Had a decent cardiology appointment today which gave us the green light to plan our return to Ithaca prior to surgery. Kellyn still has a very classic case of Tetralogy of Fallot with a tight pulmonary system. The main problem with this is that it prevents her from distributing a normal amount of oxygen throughout her body. She continues to gain weight (11 oz. in 4 days and looks good. We'll be seing the cardiologists every two weeks in Rochester to track her progress and set a surgery date. The team will meet in the approaching weeks to discuss her case in greater detail and chart the specific course of action.
For now we are packing our bags and leaving the comfortable confines of our families in Rochester. Thanks to Rose, Dan and Diane and all the extended family in Rochester for their assistance and support this last month. We really look forward to returning to Ithaca and will not soon forget all the great help from everyone in Roc City!
Its been an intense week - Kellyn now over a week old. I feel like I've known her my entire life. At one moment I feel awestruck by her (and Evies) strength and beauty, and another I am frustrated beyond belief for what they must endure. Its been rough, but great at the same time.
One of the things that has struck me about difficult situations like the one we are dealing with is the distinct sincerity that people interact with us (when the choose to interact). Certainly there have been some inappropriate comments (I understand that people really don't know what to say to someone who has two children with major heart concerns - and I prefer this to not acknowledging the situation at all) but this really brings out the best in people. Most everyone has wrestled with a difficult situation that makes them feel helpless. I've been taken by the number of folks who have dealt with major medical issues and have shared those stories with me. I've appreciated those stories - thank you - and believe living through these things hurts but places a renewed focus on the present moment and items that we do have control over.
Reflections on spending time in the 60-baby Neonatal Intensive Care Unit at Strong...
Transcending the NICU
Babies of all sizes and colors,
ailments varied as much as approaches.
Glassy-eyed parents holding bedside vigils or in most cases sadly absent.
Stimulation overload of alarmed machinery attached to wrapped blankets inside isolets.
Nurse chatter and wild shrieks of children who should be cooing.
Reflections on having a baby in early summer (especially this summer)...
Weather is great and with World Cup running strong I can barely think of a better time to be hanging with a newborn.
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