This week was one of our favorite weeks of the year. On Wednesday we had 3 families from Phoenix Children’s Hospital come to Penrose for breakfast, gifts, and a day of pampering! To explain why this was so special for these families, we are sharing each of their stories in hopes to inspire others to be thankful this holiday season.
Each family has a daughter that has been in the NICU since they were born, fighting every day for their life. These families have been by their child’s side every step of the way. They have been advocating for them, comforting them, and showering them with so much love throughout their journeys.
(for privacy we will not be disclosing names)
Our first family has an 8-month-old daughter, and this is what her mom had to say about her. “My baby was born at 37 weeks with a syndrome that is called Jeune Syndrome. Jeune Syndrome is a condition that effects mainly bone growth. In my daughters’ case, it affected her rib cage which restricts the growth and expansion of the lungs. Because she doesn’t have space for her lungs to grow, she has to have a tracheostomy and be connected to a ventilator to provide pressure and oxygen to her lungs.” Her daughter is set to have a rib expansion later this week, and they are hoping to take her home in February!
The second family found out at 30 weeks pregnant that their daughter had a genetic skin condition called “Harlequin Ichthyosis.” It is described as a condition where the skin grows 10 times faster than the average person. While she was in the womb, her skin built up and affected her bone growth as well as her facial features. When she was born her hands were fused shut, and her eyes held open. She has been progressing every day with her rigorous daily skin care routine which includes daily bleach and vinegar baths to prevent build up. She can now move her hands and feet, and the build up of skin from birth is nearly gone. She is now 1 month old, and her mom and dad are learning how to do her daily routine so they can hopefully bring her home in the next coming months!
Our last family has a baby girl who was born at 25 weeks with underdeveloped lungs and respiratory issues. For the first 5 months of her life, she was in the hospital “paralyzed” from drugs that were being given to her. Her whole body was swollen, and she had tubes that were feeding her. The tubes were what kept her alive. Doctors told her mom that she was not going to make it. One day her mother met a woman who told her about her daughters’ condition, and how the doctors were telling her she may need to consider taking her daughter off life support. This woman encouraged the mother to fight for her daughter and to seek other opinions before she made her decision, and that’s were Phoenix Children’s Hospital came in. The mother called PCH and explained what was going on with her daughter. The NEXT day PCH came and flew the mother and daughter out to PCH, where she started a new course of treatment. We are so happy to share that her status has completely changed! She can now move and is progressing every day. She is undergoing physical therapy, and once her trach is out she will be doing speech therapy. She just turned 1 years old, and mom and dad are so excited to take her home soon!
We want to say thank you to the moms who came and shared their stories, your bravery and strength is so inspiring, and we were honored to spend the day with you!
Lastly, we want to say thank you to Phoenix Children’s Hospital for all the hard work they do. Without them, these little girls might not be here.