns and we left feeling good about meeting her.  We agreed to schedule another appointment with our surgeon sometime within the coming weeks. 

By this time, we'd been at the Clinic for over 6 hours and I was losing steam fast.  The amount and complexity of information learned during the day combined with lots of walking and many peaks and valleys of emotions experienced were a lot to take in... and shall I remind you that I'm also pregnant!  I began feeling warm, dizzy and tired and asked Dustin to stop in the gift shop before heading home to get something cold to drink with the hopes that it might help me to feel better.  As we left the gift shop, I felt a hand on my shoulder and as I turned around, I recognized her as the woman we'd seen earlier in the day (the one that I thought wanted to talk to us).  She proceeded to tell us that she overheard our conversation about our son being in the NICU following birth and wanted to let us know that her grandchild was born two weeks earlier with a congenital heart defect and was recovering in the PICU.  She shared how her son and daughter in law were in our shoes, touring the facilities just a few months earlier and they also shared many of our same emotions and fears.  Ultimately she told us that she wanted to encourage us and let us know that their family has had as good an experience as could be expected.  She also shared that our surgeon was the same one who operated on her grandchild just a few days earlier and that he did a very good job on her grandchild's surgery.  She also asked for our names and told us that she would pray for us.  Dustin and I were both brought to tears and thanked her for stopping us to talk and for sharing her experience. 

As I looked back on the day as we were driving home, I was struck by how life is so much about give and take and you never know what's in store for the future.... In my mind I thought about how God's love is shared through each of us and how it passes from person to person... I was overwhelmed by the enormity of the day, but when when it came down to it, the personal interactions with people we didn't even know and the love of Christ that came out through our experience seemed to really leave me pondering the whole day.  There was so much to take in and process and I'm sure over the next few days, I'll continue to reflect and will have additional learnings from the day.

One logistical item learned: when we left the parking garge we were charged $10.  I was upset as I had read earlier that the parking for patients was free.  When we questioned the attendant, he shared that if you ask for a free ticket from the doctor you are seeing to verify you are a patient, you won't be charged.  Next time, we'll be asking for that parking voucher!

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