Monday, March 9, 2015

Happy Birthday, Brayleigh (A Note from Dad)

Birth. Nailed It!
This past weekend was extra special because our daughter Brayleigh celebrated five months of life! 
Five months ago, on October 8, 2014, our lives were forever changed by the early arrival of Brayleigh Christine Richard. Weighing a bit less than four pounds, with underdeveloped lungs, a hole in her heart and most challenging of all a rare chromosomal disorder known as Edward’s syndrome, Brayleigh’s arrival and early days were far from routine.  We heard all of the things that no parent ever wants to hear.  We were told of devastatingly high mortality rates, extreme birth defects and severe developmental delays.  Emotionally, it was the most challenging experience of our lives.  Most difficult of all were the constant reminders, from otherwise well-meaning caregivers, that Brayleigh might not make it out of the NICU.  We were told that her condition was “incompatible with life.”  I am happy to report that God had a different plan!
Only God knew that five months later, our precious daughter would more than survive.  She would thrive!  Brayleigh now weighs ten pounds and has a double chin and rolls of fat on her thighs to prove it.  She is on a special formula that is easy for her to digest and she is responding well to it.  She is able to swallow small quantities and we are optimistic that with therapy she may be able to come off of her feeding tube.  While still on supplemental oxygen, Brayleigh can maintain her oxygen level for long periods of time without the extra oxygen.  Doctors are hopeful that the small hole in her heart will close on its own.  If necessary, as she grows and continues to gain strength, the hole may be closed surgically.
These months have not been without their challenges.  Since coming home, Brayleigh has been re-admitted to the hospital twice; once for over a month. We have been faced with difficult decisions regarding her care.  We strive to balance the aggressiveness of the care against the likelihood of a positive outcome all while keeping Brayleigh’s comfort and quality of life at the forefront.  We decided early on that we will give our child a chance and not allow anyone to deny her care simply because of her condition.  We strive to stay faithful and know that God’s will is what will prevail.  We consider each day with Brayleigh to be a blessing.
Despite all that she has been through, Brayleigh is such a happy baby. She smiles and coos often especially at the sight of a familiar face or sound of a familiar voice.  She is a constant reminder of God’s faithfulness and the power of prayer.  Her life is an inspiration.  So many people are closer to God and have a stronger prayer life by virtue of joining us in our prayers for Brayleigh.  Thanks so much to each and every one of you for kind words, deeds and actions during this new chapter of our lives.