Dr. Packwood the opthamologist that fixed her eye called us Wednesday afternoon and let us know there was no cancer, no tumors or any kind of growth at showed up on the MRI,which is a HUGE blessing and I am beyond thankful that's not what is wrong. However, Lily has been diagnosed with septo optic dysplasia in her left eye and an abnormal pituitary gland. Being a nurse in a situation like this has its perks and its drawbacks. This is a diangosis/condition that neither of us had heard of but we do have an understanding of the body that most people dont so we were able to figure some things out from our nursing knowledge. We got on the internet and did a little research. Let me caution you, as Dr. Packwood did us, if you decide to do research about it there is ALOT of very scary stuff on there and to take it with a grain of salt. Here is some information from a website I found that explains it all well:
Septo-optic dysplasia is a disorder of early brain development. Although its signs and symptoms vary, this condition is traditionally defined by three characteristic features: underdevelopment (hypoplasia) of the optic nerve, abnormal formation of structures along the midline of the brain (at this point we dont know if this is part of Lily's diagnosis, it appears to not be part of her problem so far but we won't know more until we see a neurologist in may), and pituitary hypoplasia.
The first major feature, optic nerve hypoplasia, is the underdevelopment of the optic nerves, which carry visual information from the eyes to the brain. In affected individuals, the optic nerves are abnormally small and make fewer connections than usual between the eyes and the brain. As a result, people with optic nerve hypoplasia have impaired vision in one or both eyes. For Lily it's only the Left Optic Nerve and again we wont know anything about how her vision has been affected until we see the neurologist. Optic nerve hypoplasia can also be associated with unusual side-to-side eye movements (nystagmus) and other eye abnormalities.
This is the part that does not seem to part of Lily's diagnosis, this is the very scary part so read it with caution. Lily is very developmentally on target and her development has not been a concern to any of the doctors this far and that say she is developmentally "bright". The second characteristic feature of septo-optic dysplasia is the abnormal development of structures separating the right and left halves of the brain. These structures include the corpus callosum, which is a band of tissue that connects the two halves of the brain, and the septum pellucidum, which separates the fluid-filled spaces called ventricles in the brain. In the early stages of brain development, these structures may form abnormally or fail to develop at all. Depending on which structures are affected, abnormal brain development can lead to intellectual disability and other neurological problems.
This is part of Lily's diagnosis. We have been referred to an Endocrinologist and we saw him this morning. The hormones most concerning right now are her thyroid levels, growth hormone and blood sugar. It is too early to tell how some of the other hormones your body releases will function until she is a little older. He will follow us until she reaches puberty and check all of her hormones and watch them closely. He does not seem deeply concerned because Lily's outward appearncce does not signify hormone deficincies. It is however a concern that because she was in the NICU for several days after being born and was treated for hypoglycemia with an IV glucose medication(which according to Dr. Thornton is a classic sign of hypopituitarism but may be related to stress of labor for 28 hours) and also had low thyroid levels when she was a few weeks old there might be some deficiencies, all of this has stabilized on its own and we'll wait for the blood results for a more definitive answer. The third major feature of this disorder is pituitary hypoplasia. The pituitary is a gland at the base of the brain that produces several hormones. These hormones help control growth, reproduction, and other critical body functions. Underdevelopment of the pituitary can lead to a shortage (deficiency) of many essential hormones. Most commonly, pituitary hypoplasia causes growth hormone deficiency, which results in slow growth and unusually short stature. Lily is in the 50-75% percentile for height and weight and is trending in growth appropriately but he will see how she continues to progress throughout the next several years. Severe cases cause panhypopituitarism, a condition in which the pituitary produces no hormones. Panhypopituitarism is associated with slow growth, low blood sugar (hypoglycemia), genital abnormalities, and problems with sexual development (obviously we can't tell anything about this yet).
The signs and symptoms of septo-optic dysplasia can vary significantly. Some researchers suggest that septo-optic dysplasia should actually be considered a group of related conditions rather than a single disorder. About one-third of people diagnosed with septo-optic dysplasia have all three major features; most affected individuals have two of the major features. In rare cases, septo-optic dysplasia is associated with additional signs and symptoms, including recurrent seizures (epilepsy), delayed development, and abnormal movements.
Treatment, if needed for any hormone deficiencies, will be with medication that will be oral or shots depending on what the deficiency is. We wont know for 2-3 weeks the results of the blood work she had done today.
Septo-optic dysplasia has a reported incidence of 1 in 10,000 newborns. This is the part that I can't seem to grasp. Out of all of the babies born why ours? The only conclusion I can come to is that the Lord knows that Jordan and I can handle this and that we are the perfect parents to take care of and raise a child with this. If he didnt think we were capable he wouldnt have allowed our baby to be one of the 10,000 newborns born with this condition. There seems to me to be a severe side and a mild side to this and at this point Lily appears to be on the mild side which I am eternally grateful for. Please pray for our sweet angel. Pray for her vision in her left eye and that it wont be affected and if it has been that it will improve, pray that her blood levels all come back within normal range, pray for knowledge for Dr. Thornton her endocrinologist and for her neurologist she'll see in May and that they will know how to treat her best, pray for me and Jordan that we can contain our emotions (I have been an emotional basketcase and have cried at just about anything) and that we will come to terms with this diagnosis and allow for God's healing in our hearts and minds and to trust in his continuing promise to take care of us, pray for Lily that this won't affect her in a negative way. We weren't able to get an appointment with a neurologist until May 13 and have been put on the cancellation list, pray we could get in before then. I could go on and on with prayer requests, please pray for our little family.
Once we get the results of the blood work we had done today, I'll post an update or if we hear anything else.
"I can do all things through Christ who strengthens me." Philippians 4:13
"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.'
xoxo,
Hillary
The first major feature, optic nerve hypoplasia, is the underdevelopment of the optic nerves, which carry visual information from the eyes to the brain. In affected individuals, the optic nerves are abnormally small and make fewer connections than usual between the eyes and the brain. As a result, people with optic nerve hypoplasia have impaired vision in one or both eyes. For Lily it's only the Left Optic Nerve and again we wont know anything about how her vision has been affected until we see the neurologist. Optic nerve hypoplasia can also be associated with unusual side-to-side eye movements (nystagmus) and other eye abnormalities.
This is the part that does not seem to part of Lily's diagnosis, this is the very scary part so read it with caution. Lily is very developmentally on target and her development has not been a concern to any of the doctors this far and that say she is developmentally "bright". The second characteristic feature of septo-optic dysplasia is the abnormal development of structures separating the right and left halves of the brain. These structures include the corpus callosum, which is a band of tissue that connects the two halves of the brain, and the septum pellucidum, which separates the fluid-filled spaces called ventricles in the brain. In the early stages of brain development, these structures may form abnormally or fail to develop at all. Depending on which structures are affected, abnormal brain development can lead to intellectual disability and other neurological problems.
This is part of Lily's diagnosis. We have been referred to an Endocrinologist and we saw him this morning. The hormones most concerning right now are her thyroid levels, growth hormone and blood sugar. It is too early to tell how some of the other hormones your body releases will function until she is a little older. He will follow us until she reaches puberty and check all of her hormones and watch them closely. He does not seem deeply concerned because Lily's outward appearncce does not signify hormone deficincies. It is however a concern that because she was in the NICU for several days after being born and was treated for hypoglycemia with an IV glucose medication(which according to Dr. Thornton is a classic sign of hypopituitarism but may be related to stress of labor for 28 hours) and also had low thyroid levels when she was a few weeks old there might be some deficiencies, all of this has stabilized on its own and we'll wait for the blood results for a more definitive answer. The third major feature of this disorder is pituitary hypoplasia. The pituitary is a gland at the base of the brain that produces several hormones. These hormones help control growth, reproduction, and other critical body functions. Underdevelopment of the pituitary can lead to a shortage (deficiency) of many essential hormones. Most commonly, pituitary hypoplasia causes growth hormone deficiency, which results in slow growth and unusually short stature. Lily is in the 50-75% percentile for height and weight and is trending in growth appropriately but he will see how she continues to progress throughout the next several years. Severe cases cause panhypopituitarism, a condition in which the pituitary produces no hormones. Panhypopituitarism is associated with slow growth, low blood sugar (hypoglycemia), genital abnormalities, and problems with sexual development (obviously we can't tell anything about this yet).
The signs and symptoms of septo-optic dysplasia can vary significantly. Some researchers suggest that septo-optic dysplasia should actually be considered a group of related conditions rather than a single disorder. About one-third of people diagnosed with septo-optic dysplasia have all three major features; most affected individuals have two of the major features. In rare cases, septo-optic dysplasia is associated with additional signs and symptoms, including recurrent seizures (epilepsy), delayed development, and abnormal movements.
Treatment, if needed for any hormone deficiencies, will be with medication that will be oral or shots depending on what the deficiency is. We wont know for 2-3 weeks the results of the blood work she had done today.
Septo-optic dysplasia has a reported incidence of 1 in 10,000 newborns. This is the part that I can't seem to grasp. Out of all of the babies born why ours? The only conclusion I can come to is that the Lord knows that Jordan and I can handle this and that we are the perfect parents to take care of and raise a child with this. If he didnt think we were capable he wouldnt have allowed our baby to be one of the 10,000 newborns born with this condition. There seems to me to be a severe side and a mild side to this and at this point Lily appears to be on the mild side which I am eternally grateful for. Please pray for our sweet angel. Pray for her vision in her left eye and that it wont be affected and if it has been that it will improve, pray that her blood levels all come back within normal range, pray for knowledge for Dr. Thornton her endocrinologist and for her neurologist she'll see in May and that they will know how to treat her best, pray for me and Jordan that we can contain our emotions (I have been an emotional basketcase and have cried at just about anything) and that we will come to terms with this diagnosis and allow for God's healing in our hearts and minds and to trust in his continuing promise to take care of us, pray for Lily that this won't affect her in a negative way. We weren't able to get an appointment with a neurologist until May 13 and have been put on the cancellation list, pray we could get in before then. I could go on and on with prayer requests, please pray for our little family.
Once we get the results of the blood work we had done today, I'll post an update or if we hear anything else.
"I can do all things through Christ who strengthens me." Philippians 4:13
"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.'
xoxo,
Hillary
Hillary - I will definately be praying. for little miss lily, and for you too. with all the unknown ahead of you, you are right about one thing: God DID pick YOU to be her mommy. and HE knew this would be part of HIS plan for her life, and for yours. in the midst of such scary stuff, I am believing that He will show you how GOOD He is. He LOVES Lily even more than you do (believe me, I know thats tough to grasp!)!! I will be praying for supernatural healing, for wisdom, for comfort and for peace. I know we havent kept up through the years, but I have known you since you were little...and I want you to know (for what its worth), that Im so proud of you...youve grown into such a beautiful young mama and obviously one that God deems trustworthy of handling all this. His burden is light...let Him carry it for you. Love you girly! praying....
ReplyDeleteHillary and Jordan, we hate that you have to go through this, but you are not alone. First and foremost you have your faith in a powerful God! One that loves you and promises to care for your every need. Lean on Him. We will pray that He gives you wisdom and understanding and that He will guide you through all of the decisions that you will be facing. We will pray that you will rely on Him for your strength and that you will not grow weary. We will pray for healing for Lily in every area of concern. We will pray for wisdom for the team of doctors, nurses, techs etc that will be treating Lily. God is in control. Rely on Him.
ReplyDeleteSecondly, you have your family. You know you can count on anyone of us to be there for you in any way you may need us! Our family is not new to this type of challenge! We are equiped with our own faith in God and we know how to "plug into" all that God offers and promises us. This family is a unit. When we combine our efforts and our faith we can move mountains!
Thirdly, you have numerous friends that will rally behind you. Let God use them to minister to you as well.
Finally, we will pray for peace. A peace that surpasses all understanding. A peace that will enable you to relax both mentally and physically. A peace that will allow you to nestle in the arms of your Loving Father without a worry of what is to come because He is with you always. Stacy and I love you dearly!
Praying for you, Jordan, and for sweet Lily... I can't imagine how you must be feeling in the midst of so much uncertainty, but I know that our God IS good and that He DOES good! Praying that you cling to Him more tightly and surrender your daughter to the One who loves her more deeply and perfectly than you could every imagine!
ReplyDeleteHillary, I can only imagine what you and your family are going through. You and your family are in our prayers. I know God has Lily in his hands and will take care of her!
ReplyDeleteHi Hillary,
ReplyDeleteOur 2mo. old daughter, Josie was just recently diagnosed with ONH and SOD. We too are struggling to come to terms with this news and understand what this diagnosis means for our little one. My email address is mindy.hull@hotmail.com I would love to correspond with you and learn more about Lily's progress. We believe that Josie also has a mild case of this condition as she appears in every other aspect to be a happy healthy baby girl. There is so little information out there on this condition and it would be great to connect with another family dealing with this as well. We are in Oklahoma. I hope to hear from you :)