I am beginning this blog on the day after Stehle's 16 month birthday. I am creating this blog as a way to keep our family and friends updated on Stehle and her care. After telling our story repeatedly and always feeling like I'm leaving something or someone out, I've decided this would be a great way to keep everyone up to date. I hope this is helpful for all of you and us.
I guess I will just start from the beginning. When I was carrying Stehle I had a perfect pregnancy, very healthy and I was even able to deliver her in our home with the help of our midwife. After she was born I was having alot of trouble trying to get her to breast feed. After a trip to the pediatrician and a lactation specialist we were assured that it would just take some time and patience but keep trying. Two days later Stehle still wasn't able to feed, I had just been giving her pumped milk through a dropper because she wasn't catching on to bottle feeding either. I noticed that what she did get would come out her nose and she would have some trouble breathing. So we went back to the pediatrician. After another good look over, the Dr. said, "Oh she has a cleft palate." I immediately felt struck with confusion and panic. Everything had gone so well up to this moment. Landon rushed to the Dr's office from work, and we were then explained what the next steps would be to fix her palate. The next day we were in Ft. Worth at an ear, nose and throat specialist. Who we decided not to use, we opted for a cleft palate team who we found at Dallas Childrens Hospital. And after a visit to Dallas her surgery was scheduled for July 2.
So for the next few months we prepared ourselves for her cleft palate surgery that we thought would be what "fixed" her problem. But at her 3 month check up her Dr. expressed to me she was concerned that there might be a bigger issue. She explained that aloth of kids have cleft palate, alot have umbilical hernias, their ears are a little misshaped. But since Stehle had all of these combined she wanted to send off some blood work just to be safe. I agreed feeling glad that we had a pediatrician that was so overly cautious.
Weeks later the Dr. calls and says she has the test results, she's clearing her afternoon appointments, and would like to see me and Landon in her office as soon as possible. I couldn't just get off the phone without any more information. I asked, "what's wrong, did something come back not okay?" Her Dr. then said, " She has DiGeorge Syndrome, I know you probably don't know what that means but we will talk about everything when you get here. In the mean time don't get on the internet and try to research it. Just come in so we can talk." I agreed and of course through tears called Landon and told him to come home.
Stehle's pediatrician was the best, I fully trusted her and of course was looking to her for answers. She sat us down and through fighting back her own tears said, "Stehle has DiGeorge Syndrome, this is a genetic disorder. This explains why she has the cleft palate and other issues. There are so many things that fall under this syndrome, the first step is to get her to specialists to find out what she has and what she doesn't." Typically DiGeorge patients have cardiac issues, kidney and liver problems, immune system deficiencies, facial deformities, learning diabilities, cleft palate, hearing problems, and the list goes on. You can go to http://www.vcfsef.org/ for more information on DiGeorge Syndrome.
So our next weeks were filled with specialist appointments, cardiologist, ent, geneticist, infectious disease. From these we found out Stehle has a torturous aorta and bicuspid flaps on her heart. These are not life threatening they just need to be monitored, she was born missing a strand of IGG which is part of her immune system that helps fight illness, her T cell levels are low, so we have to be careful not to expose her to illness, daycare, or nurseries. The geneticist noted that she has the facial features that alot of DiGeorge patients have, which is a small chin and mouth, low ears and small nose. Which I never would have noticed, she still just looks like my Stehle to me. At all of these appointments we were given the "what to expect" speech. So we know what to look for in the future.
July 2 rolls around, she was so tiny. The thought of what she was fixing to go through was killer for me as her mother. When they called us back to the ICU when she was out of surgery I was so glad to see her but at the same time I felt helpless. As part of the cleft palate surgery, they pierced her tongue and left a string running though it to allow them to pull her tongue out to allow her to breath since she was so swollen, she had blood coming from her ears, nose and around her mouth. This was all normal, but like I said as her mother, I never wanted this for her.
We spent an extra few days in the hospital due to her swelling and breathing problems. We were taught how to feed her through a small tube connected to a syringe, and she wore arm restraints for 10 days to ensure she wouldn't put anything in her mouth. Stehle was such a little fighter and bounced back. Within 2 weeks she was doing well. But when she had her cleft palate repaired she also had tubes put in her ears, which is what they do with all cleft babies, but with the tubes came alot of ear drainage. Including food and liquids would come out of her ears, because she still had a hole where they still needed to repair her hard palate. Dr.'s usually repair the soft palate once babies reach a weight requirement and then repair the hard palate at around 18 months to allow more bone growth to work with. So for the last 12 months she has endured weekly ear suctionings, multiple antibiotics to help control the growth of bacteria that grows in her ears from the drainage and food backup. Finally her ENT decided she should go into another surgery to have one tube removed, and her adnoids removed. So right after her one year birthday she had those done. Which didn't seem to help much, so she was then referred to an otolarynologist. And as of now Stehle has gone a full month without drainage until about a week ago. Which was remarkable! Before we were suctioning her ears out about 4 times a day and cleaning them, then adding drops. She has had some hearing loss due to the drainage, which along with her cleft palate has delayed speech. I am hoping after her hard palate repair both hearing and speech will improve. Shortly after we left the hospital for the surgery on her adnoids and tubes, Stehle got really sick and was sent to the hospital after reaching a fever of 107.7. Stehle was in the hospital of 3 days after catching the Adenovirus, which is a cold. The problem with Stehle getting sick is, because of her immune system, when she catches an illness, she gets really sick and it takes her little body longer to fight through it and recover. Since that inci
dent she has ran a fever of 106 or more several times. We now know that DiGeorge children have a hard time regulating their own body temperature, so on really hot days we have to be careful that she doesn't over heat.
Stehle is scheduled for her next surgery Aug. 26 of this year to repair her hard palate and replace her tubes. There is also a possibility of a stem cell transplant to try to help her immune system. I hope this blog has helped update everyone on Stehle's care so far and I plan to update this blog monthly to keep everyone informed. Please feel free to ask questions or leave comments. And if this blog finds another parent, family member of friend dealing with DiGeorge or other health issues I hope you find this helpful in some way. I know I still read other parents blogs and pages when I am having a rough day. In Stehle's life she has been to the Dr. more than 57 times, hospitalized four times and seen the inside of an ambulance. But the great thing is, you would never know it, she is an angel here on earth. She keeps me uplifted and hopeful everyday.
I guess I will just start from the beginning. When I was carrying Stehle I had a perfect pregnancy, very healthy and I was even able to deliver her in our home with the help of our midwife. After she was born I was having alot of trouble trying to get her to breast feed. After a trip to the pediatrician and a lactation specialist we were assured that it would just take some time and patience but keep trying. Two days later Stehle still wasn't able to feed, I had just been giving her pumped milk through a dropper because she wasn't catching on to bottle feeding either. I noticed that what she did get would come out her nose and she would have some trouble breathing. So we went back to the pediatrician. After another good look over, the Dr. said, "Oh she has a cleft palate." I immediately felt struck with confusion and panic. Everything had gone so well up to this moment. Landon rushed to the Dr's office from work, and we were then explained what the next steps would be to fix her palate. The next day we were in Ft. Worth at an ear, nose and throat specialist. Who we decided not to use, we opted for a cleft palate team who we found at Dallas Childrens Hospital. And after a visit to Dallas her surgery was scheduled for July 2.
So for the next few months we prepared ourselves for her cleft palate surgery that we thought would be what "fixed" her problem. But at her 3 month check up her Dr. expressed to me she was concerned that there might be a bigger issue. She explained that aloth of kids have cleft palate, alot have umbilical hernias, their ears are a little misshaped. But since Stehle had all of these combined she wanted to send off some blood work just to be safe. I agreed feeling glad that we had a pediatrician that was so overly cautious.
Weeks later the Dr. calls and says she has the test results, she's clearing her afternoon appointments, and would like to see me and Landon in her office as soon as possible. I couldn't just get off the phone without any more information. I asked, "what's wrong, did something come back not okay?" Her Dr. then said, " She has DiGeorge Syndrome, I know you probably don't know what that means but we will talk about everything when you get here. In the mean time don't get on the internet and try to research it. Just come in so we can talk." I agreed and of course through tears called Landon and told him to come home.
Stehle's pediatrician was the best, I fully trusted her and of course was looking to her for answers. She sat us down and through fighting back her own tears said, "Stehle has DiGeorge Syndrome, this is a genetic disorder. This explains why she has the cleft palate and other issues. There are so many things that fall under this syndrome, the first step is to get her to specialists to find out what she has and what she doesn't." Typically DiGeorge patients have cardiac issues, kidney and liver problems, immune system deficiencies, facial deformities, learning diabilities, cleft palate, hearing problems, and the list goes on. You can go to http://www.vcfsef.org/ for more information on DiGeorge Syndrome.
So our next weeks were filled with specialist appointments, cardiologist, ent, geneticist, infectious disease. From these we found out Stehle has a torturous aorta and bicuspid flaps on her heart. These are not life threatening they just need to be monitored, she was born missing a strand of IGG which is part of her immune system that helps fight illness, her T cell levels are low, so we have to be careful not to expose her to illness, daycare, or nurseries. The geneticist noted that she has the facial features that alot of DiGeorge patients have, which is a small chin and mouth, low ears and small nose. Which I never would have noticed, she still just looks like my Stehle to me. At all of these appointments we were given the "what to expect" speech. So we know what to look for in the future.
July 2 rolls around, she was so tiny. The thought of what she was fixing to go through was killer for me as her mother. When they called us back to the ICU when she was out of surgery I was so glad to see her but at the same time I felt helpless. As part of the cleft palate surgery, they pierced her tongue and left a string running though it to allow them to pull her tongue out to allow her to breath since she was so swollen, she had blood coming from her ears, nose and around her mouth. This was all normal, but like I said as her mother, I never wanted this for her.
We spent an extra few days in the hospital due to her swelling and breathing problems. We were taught how to feed her through a small tube connected to a syringe, and she wore arm restraints for 10 days to ensure she wouldn't put anything in her mouth. Stehle was such a little fighter and bounced back. Within 2 weeks she was doing well. But when she had her cleft palate repaired she also had tubes put in her ears, which is what they do with all cleft babies, but with the tubes came alot of ear drainage. Including food and liquids would come out of her ears, because she still had a hole where they still needed to repair her hard palate. Dr.'s usually repair the soft palate once babies reach a weight requirement and then repair the hard palate at around 18 months to allow more bone growth to work with. So for the last 12 months she has endured weekly ear suctionings, multiple antibiotics to help control the growth of bacteria that grows in her ears from the drainage and food backup. Finally her ENT decided she should go into another surgery to have one tube removed, and her adnoids removed. So right after her one year birthday she had those done. Which didn't seem to help much, so she was then referred to an otolarynologist. And as of now Stehle has gone a full month without drainage until about a week ago. Which was remarkable! Before we were suctioning her ears out about 4 times a day and cleaning them, then adding drops. She has had some hearing loss due to the drainage, which along with her cleft palate has delayed speech. I am hoping after her hard palate repair both hearing and speech will improve. Shortly after we left the hospital for the surgery on her adnoids and tubes, Stehle got really sick and was sent to the hospital after reaching a fever of 107.7. Stehle was in the hospital of 3 days after catching the Adenovirus, which is a cold. The problem with Stehle getting sick is, because of her immune system, when she catches an illness, she gets really sick and it takes her little body longer to fight through it and recover. Since that inci
dent she has ran a fever of 106 or more several times. We now know that DiGeorge children have a hard time regulating their own body temperature, so on really hot days we have to be careful that she doesn't over heat.Stehle is scheduled for her next surgery Aug. 26 of this year to repair her hard palate and replace her tubes. There is also a possibility of a stem cell transplant to try to help her immune system. I hope this blog has helped update everyone on Stehle's care so far and I plan to update this blog monthly to keep everyone informed. Please feel free to ask questions or leave comments. And if this blog finds another parent, family member of friend dealing with DiGeorge or other health issues I hope you find this helpful in some way. I know I still read other parents blogs and pages when I am having a rough day. In Stehle's life she has been to the Dr. more than 57 times, hospitalized four times and seen the inside of an ambulance. But the great thing is, you would never know it, she is an angel here on earth. She keeps me uplifted and hopeful everyday.
