Baby Oakleys Helping Hands
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Oakleys parents found out they were pregnant in early May of 2015. During the first trimester, the Drs noticed that something wasn't right and that Oakley was not growing properly. The Drs could not figure out what exactly was wrong. His parents were told they had to wait until he was born to get more answers. On the morning of November 18th, 2015 Oakley was no longer moving so his parents went to see a specialist. They did a bpp (which scores babies on how they are doing in the womb) and they had to sit for 30 min while the ultrasound tech kept the ultrasound probe on Oakley with him not moving. Talk about heartbreaking and stressful! Then they did a non stress test and Oakley did not move again for this test. The Dr. came in and said that Oakley had to be born immediately! They took his parents down to labor and delivery where Oakley was born minutes later on November 18th, 2015 at 32 wks 6days gestation. Oakley needed to be intubated a few hours after he was born. Below is his story.
Hi there,
My name is Oakley but my big brother calls me Oakie. I love to smile at everyone I meet and I'm very easy going. I was born premature by emergency C section in Louisville, Kentucky and they tell me (with my hearing aids on of course) that's where all the beautiful horses race. With my premature birth came a lot of complications that left my family and I with tons of unanswered questions.
I spent my first two months of life in the Neonatal Intensive Care Unit at Norton Women's and Children's Hospital in Louisville, KY. I had multiple problems but most important was the heart surgery I needed to repair my heart. After that surgery we thought I was getting better and then doctors told us I couldn't eat by mouth any more because it goes into my lungs. Before we figured that out I had already had aspiration pneumonia. Here came another surgery, where they placed a G-tube in my belly and a Nissen on my esophagus so I could eat safely. Days later we discovered that my brain was not properly developed and my ventricles are different sizes. I also have Chronic Lung Disease. Finally after two hard months in the NICU my parents took me home on oxygen and monitors.
Since we have been home we have learned numerous things in seeing my 18 specialists. I have also had several in patient stays back in the hospital. I am blind, hearing loss bilaterally, subglottis stenosis, trachea malacia, sub mucus cleft pallet, severe obstructive sleep apnea (which I stop breathing in my sleep and scare my parents to death), bilateral clubbed feet, bowed legs, my white brain matter didn't develop quite right so it affects me cognitively, I have failure to thrive (which is why I'm a 14lb 16 month old), a heart murmur called a PFO, epilepsy, and lastly I was born with no hip joints which means I can never walk and will be confined to a wheel chair. I also have a very rare genetic disorder called Med 12 associated syndrome. I'm one of two in the whole wide WORLD with this genetic disorder. This genetic disorder will cause me to have numerous medical problems through my life.
I have also recently had a very scary diagnosis. My doctors found a 2cm aneurysm in my brain. There has never been a reported case of someone under the age of three with a aneurysm in Cincinnati where I go to the doctor. The doctors said that there are only very few reported cases of someone under three having a aneurysm in their brain. This will be a very dangerous surgery and my parents are very scared. I will have to have two brain surgeries to fix this. My doctors are working very hard to come up with a plan of when I will start having this done.
When I had the angiogram to give the doctor's a map of how they can repair my aneurysm I had a couple of complications. First, it was only supposed to take two hours, it ended up taking ten hours. I had a subdural bleed and a blood clot in my femerol artery in my left leg. Because of this I had to stay in the PICU for a whole week.
With all this being said I am a super busy guy. I have to take medications around the clock. I have numerous doctor appointments monthly. I also have had to have countless tests and procedures and will continue to. I also am getting ready to have a test done to see how bad I am aspirating on my own saliva. The doctors said that I may have to have a tracheotomy to protect my airway and help me not aspirate
My parents are going to have a lot of expenses with my upcoming hospital stays. My brain surgeries will require me to be in the hospital for about two weeks with each one. My Mom, who is an EMT with Louisville Metro EMS, has FMLA but she is out of sick time. So she will be not getting any pay during this time. Can you please help my parents with expenses they have with missing my Mom's pay, travel expenses, and food? I would really appreciate it. Also, please pray and think about me. This is going to be a very long and tough road to recovery. Thank you for reading my story.
Love,
Oakley
Surgeries:
December 2015: cardiac surgery to repair his pda
January 2016: Gtube and nissen
March 2016: switched Gtube to gj temporarily to get aspirating under control
April 2016: re do of his nissen and switch his gj back to a Gtube
July 2016: port placement
September 2016: Tube placement in ears
April 2017: Brain surgery vessel bypass for aneurysm.
https://m.facebook.com/Babyoakley/?ref=bookmarks

Hi there,
My name is Oakley but my big brother calls me Oakie. I love to smile at everyone I meet and I'm very easy going. I was born premature by emergency C section in Louisville, Kentucky and they tell me (with my hearing aids on of course) that's where all the beautiful horses race. With my premature birth came a lot of complications that left my family and I with tons of unanswered questions.
I spent my first two months of life in the Neonatal Intensive Care Unit at Norton Women's and Children's Hospital in Louisville, KY. I had multiple problems but most important was the heart surgery I needed to repair my heart. After that surgery we thought I was getting better and then doctors told us I couldn't eat by mouth any more because it goes into my lungs. Before we figured that out I had already had aspiration pneumonia. Here came another surgery, where they placed a G-tube in my belly and a Nissen on my esophagus so I could eat safely. Days later we discovered that my brain was not properly developed and my ventricles are different sizes. I also have Chronic Lung Disease. Finally after two hard months in the NICU my parents took me home on oxygen and monitors.
Since we have been home we have learned numerous things in seeing my 18 specialists. I have also had several in patient stays back in the hospital. I am blind, hearing loss bilaterally, subglottis stenosis, trachea malacia, sub mucus cleft pallet, severe obstructive sleep apnea (which I stop breathing in my sleep and scare my parents to death), bilateral clubbed feet, bowed legs, my white brain matter didn't develop quite right so it affects me cognitively, I have failure to thrive (which is why I'm a 14lb 16 month old), a heart murmur called a PFO, epilepsy, and lastly I was born with no hip joints which means I can never walk and will be confined to a wheel chair. I also have a very rare genetic disorder called Med 12 associated syndrome. I'm one of two in the whole wide WORLD with this genetic disorder. This genetic disorder will cause me to have numerous medical problems through my life.
I have also recently had a very scary diagnosis. My doctors found a 2cm aneurysm in my brain. There has never been a reported case of someone under the age of three with a aneurysm in Cincinnati where I go to the doctor. The doctors said that there are only very few reported cases of someone under three having a aneurysm in their brain. This will be a very dangerous surgery and my parents are very scared. I will have to have two brain surgeries to fix this. My doctors are working very hard to come up with a plan of when I will start having this done.
When I had the angiogram to give the doctor's a map of how they can repair my aneurysm I had a couple of complications. First, it was only supposed to take two hours, it ended up taking ten hours. I had a subdural bleed and a blood clot in my femerol artery in my left leg. Because of this I had to stay in the PICU for a whole week.
With all this being said I am a super busy guy. I have to take medications around the clock. I have numerous doctor appointments monthly. I also have had to have countless tests and procedures and will continue to. I also am getting ready to have a test done to see how bad I am aspirating on my own saliva. The doctors said that I may have to have a tracheotomy to protect my airway and help me not aspirate
My parents are going to have a lot of expenses with my upcoming hospital stays. My brain surgeries will require me to be in the hospital for about two weeks with each one. My Mom, who is an EMT with Louisville Metro EMS, has FMLA but she is out of sick time. So she will be not getting any pay during this time. Can you please help my parents with expenses they have with missing my Mom's pay, travel expenses, and food? I would really appreciate it. Also, please pray and think about me. This is going to be a very long and tough road to recovery. Thank you for reading my story.
Love,
Oakley
Surgeries:
December 2015: cardiac surgery to repair his pda
January 2016: Gtube and nissen
March 2016: switched Gtube to gj temporarily to get aspirating under control
April 2016: re do of his nissen and switch his gj back to a Gtube
July 2016: port placement
September 2016: Tube placement in ears
April 2017: Brain surgery vessel bypass for aneurysm.
https://m.facebook.com/Babyoakley/?ref=bookmarks
Organizer and beneficiary
Amy Seelye
Organizer
Louisville, KY
Merrick Schweitzer
Beneficiary
