Brantley's Story - Meme's Perspective

Last week I shared Brantley's story written by Tallan.  Today, I'm sharing Brantley's story written by me. 

Brantley’s Story – Meme’s Perspective

This is Brantley’s story from my perspective, but the story begins in 2007 when I first found out I would be a grandmother.  Ever since Jessica and Rick got married in 2003, I’ve looked forward to grandchildren so when I found out in early 2007 that would happen later in the year, I was thrilled.  I will never forget arriving at the hospital just in time to see Rick entering the nursery and watching as he bathed Phoebe for the first time.  I saw her face and my heart melted.

I was a little stunned to find out that I would become grandmother again just 9 months later and my granddaughters would only be 18 months apart.  My own kids are 9 years apart so I had no idea what I would do with two babies so close in age.  Yet, I saw Sophie’s face and again, my heart melted.  They get to visit our house about once a month and I was a little nervous about keeping them, I’ll be honest.  But I totally adore my little granddaughters and would do anything for them. 

I was equally thrilled when Jacob and Tallan told me I would be a grandmother for the third time.  In April 2011, I found out my third grandchild would be my first grandson.  I was so excited about having a little boy around again.  We also found out about this time that Brantley would have a cleft lip.  No biggie, surgery could fix that.  But after his birth on June 29, 2011, his cleft lip quickly became the least of our worries. 

After his birth, he was taken to the well-baby nursery.  He had been there for quite a while before we realized he was there.  No one had told us he had been born yet.  The blinds in the nursery were closed but we were all peeking in as best we could.  I could tell they were still suctioning him and I thought that was a little odd.  I’ve never been so scared in my life when, all of a sudden, the nurse wrapped him in a blanket and whisked him out of the nursery.  We were finally told he was having problems with his lungs and they moved him to NICU.  Sometime in the wee hours of the next morning we were told that he may have to be transferred somewhere else where they have a special machine that would help his lungs do what they are supposed to do. 

Within 24 hours of his birth, he was airlifted from the NICU at Tupelo to the PICU at LeBonheur in Memphis where he was put on that special machine, ECMO.  We left the hospital late that night and checked into a hotel to get some rest, but after just a few hours we received a phone call from Jacob to tell us that Brantley may not live.  I will never forget the fear I felt and the fear expressed on Tallan’s face.  When you have a child and they hurt or they are sick, you want to do everything in your power to make it better for them.  There was nothing I could do; there was nothing any of us could do for him.  We could not hold Brantley or touch him anywhere except for the top of his head.  All day, each time I was in his room, I would rub his head and cry.  Every time I looked at him hooked up to that huge and scary machine, I cried. 

But thank God he lived!  If my memory is correct, we were told he might be on the ECMO for 2 weeks but he was taken off after 6 days.  We still didn’t know why the ECMO was necessary for him at that point.  We did know he had Pulmonary Hypertension and Pneumothorax but not why he was having those problems.  Eventually we were told he has part of his 4^th Chromosome missing, a pretty large chunk actually.  He’s missing 4q 13.1 – 22.1 and that is quite rare.  His case is only the 5^th in the world.  In the world!  He has Polymicrogyria, Hydrocephalus and tonic spasms also.  He had (and continues to have) trouble swallowing and could not get enough nutrition through a bottle.  He was fed through a NG tube while in the hospital but he came home from the hospital with a G-tube in his tummy.  In addition to the G-tube placement surgery, he had surgery to insert a shunt to help drain the fluid from his brain and he had surgery to repair his lip.  We all hated that surgery because by then we all had fallen in love with his cleft lip, but we knew the surgery was necessary.  He will need surgery to repair a hole in his heart unless it closes up on its own and he will need surgery on the muscles of his eyes. 

With each diagnosis he was given, I felt like I had been punched in the stomach.  I would have to wrap my mind around that diagnosis, research it and learn all I could only to have the doctors come in and punch me again.  The doctors and nurses at LeBonheur were wonderful though.  They kept us informed and took time to explain things to us. 

I grieved for the little boy Brantley would not be.  I was angry, very angry.  It seemed so unfair that he would have to fight to just breathe.  I wanted him to be healthy and happy and run around and play with his cousins.  It took a while to accept the fact that he would not do those things, or at least not in the time frame that a healthy baby would.  None of these facts have ever diminished my love for Brantley.  I adore him just as much as I adore Phoebe and Sophie

I look forward to the day that Brantley cuts his first tooth, when he can sit up on his own, when he crawls, and when he walks.  All in his time though!  In the meantime, I rejoice over each small victory he has.  Just like with Phoebe and Sophie, when I look in his face and when he smiles and laughs, my heart melts.  To me, that is the sweetest sound in the world – hearing my grandchildren laugh or seeing them smile; just knowing they are happy makes me happy. 

I recall one of the doctors at LeBonheur telling us that Brantley will write his own story.  I don’t know what Brantley’s life will hold, only God knows that.  What I do know is that he is a joy and delight and I will do everything in my power to make sure he is happy.  I will do my part to love on him and make sure that he knows he is loved!