Have you ever heard of such a thing? Either had I until recently...
We noticed right after little L was born that he wasn't opening his left eye as much as his right. Our midwife said that was normal and it was just probably from the birth. A couple of weeks went by and when our doctor saw it she didn't seem concerned but referred us to an eye specialist just to be sure.
When we went, the specialist ran a couple of tests and then came to the conclusion that he has congenital (inborn) Horner's Syndrome. The droopy eyelid is one of the symptoms of it. He really didn't go into details about what it is and honestly, I am still utterly clueless about it. But from my reading 'Horner syndrome isn't a disease itself. Rather, it's a sign of another medical problem — such as a stroke, tumor or spinal cord injury — that damages the nerves to your face. There's no specific treatment for Horner syndrome. Instead, treatment is directed at the underlying cause, when possible.'
The doctor told us that a tumor could be the cause of it so he wanted to get an MRI done to see if that is the case. Can I just say that the word tumor is not something you say to an emotional new mama?!
I felt so small, helpless and downright petty for going into that appointment being concerned about little things like his droopy eyelid and how it would effect him growing up. Even though he was born with this I instantly felt guilty and as if I was to blame. I am so very grateful for my Mom and K's wise teachers for helping me past that so I could fully be there for him and mentally prepare myself for what lies ahead.
I am still trying to understand it all, it's a whole lot to take in, so please forgive my thoughts being all over the place in this post and my lack of details.
In the meantime, L goes in for an MRI tomorrow to see if it is a tumor. It's an all day ordeal. My little guy will be sedated for this and they expect him not to nurse for four house before his arrival time (plus another two hours on top of that before his scan time). That's a lot to ask of a one month old baby, in my opinion.
It will be a long day for all of us but I pray answers will come from it. One thing I do know for certain is that we will always be there for him and he will be one strong little guy in the end because of all of this.
85 comments:
Six hours is a VERY long time for a one month old, poor guy. :( I'm praying and sending positive thoughts your way today, Nicole! Your little boy is so sweet and strong. I'm sure he will come through just fine.
I have had scares with both my girls. The MRI isn't as bad as you think it will be, and the not nursing is way harder and more uncomfortable for you.
Earlier this year we had a brain tumor scare with my youngest, the scariest part is the waiting outside for the results, and trying to imagine how you will explain this to the small people in your life. We do not have a tumor, "just" migraines at age three. And life is going on. There is strength and beauty in the darkest corners, I'll send a little blessing light to yours. Your in my thoughts.
I'll be praying for you Mama (and Daddy!) and your little Lucian! Oh and from experience of having to avoid nursing a very tiny one for several hours... sometimes it helps if Daddy (or other loved family member) holds him if he starts to get really hungry, they don't smell so much like yummy mommy milk!
Sending your family love and healing, healing blessngs from Adelaide, Australia.
x
Oh goodness. Sending you (and your family) strength and love.
Oh Nicole, my stomach dropped reading this. Hugs to you and your precious boy during this ordeal. Sending love and light to you all.
May the beautiful grace of God be with your family, I am thoughtfully praying for your little one and you. Not nursing would be super tough, but your love will transend him!
Good luck!
~Samantha
I'm sorry you are all going through this. Prayers for your family!
Oh Nicole, sending you peace and love and strength!!!!
Dear Nicole, I am holding you and wee L in my warm thoughts today. I can not possibly imagine how it must feel, so I will just say that I am sending you love, light, peace and hope today.
This is one of the things we have learned about in school this year, but they never told us about an infant being diagnosed with it. If you want some more information you can google Horners Syndrome and SPAM, or PAM, these are acronyms medical students use to learn the symptoms associated with this syndrome. Hope they figure out what caused it!
I hope you were ablel to get a little sleep last night and I will keep you all in my prayers today.
Love, Tonya
We will keep you in our prayers! Don't forget that God will be with him the whole time. With love
You are in my prayers. I hope that this time will pass quickly for you and it will turn out to be not a big deal. May God Bless you and your little one. Let us know what happens.
Sending love your way:)
xo
Linda
I'll be praying for you. There is a really great lecture online on Christian Science Healing. It's practical and it works. Your little boy is never, never outside of God's care.
http://christianscience.com/lectures/lecture-video/the-who-why-and-how-of-raising-kids-and-christian-science/
Much love,
what a difficult thing! prayers, for sure. My oldest had to get an MRI when she was about 6 months & sedating her was completely unbearable for me...but, she pulled through just fine. just surround yourself with loved ones! and know that you're his comfort.
i am sending you so much love, sweet mama! you are very strong and i know you can do this. this sweet little child chose you to shepherd him through this life for a reason. xoxoxo, rae
Loads of love to you and your family...sending you abundant strength to get through it all.
xoxoxo maureen
Holding good thoughts for you and your family at this time.
Cheryl
What a tough day you have ahead of you! I'm saying a prayer for you and your sweet baby!
my heart goes out o you.
Babette
Dear Nicole, I will be thinking of you all, sending wishes for health and strength.
I can't remember if I ever told you the story of when Chessa was just 6 weeks old, we went to our midwife visit, discovered an odd little bruise and just hours later where in the hospital having blood tests done checking for various cancers, an MRI, all kinds of surreal things! The story gets longer and scarier from there, but in the end all was well.
So I do understand what you are going through!
Oh my dear sweet wonderful mama friend, you are strong, and so is Lucian.
Love to you all!
Sending love, strength, and healing thoughts your way.
We will keep you and Lucien in our prayers today and tomorrow.
praying the outcome is manageable. My little guy was born with a droopy eye too, no body ever mentioned anything about it, but now I wonder if there could be a reason for it, although it has gotten better over his last 2 years of life.
Prayers for your little guy and your family. I hope tomorrow goes well.
actually i thought from reading your words that it sounds like you have a well of strength within you and that you will get through this gracefully. and look at lucien's sweet smile in the last picture! may all the angels surround him during his procedure and you while you wait. i pray for good news. all will be well.
Abundant prayers and blessings to your family, especially your little babe.
Nicole,
My thoughts and prayers are with you and your family.
Kristine
I've said a prayer for all of you. And I will be thinking of you. I hope you can draw strength from the knowledge that you have so many people who care for you, sending positive energy to you today.
oh sweetie!!! my heart and prayers go out to you all. i know it's so scary but i'm holding out for the best possible outcome for little L. I love you guys so much and am always thinking about you...let me know if you need anything or just need to call and talk while waiting on everything...
512-704-3877
xoxoxoxox
cat
What a tough thing for you all. My thoughts are with you and the family.
Thinking of you and your family and sending lots of love and virtual hugs.
I just found your blog yesterday - searching for felted egg instructions - and really like it and now today I see this... My family recently went through testing and surgery and a month of hospitalization with our baby - his problems started at three weeks - and it is so very hard - you just don't know until you're there - not nursing for way too long and putting your trust in others when every part of you knows that you should protect your baby but you don't know how. I had so much support - even from strangers - and I have to believe that so many positive thoughts and prayers helped my boy. All of us are supposedly sharing energy and your boy is getting so much love and light from you and everyone who knows you and everyone who reads about him. He's beautiful.
my sweet friend,
my heart aches for you.
This must be difficult for you, but you are one of the strongest and most steadfast mothers I have ever "met" :) It is obvious that you do everything out of love and reverence. I truly believe that children chose their parents. L has chosen you, and for good reason.
I have struggled with my son's physical "differences", (http://bendingbirches2010.blogspot.com/2011/02/kissed-by-angelpart-ii.html) and I hope you don't mind the comparison. This experience is never easy, but you learn so, so, so much about yourself as a parent and woman.
Sending you so many hugs and prayers. Please contact me if you ever, ever need anything!!!!
love,
rebecca
Oh my! I'm so sorry to hear this- but hopefully the underlying cause will turn out to be something "minimal" that can be fairly easily taken care of! Lots of love to you all as you wait to find out.
I am reminded of another blog I check in on...
http://www.sowabisabi.com/2011/01/my-boy-mystic.html
Thinking positive thoughts for you boy and of course for his Mama as well
Sending love and light to you and your family! How scary, and emotional.
Loving you and holding you all in the light. What a strong and brave mama you are.
Deep peace and let me know how I can best offer support.
Love dear friend,
Hillary
will be thinking of your family tomorrow and praying for good news
-stacy
Dear Nicole,
You and your son are in my prayers. Your son has chosen well to be with you, in your loving and capable care. La Leche League website has an article that suggests it is possible to reduce pre-op fasting in breastfed infants to 3 hours. http://www.llli.org/faq/anesthesia.html But if there is not time to discuss this with your heathcare provider, its best to go with trust and confidence that they are going to do their best, and as your son and you are still very much ONE, all strength to you as you radiate calm and trust.
Love, Carol (South Africa)
let there be light! <3 <3 <3
Sending you and your family strength and courage of a lion. Thinking about you!
I am sending lots of love & positive thoughts to you and your family.
My heart is with you all - watching your child undergo medical procedures is gut wrenching. Sending positive and healing thoughts your way.
Nicole, if you need to talk, please shoot me an email! I can tell you, though, that Lucian will be just fine through the fasting and the MRI. All of this is much, much harder on us mamas than our baby boys. Sigh. Despite three general anesthesia procedures in the first three weeks of his life (one of which was open heart surgery!) L. is doing so well - happy and smiling just like a typical 5 week-old. Sending my love to you.
i am sending you and your dear little one LOVE and LIGHT, my sweet friend! know that you are both strong and surrounded by the uplifting and positive energy of this beautiful online community - we are all holding you and your dear family close in our thoughts! rest and take comfort in knowing that all will be just as it should be!
In my prayers and believing for it to be nothing more than a droopy eyelid!
Isn't he beautiful??
What stress for you and your family! I hope everything goes smoothly tomorrow.
Many prayers and warm thoughts to you and your family at this difficult moment. Be confident and all will go well for your beautiful baby. Love from all of us
oh nicole! how scary!!
thinking of you and little lucian. you must be so worried. positive thoughts that all will be well.
Sending you prayers and positive thoughts!
Dear Nicole,
What a beautiful baby...so Pure and Sweet and Lovely. I am struck by your reality right now. How so very challenging, particularly when he is so fresh and your hormones are so deep and raw and sensitive! I do know this feeling you may be having. In January, I took my 2 year old to the hospital for what i thought may be a simple issue and it turned into a diagnosis of Type 1 Diabetes. My family of 5 (a 5 year old and my 6 month old as well) all stayed in the hospital for nearly 2 weeks. It has been a challenging, painful, scary road, but we are walking it together and learning so much about ourselves and each other. I tell you this because you are not alone. This really helped me through some challenging times. There are so many mamas out here holding space for you and loving that little precious baby of yours, sending good good good energy. My heart is holding you with care tonight. Peace for you and yours,
xo Jules
It's hard - no matter what it is, when things aren't how they 'should be'. Sending you best wishes for things being resolved with a positive outcome
xo
Kristy from Au
I am sending my prayers your way. love, Beth
I will keep you and your beautiful family in my thoughts and prayers. Sending you hugs.
My prayers are with you and your family xo
Nicole, My niece was born with a droopy eyelid, and I've emailed her mom to see if the dr's called it the same thing. I know it was nerve/muscle related, because she'd only open it every time she swallowed during nursing. I'll send you whatever info my SIL sends me, but please don't spend too much time looking stuff up on the internet-- you'll scare yourself silly with lots of stuff you don't need to worry about right now!! Sending you lots of Light and Love..
What a difficult thing for a mamma to go through. Hang in there. Positive thoughts heading your way.
I have always had a drooping eyelid...when I was 7 I was diagnosed with Marcus Gunn Syndrome...same deal sign of trauma at birth or a genetic issue. Since then I have met a couple of moms that have children with it (after not meeting anyone with it for 25 years) and I always tell them one thing "somehow I made it through with it, just let your child know about it, and prepare them for life with it." As I was not told about it until I was 5 by a peer. Oh well, Good luck with the MRI, Love him and all will go well.
Your son was born on my birthday. I also live in Portland and am considering PWS for my daughter as well (she'll be 2 in July).
I'm so sorry to learn about this new bump in the road for your family and wanted to let you know that you are in my thoughts.
Praying for you and your little one for the very best outcome. It hurts us as mother's so deeply when things are unknown regarding our babies. Blessings to you all.
oh mama, my thoughts are with your family. BIG HUGS.
Nicole, I've heard back from my SIL, she said what her dd has is called Marcus Gunn Jaw Winking, it's a misdirected signal from the brain.. She's 7 now, and just got glasses to keep attention away from the droopiness, but it hasn't affected her at all. Sending you lots of positive thoughts, for sweet Lucien, and for you all!!
Have been praying for your little one and wishing him health and blessings.
Oh Nicole, I am sorry that you all have to go through this! I am praying for your family and your little guy.
Sending you hugs and prayers!
Blessings,
Maggie
What a beautiful, sweet-looking little boy, all the more cute looking, of course, swathed in handknits.
I had a good friend in college with a droopy eyelid. I think she only mentioned it once or maybe twice. It didn't interfere with her sight, and, as for her appearance, she was never without some boys chasing her:)
Hope all of your news is good!
Oh, Nicole, how scary. Lucian is beautiful and I will keep all of you in my thoughts today and forward, as you unravel this together.
Warmly, Nicola
I wish all the best to you and your family and also my prayer from so far away (Austria) will be with you and you wonderful little guy. Thinking of you and your wonderful family. maria
Sending positive love and blessings your way...
Oh, praying for baby L, you, and all your family! It is so scary when something -- anything -- goes wrong for our children. I know this from experience. Much love to you. xoxox
Sending you lots of good thoughts!
I hope you had good news from the MRI. Wishing you the very best.
That's a lot to ask of either of you! My heart goes out to you and your family, praying that you will find simple answers and peace about this!
Much light and love for you and your family!
Thinking of you and your family during this time, we went through a scary time with our then on month old number three. It was so difficult to face the unknown. Sending blessings and light to you precious little one.
I send you a lot of love, strength and faith!
Sending you and your family lots of love. Ask Lucian's angel for help too, always!
Luciana x
Oh, what a scary time.
I'm hoping that you have the results by now and that they were all good xx
i wish you strength and peace in such a difficult time. may it surround you and lift you up. blessings, christine
Hello!
I just stumbled upon your blog by Googling Horner's Syndrome Images and saw your sweet little boy's picture and clicked on it.
Why did I do this?
Because he looks like our little boy who was just diagnosed with it too... and I'm trying to learn all I can.
The eye doctor just wrote orders for an MRI with sedation for our 7 month old and we need to wait 1-1/2 months for an appt... ARGH! Not all hospitals do this, as you well know... so we're hoping we can get in sooner.
I didn't see a follow-up to your blog, but I will look again. I really want to know how your little one is doing and if they found a cause. Our doctor told us the majority of cases the cause is unknown... AND... in most cases it's simply cosmetic.
I urge you to check YouTube as there is a very good video showing ptosis surgery (speeded up) which is something we'd consider before he goes into 1st grade.
I wish you and your son all the best and will be reading your blog to see how you guys make out!
Eric
Hello Nicole. Our son is 6 months old and was just diagnosed with Horner's Syndrome. We have recently had the MRI and there were no signs of nerve damage, tumors, or neuroblastoma. Our pediactric opthamologist did not explain much about Horner's and we are still unsure what caused Horner's in our son. We continue to look for information online, but there is not a whole lot out there. Can you please provide an update on how your son is doing and any additional information that you have on Horner's Syndrome?
I know I'm quite late on this, but my daughter was also born with Horners Syndrome. I worried that it would affect her and her self esteem as she got older because it was so noticeable and i didn't want her to feel uncomfortable with herself. She's 5 now, and it has improved drastically on it's own. Unless she's really tired, you really can't tell. The pupil in the effected eye is quite a bit smaller and the iris slightly lighter in color than the other, but other than that you can barely tell. From what all of her doctors and specialists have told me, there's no serious need for concern..I just look at it as a unique characteristic that makes her her. I hope you guys made out well and that handsome little man is healthy and happy!! :)
Anonymous - You are in the same spot we are. We still do not know very much. He has had follow up appointments were they still barely tell us anything and just leave us with more unanswered questions. But the good news is that he is thriving and his droopy eyelid is becoming less and less obvious as he grows.
Sending hugs and support your way!!!
Does anyone know if heterochromia is progressive due to horners syndrome. I amputated my arm 2 years ago as a result of a car accident. I had complete evulsion of my entire bracheplexus. They say that is the root of my horners syndrome. Will my eye continue to change color and lighten from brown to green?
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