God's little gift...
Presley entered the world on 6-15-2017. She immediately was showing signs of respiratory distress, and needed help breathing. Within minutes, a group of nurses and doctors whisked her away to the Neonatal Intensive Care Unit.
We were told that she possibly had swallowed amniotic fluid, or had some sort of liquid in her lungs, and they thought we may just be in the NICU for a few days. After a couple days went by doctors began to feel stumped, Presley was not getting any better and was still not able to breathe on her own. Around 1 week old she started having an even harder time breathing and had to be placed on a high frequency ventilator, with a breathing tube. Doctors were at a loss for what was going on, they had never seen this before.
Our team of doctors reached out to a Pulmonologist from Denver Children's Hospital, and she looked through all Presley's X-rays and records. The pulmonologist told us she was confident Presley had a very rare genetic Lung condition called Surfactant Protein C deficiency. Something none of the doctors in our city had ever seen or treated before. We were told that there were only approximately 50-60 kids worldwide with this condition, and all vary greatly in how they are affected. We had to make the tough decision of starting intense treatments without having an official diagnosis, since genetic testing would take at least a week to get results. As soon as we started treatments, Presley started to improve! Her oxygen needs were decreasing and she was starting to need less ventilator support.
By 1 month old Presley was doing great! She was weaned from the breathing tube to a CPAP machine. She continued to do well for the next couple months! We were able to get to know her personality, see her smile, and do all the normal things babies would do at her age. We started to talk about our steps to get her home. The next step would be a more stable airway, in the form of a tracheostomy. We decided to move forward with the surgery with hopes that her lungs would do even better with the trach and she would be able to come home. Just a couple days after her surgery, Presley had one of the hardest night of her life. Seemed her lungs were having a harder and harder time.
We transferred to Denver Children's hospital (about an hour and half away from home) to have the Pulmonologist who helped diagnose her condition, and other specialists help get her back on track, and get us closer to going home. She ended up developing Pulmonary Hypertension. And her right lung had collapsed slightly, so we lost a lot of the progress she had made. We were seriously back at ground zero.
After 5 weeks in Denver working with about 20 doctors, starting new treatments, and trying everything we possibly could, Presley's condition worsened and unfortunately was too much for her lungs to handle. She passed away on October 31st 2017. The last 4 days of Presley's life were filled with struggle, they were days you would never want to see a baby go through. Presley gave it her absolute all, but ultimately god had bigger plans for her brief time on earth. Presley had fulfilled her purpose.
In just 4 1/2 months of life Presley has taught her dad and I more than we could have ever expected. She showed us to have immense gratitude for our health and not to judge the special needs of others. How perfection is a perception. And how imperfect IS perfect.
I can't deny that our hearts are broken. But we feel such a sense of peace that she has peace and can breathe now. She was so strong. So precious. So beautiful. And so very loved. Presley touched the hearts of hundreds of people who followed her journey, and all her family. All we can hope for is that, she in some way has impacted people to become better.
A sign to have faith...
....A few days after Presley was born, we were hit with a sign from above to have faith. A big white charter van pulled out in front of my husband and I, while at an intersection. It stopped right in front of us with the scripture "Do not fear, for I am with you" Isaiah 41:10, painted along the entire side. We looked at each other and knew right away that HE would always be with Presley, and we didn't need to fear. We printed the sign and placed it on her bed, where it stayed her entire life. We found comfort knowing that she was never alone.
As soon as Presley passed away, I had a defining moment, and realized the scripture we thought was for us this whole time, was actually Presley's scripture to us. We cannot fear, for she is with us. We are so thankful to have her looking after us forever.
A true little angel, a Raye from heaven.