Bryleigh has encountered several major medical issues over her last 21 months of life.
She has Broncho Pulmanary Dysplasia (BPD), something she will always have. This will always cause her lungs to be weak and easily compromised. She currently takes multiple medications for this. She also was on a vent for over her entire first month of life becuase of the BPD.
During this critical time of life, she was not given the opportunity feed orally. She displayed signs of reflux very early on with the feeding tube. She eventually received surgery to help lessen the effects of this.
Prior to her leaving the NICU, she had surgery to place a MiniOne Ball Gastric Tube.
She was diagnosed with bilatral brain bleeds that have now resolved.
She had ROP, Retinopathy of Prematurity, which threatened to cause major eye issues. She has now overcome that too.
She has received OT, PT, Speech and Dietican Services since she came home from the hospital. We have seen a great deal of imporvements in many areas.
Our greatest concerns now are that she continues to avoid oral feedings. We have tried everything. We have had every test under the sun to determine if something is mechanically wrong. We know now that there is not. The only explanation is behavioral and possible low muscle tone. The fact that when she started taking some milk orally, early on, she would asperate with penatration into her lungs. So, we feel she is protecting her airway.
We have now been accepted to Baylor Our Children's House Day Therapy to provide intensive therapy, daily, for five weeks, four hours a day. It is our greatest desire that our sweet Bryleigh feed orally and that we get this tube out.
We start in a few days. The therapy will force me to take a great deal of time off of work. I will be missing 20 half days with payroll deductions. It is going to impact our family a great deal. Many of our family and friends have asked how they can help. I am not good at admitting that we need help, so this is my opportunity.
If you would like to share our story with your friends, please feel free. We want to raise awareness of prematurity among babies as well as asking for finacial support. Some may feel more comfortable donating to the March of Dimes in her name, or they can donate to us to help cover our expenses to and from the therapy, the loss of wages, and other medical expenses that will come with the program.
Thank you so much for your love and support. It has gotten us through so much. We truely feel blessed by the opportunities that have come our way and for being the parents of our two beauriful girls.
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