Well the week of Thanksgiving Angelina had an outpatient procedure at Cook's to check out her GI tract, take biopsies of her GI tissues and also to place a PH Impedance probe in her esophagus so that they could tell if she was having reflux, get its PH balance, acid content, etc. We got those results back last week. After all this time Larry and I and her therapists are not completely insane....she does have reflux - hence all the non-provoked vomiting! Also it is starting to cause damage to her esophageal area on a microscopic basis. Her doctor doubled her reflux medicine and is giving that six weeks to work. I think that if Angelina is she is still vomiting when we go back to see the doc they will be recommending a surgery called fundoplacation (aka "fundo"). Basically, this procedure would wrap her stomach around the base of her esophagus so that the sphincter would remain closed when she got full and would decrease or eliminate vomiting for her. I really don't want her to have this done, but if she keeps vomiting they way she has been then she will have even more damage in her esophagus, which we don't want either. They she really wouldn't want to try to swallow anything!
Today she only threw-up one time - yeah! She had like an 8 hour stomach bug on Wednesday but got over that and was ready to go the next day. I am hopeful the medicine works, but it seems that when some doctor starts talking about surgery she inevitably has it.
Also, she went back to see her optometrist, Dr. Hunt. He has been seeing her since the beginning. He did both her eye surgeries and we really like him. He has recommended an eye surgery to "straighten" her right eye so that she won't lose sight in it. If you hadn't noticed, her eyes tend to wander out. If we just left it alone eventually she would lose sight in the weaker eye because the brain would just shut one of them off since it can't focus on two different things at once. He is letting us continue to try the drops to see if they help strengthen her right eye, but is not optimistic that there will be any change. We'll see.
We will take her on the 16th to be fitted for leg braces called "AFO's". I can't remember what that stands for right now! Anyway, hopefully she will have them before Christmas. She is doing so well in Physical Therapy and Occupational Therapy. She goes once a week right now and the therapists are doing their session together to get the best result for her. She seems to be responding to it pretty well. I think it helps that Briddy (PT) is there with the Debbie (OT) since OT is so new and Angelina doesn't really know her yet. She really likes Briddy though. She also goes to Speech Therapy once a week as well but since her vomiting had increased she hasn't really been doing all that well lately. We have stopped giving her pureed and now we are using flat suckers and graham cracker crumbs! That is more fun anyway. She does really well with these two different textures and seems not to be afraid to swallow the crumbs. Jana (ST) thinks that once the reflux is under control she will be more willing to try to swallow food. It is what it is and I am not so much worried about the eating food thing as I am getting her motivated to want to crawl or push to sitting, things like that. Poor vision begets lack of motivation to try to get to things one really can't see anyway!
That is all for the medical side of updates right now!
Sunday, November 30, 2008
Saturday, November 29, 2008
Angelina's Story
Hello there! My name is Andrea Safford I would like to tell you the story of my daughter, Angelina Safford. This story began August 2006 when my husband and I went through IVF and I became pregnant with twins, a boy and a girl. The pregnancy was progressing along well, but there was only one concern. Baby girl was somewhat smaller than Baby Boy. There was about three weeks gestational difference between them. I started to see a maternal-fetal specialist, Dr. Brad Thigpen. The first time we saw him he basically said that if these were two separate pregnancies there really would be no need for concern but for now we would just keep the size difference under watch. The second appointment was somewhat different. All looked to be okay until he checked the cord blood flow. It was like all was fine one minute and the next it was like he saw a ghost on the screen. Then he asked me how I felt about being admitted to the hospital. I told him that I had always thought I would be admitted long before my due date, but when was he talking about. He looked at his watch, looked up at us and said "30 minutes"! He looked at us and explained that she was not receiving adequate blood flow in her umbilical cord. The options were that we do nothing and she would eventually pass or we could deliver them and let her fight for her life. The way things looked he thought he might have to deliver the babies that night to save Angelina. I think I went into shock. My eyes felt like they were popping out of my head as I looked him in disbelief. As I was trying to process it all I asked about viability if he had to deliver at this stage since I was only 26 weeks at that point. All I could think was that my poor little babies may not make it and how much I loved them. So we began our two week stay at Harris Hospital Antipartum unit. I lasted 10 days and each day seemed to be better than the last for Angelina.
That all changed January 19, 2007. They had the fetal monitors on me for 4 hours that day because her heart rate just wasn't stable. It kept dropping and seemed like it took forever to come back up to normal. After about 4 hours of that they started prepping me for delivery. Somehow I knew it was going to happen that day. I was completely devastated and Larry was doing such a great job at trying to calm me down. It was over so fast. The nurses placed each child in an isolette and stopped so I could see each one before rushing them down to the NICU. Bradyn weighed in at 2 lbs 10 oz and weighed in at only 1 lb 7 oz. Angelina suffered from Intrauterine Growth Retardation and because of the absent flow in her umbilical cord she was over 1 pound smaller than her brother and three inches shorter. Basically that means that her brother, Bradyn, got all the groceries! She was so underdeveloped that she looked like a little alien baby while Bradyn looked like a really skinny baby. We couldn't talk around her or caress her skin because her nervous system was still developing and she just couldn't take it. She also has brain damage due to prematurity called Periventricular Leukomalacia (PVL) that affects the motor part of her brain. She had her first surgery at 3 weeks of age called a PDA Legation. It was to close a valve between the heart and lungs so that she could breathe better. She had a hard time recovering as she took on 1 pound of fluid on her 2 pound body. She was literally maxed out on all the drugs they could give her to make her start urinating to get rid of the excess fluid. FINALLY she did and man did that little girl pee Big Gulps! She progressed slowly but steadily and all was going well. Then we were advised that she had developed Retinopathy Of Prematurity (ROP) in her eyes making her veins go wild. She needed a surgery to correct this or her retina would eventually detach making her blind. She took a little time to recover after that but nothing serious. She really began to pick up speed gaining weight and graduating to different breathing mechanisms when her optometrist advised that her right eye needed a repeat ROP surgery. She had that surgery the day we roomed in to make sure Bradyn was okay to take home with us. It also happened to be Good Friday. She did well with this surgery and man it seemed like the steam was picking up for her. In no time she was learning to eat from bottle and did a a pretty good job at it too! Something should have told us not to hold our breath. The other shoe dropped. We had gotten a call from her neonatologist, Dr. Grubbs, that she had developed Pulmonary Hypertension. This was bad. They had to place her back on a ventilator to encourage new lung tissue growth. This was the only treatment they could do. It was devastating to see her come so far and get caught by something like this. Her doctors literally sat us down and had the "it's okay to let her go" discussion. That was so intense. We just prayed for the best and listened to what her body was telling us. Gradually she began to get better then one morning around 4 am she pulled her breathing tube out and was breathing on her own perfectly! The nurses were so freaked out they called her daddy at work with the good news! It was only 3 weeks later that she would end her 5 month stay at the hospital and come home.
Once she did come home we had a 7 month feeding battle. You can't imagine how heartbreaking it is to have to force feed your child and then after all the hard work have her vomit it all up. She continued to stay small and very infant like for such a long time. Finally after all the vomiting and reflux medication we took her to see a Gastroenterologist. At that first visit they changed her formula and WOW what a difference that made. Apparently, she was having an allergic reaction to the cow's milk protein in her previous formula. In just a few short weeks she almost completely stopped vomiting and would actually eat a 6 ounce bottle in about 30 minutes. Of course we were still feeding her every 3 hours and trying to work on pureed foods. Still even with that victory by her first birthday she weighed only 14.5 pounds. She was still at about 1% on the growth chart. This was still not good. All of her doctors at this point were of the same opinion - G-Button time. We had been so reluctant and had worked so hard to get her this far. It seemed so defeating that we still could not get past this G-Button talk. We met with Dr. Patrick Thomas, her pediatric surgeon. He talked us through how the G-Button surgery would go and how life would be for her. After hearing the pros and cons of the G-Button we decided that it was time. So finally on February 18, 2008 she had her G-Button surgery. She picked back up the nasty habit of vomiting - A LOT. That was such a disappointment. By late March she hadn't really gained any weight because of all the vomiting. I was completely overwhelmed with no sleep for fear she would aspirate during the night and took her in the see the GI doctor. We formed a plan to put her on 24 hour feeds until she could really get used to the volume. Then we slowly graduated her down to feeds every three hours during the day with overnight continual feeds then just to day feeds every three hours. Now she eats about every four hours and can take much more volume. Don't get me wrong, she still vomits but I guess we have learned how to overcome that. Now she weighs in at around 25 pounds!
Angelina developed partial seizures and they weren't actually diagnosed until July 2008. That was when we saw her Neurologist, Dr. Acosta, for the first time. She never had an actual spastic seizure, the really scary kind, it was more just starring off into space. Once we knew what was happening we saw them a lot. She had a 24 hour EEG in mid December and they didn't detect any at all!
She has been receiving PT, OT and ST since she came home and is making progress all the time. She really has excelled in her physical therapy being able to stand assisted. She is sitting up for longer periods of time playing with upright toys and tries to move herself around on the floor. She still is primarily feed through her G-Button, but she tries to swallow food. She gets out more than goes in!
We are so thankful that God has placed her in the hands of such a capable Medical Team. We have had such great experiences with each and every one of them. Her therapists, Briddy and Jana, do such an amazing job with her and she really trusts them. Dr. Dambro is her pulmonologist and has been seeing her since she was born. Dr. D is a major player in her amazing recovery. She placed Angelina and her brother on "quarantine" their first during the RSV season so we missed the holidays with our families, but it was all worth it. Her lungs continue to sound great! Thanks Dr. D!! Her neurologist is Dr. Acosta. He has been able to get her seizures under control and with the medicine has been able to stop them from happening at all! Dr. Hunt keeps track of her eyesight and keep us informed of alternative treatments until it is time for her next eye surgery. The are all so great and keep her well!
She is an amazing little girl and is really an inspiration for our family. She has overcome so much and she deserves all the right tools to be the best Angelina she can be!
Angelina has spactic quadrapeligic epilepsy and dystonia cerebral palsy. This means she has poor control of her movements but purposeful movements in all four limbs. She has epilepsy and muscle abnormality in her ankles and feet. She attends Speech Therapy, Physical Therapy and Occupational Therapy on a weekly basis. She sees her most amazing neurologist every couple of months to check her progress in those areas. She will also be receiving Hyperbaric Oxygen Therapy next year as well. These non-invasive treatments are the best route we can take to help Angelina be the best she can be. She wants to do many things but she just can't make her muscles do the them. By providing her with intensive therapy she has much more of an likelyhood to be able to do those things in the future.
We can't wait for the day she can sit without losing her balance, crawl, walk or feed herself. We are thankful she can do the things she does now because her MRI says she shouldn't be able to do those things - BUT SHE DOES. She has such an amazing spirit and fire about her that doesn't let her quit!
She deserves to do the things she wants to do and the opportunity to better her quality of life!
Making Progress One Day at a Time!!!
That all changed January 19, 2007. They had the fetal monitors on me for 4 hours that day because her heart rate just wasn't stable. It kept dropping and seemed like it took forever to come back up to normal. After about 4 hours of that they started prepping me for delivery. Somehow I knew it was going to happen that day. I was completely devastated and Larry was doing such a great job at trying to calm me down. It was over so fast. The nurses placed each child in an isolette and stopped so I could see each one before rushing them down to the NICU. Bradyn weighed in at 2 lbs 10 oz and weighed in at only 1 lb 7 oz. Angelina suffered from Intrauterine Growth Retardation and because of the absent flow in her umbilical cord she was over 1 pound smaller than her brother and three inches shorter. Basically that means that her brother, Bradyn, got all the groceries! She was so underdeveloped that she looked like a little alien baby while Bradyn looked like a really skinny baby. We couldn't talk around her or caress her skin because her nervous system was still developing and she just couldn't take it. She also has brain damage due to prematurity called Periventricular Leukomalacia (PVL) that affects the motor part of her brain. She had her first surgery at 3 weeks of age called a PDA Legation. It was to close a valve between the heart and lungs so that she could breathe better. She had a hard time recovering as she took on 1 pound of fluid on her 2 pound body. She was literally maxed out on all the drugs they could give her to make her start urinating to get rid of the excess fluid. FINALLY she did and man did that little girl pee Big Gulps! She progressed slowly but steadily and all was going well. Then we were advised that she had developed Retinopathy Of Prematurity (ROP) in her eyes making her veins go wild. She needed a surgery to correct this or her retina would eventually detach making her blind. She took a little time to recover after that but nothing serious. She really began to pick up speed gaining weight and graduating to different breathing mechanisms when her optometrist advised that her right eye needed a repeat ROP surgery. She had that surgery the day we roomed in to make sure Bradyn was okay to take home with us. It also happened to be Good Friday. She did well with this surgery and man it seemed like the steam was picking up for her. In no time she was learning to eat from bottle and did a a pretty good job at it too! Something should have told us not to hold our breath. The other shoe dropped. We had gotten a call from her neonatologist, Dr. Grubbs, that she had developed Pulmonary Hypertension. This was bad. They had to place her back on a ventilator to encourage new lung tissue growth. This was the only treatment they could do. It was devastating to see her come so far and get caught by something like this. Her doctors literally sat us down and had the "it's okay to let her go" discussion. That was so intense. We just prayed for the best and listened to what her body was telling us. Gradually she began to get better then one morning around 4 am she pulled her breathing tube out and was breathing on her own perfectly! The nurses were so freaked out they called her daddy at work with the good news! It was only 3 weeks later that she would end her 5 month stay at the hospital and come home.
Once she did come home we had a 7 month feeding battle. You can't imagine how heartbreaking it is to have to force feed your child and then after all the hard work have her vomit it all up. She continued to stay small and very infant like for such a long time. Finally after all the vomiting and reflux medication we took her to see a Gastroenterologist. At that first visit they changed her formula and WOW what a difference that made. Apparently, she was having an allergic reaction to the cow's milk protein in her previous formula. In just a few short weeks she almost completely stopped vomiting and would actually eat a 6 ounce bottle in about 30 minutes. Of course we were still feeding her every 3 hours and trying to work on pureed foods. Still even with that victory by her first birthday she weighed only 14.5 pounds. She was still at about 1% on the growth chart. This was still not good. All of her doctors at this point were of the same opinion - G-Button time. We had been so reluctant and had worked so hard to get her this far. It seemed so defeating that we still could not get past this G-Button talk. We met with Dr. Patrick Thomas, her pediatric surgeon. He talked us through how the G-Button surgery would go and how life would be for her. After hearing the pros and cons of the G-Button we decided that it was time. So finally on February 18, 2008 she had her G-Button surgery. She picked back up the nasty habit of vomiting - A LOT. That was such a disappointment. By late March she hadn't really gained any weight because of all the vomiting. I was completely overwhelmed with no sleep for fear she would aspirate during the night and took her in the see the GI doctor. We formed a plan to put her on 24 hour feeds until she could really get used to the volume. Then we slowly graduated her down to feeds every three hours during the day with overnight continual feeds then just to day feeds every three hours. Now she eats about every four hours and can take much more volume. Don't get me wrong, she still vomits but I guess we have learned how to overcome that. Now she weighs in at around 25 pounds!
Angelina developed partial seizures and they weren't actually diagnosed until July 2008. That was when we saw her Neurologist, Dr. Acosta, for the first time. She never had an actual spastic seizure, the really scary kind, it was more just starring off into space. Once we knew what was happening we saw them a lot. She had a 24 hour EEG in mid December and they didn't detect any at all!
She has been receiving PT, OT and ST since she came home and is making progress all the time. She really has excelled in her physical therapy being able to stand assisted. She is sitting up for longer periods of time playing with upright toys and tries to move herself around on the floor. She still is primarily feed through her G-Button, but she tries to swallow food. She gets out more than goes in!
We are so thankful that God has placed her in the hands of such a capable Medical Team. We have had such great experiences with each and every one of them. Her therapists, Briddy and Jana, do such an amazing job with her and she really trusts them. Dr. Dambro is her pulmonologist and has been seeing her since she was born. Dr. D is a major player in her amazing recovery. She placed Angelina and her brother on "quarantine" their first during the RSV season so we missed the holidays with our families, but it was all worth it. Her lungs continue to sound great! Thanks Dr. D!! Her neurologist is Dr. Acosta. He has been able to get her seizures under control and with the medicine has been able to stop them from happening at all! Dr. Hunt keeps track of her eyesight and keep us informed of alternative treatments until it is time for her next eye surgery. The are all so great and keep her well!
She is an amazing little girl and is really an inspiration for our family. She has overcome so much and she deserves all the right tools to be the best Angelina she can be!
Angelina has spactic quadrapeligic epilepsy and dystonia cerebral palsy. This means she has poor control of her movements but purposeful movements in all four limbs. She has epilepsy and muscle abnormality in her ankles and feet. She attends Speech Therapy, Physical Therapy and Occupational Therapy on a weekly basis. She sees her most amazing neurologist every couple of months to check her progress in those areas. She will also be receiving Hyperbaric Oxygen Therapy next year as well. These non-invasive treatments are the best route we can take to help Angelina be the best she can be. She wants to do many things but she just can't make her muscles do the them. By providing her with intensive therapy she has much more of an likelyhood to be able to do those things in the future.
We can't wait for the day she can sit without losing her balance, crawl, walk or feed herself. We are thankful she can do the things she does now because her MRI says she shouldn't be able to do those things - BUT SHE DOES. She has such an amazing spirit and fire about her that doesn't let her quit!
She deserves to do the things she wants to do and the opportunity to better her quality of life!
Making Progress One Day at a Time!!!
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