We wanted to share our story with you and tell you about Hope's journey. It was half way through my pregnancy that we started on a journey neither of us had imagined. Around this time Covid was also at it's peak and I was alone in my ultrasounds, and it was alone that I decided to go to a follow up with a specialist my doctor had referred me for "better imaging" it was June 30th. I will never forget that day, I knew it was bad news when the ultrasound tech told me she would be back and came back with the doctor. I then spent what seemed hours in the waiting room before being called back into a little office. The doctor said the ultrasound had shown something abnormal and my heart sank, that was the day I found out our baby we had already named Hope had Congenital Diagrammatic Hernia. About 1 in 2500 babies are diagnosed with this condition. When they are growing, the diaphragm that protects their heart and lungs fails to form, causing a hernia, and because of that organs from below start moving into that cavity, interfering with the growth of lungs and causing possible heart issues as the heart is pushed. For Hope this meant a right sided hernia, even more rare than others. The doctor gave me a print out of her condition, and said in 2-3 weeks we would do more testing and determine what would be the best route, but there was a 40-60% that she would not make it, as it was a severe diagnosis for most babies.
The tests that were supposed to take place never did as they kept losing my referrals, and that is when I found a support group called Tiny hero. All the parents talked about this amazing doctor in Florida, and after doing my research I felt Hope deserved the best odds. I made calls, within a week I had appointments made, then we flew out to Florida where the doctor said Hope had a 95% survival rate. We went home after 3 days and in the few weeks we had left before we were asked to relocate, we gave up our condo, packed our lives into a storage container and brought 2 suitcases and 2 carry-ons that has become our lives.
On October 7th Hope was born weighing 7lbs and 7ozs. She had to be immediately intubated and hooked up to a ventilator to breathe for her. Over the next days she was stabilized for her repair surgery that took place on October 12th. Then on October 20th she gave me the best gift for my birthday, she was extubated, I heard her cry for the first time and I got to hold her. Slowly they worked her off CPAP, pressurized oxygen to give her the strength to breathe on her own.
Today Hope is learning how to eat, each day has it's own struggle, she breathes faster than most babies do, and eating exhausts her which is the reason she still has a PICC line in to help give her the nutrients she needs but each day she makes more and more progress. The key is to take full feeds to where the remaining lines can be removed so she can come home where the world is waiting to meet her.
These months have been exhausting, relocating from Arizona to Florida and being so far from our family, this campaign is to help us get home and help with Hope's medical bills. We thank you for even taking the time to read our story, if you can help us that would be amazing but if you can't please keep us in your prayers and help us share our page.
- Daniel Bejar
- Tracey Engel
- Jennifer Garduno
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