On October 27th we headed to Cook Children's hospital. We had been preparing for this day for weeks! Mentally, though, we'd been trying to avoid it for over 5yrs! There's so many terrifying, heart-wrenching memories for our family around children's hospitals!
On April 9, 2017 the most beautiful little miracle in existence came to us. She was tiny but so feisty from the start! Her full head of black hair and perfect round face had everyone falling in love at first sight 😍.
For 3 thrilling days our darling little angel hid a BIG secret inside her tiny body. Day 4 was rough! She didn't eat, she didn't cry, we could hardly get her to wake up! Late afternoon my Mom and sister (who had recently lost a baby of her own) took Stephanie and I to the pediatrician according to my midwife's advice. (Daddy was on a business run that day). From there we were rushed to the nearby ER where I was separated from my baby as she fought for her life! Around 12 hrs later, Burnell and I received the heart breaking diagnosis for our precious baby girl in a children's hospital 2 hours from home! She had hypo-plastic left heart syndrome. She hung on to life with a quivering thread. The doctors encouraged us to let them keep her comfortable and let her pass; she had a less than 5% chance at surviving the surgery that would give her a precarious chance at a life full of great risks. We decided as long as she was fighting, we would fight with her! She made it through the first surgery and 6 months later after many procedures, a heart arrest and constant hospital life, she had her second open-heart surgery which stabilized her enough for us to finally head home November 2017!
September 5, 2019 her baby brother joined our family. We were so proud of our big, strapping boy! However, 7 days later we once again found ourselves in the children's hospital. This time the diagnosis was a coarctation of Jefty's aorta. Twenty one days, 1 heart surgery and many, many floods of tears later we proudly took our little family back home!
Fast forward to October 2023
The doctors left us know that Stephanie (now 6) was ready for the third heart surgery recommended for HLHS babies. Jefty also needed a smaller repair done now that he is 4 years old. We didn't intend to have them both hospitalized at the same time, but life has different plans sometimes! Stephanie had her surgery done on the 30th of October. Her lungs had a bit of a struggle in the recuperating process, but much to our delight and surprise she got discharged November 12, the night before Jefty's scheduled surgery! However, the following day, after Jefty was back from the operating room, she was re-admitted due to some fluid built up around her lungs. Jefty had a quick recovery and was discharged 4 days later. Stephanie stayed a few more days until discharge on the 22nd. We are so grateful to have these surgeries behind us! There will be follow up appointments slowly tapering off over the next several months but for now we are all safe at home and thriving post-surgery! Your encouraging words, gift boxes and support were greatly appreciated during this time!
Being 2 hours from home with both kids in the hospital didn't allow for Burnell or I to work more than an occasional short job. Also, someone broke into our pickup stealing around $1,000 worth of tools for Burnell's handyman jobs on top of destroying the keyports on both front doors and the steering column by trying to start it without the key! The pickup has been repaired but is still at the repair shop. Sadly, our insurance left us know they will not cover any of it because it was a burglary and not a traffic accident.