My Story

Jason and I both celebrate birthdays about a week before Christmas.  In 2007 we were given a HUGE birthday surprise when the pregnancy test I took as a joke was positive!   We were heading to Kentucky a few days after that to spend the holiday with my family and were excited to share the news.   They were completely surprised and thought we were joking, as did most people we told.   I had never been sure I wanted to be a mom but that decision was out of my hands at that point!

Eli got his name quite early in the pregnancy, maybe even before we knew we were having a boy.   I found the name Elias in my baby name book and it just felt right.   Jason didn’t really care for it, but after I was constantly referring to the baby as Eli, it grew on him and he decided that was a great name for our son. 

My pregnancy was a fairly easy one, no morning sickness or strange cravings.   I did eat the chicken salad sandwich at Chick-fil-a quite a bit, but that wasn’t anything like the often joked about pickles and ice cream.   In my spare time I spent hours researching baby products, from cribs to bottles.  We dedicated a lot of time choosing the perfect furniture.  Our friend Bill spent many hours painting the Astros mascot and logo on the nursery wall.  We were given an amazing baseball-themed baby shower by my friend Fran and my sisters-in-law Crista and Mandy.   We received so many gifts and well wishes from friends and family and had everything we could possibly need for our little guy.

I stopped working on July 31^st so that I would have a little time to finish getting everything ready before Eli was due on August 11^th.  To my surprise, my water broke on the morning of August 2^nd while I was up doing laundry at 3:30am.  I wasn’t sure at first if it had really happened, but it became pretty obvious around 5 that yes, it was my water that had leaked all over the floor.   We packed up and arrived at the hospital a bit before 7.  That whole day is a bit of a blur, but I remember the intense pain of the contractions after they finally made me start pitocin.  Ouch!  I had an epidural but never really progressed into the further stages of labor.   At 10pm my doctor decided that a c-section was in order.   We did that and Eli was out before I even knew what was happening! 

We were able to come home about a day and a half after that.   I was a nervous wreck because my boy was the only small baby I’d ever been around.  I was CLUELESS.   Jason was a natural and we soon developed a system that worked.   We had some feeding issues and ended up in the hospital a week later.  It was fine; we just had to supplement with formula and make sure he was gaining weight okay.    He started doing better and we were happy to see things moving in the right direction. 

The months our little man was here were not easy, but they were filled with so much love and joy.  We had so many issues with finding a formula, lack of movement, and breathing difficulties.   I kept taking him back to the doctor and we tried so many things….  We treated for acid reflux, changed formulas 5 or 6 times, even went and had the cystic fibrosis test done.   Our doctor never could figure out what was wrong and finally referred us to a GI.  We never made it that far though.

Christmas arrived and we had a nice little time.   Eli was too little to know much about what was going on, but he did enjoy the lights.   I would plug them up every day at 6am when we got up and they stayed on until bedtime.   We all got new Christmas jammies and wore them on Christmas Eve.   Eli looked adorable in his!   We had no idea how the happiness of those days would soon disappear.   We had went to dinner with friends on the 27^th and got home and tried to feed Eli before bed.     He ended up choking and scaring us so much that we decided we should go to the ER.  We did and it was then that the heartache began.   We were admitted hours after arriving at the ER but had no idea what was wrong.   A string of specialists, interns, nurses, etc made their way in and out of our room.  The neurology consult finally told us she thought Eli had spinal muscular atrophy.  I had no idea what that was so she finally told us; I asked what that meant and she told us most babies with it don’t live to be 2.   What?  I couldn’t believe what she had said.  We went through HELL until we were finally able to bring him home on the 31^st.  They weren’t able to do anything to help him and he was only getting worse the longer we stayed in that hospital.   I wanted him home so we could get the laughs and smiles back.   We came home with a feeding tube and had no issues for almost a week.

On January 8^th he started throwing up really bad and not doing well.  We decided to take him back to the ER.  We were again admitted and put in the PICU.   I won’t go into all the details, you can read my blog if you wish, but after a lot of fighting and arguing, we finally got a confirmed diagnosis of SMA.   We decided to engage Hospice and bring him home and enjoy what time we had.   He hated doctors and nurses and I didn’t have the heart to keep him in the hospital.  He was so unhappy and sick by then.  It was the most heartbreaking thing.   We arrived home about 4pm on the 14^th and at little after 7 that night he quit breathing in my arms.  I still can’t believe it sometimes.  I was counting on having those 2 years….  I didn’t know it would only be 5 months.   My heart and arms ache for him every day.  My life will never be the same.

Love and miss you little one.