From The Beginning

I am starting from the very beginning when my angel was born. Adriana Renae was born on June 1, 2008. Weighing in at 6lbs 14oz. She was so beautiful and precious. Adriana was born with a cleft lip and high palate. We never knew about her brain disorder until she was 3 months old. During my pregnancy my doctor made me go to a specialist when he discovered her cleft lip during a sonogram. After 6 months of seeing a specialist we believed the only thing wrong with our baby was a cleft lip. During Adriana's first 3 months after being born we had no idea anything was wrong. Her pediatrician said she was growing at a slower rate but she was eating just fine so I shouldn't worry. The only thing during her 2ND & 3rd months that made suspicious was her urine out put. I noticed she was tinkling as much as she was eating, but I asked the pediatrician and she said to just feed her more and that she looked just fine. In August 2008 the plastic surgeon we met with to do the surgery on Adriana's lip suggested that I go to a clinic at the local Children's Hospital. I met with so many doctors and I didn't understand why I was there when her pediatrician told me everything was fine and I shouldn't worry. I met with the Genetics doctor and she suggested to get an MRI done immediately. We got the MRI done the next week. I called the doctor for the results and she told me that everything was fine I had nothing to worry about. It was like a big weight had been lifted off my shoulders. The next week when Adriana turned 4 months old she started throwing up & having seizures. I immediately took her to the emergency room. I couldn't understand why this was happening. The doctors came in and asked about her history and I told them everything. When I told them about her MRI being normal they looked at me with a look of concern and said let me look it up on the computer and I will be right back. I waited for about 20 minutes but it felt like I waited for hours. They came back and said Adriana is very dehydrated and her MRI was not normal. That's when my heart stopped. They said she has semi-lobar holoprosencephaly. They quickly got us up to a room and said we would be there for awhile. The first night they kept her on the monitors and an iv. I noticed she didn't want to eat for me like she normally does but I figured it was because she was so exhausted from the seizures and the new medicine. The next day we met with a neurologist and the endocrinologist. The neurologist explained to me that her brain was not normal. A normal brain splits into two sides but Adriana's brain split until you got to the frontal lobes. That's where her pituitary gland is and that causes all her seizures.He told us that many kids with her condition don't live passed 6 months. I couldn't believe it. I didn't understand why GOD would do this to us. I cried so much I couldn't open my eyes anymore. Then we met with the endocrinologist and he informed us she has hypothyroid and diabetes insipidus. She was releasing too much urine. That's why she was so dehydrated. We were completely stunned. I had asked the pediatrician just a month earlier if that was normal and she replied with yes. Obviously she didn't have any idea of what the definition of being a pediatrician meant. We got her seizures under control, we started her on new medicine for her thyroid and diabetes insipidus and within a week we were on our way home. I went home and just held my baby girl. My heart was broken. This is my first child, she is so sweet and never did anything to anyone. I couldn't understand what and why this was happening. After a few days at home her seizures began to get worse then they were before and she stopped eating for me. Back to the ER we went. This time they got us in a room right when we got there. They adjusted all her medicine and tried to prepare us for the worst because she just seemed to be going downhill. They told us that they are going to have give her a g-button. They explained to us that even though she will have a feeding tube she will still be able to eat through her mouth. They said that they wanted to do a swallow study on her to see if she may need a fundoplication to help with reflux. All her new medicine had her so asleep that she never woke up for the swallow study. The day of the surgery for her feeding tube they asked us if we wanted them to go ahead and do the fundoplication because all kids with her disorder need to have it. We told them no that we want the study done first and we would go from there. After the surgery we met Adriana back up in the room and we saw the g-button and we noticed that she had stitches going down her chest. We thought maybe that was from the g-button. When the surgeon came in to see how she was we asked what the stitches were for and he said that they did the fundoplication on her too. Our mouths dropped, I told him that we didn't want that done yet and I never signed for it. He brought me a consent with my signature for the fundoplication but you could tell that it had been copied because it was crooked on the paper. I asked for a copy and I waited and waited and finally before we went home I asked for it again and surprise surprise they couldn't find it. I was so furious because this is a Children's Hospital and you should be able to trust the doctors when they are caring for your child. At this point it was the end of October and we were finally going home. We went home thinking Adriana may not make it to Christmas. A couple of weeks went by and Adriana was fully recovered from the hospital stay and was beginning to act like herself again. She still would not eat for me through her mouth but since we had the button I wasn't to concerned about it. Thanksgiving came and we were already to go and all of the sudden I felt a lot of warmth coming from Adriana's bottom. I looked down and she pooped all over me and her!! I got her changed and we left because she didn't have a fever so I figured she just had a big poop. We enjoyed our Thanksgiving and the next day we got a call from some of our family and they were all sick! My baby got everyone sick except me and her papaw! Over the next few days she began to get a fever and poop a lot. I new she had a bad virus and I was beginning to get scared because the doctors had told me that any virus can really hurt Adriana. That next Monday after Thanksgiving I took her to a different pediatrician and he said that she will be fine it was just a bug going around. It took her about a week but she started feeling better. The next month was Christmas and Adriana got so many things. The New Year came and passed and Adriana was still with us going strong. I began to get some hope about her situation. Then February the 13Th 2009 which was also Friday the 13Th, Adriana had a 32 minute seizure. We called 911 and got her to the closest hospital and of course when we got there it had been an hour & a half since her seizure. Her seizure had stopped and she seemed fine but exhausted. The next month on March 13Th which was also Friday the 13Th again she had another 32 minute seizure. We had to call 911 again this time they took us to the closest Children's hospital. They gave us some emergency medicine for her encase it happened again. She was fine the next week and was playing and we had started her therapies with ECI so she was good to go. April 2009 we had scheduled her surgery for her cleft lip. It was suppose to be only a one night stay but we ended up staying a week. After her surgery Adriana was having trouble coming off of the anesthesia so they had to put the breathing tube back in and send her up to the PICU. The doctor that did the lip surgery did a marvelous job. She had a mid line cleft lip so he had to do some surgery on her nose too. Well the nurses in the PICU taped her breathing tube down to where it would not hurt her lip but they taped her nose and now her right nostril is smaller then the left nostril. I was really beginning to not like this hospital. After her surgeon came to check on her and after he got pissed about her nose they finally took the tape off. It was too late because it had been 6 hours since the surgery. Her lip and nose look amazing but you can tell that her right nostril is a little bit smaller. We got the okay to go home for Easter weekend but we had to come back that Monday to get the sutures out of her lip. Over the weekend her fever spiked and she just did not feel good. We took her in on Monday and her oxygen was at a 40%. They did a chest x-ray on her and she full blown pneumonia. We talked with her surgeon and he said that he had told the PICU doctors to do a chest x-ray on Adriana before we left the Friday before Easter. They never did one and when they were questioned about it they said it was a miscommunication. Adriana was not doing well at all. Her stats were fine as long as she had the breathing tube in. We had to sit down with the PICU doctors about what we want to do if she cant breathe on her own when they take the tube out. Of course we told them to do everything they can and put the breathing tube back in. After 2 tries at taking the tube out the 3rd time was a charm. After 2 weeks of staying at the hospital we were on our way home. She was beginning to be herself again but on May 8, 2009 she was having a rough day. She kept putting her tongue up the roof of her mouth and it would cause her to struggle to breathe. Finally I worked with her and got her to sleep for most of the day and when she woke up she was better. I had her in the living room while I was in the kitchen but I could see her. She was smiling and looking at me having a good time. I turned around to finish cooking and not 30 seconds later I turned back around and she was blue and not breathing. I called 911 and yelled at my neighbor outside to come help me. I began CPR on Adriana while my neighbor talked to the 911 operator. The ambulance was there within 2 minutes. I got Adriana breathing again by the time the paramedics came running into the house. They took her to the closest hospital and care flighted her to the Children's hospital nearby. We got to the PICU and Adriana was not doing good. We had to sit back down with the doctors and tell them we still wanted to do everything we can before we decide to do a DNR. A couple of days went by and Adriana was doing better so they decided to take the breathing tube out. Adriana beat them to the punch by trying to pull it out while we weren't there. They had to immediately take it out and once again she was struggling to breathe. They were looking at her chart when we arrived 10 minutes after all the drama and they said if they couldn't get her to breathing on her own they were going to go ahead and make her comfortable and do the DNR on her. I said no you will put the breathing tube back in and we will go from there. They said well we are going by what the chart says. I looked at the chart and they had a little boy's chart that said Adrian. They had the wrong chart!!! I was so mad I couldn't talk. I was really hating this hospital. To make things worse the same day I caught our nurse trying to give her the wrong medicine because once again she had the wrong chart. To make a long story short this hospital stay was horrible!! We only had one more hospital stay during 2009 and two more in 2010, but not much of anything got accomplished. Since we had so many problems with this Children's Hospital we asked them how do we change hospitals? We even asked in the nicest and most generous way as possible but we got told that we cannot change hospitals since Adriana has so many problems it would be easier to just stay with them. We were upset about it but we thought that maybe that would be the smart thing to do since Adriana's medial record is so long. Over the next couple of months I contacted Texas Scottish Rite Hospital to see how we could get Adriana in for one of their holoprosencephaly clinics. That was the best phone call I ever made! Adriana has been going to Scottish Rite for over a year now and they helped us switch hospitals!! Its amazing how a different atmosphere can change a child's attitude. Adriana is so relaxed when we have hospital stays. They are actually helping her and getting to the bottom of things not just putting a band aid on her problems. We have been admitted into this hospital three different times and not once did we have any problems or get told Adriana was going to die because she has a brain disorder. I didn't want to name the hospital we had problems with but the more I think about it the more it pisses me off!!! Cook Children's Hospital in Ft Worth, TX is the hospital that made all the horrible mistakes, the one that told us she was going to die, the one that tried to keep us there because of all the mistakes they made. They are a wonderful hospital if your child does not have a brain disorder. The nurses are not trained to know how to handle special kids. Children"s Medical Center in Dallas is where we made our switch to and I am so glad that we did. This hospital and Scottish Rite have become a blessing to us. We have learned so many things about Adriana that we didn't know. They listen to us, they help us, and they are amazing with my baby girl. I am so glad we are here. She has been to Children's in Dallas two times in 2010 and we are here now in 2011. My baby has aspiration pneumonia, a fever that will not break, and seizures that will not go away. Not once have they said we need to sit down with you to see if you want to do a DNR. They have been persistent on finding out why her fever wont break and they said we will not go home until she is better. That is music to my ears. I can actually sit back and take a break because I know my baby is in good hands.