Surprises

After Maren was born I thought she would be our last baby.  Silas was definitely a surprise, not an accident, but a surprise.  Surprises are good.  During my pregnancy I felt like something just wasn't right.  I was a little more nervous, I had two friends who had stillborn babies recently and I worried that something would go wrong with mine.  Right after Silas was born, Ben took pictures of him and then came and showed me.  After looking at the pictures and hearing what he measured him, I knew something was different about him.  When I saw the pictures Ben took I even called him a midget.  I didn't know that midget is considered a bad name and very derogatory.  My apologies to anyone offended.  I didn't get to see Silas much until the next afternoon.  When the pediatrician came in to see me the morning after Silas was born he mentioned that Silas had a very long torso and short limbs.  I told him that was a Yancey trait.  He also said that Silas had a very prominent forehead and a big head.  He then told me that he thought that maybe he had Achondroplasia.  For a second I thought what is that and then the word dwarfism popped into my head.  I wasn't shocked or anything, after seeing how small he looked at birth while weighing nearly 9 lbs.  I knew that he was a dwarf.  The doctor told me that he ordered some x-rays and wanted us to see a geneticist.  I was trying to process all of this information, but I was never upset or worried about it.  When Ben came to see us I told him what the doctor had said.  We both said that it didn't matter if he had Achondroplasia or not, he would be loved.  That night I had some time by myself to sit and read up on Achondroplasia on the internet, I knew that this is what Silas had.  I felt very calm and the words from Joseph B. Wirthlin's conference talk "come what may and love it" popped into my head.  I thought I do love my baby and nothing will change that.  We may have some challenges ahead, but I'll find the joy in them.  Whatever comes, I'll love it.  The next day the pediatrician stopped by again and we discussed it more.  Silas had many of the markers that pointed toward dwarfism.  Meanwhile, the doctor found a heart murmur.  Silas had an echocardiogram and they found that he also had pulmonary hypertension.  His lungs were having a hard time acclimating to normal breathing.  His lungs basically had high blood pressure.  The pediatric cardiologist ordered him to be on oxygen.  Because Silas wasn't having any trouble keeping his oxygen levels up he was allowed to stay in my room during the day with his oxygen on.  We went home on Saturday with an oxygen tank.  The home health people came over later that day and brought us a big tank with really long tubing so that we could take Silas anywhere in the house while still being hooked to the big oxygen tank.  We had our exciting adventure with me going back to the hospital (see previous post).  Ben took Silas to the cardiologist at Utah Valley hospital on Monday.  He had an EKG and an echocardiogram.  He still had the pulmonary hypertension.  So he came back home on oxygen for a few more weeks.  On may 9th we went to Salt Lake to meet with the geneticist.  We both really liked Dr. Viskochil.  He was super nice.  We first met with a genetic counselor who took a family history from both of us, then the doctor came in and visited with us.  He said that Silas definitely has Achondroplasia.  He showed us on the x-rays some of the markers that they use to diagnose it.  He then discussed with us lots of things about this type of dwarfism.  He took lots of time answering our questions and helping us to understand what lies ahead of us.  He then examined Silas.  He told us that the next two years will be the scariest but once we get past them things should be fine.  We've had lots of doctors appointments in the last month and we will have a lot more to come.  We are going to get well acquainted with Primary Children's hospital and also Shriners hospital.  Silas has conductive hearing loss which is very common with Achondroplasia because the eustachian tubes are so small.  He keeps failing his hearing tests.  We will see an ear, nose, throat doctor (ENT) from Primary Children's later this month.  Silas will most likely have to have tubes put in his ears, and this should fix the hearing problems.  His cochlear nerve functions just fine, he just can't hear because his ears are too small.  We also get to take him to Primary Childrens in a few weeks for MRI's on his brain.  The problem is that he has to hold really still to have them and so he will have to undergo general anesthesia.  With Achondroplasia the foramen magnum, the hole at the base of the skull where the spinal cord enters the body,  can be too small which puts pressure on the spinal cord causing problems with breathing and a few other things.  After the MRI's we will meet with the neurosurgery team to discuss whether surgery is needed or not.  The good news is that Silas if off of his oxygen now.  We saw the cardiologist on Monday.  The pulmonary hypertension is gone, but the bad news is that they found a heart defect.  He has what is called coarctation of the aorta, which means he has a little extra flap of tissue in his aorta.  This tissue slows down the blood flow a little and could possibly cause some problems later on.  For now he will have to be monitored every few months by the cardiologist and he may have to have surgery later on to remove it.  For now it's a watch and see type of thing.  This little boy is full of surprises.  He's going to cause my hair to turn all gray before I turn 35, but he is definitely worth it.  I love this little boy so much.  I have felt very calm and peaceful about everything that faces us.  I know Silas was meant to come to our family and he is very loved by everyone.  He is the sweetest baby.  He may be small, but he has already had a big impact on our family.  If you want to know more about Achondroplasia, check out the Little People of America website.  It has lots of good information.