I haven’t really mentioned it but about 2 weeks ago Hayden started crossing his eyes. At first I didn’t think it was too big of a deal. He was just doing it while he ate and brought a spoon close to his face or was drinking his sippy cup. I figured he was just being funny.
Then he started crossing both eyes.
I called the pediatrician on Monday and got a referral to a Children’s Hospital in St. Louis. They couldn’t see him until March 10th! I agreed to it but when I hung up, I thought, That’s too long to wait. {Note: Google is not good when you have a child that is sick. Not good at all.} Heath and I Googled lots of things. My Mom Googled lots of things. We read lots of bad things.
I called St. Louis Children’s Hospital in St. Louis on Monday. I explained what was going on and they were amazing.
Parents Magazine named St. Louis Children’s Hospital as one of the 10 Best Hospitals in America. US News named SLCH as one of 8 Elite Hospitals in 2010.
They got us in TODAY. The same week. It takes months to get into their Eye Center. We got in the SAME week. I think someone is looking out for my little guy. By yesterday he was crossing both eyes bad. So I was glad we got in.
This morning I woke my little guy up at 8. We were out the door at 8:50 and at the hospital at 9:20. The waiting room was a lot of fun with toys, fish and KIDS! Lots and lots of kids running around. We were called in and they dilated Hayden’s eyes. We then had to wait 40 minutes so we went and grabbed breakfast in the cafeteria.
After 40 minutes we saw the 1st doctor. He checked Hayden’s eyes and said he had a severe case of crossing. He did a bunch of covering his eyes and looking in his eyes with lights while Hayden looked past him and watched the movie Cars. After that he sent us back out to the waiting room. More waiting.
Then we were called back to see Dr. Lueder.
He was recognized as one of the “Best Doctors in America” in St. Louis Magazine.
Dr. Lueder was amazing. He was so patient with Hayden. He thoroughly checked him out. He then told us the diagnosis which was Strabismus.
Strabismus, a misalignment of the eyes, is one of the most common eye problems in children, affecting approximately 4 percent of children under the age of 6 years. The eyes (one or both) may turn inward, outward, turn up, or turn down. At times, more than one of these conditions are present. Strabismus is also called “wandering eye” or “crossed-eyes.”
He gave us two options.
He said with children under 2 he usually recommends surgery (in Hayden’s case since his are so bad). With children over 4 he recommends glasses. Hayden will be three in just a couple weeks. He falls right in behind. We asked lots of questions. Lots. He was so patient with us.
Glasses: Hayden is a toddler. He hates sunglasses and hats. He doesn’t like anything on his head. With toddlers it is hard to keep glasses on. Most children come in the next month with broken glasses or refusal to wear them. They also are not guaranteed to actually fix the cross eyed and most likely would have to wear them forever.
Surgery: With surgery they go in and they tighten the muscles. The surgery takes 45 minutes and he will be away from us for an hour and a half. There are risks of course with the highest being a second surgery because they overcompensated and tightened them too much.
I felt a little on the spot because the doctor wanted us to decide then. We asked more questions. We asked what most parents of 3 year olds and toddlers choose. He told us that they honestly choose surgery.Then Heath asked him what HE would do if he was in our shoes and Dr. Lueder told us he would choose surgery if it was his child. That sold us.
We told him our family’s health history. I told him about my Dad. My Dad was born with a Brain Aneurysm and it ruptured when he was 20. It can be hereditary. I have been check out. With that information and the information that it came on suddenly he has decided to do a Brain MRI to rule out that nothing else is going on. We asked WHY this can happen all of a sudden. When I Googled (BAD!) it said that most children are born with it. Hayden definitely was not.
He asked if Hayden had been sick recently. You all know he was. He had a 103 fever right after Christmas along with the stomach flu. The doctor said that in some cases crossed eyes can be brought on by high fevers. Basically the brain tells the eye muscles to relax. The brain gives the wrong signal. So we are going to do the MRI to rule out anything more serious.
After seeing the doctor Hayden got TWO stickers (Buzz and Woody!) and a sucker. Then we went to the consult room. We had a nurse explain about the MRI. It takes 45 minutes. They will sedate him. We can’t be with him. He has to get a physical before to check out his lungs and heart. I couldn’t help but cry a little bit. Part of me doesn’t want me to see him sedated. Part of me wants to scream and demand to be in there with him. Another nurse came in to set up the surgery. She was patient with us and explained everything to us again. She answered all our questions. I cried again.
The surgery takes 45 minutes. They take him back and they sedate him. They then put an IV in him. Then the surgery. I won’t tell you how they do the surgery. They told us how to do the surgery and I also Googled (BAD!) and I’m glad I know what they are doing but I don’t like it.
After surgery–he will be away from us for an hour and a half–when he wakes up they will take us in the recovery room. We are told to bring DVDs because we will be in there for about 3 hours until he is ready to go. Recovery is supposed to be rapid. They don’t even give pain medicine. They are supposed to take it easy for a week–yeah right, he’s a toddler–and he will have bloodshot eyes. He will also get eye drops that are antibiotics and steroids.
Can I tell you how scared I am?
Terrified.
My heart is pounding and sometimes my breath is taken away thinking about it. I know there are so many parents are out there dealing with so much worse. The nurse even said we were lucky that Hayden is such a healthy child. I can’t help the way that I feel. I second guess the surgery. It helps that everyone I have talked to says they would choose the surgery. I second guess the Brain MRI. Does he need it? Better safe than sorry.
I am reassured by friends and family today. They have been awesome. I am reassured that I am at one of the Best Hospitals in America. My Aunt, who has been taking my cousin to the same Eye Center for 10 years now told me that God is definitely looking out for Hayden.
To get an appointment in 4 days when it takes months?
To see this awesome team of doctors who were so thorough with him?
He’s definitely being taken care of.
If any of you have advice or know someone that has been through this, send them our way! Heath and I welcome being able to chat with anyone!
* I shared the facts about SLCH because it makes me feel better! 😉
Hungrigyrl says
Sounds like you are in the best of medical care!! I know its scary, but its very reassuring to know the doctor would do the same thing. Sounds like a good call to go with the guaranteed way to fix it, then make him miserable with glasses he probably won't want to wear. Hugs to you and your family.
rachel... says
I think you're making the right choices and I'm sure Hayden will be fine. But I can only imagine how terrified you'd be – I would be, too. Please update on Hayden's recovery! Good luck!
Jamie Bishop says
No advice, but I'm praying for you. It is very scary, but I know that if you decide to do the surgery, God will take care of your precious little boy, and bring you comfort while you.
Tara says
I am so sorry! Although, glad it's something that can be fixed. Doesn't make it any less scary though 🙁
Carrie with Children says
I think you are definitely doing the right thing. It sounds like you've found a fantastic hopsital and doctor! I'm sure Hayden will be fine. I've spent a ton of time at doctor's appointments with my Molly and I know how scary those moments are that you experienced today. Big hugs to you, Heath and Hayden! <3
AprilW says
I agree that you are doing the right thing. Of course you are nervous and scared but he is in God's hands. Thinking of you!
Xenia says
Oh, Mama. I have to tell you that I had to stop reading your post a few times because I was getting too worried about what you might say… and I'm so glad that you're getting such wonderful care for Hayden, that really is the most important thing.
I have zero experience with Strabismus (and have never heard of it) but I'm familiar with having to make the same decision. My older daughter had a random fluke internal medical issue when she was born and at 4 months old we were presented with pretty much the same thing: surgery or wait it out to see. We asked the surgeon the exact same question (what would YOU do if this was your daughter?) and he said surgery.
You're right that it's hard. Very hard. And very stressful. Walking away from your baby when you just want to be there to hold them is heartbreaking for any mom. But in the end, even though it's scary, you're doing what's best and Hayden will most likely never remember a single minute of all of this – so it's much better to do it now than to push it off until later.
You know where to find me if you need to chat, but for now I'm sending you a big, big hug!
Carly says
Can't imagine what your going through, anytime our babies have anything wrong it's scary. But it sounds like you are at an amazing facility with great doctors. I totally agree with the decision to do the surgery. I can't imagine trying to keep glasses on a toddler. I'll be praying for you guys.
Carly
Lolo @ Crazy About My Baybah says
Poor little Hayden. Such a hard decision, but I think you are doing the right thing. It sounds like you found a great dr. and hospital to take care of Hayden. Please know that I am praying for you guys, and am here if you need to talk. Give Hayden a big hug from us, and I want to give you a big hug from me.
Tabitha says
My friend is going through something similar with her son! He had a fever virus and ran a high fever. About a week later he started crossing his eyes! She took him to children's and ran tests and said it was most likely caused by the fever virus. She's following up with an ophthalmologist this week. She hasn't said anything about surgery, but he's four, so it might not be an option for them right now.
How weird, I've never heard of fevers causing eye problems before…and then, twice in one week!
I know how you feel though, when I took my son for his one year checkup, the pediatrician (who was not our normal dr. but another in the practice) said he heard a heart murmur (!!!) I asked what that meant but honestly couldn't understand the answer – not because he wasn't explaining it well, but because, hello, his heart?? You say "heart murmur" to a mom and she's going to mentally black out for a minute!
Then he starts talking about cardiologists and EKGs and what? We had to wait 2 weeks (maybe 3?) for his appointment. Fortunately, everything checked out FINE. Apparently, there are many reasons for a heart murmur – some of them serious, some of them nothing and some of them in between – his was nothing.
But GEEZ! Talk about a heart attack (for me) in the process!!
The Blue Zoo says
Wow. That is crazy! So glad you got him right in to the Dr!!
I hope the surgery goes just fine. try not to be too scared. (Yea, right. Im sure you will be a mess!, but just try to not be.)
Good luck!
Jennifer Kay says
Thankfully you got in now and not two months from now, I would have been the same way, give me an appointment or I'll go somewhere else! How scary…I can only imagine how you feel.
Good luck Hayden!
Gina says
For what it's worth, I think you're making the right decision. In this case I would choose surgery too. Everything will be fine – Hayden will be in my prayers!
MomAgain@40 says
This is a tough one! Glad you got help so soon, and that you have a plan of action! Thumbs crossed!
Poor little guy!
Marissa says
such a tough decision for parents to make. Glad he is in the BEST hands possible when it comes to the doctors making those decisions and guiding you. Thinking of you and your husband and know you two will make the BEST decision possible for your precious little boy.
MSLibLady says
I'll be thinking about your little guy!
Amy @ mommetime says
My daughter had the eye surgery for Strabismus, in June of 2009. Her surgery was a success. I am so grateful we chose surgery but like you said it was a difficult decision to make. I agonized over it and was in such fear of the unknown but it was the right (not easy) decision for my daughter. Sending prayers and best wishes your way…
hands on : as we grow says
Phhhph… I'm so sorry you have to deal with this. Before you know it, it'll be over, you'll have your healthy little boy back and this will just be a dated milestone to you – with no actual physical remembrance. My son had a surgery when he was 5 months old – and I remember having every single one of the same feelings you did. It made it really hard for me to sort out my feelings because our cousin has had major open heart surgery many times and she's the same age as my boy – but still, a surgery is a surgery – and your boy is your boy. I will definitely be thinking about you during your MRI today and during the surgery in the next couple weeks. Don't second guess yourself. You're a great mom for everything that you've already done. Sending love your way 🙂
T @ The Happy Clipper says
He is in great hands at Children's. They are wonderful! Good luck with the surgery!
Wendy says
I have no advice, but I am praying for you and your family. I pray that God gives you the strength you need to get through this and that He takes care of your baby. I am praying that God grants the doctors the ability to provide Hayden with the absolute best care.
You have done everything right as a parent. Don't second guess that. You are so strong and level headed in this situation. You have sought out the best care in the fastest manner. You have done your research even when it scared you. You've looked at all of the options and picked the one you (and the doctors) feel is best for your situation. All you can do at this point is pray and turn the situation over to God.
Jean at Typical Suburban Family says
We have been living this EXACT same scenario for the last year and a half. Our youngest started crossing his eyes and we took him to the pediatrician, got a referral and our whirlwind began just as yours is. We did MRIs to rule out brain tumors, etc. We waited, worried and prayed. Everything came back fine. We did eye patching and tracking. We then scheduled surgery. The surgery was not successful (bummer!) and we tried glasses. We just finished our second surgery and hoping it was successful. I'd love to chat with you more about the whole process and what to expect, etc. Let me know if you want to. I know EXACTLY what you are going through.
cloud10277 says
I was born with Strabismus. My eyes turning in was affecting how I was learning to walk so my parents choose surgery when I was about 1 1/2. I don't remember anything about it but I can tell you I'm now 30 years old and haven't had any other serious issues with my eyes. I do wear glasses. I don't know if that has anything to do with the Strabismus or genetics. My son who is now 2 1/2 was born a preemie (28 wks) so I know how scary it is to see things being done to your child that you can't control. I'll be thinking about you guys. Keep us updated.
KLZ says
Oh, Melissa! I can't even imagine. But what a good mom you are too be such a great advocate for his health.
You're all in my hearts and prayers. Big hugs.
Brandi Elam says
I'd be scared too. Both my kids had to have MRI's under sedation last year after I was diagnosed with an AVM in my brain and after my 4 year old niece died from an AVM in her brain rupturing (an AVM is kind of like a brain aneurysm). I hated putting them through it but better safe than sorry…you are doing the right thing by checking. I have no experience with the eye situation, but it sounds like you are in the best of hands, have made the right decisions, and that Hayden will be well taken care of. Good for you getting him checked out so quickly – that was very wise. Always trust your mommy instincts.
Mama K says
I would be scared too, but so glad there is a solution! And that you were able to get seen so quickly!
My little man had to get surgery when he was 9 months old. He had to be put to sleep and it was awful…for me! He did have pain meds in the hospital in recovery and slept most of that first day. The next day he was back to normal…so recovery really was quick!
I hope everything works out well.. Saying a prayer for y'all!
Heather says
Praying for you and your family! Just keep strong – it's quite clear that he's guardian angel is keeping watch. 🙂
Katie says
I think you are making the right decision. Making a decision like that is never easy, but never doubt yourself. It sounds like you are in good hands with the Hospital and Doctors. My Son had to have surgery at 11 months old. It was for a cyst that was growing (rapidly) above his left eye. We were faced with either having the surgery or waiting it out and removing is when he was older. We decided to go ahead and have it removed before it got any bigger and started effecting his eye sight. It is a very difficult thing to see such a young child have to have surgery, but it the long run it is worth. The hardest part is the waiting. Make sure to bring lots of things to keep your mind occupied. You will be amazed at how fast kids jump back to normal. I know the day after my sons surgery, he had a huge, swollen black eye but was acting like it was just a normal day! I wish you and your family the best of luck and lots of prayers!
Randi says
I understand how you're feeling. My daughter was born with ptosis (her left eye didn't open very much) and osteogenesis imperfecta (brittle bones). She needed to have eye surgery, but we had to wait until she was older due to her being high risk. It was AWFUL the things that people would say to us in public. I would cry about the comments that were made, and eventually she started to notice. About that time she was beginning to notice also. Luckily this is when she had her surgery. I was terrified! Absolutly terrified! We came in early in the morning and she was given some liquid medicine that made her a little loopy (it was a little funny cause she kept saying "Mommy I feel fuuuuunny, my head issss soooo heeeavy". Surgery lasted about 2 hours and then we were reunited. No one told me that sometimes people have adverse reactions to the meds, not like breathing trouble but her attitude was insane. She is my calm one, she generally goes with the flow, is pretty quiet and overall is a well behaved child. Holy Cow! The nurse actually came out and got me because they couldn't calm her down. She was kicking and screaming, scratching and pulling at her eyes and IV's. I was totally freaked out. Finally we ended up giving her a mild sedative to calm her down. I'm not telling you this to scare you, but rather to inform you. No one told me that she might behave that way, and I didn't understand what was going on. We were told to use Tylenol or Advil to help with pain, and use her eye antibiotic ointment for 7 days. I can tell you that it's such a relief to hear her say to me that she's happy I made her have the surgery since now people don't make fun of her eyes. You're doing the right thing! Trust your Mommy instincts and trust in your Lord. He will guide you through this. You're in our thoughts! PS don't forget some snacks with your Movies and don't forget to dress him in something like feetie jammas – or button up jammies, nothing that goes over his head.
Walking in His Grace says
Oh I didn't know this was going on! I'm so sorry! I'm definitely going to be praying for Hayden and for you all as well. I know this has to be rough for you. 🙁
Amanda says
Oh my honey! I was just playing a bit of catch up on your blog and wow!
You have a LOT on your plate! You just take it day by day, and remember that you are doing everything you can for your little boy and he is SOO lucky to have you as his mama.
I am saying some prayers for your and your family that everything goes well with the surgery and MRI.
Emily - faliLV says
Melissa,
You are such an amazing mother. You didn't just let the top hospital tell you they couldn't get him in – you called back and got him in. Yes God is watching over you both, but he is also given you the strength to be the best advocate for your son.
You are doing a wonderful job. I would too opt for the surgery. I will continue to keep you all in my prayers. HUGS!!
Living on Love and Cents says
I am praying daily for your sweet boy and you! he will be ok. And he has the absolute best mom ever! He feeds off of your emotions so let him feel your confidence and optimism. He is young and active and he WILL bounce right back. But I can tell you I was crying just reading this. I remember feeling just like you when my daughter had her surgeries. And when she started having seizures and I wanted to know WHY!! And right NOW! As a mom you can't help but be scared and wish you could have the surgery for him. Or kiss and make it all better. ****BIG HUG*** Remeber to call/test/email anything anytime!
Lilac City Momma says
How scary! Im glad you (and they) caught it early though! I will be praying for him, but I know he will be fine and it will go by quickly!!
Erica K says
Hugs to all three of you. I can't imagine what you're going through. it's so hard to see them go through these types of things. it will be better for him in the long run. It's like seeing them scream after a shot. You hate seeing them hurt but you know it's better for them.
I will be praying for you guys on Feb 9th. Please keep me updated on the MRI dates.
TheAngelForever says
Just catching up on my Google Reader after having a sick kiddo here. First of all, hugs coming to you. I think you are such an amazing Mama for making sure you took your son to the best. He sounds like a fabulous doctor that is going to take care of your little guy. I think we all learn the hard way to stay far away from Google when we have health problems.
Becca says
I'm so sorry he has to go through this, and that you do too. Big huge hugs mama!
Josh & Calendi Svihula says
I'm sorry you guys are going through a scary point in your life. I can't imagine. I am glad that your son is in good hands however. I will keep you, Hayden and your family in my prayers. Praying for a quick, successful recovery!
Chara Lynn says
I am following you from Monday hops. Hope you can stop by, follow, and become a loyal reader.
Blog looks great!
Stay Fabulous
Chara
http://www.nothingbutfabulousity.com
Melissa says
I was born with Strabismus and was diagnosed at 6 months by an ophthalmologist. I had surgery at 1 yr, 2 yrs and 16 yrs. I starting walking very soon after my first surgery. I also wore glasses and did patching. I have never thought twice about having surgery, even as a teen when I had some input. If it were my child, I would choose surgery. I obviously don't remember my first two surgeries, but I do remember the last. It was out-patient, I don't remember being in pain, but my eye was completely red bloodshot for a bit. I do remember it being hard to open my eye for the first time after surgery.
I'll be praying for both of you!
LeeAnn says
Oh wow! I am so sorry that you are going through this. I know how you feel, and it is absolutely horrible to worry about your child like you are having to do.
You are awesome for calling the hospital and getting him in as quickly as you did! It sounds like Hayden will be at a great hospital with a great surgeon. I definitely think you made the right decision to go with the surgery, and I would have done the same thing. I don’t do well with the whole “watch and wait” thing.
As far as the MRI…I would have made the same decision with that, too. You will feel better knowing exactly what is going on, and you can never be too careful.
You guys will be in my thoughts. I’ll be checking back regularly to find out how everything is going. I know this may sound so cliche, but hang in there. I know how hard it is to be strong for your child when you are so scared, but somehow we manage to do it.
Sippy Cup Mom says
Thanks so much LeeAnn, that means a lot! It really helps to hear that other people would choose surgery! 😉