Londyn – Sagittal

imageWe were blessed with sweet Baby Londyn on December 28, 2011.  Me and my husband were more than excited to see our baby girl.  My son was also thrilled to be a big brother.  She was perfect. She looked just like her daddy and was just the cutest most precious baby girl.  Londyn saw her pediatrician before we were discharged and everything was fine.  At her 2-week appointment, Londyn’s pediatrician noticed that the back of her head was pointed. She told me to just prop her head up when she was in her seat so her head wouldn’t roll to the side. That would eventually round out the back side of her head.  Other than that, my baby Londyn was perfectly healthy.  However, a few weeks later at her 2-month doctor’s visit, the doctor dropped a bomb on me that left me in a fog of confusion.  She told me that her head was growing long and her soft spot appeared to be closing too fast.  Then she said that we will keep an eye on this over the next couple of months and determine at her 4-month visit whether or not to refer her to a neurosurgeon.  My mind went blank. I couldn’t put words together to even ask any questions. I went outside and called my mom and husband to tell them.  I think that I was still in shock because all I told them was that her head was growing long.  I then went home and settled my nerves a little and decided to do some research.  I went to google and typed “baby’s soft spot closing too soon.”  That’s when I first saw the word craniosynostosis.  I found pictures of babies with the same head-shape as my sweet Londyn’s.  I began to feel bad because how could I not see that something was wrong.  After all, I am her mother.  She is with me more than any other person in the world.  How did I not know?  So after doing some research I called my mom and husband back to give them the full story and tell them about craniosynostosis.  Over the next couple of months, I continued to do research and prayed over my baby continuously.  At Londyn’s 4-month visit, the doctor decided to make the referral to a neurologist in Macon.  A couple of weeks later, me, my husband, and Londyn made the trip to Macon.  He basically explained that Londyn appears to have sagittal craniosynostosis, but he would need to refer us to a neurosurgeon in Atlanta so he could do a CT Scan to make a definite diagnosis.  A couple of weeks later, Londyn and I made the trip to Atlanta with my cousin.  The neurosurgeon examined Londyn and told us that we would need the CT Scan but only 1 out of 10 babies that are sent to him actually have craniosynostosis.  A few weeks later we went back to Atlanta and had the CT Scan done.  That afternoon, we had an office visit with the neurosurgeon where he showed us the CT Scan and let us know that Londyn did indeed have sagittal craniosynostosis.  He told us that it is very good that the pediatrician caught it very early.  He explained that surgery would be needed to correct it and he referred us to a plastic surgeon who would also perform the surgery with the neurosurgeon.  We saw him a few weeks later.  He took pictures and told us that he would schedule the surgery as soon as they could.  Londyn was scheduled to have cranial vault reconstruction on September 7, 2012.  My husband and I made the trip to Atlanta with my mom the night before.  My father-in-law and brother-in-law and an elder from our church also came to be there for Londyn.  While we were waiting for them to take her into surgery we were all kissing on her and loving on her.  She drifted off to sleep right before they came to take her away.  We prayed over her and let her go.

The next 6 hours were nerve wracking.  A nurse called us every couple of hours to give us updates.  Then finally, the surgeon called us to a room where he let us know that everything went fine.  We should grab something to eat and we could see her in a couple of hours when they have her settled in ICU.  I remember walking as fast as I could into ICU to see her.  She looked so peaceful.  Her face was puffy and round.  I cried and thanked God that she was ok.  I stayed with her that night in ICU.  She woke up in pain a couple of times that night.  The next morning, I was able to hold her.  Her face and eyes were really swollen, but I think we were both glad to be near each other again.  Londyn was transferred to a regular room that day.  Her swelling continued to get worse especially on one eye because she refused to lay on the other side.  The first night in a regular room, the nurses came in really worried.  They were checking all her vitals and even her blood sugar.  They went so far as to call her doctors.  Everything was normal.  They were concerned because they never saw a baby that went through this surgery be so calm.  They thought something was wrong, but I knew it was God keeping her the whole time.  Londyn stayed in the hospital 4 days.  That is when her eyes began to open.  We came home and she finally saw her brother and things that were familiar to her.  And I finally saw my baby Londyn’s smile.  At home, everything got back to normal.  She didn’t need any pain medicine once she left the hospital.  She played like a normal 8-month-old.  She even started taking steps and was walking a month after surgery.  Most of the swelling went down by the time she had her 2 week appointment with the surgeons.  I am so grateful to God for everything.  My baby Londyn is healthy and happy.