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Hi! Many of you know us, David and Tina (and Emerson), and those that don't know us, nice to meet you. We have a curious little 2 year old boy named Emerson, and now our little peanut, Leonora Nemia. We found out we would be expecting a new addition to our family last fall, and were excited to find out that it would be GIRL! The first grandbaby girl for the German family, and the third grandbaby girl on the Allred side. We knew that the pregnancy would be a little bit harder for mom because of her chronic hypertension, but expected a healthy baby girl. Her scans showed a 2 vessel cord, but mom was assured that it is completely normal. They would just do extra screenings, and visits more often to check up on baby and mom. We had regular visits, and genetic testing done which all proved to show no signs of anything wrong with baby girl. We picked out a name, and anxiously waited for her arrival date of April 14.
March 27, 2017 Leonora "Nora" had other plans for us. Mom blood pressure was too high (200s/100s) when she went in for her weekly check up and non-stress test. Nora was showing no signs of distress, but the high blood pressure was dangerous for Tina. The doctors opted for a urgent C-section to prevent her having a seizure or other complications. The C-section went well for mom and baby, but the doctors and nurses noticed something was different about Nora's apperance (skin tags on her right ear and crooked jaw). We heard her cute little cry as soon as she came out which was a good sign. They called the neonatologist over to evaluate. Mom was able to snuggle on her baby girl for 30 mins before they had to take Leonora to the NICU for more evaluations. Nothing can prepare you for the moment they tell you your baby has something different about her, and that she has to go to the NICU.
The NICU doctors weren't sure what was wrong with Nora, and if it was just her appearance that was affected. Nora went through a lot of testing in the few hours after her birth. Her heart scan showed normal, her kidneys showed normal, her brain scan showed normal, and her eye exam was normal. Now to the abormal stuff... Nora right side of her face was off set, she had a formed ear that was a little misshapen, her lip was a little elongated on the right side, and skin tags on her right ear. The main concern was how small her jaw was on the right side of her face. The DR. told us that the small jaw could be affecting her breathing. So the neonatologist called for a ENT specialist from Primary Childrens to evaluate.
The ENT findings... At first they thought it was Pierre Robin Sequence due to the small chin, but because there were other issues that lead them to her current diagnosis. Nora was diagnoised with a congenital disorder called Hemifacial Microsomia "HFM"(also known as (Goldenhar Syndrome), transverse cleft palate, and micrognathia with displaced tongue. A little information about HFM is that it is the second most common birth defect after cleft palate, but in Utah not many children seen with HFM. There was nothing the mom could of done to prevent it, and is not genetic. Nora will have a <3% chance from passing it to her kids, and the likelihood of us having another child born with HFM is <1%. For more reading about HFM you can read this site http://www.faces-cranio.org/Disord/Hemi.htm. They have great resources listed and any information about her diagnosis on there. Her small jaw (micrognathia) makes it hard for her to be able to get a good suction to eat, and her transverse cleft palate also makes it hard for her to eat. Intitally she had a nasogastic (NG) tube placed to help her gain weight while we tried to see if she could take a bottle with a special bottle for kids with a cleft palate.
The main concerns initally were airway and nutrition. The ENT got a CT scan of her jaw and said if she had a jaw present then they could do a jaw distraction and she wouldn't need any other intervention. So we were hoping that would be the case. He stated the worst case senario would be that she had no jaw or small bones, which meant that her airway was compromised (and hers was the worst case senario). The ENT stated that her case was a severe case. Her regular pediatrician has only seen one other child with this abnormality. The small jaw and the tongue blocking her airway (obstructive sleep apnea)made if hard for her to breathe, eat, and grow. So after many test and being transported to Primary Children's Hospital a game plan was slowly put in place. If baby girl couldn't get her REM sleep she wouldn't be able to grow apporitately, and her small jaw made it so she wasn't able to get the nutrition she needed by mouth. They also found that she cannot hear on the right ear, but can hear only on the inner ear. So she would need a special band called a BAHA (hearing aid) to help her, and later on in life she will need a cochelar implant on the right side. We were slowly realizing that this journey was going to be a long one full of surguries, and doctor visits.
April 13 a care conference with all the different specialist and doctors was put together and a plan was in place. On April 17, 2017 would be little Leonora's first surgery of many to come. She would get a tracheostomy (trach) placed in her airway to help her breathe, and a gastric tube (g-tube) placed in her stomach to help her get nutrition to grow. These two things she will need for the next 3-4 years of her life. The hardest thing in life it to watch your baby go through all these things, and not being able to do anything for her except just be present for her. We couldn't hold her for 3 days after her surgery to let her heal. This was the first of many surgeries to come. In 2-3 months we will come back to Primary Children's Hosptial to have her cleft lip/palate fixed, and the skin tags will be removed from the right side of her face. In 3 years we will begin her surgery to correct her jaw. They will remove a rib bone and put it in her jaw, then do a jaw distraction to make sure it grows with the rest of her. Then we will follow up with her cochlear implant when she is close to 7 years old. We are hoping to have her trach tube and g-tube out by the time she is 4 or 5 years old. As long as all surgeries go as planned. We have learned that our new normal is anything but normal. However, we would do it for her all over again because she is ours. We have learned sometimes the planned route is not the route that is planned for you.
The last month has been a whirlwind, and we are slowly seeing the dust settle from the strom. We will be bring home our little girl with a few more accessories than most. We have set up our own "hospital" for her at our house. Piles of medical supplies all put away and organized.
We opened this gofundme account to be a on going thing to help with Nora's current medical expenses, and future surgeries. All kids have their adventures in life, and we are here along Nora's side. Thanks for reading, and hope you have a nice day!
March 27, 2017 Leonora "Nora" had other plans for us. Mom blood pressure was too high (200s/100s) when she went in for her weekly check up and non-stress test. Nora was showing no signs of distress, but the high blood pressure was dangerous for Tina. The doctors opted for a urgent C-section to prevent her having a seizure or other complications. The C-section went well for mom and baby, but the doctors and nurses noticed something was different about Nora's apperance (skin tags on her right ear and crooked jaw). We heard her cute little cry as soon as she came out which was a good sign. They called the neonatologist over to evaluate. Mom was able to snuggle on her baby girl for 30 mins before they had to take Leonora to the NICU for more evaluations. Nothing can prepare you for the moment they tell you your baby has something different about her, and that she has to go to the NICU.
The NICU doctors weren't sure what was wrong with Nora, and if it was just her appearance that was affected. Nora went through a lot of testing in the few hours after her birth. Her heart scan showed normal, her kidneys showed normal, her brain scan showed normal, and her eye exam was normal. Now to the abormal stuff... Nora right side of her face was off set, she had a formed ear that was a little misshapen, her lip was a little elongated on the right side, and skin tags on her right ear. The main concern was how small her jaw was on the right side of her face. The DR. told us that the small jaw could be affecting her breathing. So the neonatologist called for a ENT specialist from Primary Childrens to evaluate.
The ENT findings... At first they thought it was Pierre Robin Sequence due to the small chin, but because there were other issues that lead them to her current diagnosis. Nora was diagnoised with a congenital disorder called Hemifacial Microsomia "HFM"(also known as (Goldenhar Syndrome), transverse cleft palate, and micrognathia with displaced tongue. A little information about HFM is that it is the second most common birth defect after cleft palate, but in Utah not many children seen with HFM. There was nothing the mom could of done to prevent it, and is not genetic. Nora will have a <3% chance from passing it to her kids, and the likelihood of us having another child born with HFM is <1%. For more reading about HFM you can read this site http://www.faces-cranio.org/Disord/Hemi.htm. They have great resources listed and any information about her diagnosis on there. Her small jaw (micrognathia) makes it hard for her to be able to get a good suction to eat, and her transverse cleft palate also makes it hard for her to eat. Intitally she had a nasogastic (NG) tube placed to help her gain weight while we tried to see if she could take a bottle with a special bottle for kids with a cleft palate.
The main concerns initally were airway and nutrition. The ENT got a CT scan of her jaw and said if she had a jaw present then they could do a jaw distraction and she wouldn't need any other intervention. So we were hoping that would be the case. He stated the worst case senario would be that she had no jaw or small bones, which meant that her airway was compromised (and hers was the worst case senario). The ENT stated that her case was a severe case. Her regular pediatrician has only seen one other child with this abnormality. The small jaw and the tongue blocking her airway (obstructive sleep apnea)made if hard for her to breathe, eat, and grow. So after many test and being transported to Primary Children's Hospital a game plan was slowly put in place. If baby girl couldn't get her REM sleep she wouldn't be able to grow apporitately, and her small jaw made it so she wasn't able to get the nutrition she needed by mouth. They also found that she cannot hear on the right ear, but can hear only on the inner ear. So she would need a special band called a BAHA (hearing aid) to help her, and later on in life she will need a cochelar implant on the right side. We were slowly realizing that this journey was going to be a long one full of surguries, and doctor visits.
April 13 a care conference with all the different specialist and doctors was put together and a plan was in place. On April 17, 2017 would be little Leonora's first surgery of many to come. She would get a tracheostomy (trach) placed in her airway to help her breathe, and a gastric tube (g-tube) placed in her stomach to help her get nutrition to grow. These two things she will need for the next 3-4 years of her life. The hardest thing in life it to watch your baby go through all these things, and not being able to do anything for her except just be present for her. We couldn't hold her for 3 days after her surgery to let her heal. This was the first of many surgeries to come. In 2-3 months we will come back to Primary Children's Hosptial to have her cleft lip/palate fixed, and the skin tags will be removed from the right side of her face. In 3 years we will begin her surgery to correct her jaw. They will remove a rib bone and put it in her jaw, then do a jaw distraction to make sure it grows with the rest of her. Then we will follow up with her cochlear implant when she is close to 7 years old. We are hoping to have her trach tube and g-tube out by the time she is 4 or 5 years old. As long as all surgeries go as planned. We have learned that our new normal is anything but normal. However, we would do it for her all over again because she is ours. We have learned sometimes the planned route is not the route that is planned for you.
The last month has been a whirlwind, and we are slowly seeing the dust settle from the strom. We will be bring home our little girl with a few more accessories than most. We have set up our own "hospital" for her at our house. Piles of medical supplies all put away and organized.
We opened this gofundme account to be a on going thing to help with Nora's current medical expenses, and future surgeries. All kids have their adventures in life, and we are here along Nora's side. Thanks for reading, and hope you have a nice day!