We are Kalen and Mercedes Ratterree. We are the parents of 4 children. Our 4 yr old daughter Raylee Kay, 3 yr old son Paxton Lee, 2 yr old son Matthias Ray and our youngest and newest addition being born as of May 27th 2020, our precious Addylyne Grace Ratterree who this page is for. She was born with a neural tube defect. We have made countless trips back and forth to the Drs since I was half way in my pregnancy with her. She has been diagnosed with a large occipital encephalocele. When I was pregnant with Addylyne, at our anatomy scan, we were told she was missing the back part of her skull and had what they thought was an encephalocele but they would have to send us to a more advanced facility to check on everything so they referred us to Maternal Fetal Medicine in Springfield, MO. We were completely devastated and didn't know what to expect exactly. We were basically told there was a very slim chance that she would even survive the pregnancy but if she did, she probably wouldn't survive for long after that and if she did survive the pregnancy, she most likely wouldn't have any kind of way to interact, may be blind, she probably wouldn't move her hands or legs or anything, she might not be able to breath or eat or basically do anything a normal baby would do. We were being told she would either die before birth or shortly after or be a "vegetable" and have no quality of life. They gave us a 10% chance of survival and even suggested an abortion in Illinois since we were past the deadline for Missouris law on abortions. Of course that wasn't even an option for us and we didn't and would not even consider that as an option. We were then referred to Maternal Fetal Medicine in St. Louis, MO because we wanted a more informed opinion and they did a Fetal MRI while I was pregnant with her and they did monthly ultrasounds. They basically told us the same exact thing though and that made it even harder on us. By then, they had both gave us the option of terminating the pregnancy. We continued the pregnancy hoping, praying, and believing for some kind of miracle and that our daughter would live. We opted to do cesarean to give her the best chance at life and not doing any damage to her or myself by delivering "naturally". They planned to do a classical incision from right underneath my breast all the way down to open me up more since we wanted to give her the best chance possible and she was breech every ultrasound so that automatically called for cesarean in general but the day I went in to have her, they did one last ultrasound and she turned head down so they ended up doing the bikini cut cesarean and she came out kicking and crying which they said she wouldn't do so of course, we were overjoyed with the fact that our baby girl was and is alive and doing things they said she wouldn't do. She was due June 15th but was born via cesarean May 27th at 37 weeks gestation. They did end up having to put a ventilator on her shortly after going up to the NICU due to her having short periods of what they called "forgetting" to take a breath every so often. They actually told us she'd probably need it her whole life and talked about possibly doing a tracheotomy when it came time to take her home. She has since then defied the odds they gave her in that situation as well. They weaned her off and put her on oxygen and she has since then been weaned off the oxygen as well. They also did an EEG on her and said she has a little bit of seizure activity that could be caused from the encephalocele so they put her on a very small dose of seizure medication and will monitor her for that. So far, she's done great with it and we're hoping she'll one day be weaned off that as well. She's on an NG tube right now as well which is basically how she's getting all her nutrition. We're hoping to try a bottle with her very soon and see how she does. If she does good with the bottle, we will work with her on that more and then we will talk about discharging to go home possibly. She will most likely need a special carseat to get home in and monitors for at home. We are hoping her insurance will pay for that stuff, and if not, we will most likely get an owlet sock and a car seat that the hospital recommends. The first neurosurgeon was not giving us many options on the encephalocele. They basically kept telling us they can't do any kind of surgery to fix it and we felt like they were basically telling us to take our baby home and watch her die. They kept talking about taking her home like that and we just couldn't understand why they were acting like they couldn't fix it when we've read stories that it's been done. They told us if they did any kind of surgery, they wouldn't be able to fix it but maybe make it a little smaller by getting rid of fluid around it or something but that they can't take off anything or put anything back inside the skull, even with time due to the risks of surgery and their possibly being veins or arteries in the encephalocele and her bleeding to death during it. We thought, well we can't care for her like that at home though, especially with a 2, 3, and 4 year old at home and that's not any kind of life living in a bed with something like that weighing her down and holding her back, not to mention the risks of something happening with it like it continuing to fill with fluid or possibly rupturing. Since then, we have became more open to the possibilities of bringing her home without surgery first and having some help in the home with her whether it's family or actual nurses that come into the home to help with things like that. But we basically begged them to do something and she said she'd talk to one of her colleagues and a few days later he came to talk to us and he had a little bit different of an opinion! One of the things we were praying for so that's another miracle in itself! He said that she would possibly be able to have surgery if she could grow a little more and get bigger that way she would be able to tolerate a surgery better. Until then, we just watch her, monitor her, and see how she does and go from there. We were just begging for somebody to just give her a chance at life, a chance at normal or normal as normal can be and somebody to say it was possible and they'd be willing to do something about her situation. We can't give up hope and we won't. We are willing to do whatever it takes to save our baby and give her the best life she can have. She is currently still in the NICU and we have been driving back and forth to be able to be with her and our other 3 children. It has made it very difficult with the hospital not letting any visitors other than us and so we hust drive back and forth every couple days. The money will go towards anything Medical that her insurance will not cover whether it's surgery, medical supplies, appointments or further testing. It will go towards our gas and food and possibly any hotel stays for trips back and forth to St. Louis for this journey ahead of us especially since the Ronald McDonald Houses are not open. Anything that she needs basically or anything that we need to get through this journey is what the money will be used for. And lastly, and most importantly, we are asking for prayers! We will take all the prayers we can get! The more, the merrier. We pray and believe for total healing and we know God is watching over our baby girl. She is determined and she is a little fighter. She has gone through so much in her little life already but she's continuing to amaze us every day as well as the Drs and Nurses. She's most definitely a little miracle and a blessing. Thank you so much for any donations and prayers! It truly means a lot to us and we could never thank you enough. Just know that we appreciate it more than you will ever know! Thank you❤