Ezekiel was born on July 20th, 2019 at 11:47 am. All was well with birth and he entered the world amazingly and full of personality. The next day he was taken for some ultrasounds of his kidneys and bladder (before Ezekiel was born we were high risk due to enlarged bladder found at our anatomy scan with him which then resulted into enlarged kidneys later in the pregnancy.) The enlargement was never really a huge concern during pregnancy due to the fact amniotic fluid and all development looked great otherwise. We were told if anything needed to be done it would be down the road. However on July 21st Ezekiels ultrasound showed blockage in his ureters causing urine to reflux into his kidneys and not able to release. We got transferred to Levine Children’s Hospital that afternoon where we were told Ezekiel would need surgery to remove the blockage and hopefully be home by the following Monday. Later that week the NICU did a renal panel on him and found his creatinine and BUN were high for his age/size resulting in Ezekiel having renal failure. He proceeded into surgery at 6 days old removing blockage and getting a PD catheter for dialysis. Ezekiel started Peritoneal dialysis ten days after getting the catheter in which then resulted into finding out Ezekiel had scar tissue around the PD catheter. He went in for surgery again to remove scar tissue and about two days later we found out he had peritonitis and more scar tissue build up. We were told no matter how many times they removed the scar tissue it would continue to come back so they decided Hemodialysis was the best option for Ezekiel. Going back into surgery for the third time in a month he got the PD catheter removed and a vas cath put infor hemodialysis. When Ezekiel turned a month old he started his first Hemodialysis treatment. All went well for the first 15 minutes until he started doing a cry that was unlike him. Luke and I went to comfort him and found him starting to turn blue and passing out in our arms. Ezekiel ended up coding. Luke and I were escorted out of the room and into the family waiting room where we waited for about 30 to maybe 40 minutes in shock trying to figure out what had happened. The doctors came and told us Ezekiel was stable and had to be intubatedand they weren’t sure what happened. They told us our child was just sick and it just happens. We knew this wasn’t the case when he has always had perfect health minus the kidneys and blockage. Later we had found out Ezekiel had to be reseaotated. Ezekiel had retained 2 1/2 pounds of fluid in his body after he coded and a few days after the code the oxygen tube ended up being in one lung to far down and caused the other lung to collapse. He had to be sedated for the new machine to work because no movement could happen or the machine would stop working and clot off he was on this machine to pull off fluid and clean his kidneys in the mean time till a plan was made. Ezekiel was sedated for 10 days, that was 10 days of not hearing a peep, not seeing his big blue eyes, and not being allowed to touch my child until we got transferred to Children’s of Alabama in Birmingham AL. Ezekiel was immediately taken off of all sedation and by the next day he was off of oxygen completely. After two days of being at COA Ezekiel started using a machine called Aquadex (absolutely amazing) it did continuous dialysis on Ezekiel essentially. After about 2 months Ezekiel started a trail off the pump. He did great during the day but by the next morning bloodwork showed a failed attempt off the machine. This didn’t set us back but didn’t out us forward. We still were thankful for the day off the pump and a trail. Later that day the doctor came back and said we would try again after 72 hours back on the pump. On Sunday October 6th Ezekiel came off the pump around 2:30 pm and has been off of dialysis since. We got discharged 11 days of him being off the pump and have him home doing monitoring and follow up appointments with bloodwork at Levine Children’s Hospital once a week. Ezekiel has done great! People were amazed and asked how when a few weeks ago no one saw this coming.
So leading as to why did we share all this.
Well when we pray we see miracles. When we have faith we see miracles. When we praise even in the middle of a strong storm we see miracles.
I’m not saying keeping faith was easy. I’m not saying we were amazing Christians. And I’m not saying praising was easy. We were angry, we questioned God a lot but it didn’t stop us from praying over our son every day. We had to let go and understand that we were not in control. We couldn’t do anything but be there for our son and pray and worship because even through we were going through a lot the presence of God was known each day in every situation.
A few days before trials we came across a song called Breakthrough by Red Rocks Worship while listening to our worship playlist. We had never even heard of this worship group before but this song became our anthem almost. We would play it for Ezekiel almost everyday, we would sing it, I made a painting for Ezekiel with some of the lyrics to put above his bed. To us it felt like a word from God. The song talked about breakthrough and victory and we held close to that. God made his presence known. He made his healing known. He made his faithfulness and love known.
I believe any mountain can be moved through the love of God and we look at a miracle every single day and thank the one who made it all possible and blessed us with our miracle. I hope that others are able to see God’s hand because there is no explanation in this situation other than God! He was with us every step of the way every day. When Luke and I think about all this and play it over and over in our heads we can remember times that you knew the presence of the Lord was with us and the protection HE had over Ezekiel. This victory belongs to him!!
From wife to mom life 