Our transfer to Cincinnati Hospital

Most everybody is familiar with our story but it's a tough one to tell. After 72 days at East Tennessee Children's Hospital, I will try to tell it the best I can without confusion (and as few tears as possible). A lot of it is a blur and I just walked through the motions in a fog. Karrisa Erin was born on January 19th, 2016 by C-Section. She weighed in at 6lbs 3oz and was 18in long. She was just as beautiful as my first two children. She didn't cry when she was born. When she was born, she wasn't breathing. The doctors at Tennova immediately put her on oxygen and incubated her. She spent the next 4 days in NICU with tests being run on everything. She was diagnosed on day 2 with Eventration of Diaphragm. Her diaphragm was enlarged and was pushing her lung up into her chest and caused it to be underdeveloped. I was later told it is a lung disease called Pulmonary Interstitial Glycogenosis (or PIG for short). This was the reason she wasn't breathing at birth and she also had rapid breathing. They told me from the beginning to get used to her breathing that way if anything was wrong we would know it. Surgery was not an option. There is no Surgeon in the country that would touch her as young and small as she was and her diaphragm wasn't causin
g any issues except the fast breathing. At day 5, the doctors released me but not her. I didn't leave that hospital nor left her side. The Doctors came to me that same day and told me she was jerking and they thought she might have been having seizures. They waited until she was stable and at day 9 we were able to go home. It was so amazing to finally have her home. The next week was packed full of Doctor appointments. The Pediatrician, a heart ultrasound and EKG, a brain ultrasound and EEG and numerous X-rays. Everything came back normal. After about a week of being at home, the projectile vomiting started. She never, from the day she was born, never spit up. It was always intense projectile vomiting. I also noticed her poop had not started forming yet. It was still pure liquid like at birth. So we were, again, in and out of the Pediatrician the next few days. She changed Karrisa's formula numerous times. The vomiting got worse. I took her to Children's Hospital ER. They sent her home and we ended up back at the ER three more times before they decided to keep her. They started running tests and all of them came back negative or normal. But the vomiting had gotten worse and it was happening everytime she ate. The Doctors decided a feeding tube would be the best answer because she couldn't hold anything on her tummy. So an NJ tube ( a feeding tube that bypasses the stomach and goes directly to the intestines) was put in. They also decided to start her on oxygen because her breathing had gotten worse. She would go into respiratory distress at least 3 times a day and it had gotten to where it took us a long time to get her out of it. They started the oxygen, not because she needed it to breathe but for help breathing so she wouldn't have to work so hard. Tests were still being run and still coming back normal. So her Pulmonalogist (lungs) and GI (stomach) Doctor had decided to run a scope and see if they could find anything. Of course, it came back normal. At this point the Doctors were getting just as aggravated as we were with no answers. Now she's around 3 months old and becoming more active. We ended up with 7 different tubes being put in because she kept getting ahold of them and pulling them out. So we decided to put in a G-Tube. This tube is inserted directly into the stomach. They also found a hole in her stomach and said that was causing the vomiting. She was in surgery 2 days later. They took her stomach and wrapped it around itself to close the hole and they also put in the G-Tube. During surgery her breathing went downhill and they ended up putting her on the ventilator in PICU. This was so far the scariest moment of my life. She was on the vent for a little over 24 hours. We were in PICU for 4 days then got released and sent back to a regular room on the floor. The next week was hell!! She had just had major stomach surgery and was in a TON of pain. When she wasn't sleeping, she was screaming a horrible scream I had never heard from her before. She would just look at me with these pitiful eyes like she was begging for help. It took a lot for us to get her pain under control. By the end of that week, my world got flipped upside down. It was a Friday morning and she had had a horrible night before. I kept saying her breathing wasn't right. By 8:00am the next morning her oxygen level had dropped to 82 and wouldn't come back up (it should be between 95-100). We called the Hospital Pediatrician who was on call that day and within minutes, we had 4 of her Doctors and 2 nurses around her bed. They did a quick X-ray of her chest and when the results came back it was shown that her lung had collapsed and shut down. Within minutes they had us back in PICU. By the time we got upstairs, she was pausing in her breathing which means she was giving up on breathing. I was minutes away from my little baby crashing and I was about to lose her. They rushed to get her back on the ventilator before she stopped breathing completely. They also put in a PIC line or what's also known as a central line because she has had so many IVs that her veins couldn't handle them anymore. Her blood work came back that she had caught not only the regular flu but also the H-Flu, which is a bacterial flu. Because of her lung disease, her immune system is garbage. It is so much easier for her to catch an illness and takes her 3 times as long to fight it off as normal babies. For the next 7 days I watched, helpless, as my daughter fought for her life. Her heart rate was at least 200, her body temperature dropped to 96 degrees, and her oxygen levels were all over the place. Finally the ICU Doctor decided he wanted her off the vent to see if she got any better without it. But it was still beside her bed in case we had to get her back on it. The first couple days after were a little rough. She was still very groggy from the sedatives. After 10 days in the PICU, we were sent back down to our regular room again on the floor. She did AMAZING for the next week after we got back. I felt like I was getting my baby back again. She was smiling, giggling, trying to talk, and kicking her legs. They even talked about us going home. Then, just like she always does, she all of a sudden got bad again. The retching started again but because of her stomach surgery, she will never be able to throw up again. It will always just be severe retching. She will try and try to throw something up and nothing will ever come out but because of her lung, it takes her breath and her oxygen levels drop. Her eye lids turned blue which also means her oxygen levels in her blood were bad. And she was sleeping ALL the time. So they put her on a heated oxygen which is stronger than normal oxygen and also started IV fluids and turned her feedings off. Her Pulmonalogist immediately decided there was nothing more we could do here, that we have done every test possible here and the best next move would be to get transferred to Vanderbilt Children's Hospital. We leave Monday morning for the next chapter in our life. I have no idea what we are walking into. I don't know what our plan is except she will have a lung biopsy after we get there. Her Pulmonalogist and GI Doctor there will decide our next moves after we get there and they examine her. We are uprooting our lives and moving 3 hours away from home. I don't know how long we will be there either. I don't know if they're gonna let me stay in the room with her or if they're gonna make me stay at the Ronald McDonald house. I haven't worked since December 23, 2015. I have gone through what little savings I had. Without my mom and dad and my aunt Ilene, I would have starved up to now. But now I won't have them there with me anymore. They will come visit when they can but they won't be right down the road anymore. I won't have my other kids there with me either. It will just be me and Karrisa, walking into a whole new situation, not knowing what to expect or what is going to happen. But I will move all over this world to get my baby the best care possible if I need to. Nothing else matters except getting her better. I do want every one to know, from every piece of my heart, I am so thankful for all the calls, messages, texts, posts, shares, and more than anything the prayers for my Babygirl over the past few months. The decision to make this account has been a really hard decision for me. I have had quite a few people telling me since this all started to make an account and let people help if they can or want to and I just couldn't do it. But I think it's now time to start one because I don't know what the future holds for us or how I'm gonna take care of myself when we do get there. I know my parents will help when they can but it's going to be a lot harder being so far away from home. Thank you all in advance for, if nothing else, to continue to pray for my sweet baby. She is, by far, the strongest person I have ever seen in my life. She has given me new life and a new outlook on life and I will do whatever I have to and whatever it takes to get her better. #KarrisasKourage