Mommy’s second time holding Avery. Day 2 after surgery.
To all who have kept baby Avery in your prayers and to those whose hearts have been heavily burdened,
As most of you know, Avery was born Last Friday the 15th at 9:30pm. I can’t believe it’s almost been a WHOLE week! Despite being born with hydrocephalus, he came out with strong lungs and a healthy heart. I have been so overjoyed and to anyone who asks about his status (and even those who don’t) I go on and on for at least 20 minutes telling them of the good things the Lord has done for Avery. I previously posted a little bit about Avery’s testimony and how he has proved the doctors in Orlando wrong as far as them saying he wouldn’t live outside of the womb.
Moving forward, Avery has been cranky since his surgery. Every time my sister shows up to the hospital he is crying. She has been singing to him and that seems to ease the pain but when she leaves he starts right up again. As if he knows mommy isn’t around to comfort him and the only other hands that touch him prick him with needles and move him around into uncomfortable positions that he doesn’t like. Today Jenn thought about the fact that she hasn’t shown him joy but rather just tries to comfort him when ever she’s around. So today she was smiling and talking to him and holding his hand for at least 45 minutes. In these 45 minutes my sister began to feel hope as her son gazed into her eyes the whole time she spoke kindly to him. She has only held him twice since he has been born and with a toddler she has been limited to seeing him 1-2 times a day for about 2 hours at a time. So keep her in your prayers and continue to ask the Lord for strength and comfort for her mind, soul, and body.
Jenn received a call today from Avery’s neurologist and the geneticist shortly after she had left the hospital. They began to tell her the news that Avery’s brain stem is missing some parts and that his cerebellum is severely underdeveloped. The told her it is obvious that its enough to have his heart beat and his lungs strong but other than that they aren’t sure he will do much else. They also found a Dandy-Walker cyst on the back of his brain. Follow the link to find out more about Dandy-Walker syndrome. The only update I have on his brain is that the back isn’t looking so good. We will find out more about the brain after the MRI which has been rescheduled for next week. This way his incision has more time to heal. Pray that in the next few days leading up to the MRI that the Lord will do creative miracles in Avery’s head and that what ever parts are missing would suddenly appear!
As far as feeding goes, Jennifer is doing great at pumping but Avery has not been able to hold it down. Right now they have a tube through his mouth and into his belly but he isn’t digesting the milk. He spits it back up each time after about an hour or so. His spit up also has a green substance in it which isn’t good either. Not sure what it means but the doctors haven’t made that clear either. He still has no sucking reflex and the specialist says it doesn’t look like he will develop one. They have plans on doing some exercises with him to try to encourage suckling. They have him on IV’s so he is getting his electrolytes and vitamins (they have had a hard time keeping it in and have pricked him in the head twice and even had it hooked up to his forehead for a bit) but if he isn’t able to hold down the milk they will have to insert a feeding tube into his intestines. They have plans on working with him until it is absolutely necessary to do so. Please pray that the lord would heal Avery’s nerve system and that his mouth would begin to do what it was made to do.
The doctors began to give their speech on how they don’t know how much longer Avery will live and if he will ever walk or talk and that surely he will have neurological issues and epilepsy. But we know regardless of what the doctors say, we will believe that Jesus desires to make Avery whole and he is the author of life. So we believe that he will finish healing Avery!
Avery 2 days old. The day before his surgery. I was telling him how strong he is =)
Avery's Story 
While reading this post I took a moment to pray for baby Avery, his mommy and your whole family. The Lord brought me to tears and I could feel his presents. Almost as if it was amplified by so many people coming into agreement for this precious baby! God is good and in control! I will continue to keep his development in my prayers!!!