The Omar Family

Sawyer was 4 days old when we realized she was having trouble breathing while she slept. We contacted her pediatrician and she suggested we take her to children’s in Minneapolis. While there we learned sawyer was holding her breath for 10 seconds at a time and would take a breath and continue to do this for 30-40 minutes through an hour. She was sleeping 20 hours in a 24 hour period missing meals and being too tired to eat. She spent a week in the hospital being monitored and was diagnosed with apnea. She was sent home with apnea monitor after three sleep study test. We went home and within a week we were back at the er with a sleepy baby that just wouldn’t wake up to eat. While at the hospital the nurse was holding her and realized she wasn’t only holding her breath and having apenic spells but she was having seizures. She asked me if I noticed her doing that before and sadly I said yes she does it all the time. Never knowing that what we were experiencing was pediatric seizures. Immediately I cried feeling like a horrible mom I mean how do you not know your baby is having seizures. So again we were taken to children’s to be monitored and we spent another week in the hospital being monitored. This time we took a cpr class and started seizure meds, caffeine, and a vitamin d supplement. Again we went home and waited for home heath care to bring machines for a sleep study at home. While at home and while sawyer sleeps she drops her oxygen into the 80”s but is quick to bounce back. A week later during one of the hot summer days Sawyer had a seizure that stopped her breathing and turned her blue. An ambulance was called and sawyer was taken by ambulance to the hospital this time we were in ICU to undergo an EEG to see what type of seizure she was having. We were unsuccessful in figuring it out. Now we’re doing genetics testing for more answers. As of now we know she has 6 mutated cells and one cell that stood out amongst the rest which would require myself and her dad to be tested for more information. We’re now back waiting for more resulted with sawyer now being three months old and still struggling to wake up and eat or even breath some days. Her seizures have gained in strength but lowered in the amount she was was having them. We have increased seizure meds and started oxygen at home and now we wait day but day to see what’s next  with multiple appointments to neurologist, pulmonologist, apnea, and pediatrician appointments. I have had to take an extra two months off work to care for her and her medical needs, we have gone through two vehicles now leaving us to rely on others to get us back and forth to appointments and work, and recently received a letter stating medical would not pay for her recent ICU stay.  The medical bills are piling alone with being behind in rent, phone, and car insurance we have to have on a vehicle we pay for a friend to let us use her vehicle when we need to. Our ship is literally sinking at this point with no financial stability to keep us afloat. The only thing we are thankful for daily is that our beautiful girl has not had any life long affects were aware of yet, her 5 other siblings are so loving and understanding, and that we still have everyday to love her, cuddle her, and kiss her goodnight. We having a saying in our home and on our worst days when we need to be reminded of our strength we say we’re #Sawyerstrong because we learn everyday the true mean of strength through the eyes of our beautiful girl.