It was determined that he has a genetic disorder called Trisomy 18. Unable to hold him and meet him for the first time yet, new Daddy and me made the painful post operation walk to the Neonatal Intensive Care Unit to see him through the window. The next several days filled with uncertainty, tests, news and research we finally got to hold him. Tubes and monitors and a bleak outlook for his future, we were just beside ourselves. To be able to take him home, we learned how to insert the feeding tube and to use the powered air machine. The reality that he is on hospice care and that if anything should go wrong, we had to agree to let him expire is undescribable. They explained to us that only 50% survive the first week, 5% see their first birthday and 1% live to the age of 10.
We get to know him more each day and love our time together knowing that we only get to hold him for a while and he could have a variety of medical issues. He is so small, tubes everywhere, not sleeping much and so much uncertainty as to what all of this means and what will happen. We canʼt even imagine why our beautiful baby has to be sentenced to such a short existence. Itʼs impossible to digest. There is so much hope, but the doctors say there is not.
We have had struggles and triumphs like getting his weight up to 5 pounds, finding a car seat to fit him because he was so small, finally home in his own room but no monitors for reassurance, up to 6 pounds, back to the hospital with bronchitis, back home crying all the way, up to 7 pounds, back to the hospital again with maybe the same bronchitis, finally in 0-3 diapers, rolling over on his own. They said that he wouldnʼt open his hands, but he does. They said that he wouldnʼt make it this far, but he has. He is going to be 4 months old and was able to go under anesthesia to have hernia surgery and a g-tube installed because he keeps pulling the feeding tube out. They said he wouldnʼt be able to handle it because of the hole in his heart, but he did. They said that he wonʼt live to have his first birthday, will he?
We soak up every minute we spend with him. If love could heal him, he would be all better. He is so precious. This is our first baby and he has stolen our hearts. If only faith and love were enough.
I had planned to go back to work at some point but that will not be possible with his special needs. Dad works very hard but the time he has taken off to be there through the emergency visits and tests plus the medical bills, we are falling behind. I choose to spend every day that I can with him, taking care of his needs and watching him defy the odds but without my income, itʼs going to be a long road. What would you do?
Any little bit helps and we are grateful.
- Kendall Knight
- Juli King
- Carolyn Fuhs
- Luke Wilson
- Derek Galloway
Organizer and beneficiary
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more