This is the story of Skyy Michelle Royal, daughter of Kateya Tyndal, granddaughter of Michelle St. John (aka Grammy), great-granddaughter of Clint Bullock. Skyy Michelle Royal was born on May 7, 2014 at 11:57 pm, weighing 4 pounds, 5 ounces. While we were devastated to learn that Skyy had a hole in her heart through a routine sonogram, we were unprepared for what was to come. After three days of labor, we were elated to finally meet Skyy. The nurses cleaned and wrapped her up and put her to her mommy’s breast, only to realize she couldn’t feed. Giving her mommy 5 minutes to get acquainted, they whisked her away to do a thorough examination. And this is where our rollercoaster ride began. It turns out she had a condition called Esophageal Atresia with Trachaodsophageal Sifpula which means that her esophagus and stomach where disconnected. This condition was so serious, within hours of being born, Skyy had to be helicoptered to Maria Fareri Childern’s Hospital in Westchester County. We were told that in order for Skyy to survive, she would need major surgery but the surgeon was very confident that it could be done. So at two days old, Skyy underwent her first surgery. But there was a problem. The MRI falsely showed that the distance between her esophagus and stomach was approximately 1 to 1 1/2 inches apart, when it was actually double that. This meant that because she was so small and the distance was so great, the surgery couldn’t be done until she grew some. All the surgeon could do was put in a button so she could be fed directly through her stomach and close her up, leaving her defect exactly like it was for a later surgery. You cannot imagine our dismay of sitting in the waiting room for six hours, only to be told that they wouldn’t be able to fix it at this time. So the waiting began! If you’ve never had to visit the NICU, I pray that you never have to! It is an experience that will put even the most faithful into a state of dismay. With blinking and beeping equipment going off, nurses and doctors at a constant and sick babies all around you; it’s all you can do to try a concentrate on your sick baby, while trying to be respectful and prayerful of the other babies and families, who for some are going through far worse then you. At two months old, they were ready to do the surgery. This time they were able to connect her esophagus and stomach but of course there is a whole process of healing and watching for scar tissue that may restrict the opening. So Skyy had to undergo several procedures where they had to insert a tube to stretch the opening. Skyy was also diagnosed with a hernia, they thought she had a stroke because she has a crooked smile (the cutest crooked smile). They said her kidneys looked a little small and then there is still the issue of her heart. It turns out Skyy has two large holes in her heart and a few small ones. While the small ones will likely close on their own, the two large ones will need to be repaired. Of course, like everything else, this is not so simple! Because the two large holes are very close together (they are literally only separated by a thin sliver of tissue), this surgery will be the most difficult. So the solution that her cardiologist has suggested, is that we wait (yes again), for Skyy to grow to see if the holes will shrink some for the best possible outcome. So for now, she has a band around her heart to control her blood pressure. To date, Skyy has had five surgeries and several procedures and spent the first three months of her life in the hospital. Her esophagus surgery was a success and she is now eating solid foods. This in itself is a blessing but not without some challenges. Children with this condition have to chew their food really well to avoid choking. Well since Skyy only has four teeth, we have to make sure the potions are small enough as to not create issues. Incidentally, Skyy loves “real” food and we were elated when she no longer wanted baby food! While Skyy has many issues, we call her our miracle baby! This past year has been very challenging and their is more to come. Just last week she had to be hospitalized for three days after a high fever resulted in a urinary tract infection. And next week she has to undergo same day surgery to readjust the band around her heart because she is growing. And then there is her heart surgery. While this is a very difficult road, their is plenty of joy as well. Skyy makes every day better. She is so loveable, funny and packs a mean right cross. We just ask that you pray for our little miracle because God is a miracle worker! And if you don’t believe in God, you don’t know Skyy Michelle Royal!
Written by Grammy 5/17/15