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.

Scary with a capital S

Look how puffy I look

Skinny face

WARNING:  Super long post with lots of boring details.
Readers Digest Version:  I tried to die after Silas was born.  I spent two days in the hospital, but I'm better now.
 
Silas and I came home from the hospital on Saturday the 14th.  I did not feel good when we got home.  I felt achy and had the chills and the swelling in my feet was so bad that it spread up into my legs.  I figured the chills and aches were from my pertussis shot I got at the hospital and didn't think much of it.  Ben and I got the kids to bed and tried to go to bed ourselves.  Silas had a rough night and didn't sleep much (at all).  I started coughing and feeling worse, but I just figured it was due to being exhausted.  Silas finally went to sleep at 4:30 and Ben crashed out too.  I laid in bed and tried to go to sleep, but I kept shivering like mad.  My chest hurt and my cough was getting worse.  I remember asking Ben just before he went to sleep if he thought it was possible to get pneumonia from all the extra fluid in my body.  He laughed and went to sleep.  At 6:30 I was so miserable and coughing so hard, I got up and went in the bathroom.  WARNING-grossness ahead!  I started coughing up gunk and so I spit it in the toilet.  I was spitting up blood.  The first thought through my head was "oh no, I've thrown a blood clot.  I don't have much time."  I woke Ben up and told him he needed to take me to the hospital.  I told him what was wrong and he immediately called my mom to come over and stay with the kids.  At this point I felt like my lungs were full of stuff and I couldn't breathe.  Minutes later my mom showed up and we were on our way to the emergency room.  I remember praying all the way to the hospital and pleading with Heavenly Father.  I kept telling him that he trusted me enough to bring these children into the world, I needed to be the one to raise them.  I prayed a lot on the way to the hospital.  Finally we got to the hospital.  After dealing with a surly receptionist at the ER, we were taken back to a room.   When I explained to the nurse that I had a c-section a few days earlier and was now coughing up blood, I immediately had his attention and the doctors attention.  I remember being asked lots of questions and then the fun of having the nurse and tech try to start an IV on me.  After many needle sticks they finally got an IV in and drew labs.  I was hooked up to all of the monitors.  My blood pressure was through the roof and my oxygen saturation was really low.  I can't remember everything that happened that morning, I was just trying to concentrate on breathing.  I had such a feeling of impending doom.  I kept praying and telling Heavenly Father that I didn't want to die, I wasn't ready.  My dad came over to help Ben give me a blessing.  Things were so busy that they had to wait for a while before they could.  My poor dad was there during the worst time.  I was coughing and hacking and spitting.  I was a complete mess.  I was taken for a CT scan of my lungs to check for a blood clot.  That was miserable.  Every time I would lay back it felt like my lungs were filling up and I couldn't breathe.  I had to lay back for the CT scan.  The voice in the tube would tell me when to hold my breath and when to let it out.  I had to lay super still.  It was awful.  When I got back to my room in the ER Ben and my dad were finally able to give me a blessing.  I don't remember what was said, but I was able to calm down some.  The doctor came back with the results of the CT.  Thankfully there wasn't a blood clot.  The preeclampsia had caused my body to go into fluid overload and my lungs were full of fluid which was causing me to feel like I was drowning.  It was also causing symptoms of congestive heart failure. The treatment-lots of Lasix.  Lasix is a diuretic that helps to rid the body of excess water.  My nurse gave me 60 mg in my IV which is a lot.  So while struggling to breathe and feeling horrible, I now had to go to the bathroom, A LOT!  I spent a lot of time going back and forth to the bathroom trying to get rid of all that fluid.  As soon as I could get out of the bathroom for a few minutes, I was taken to the ICU where I spent the next day and a half.  When I got to the ICU, I was a little worried because one, the bathroom in my room was a toilet in the corner with a curtain that went around it, and two because I had a male nurse.  Male nurses are great, but I had just had a baby, I was still bleeding like crazy (TMI) and my milk had come in during the night.  I was just a miserable mess.  It turned out that my nurse was really cool and despite having to ask him to get me some pads and having him check my incision every day, I enjoyed having him as my nurse.  All day Sunday I sat in my bed in the ICU and struggled to breathe.  I had to have an oxygen mask to keep my sats up and I had heart, oxygen and BP monitors on.  I'm sure I was quite the sight.  I had an echocardiogram to check my heart and multiple blood tests done.  I think my veins may have finally recovered.  Everyone had a hard time drawing blood from me.  I ended up being stuck 12 times.  I had 2 IV's put in and multiple blood draws.  The only one that could hit the vein on the first try was the girl from the lab.  It was quite the adventure.  I laid in bed all day Sunday and waited for the doctor to come in and give me the plan for continuous treatment.  He came in Sunday evening and gave me my choice of either having an IV drip of magnesium sulfate which is a totally awful drug.  It lowers blood pressure, but it makes you feel awful.  Option two was to continue with the lasix and IV blood pressure meds which is what I was already doing.  Ben and I talked about it for a long time and went back and forth between the two.  We finally decided to just stick with the treatment I was already being given because it seemed to be working.  I really didn't want to have the mag again, I was finally starting to feel better and I didn't want to feel worse again.  I had to stay overnight in the ICU, thankfully I had another good nurse.  I was actually able to get some sleep, that is until I woke up with the girl from the lab tying a tourniquet around my arm.  I think she was a vampire or something.  Monday morning came and with it came another doctor and more tests.  This time I had a chest x-ray.  The doctor said my lungs looked fluffy.  The rest of my vitals were looking better, but I still needed oxygen and I wasn't quite well enough to go home.  Ben had to take the baby down to Utah Valley hospital for a doctors appointment and I was stuck in bed missing my baby, missing my kids and feeling like a horrible mom.  I felt guilty because my mom had to drop everything to take care of my kids and I felt bad because Ben had to juggle everything at night and take care of the baby all night.  Every time I thought about my kids I would start to cry.  By Monday afternoon, I was doing a lot better.  I was transferred to the med/surg unit where I wasn't monitored 24/7.  I had a real bathroom with a door and a shower.  I was excited about the shower.  I hadn't showered since Saturday morning just before I left the hospital the first time.  My blood pressure was finally starting to come down and I was able to have the oxygen off and keep my sats up.  I was grateful to be in the med/surg unit because my j
kids could come see me.  They weren't allowed in the ICU.  Silas stayed home with my mom, I knew it was the best for him, but I really missed my baby.  That night Ben called me after the kids were in bed.  Maren drank some hand sanitizer and Ben had to call poison control.  She didn't get much and was fine.  As if we needed anything else to worry about.  Tuesday morning I had another chest x-ray.  My lungs were looking a lot better.  The doctor came in to see me and checked me out.  He asked if I was feeling up to going home, I almost yelled Yes!!!  I called Ben and asked him to bring me some clothes and take me home.  I was sent home on blood pressure medication and told to take it easy.  I am doing much better now.  My legs and feet are skinny again and my blood pressure is almost back to normal.  My lungs were in pretty bad shape and I now have bronchitis, but otherwise I'm feeling good.  I am so grateful for my sweet husband and all that he has done to take care of me and our kids.  I am so grateful for my mom who took care of my kids while I was in the hospital, she really is the best.  I am grateful for all of our other family members who helped us out through this hard time, we are truly blessed to live close to family.  I' grateful to be alive, I know that Heavenly Father has blessed me and spared my life.  I'm grateful to be the one who gets to raise my kids.  I;m truly grateful that Silas was delivered early, I'm pretty sure that if I would have had these problems while still pregnant that neither one of us would have survived.