He is a Fighter and I Refuse to Let This Hinder Him

Sunday, January 20, 2019

Photography By: Felecia Causey

On July 24th,  I never knew how much my life was about to change, I became a mom and nurse all in the same day!  

A few minutes after Genoa was born, he was airlifted to a children's hospital. We did get a chance to hold him for a few minutes, before he was taken off by the helicopter. Motherhood was starting off rough for me . They didn't allow anyone to fly with him, and I had to stay behind and begin my recovery process. I felt guilty and felt like I sucked as a mother. I wanted to be with my son, hold him, love on him, see who he look like, and experience skin to skin with him. I couldn't sleep at all that night. I remember praying over and over "Father God please protect and cover my son". 

 Genoa was born with a bilateral cleft lip and palate.  Most people think clefts only affect kids in a third world country, but it's so common in the U.S.  Clefts can be genetic and in some cases it just happens, no family history of it all. He is only five months and has had two surgeries. He had one operation two days after he was born. He received a g-tube (feeding tube), to assist with his eating. I was heartbroken because my plan of breastfeeding was taken away, until they told me I would have to pump, because he wouldn't be able to latch.  Babies with cleft lip have a difficult time latching and eating.  He also had an operation done on his intestines, because some cleft babies often have other issues as well. 

was also born with a rare condition called imperforate anus, which means he was born without a butthole. The surgeons decided to bring Genoa intestines through his side, which would help him have a bowel movement. He will have to wear an ostomy bag, until his next operation.

 I spent a week at the hospital with him. He was a NICU baby, and before we could bring him home, his father and I had to go through tons of training on how to care for him. I saw at least eight doctors back to back, and I had become restless, emotional, and only wanted to spend time with my son.  It became so overwhelming with everything going on, that my postpartum depression was twice as bad. I cried almost every hour. 

Cleft babies often have other defects, one doctor told me he would be partially deaf, another one said he saw a cyst on his spine, and then another one informed me that there would be complications with his kidneys. I remember standing over his bed pleading and begging to God to  not take my son, but instead use him to tell of His miracles and healing hands.  I told Him I was gonna fight for my son, whatever I had to do, I was willing.  If that meant fasting, I was prepared to fast and get my life in order.  I asked Him to not punish my son for my sins, but He reminded me that my sins were already forgiven. He reminded me that He had the final say so. I began to speak Isaiah 53:5 over my son everyday,  "BY JESUS STRIPES GENOA IS HEALED FROM THE TOP OF HIS HEAD TO THE SOLE OF HIS FEET!!"

Once I got him home, I was determine, to not use the feeding tube, but to help him take everything by mouth. A week later we were doing just that.  We use the Dr. Brown's bottles with a level 2 nipple which allows his milk to flow to his speed of intake. A change within a nipples sometimes will make a world of a difference with cleft feedings. We were prepared to go back to our other home in Birmingham for his next procedure.   The nurses there called him super baby, because he was doing things most cleft babies normally couldn't.  He gained weight ,without any problems, and he took his bottles by mouth. The cyst was completely gone, his kidney was functioning just fine, and his brain activity was great. 

November 16, he was up for another surgery, and this time it was for his lip repair.  The five hour operation felt like twenty-four hours. They had informed us that most babies have a difficult time eating after that type of procedure. I had faith that my son wouldn't. It was two hours later he was eating like a champ and smiling. My baby is a fighter and no matter what he has encountered he keeps a smile on his face.

 I refuse to let this hinder my son and we're doing everything, they said he couldn't do. We're now in the process of getting him started in occupational therapy, which will train us on feeding him solids. Genoa have more operations ahead of him, but I do believe God have already worked everything out in his favor! He's a "baby Ali", and fighting is in his DNA. He has been through so much and I know this is the beginning of his amazing testimony. I can't wait to see everything else he overcomes and all the barriers, he will break. I would like for Genoa to know that he should never let anyone tell him what he can't do, because he has done more than enough! 

 To the parents with babies or kids with cleft lips and any disability: the most important things to do is have patience, love on your babies, ask for help, do research, and stay faithful. 

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