The Beginning....

Every story has a beginning....ours is no different.  In order to understand Brady, I thought it was important to know how he entered this world and how far he has come. I am a type 1 diabetic.  I knew pregnancy would not be an easy journey-but I knew with commitment, it would be a possible journey.  Joe and I were married in 2000 and had our first child, Molly, in 2004.  I worried so much during my pregnancy with Molly. I was so scared every time I went to a doctor appointment or felt her kick or just thought about her entering this world.  Being a diabetic (and a lifelong one at that) I knew what the risks associated with pregnancy were. So I tried to do everything right with Molly.  Seven ultrasounds.  More doctors appointments than I could count.  I treated pregnancy like a full time job. But all along the way, I never ever stopped worrying that something was going to be wrong.  You see, the thing about having a serious medical condition, is that when you are pregnant, you know what is going on because you are having ultrasounds every other month.  You watch your baby literally grow and develop before you. I should have stopped worrying because  I knew Molly was healthy, big, strong and pretty much "perfect"-but I couldn't let go of the worry.  Sure enough, she was a beautiful 9lb baby who was born almost exactly on her due date.  All that time spent worrying and she was exactly the way she was supposed to be. So three years later, pregnancy didn't seem so scary.My pregnancy with Brady was not the same.  At 19 weeks, I had my second ultrasound.  Joe and I brought Molly with us to see the image of her new baby brother or sister.  We thought it would be such an incredible experience for her to find out right along with us... whether she was having a brother or sister.  She sat right next us when we found out she was going to be the big sister to a new baby brother-but she was also right next to us, when we found out something was "not quite right".  After multiple ultrasound picture angles (and multiple trips back for additional ultrasounds) and a prenatal MRI, we were told our little boy was missing the tail end of his corpus callousum.  Essentially, he was missing the tail end of the part of the brain that connects the two sides together.  Scary stuff when the doctor talks about your unborn son's brain.  But we learned that people can function quite amazingly without a corpus callousum.  Some people have learning disabilities, some people have memory problems, some people have more serious developmental delays, but some people can live their whole life and never even know they have this abnormality-essentially we were told it can cause nothing at all.  So we clung to that hope.  After a few months, I went back to focusing on our little boy to be and all the amazing possibilities ahead for him.  I tried to forget the blurry images of my son's brain. Everything was going to be just fine-just like it was with Molly.On June 10, 2011, I went for a NST test, like I had twice a week since my 32nd week of pregnancy.  Today was a different day.  It was my first day of maternity leave.  Molly was at preschool and I was getting "pregnancy day pedicure".  Today was going to be a relaxing day.  A day of to regroup and focus on the amazing journey we were about to embark on as a family of four in a few short weeks...but Brady was ready to join our world.  At 37 weeks, Brady Robert Youngblood entered this world via an emergency c-section.  He weighed a good 8lbs 4oz.  He looked like a healthy baby-but I waited...and waited...but I didn't hear the cry.  As a mother, you know what I was waiting for, that loud cry that let's every new mom and dad know that their new one has arrived!  But Brady didn't let out that cry, because he couldn't breath.  He was whisked away to the NICU before I could even see his beautiful blue eyes.   Because I had a c-section I couldn't go and see Brady until I could feel my legs again.  I knew Brady was safe and with people who loved him-his dad, his grandparents, his aunt and his godfather-but he was not with his mom.   Several hours later, I finally saw my precious little boy.  He was big and looked so out of place in the NICU, but the wires and machines attached to him made him look more like he belonged.  There are very few details I can remember about those first few chaotic hours, but the image of my son looking so much like his big sister, even though his eyes were closed and his breathing was shallow, will never leave me.  I thought I was staring down at my daughter.  Everything had to be ok, because he was the spitting image of his sister. It took several days for us to get a diagnosis as to why our little boy could not get enough oxygen in his well developed lungs.  Many tests were ruled out, many specialists came to visit and finally a pediatric ENT came to Brady's rescue and diagnosed him with laryngomalacia.  A scary, hard to spell word became an answer to our questions.  It also meant surgery for my 3 day old son.  Brady's larynx was clipped so he couldn't bring in enough oxygen. He recovered well, but spent almost 3 weeks in the NICU trying to get his numbers where they should be.  The first five days Brady spent in the NICU, I was in the same building as he was.  It was a tiny piece of comfort to be in the same place as Brady.  I could sneak to the NICU at 1 am if I wanted to and hold his hand, a nurse could call his unit and check on him while I stood next to her.  The nights were hard being on the maternity floor with no baby.  But we made it through.  For a few weeks, Joe and I drove back and forth to Royal Oak Beaumont to get to know our little boy.  He was a "giant" in the NICU and a bit of a celebrity.  There were no other 8 lb babies in the NICU-at least not for an extended stay or in the "special" rooms that Brady spent many nights.  The NICU is a place filled with such a heartbreaking combination of sadness, fear and triumph. Brady finally triumphed with the help of amazing staff, supportive family who never stopped praying or visiting and hoping.  Hope is what I learned from our NICU experience.  We didn't know very much about what lied ahead for Brady when we finally graduated from the NICU.  We didn't know that we would be back having surgery 4 weeks later because he was failing to thrive and we didn't know that we would spend many weeks focusing on low muscle tone and laryngomalacia because we didn't really know what was causing Brady's significant developmental delays...and we definitively had no idea that the tip of his first chromosome had duplicated itself and was most likely the reason we got off to such a rocky start...but we did know was that at that moment, we had hope.   The chromosome diagnosis would come a year later, so at least for a little while, we could hold on to hope that everything would be ok as soon as we got out of the NICU.  Brady's story really began with.....hope.