Jack was recently selected to be a 'Little Ambassador' for the Children's Eye Foundation. They work hard to make sure that all kids have access to early eye exams to prevent blindness and long term vision deficiencies. Jack could have suffered from a lot more than just contact lenses if his cataracts hadn't been found when they did, so we are happy to have him representing such a wonderful organization!
Check out Jack's Story!
Monday, December 20, 2010
Saturday, November 20, 2010
A reflection on the past 5 months...
As I prepare to go back to work, I am filled with a thousand different emotions. I am a completely different person than I was 5 months ago, and not just because I had a baby. David and I had everything thrown at us since the day he was born...from high bilirubin levels that kept us going back to the hospital for a couple of weeks after he was born, to enlarged kidney scares, to the whole reason I wrote this blog. 5 months ago, I would have been hesitant to call a doctor knowing she was in surgery. I wouldn't have spent hours wasted on the phone with the insurance company to make sure a certain test was covered. I laid down at every rude and incompetent front dest medical staff member until I had Jack. Now we know, we are his biggest advocate and you bet we'll do what we have to.
The first three months of his life were all about figuring out how to get back to normal with an infant. We had just gotten into a groove and the cataracts hit. Part of me feels a bit jipped - that the majority of my maternity leave was spent on the phone, in a doctor's office or hospital, or stuck in traffic on our way there. But most of all, I feel completely blessed to have had these last 5 months at home. I learned a lot about myself, after being "screwed and tattooed" as my mom puts it. I went from being absolutely terrified to leave the house, to toting Jack anywhere and everywhere. I got to meet a wonderful group of moms (who I actually blame for making going back to work so hard - I didn't think maternity leave would be that fun!).
So here I go, back to work. It will be nice to be somewhere where I get to use my brain and my talents, and hang out with people who are older than one, but it breaks my heart to leave Jack. He is going to a wonderful daycare center, where they love him already.
The blog entries will slow down...for many reasons. One is that hopefully there will not be much to report on Jack's eyes. He's done with eyedrops, and we have been getting the contacts in and out pretty successfully. His opthamologist couldn't have been happier with his progress at his checkup on Wednesday. The other reason is that I am a teacher, and let's be honest, there just won't be time! Thank you to everyone who has been keeping up with Jack's Journey. At the opthamologist on Wednesday, I met the mother of a 9 week old who had just gotten the diagnosis of an eye problem for her little one. It broke my heart to see her so heartbroken, because that was us only 2 short months ago. It is AMAZING to see how far we have come! I hope that this blog will continue to be shared and help moms like that, because we are living proof that you do survive this.
I'll leave you with a picture of my little angel - contacts and all!
The first three months of his life were all about figuring out how to get back to normal with an infant. We had just gotten into a groove and the cataracts hit. Part of me feels a bit jipped - that the majority of my maternity leave was spent on the phone, in a doctor's office or hospital, or stuck in traffic on our way there. But most of all, I feel completely blessed to have had these last 5 months at home. I learned a lot about myself, after being "screwed and tattooed" as my mom puts it. I went from being absolutely terrified to leave the house, to toting Jack anywhere and everywhere. I got to meet a wonderful group of moms (who I actually blame for making going back to work so hard - I didn't think maternity leave would be that fun!).
So here I go, back to work. It will be nice to be somewhere where I get to use my brain and my talents, and hang out with people who are older than one, but it breaks my heart to leave Jack. He is going to a wonderful daycare center, where they love him already.
The blog entries will slow down...for many reasons. One is that hopefully there will not be much to report on Jack's eyes. He's done with eyedrops, and we have been getting the contacts in and out pretty successfully. His opthamologist couldn't have been happier with his progress at his checkup on Wednesday. The other reason is that I am a teacher, and let's be honest, there just won't be time! Thank you to everyone who has been keeping up with Jack's Journey. At the opthamologist on Wednesday, I met the mother of a 9 week old who had just gotten the diagnosis of an eye problem for her little one. It broke my heart to see her so heartbroken, because that was us only 2 short months ago. It is AMAZING to see how far we have come! I hope that this blog will continue to be shared and help moms like that, because we are living proof that you do survive this.
Monday, November 1, 2010
This is worth blogging about!
Just last night, David said he was thinking to himself that I wouldn't have much to blog about anymore. After all, between the 3-4 days when we have to change Jack's contacts, life feels almost "normal." Well, that didn't last long!
We got Jack's contacts in this morning with not too much drama. Jack and I got dressed and headed out to Mommy Bootcamp. When we got home, I did my routine every-couple-of-hours check, and lo and behold, I couldn't see a contact in his left eye. I triple checked before texting David because I knew that was not a text he would be excited to get. Put it this way, these are not your run of the mill 1-800-CONTACTS kind of deal. These are special made, get one at a time, and a pair costs as much as daycare for a week. I retraced our steps about 12 times, including inspecting every inch of Jack and I's clothing. I checked the car, the carseat, I even checked to make sure it wasn't stuck to Rocky.
Now, you may remember a few posts ago, the opthamologist lost the contact way up in his eye, so praying that's where it was, I called her office. She told me to come in so she could check, but of course today was her day in Arlington. We left an hour early because the traffic said 66 was backed up, and of course it took us 20 minutes to get there. Jack had fallen asleep so I stopped and picked up some lunch and got there about 20 til 1. Their office closes for lunch (actually, the entire hospital seems to close for lunch...don't go to Virginia Hospital Center for an emergency between 12 and 1!) so Jack and I just walked around. By this time, I had taken out his other contact and put his glasses on him so he'd be even, so we got about a zillion oos and ahs over the glasses.
Now, I know they were doing me a favor and squeezing me in, but we waited for an hour and 10 minutes to see the doctor! It is very hard to keep a 4 month old happy for that long. Jack got to see his buddy (hey, it had been almost 2 weeks!) and then she wasn't his buddy anymore. Two different sized speculums and the contact was nowhere to be found...sigh.
I returned home, defeated, but I had this slight thought in the car that I had forgotten I had put Jack in his bouncy seat for about 30 seconds while I had gone to the bathroom earlier. As soon as I got home, I looked in the bouncy chair, and there sat the missing contact lens!
Since this is a supersonic lens, it is actually not ruined....it just needs to soak for a day or so. And since this is this particular lenses 3rd escape, they are ordering a different fit, at no cost - just an exchange. So for now, we are back in the glasses.
We are both exhausted. Jack was asleep by 7:30 if that's any indication, and I am not far behind him!
We got Jack's contacts in this morning with not too much drama. Jack and I got dressed and headed out to Mommy Bootcamp. When we got home, I did my routine every-couple-of-hours check, and lo and behold, I couldn't see a contact in his left eye. I triple checked before texting David because I knew that was not a text he would be excited to get. Put it this way, these are not your run of the mill 1-800-CONTACTS kind of deal. These are special made, get one at a time, and a pair costs as much as daycare for a week. I retraced our steps about 12 times, including inspecting every inch of Jack and I's clothing. I checked the car, the carseat, I even checked to make sure it wasn't stuck to Rocky.
Now, you may remember a few posts ago, the opthamologist lost the contact way up in his eye, so praying that's where it was, I called her office. She told me to come in so she could check, but of course today was her day in Arlington. We left an hour early because the traffic said 66 was backed up, and of course it took us 20 minutes to get there. Jack had fallen asleep so I stopped and picked up some lunch and got there about 20 til 1. Their office closes for lunch (actually, the entire hospital seems to close for lunch...don't go to Virginia Hospital Center for an emergency between 12 and 1!) so Jack and I just walked around. By this time, I had taken out his other contact and put his glasses on him so he'd be even, so we got about a zillion oos and ahs over the glasses.
Now, I know they were doing me a favor and squeezing me in, but we waited for an hour and 10 minutes to see the doctor! It is very hard to keep a 4 month old happy for that long. Jack got to see his buddy (hey, it had been almost 2 weeks!) and then she wasn't his buddy anymore. Two different sized speculums and the contact was nowhere to be found...sigh.
I returned home, defeated, but I had this slight thought in the car that I had forgotten I had put Jack in his bouncy seat for about 30 seconds while I had gone to the bathroom earlier. As soon as I got home, I looked in the bouncy chair, and there sat the missing contact lens!
Since this is a supersonic lens, it is actually not ruined....it just needs to soak for a day or so. And since this is this particular lenses 3rd escape, they are ordering a different fit, at no cost - just an exchange. So for now, we are back in the glasses.
We are both exhausted. Jack was asleep by 7:30 if that's any indication, and I am not far behind him!
Wednesday, October 27, 2010
They're in!
To date, we have successfully removed and put the contacts back in by ourselves TWICE.
Jack has successfully removed his own contact lens once. Yikes. Hopefully, that was a fluke. He was on his playmat and I happened to catch him rubbing his eye. I leaned down to stop him and there was the contact sitting on his nose. That's one expensive toy he has found!
Getting the contacts out is a million times easier than getting them in, which is the total opposite of what we expected. I now know why God gave me such tiny hands. Jack is actually a willing participant when it comes to taking them out, but getting them in is tricky. It does help to catch him in a good mood. We've tried it while he's eating, playing on his mat, or right when he wakes up and seems the most cooperative. I do have faith that he will get used to it - it's already twice as easy to get them out.
Jack has successfully removed his own contact lens once. Yikes. Hopefully, that was a fluke. He was on his playmat and I happened to catch him rubbing his eye. I leaned down to stop him and there was the contact sitting on his nose. That's one expensive toy he has found!
Getting the contacts out is a million times easier than getting them in, which is the total opposite of what we expected. I now know why God gave me such tiny hands. Jack is actually a willing participant when it comes to taking them out, but getting them in is tricky. It does help to catch him in a good mood. We've tried it while he's eating, playing on his mat, or right when he wakes up and seems the most cooperative. I do have faith that he will get used to it - it's already twice as easy to get them out.
Wednesday, October 20, 2010
Contacts...oh MY!
It is incredibly difficult to keep glasses on a 4 month old.
It is a ZILLION times harder to put contacts in their eyes. Wow! When we first found out about the cataracts, Jack was only 10 weeks old. He didn't have head control and was pretty laid back. In the 6 weeks since, he's gained muscle, weight, head control, and the ability to squirm out of any situation.
We went to get his contacts put in today. They are a better option - he can lay awake at night with them and they are a stronger prescription. It took me, a nurse, the doctor and a bottle. He screamed down the house. The left one went in with no problem but the right one went in and went missing. We looked all over the floor before the doctor decided it must be lost in his eye. After some numbing drops, a speculum to hold his eye open (gag) and a Qtip, she was able to slide it into place.
After all this commotion, I started to doubt our ability to do it on our own and asked her where she lived and if there were houses for sale in her neighborhood. I think she thought I was kidding. Of course, she and her husband are both extremely successful doctors, so she probably had a good chuckle when I left that I ever thought I could live in her neighborhood!
Anyways, all is well. The contacts are in and we have our little boy back. What a difference it makes to be able to sit and play with him and not wasting time moving the silly glasses. We are very nervous to try it on our own this weekend, but will definitely post with the story of that endeavor!
It is a ZILLION times harder to put contacts in their eyes. Wow! When we first found out about the cataracts, Jack was only 10 weeks old. He didn't have head control and was pretty laid back. In the 6 weeks since, he's gained muscle, weight, head control, and the ability to squirm out of any situation.
We went to get his contacts put in today. They are a better option - he can lay awake at night with them and they are a stronger prescription. It took me, a nurse, the doctor and a bottle. He screamed down the house. The left one went in with no problem but the right one went in and went missing. We looked all over the floor before the doctor decided it must be lost in his eye. After some numbing drops, a speculum to hold his eye open (gag) and a Qtip, she was able to slide it into place.
After all this commotion, I started to doubt our ability to do it on our own and asked her where she lived and if there were houses for sale in her neighborhood. I think she thought I was kidding. Of course, she and her husband are both extremely successful doctors, so she probably had a good chuckle when I left that I ever thought I could live in her neighborhood!
Anyways, all is well. The contacts are in and we have our little boy back. What a difference it makes to be able to sit and play with him and not wasting time moving the silly glasses. We are very nervous to try it on our own this weekend, but will definitely post with the story of that endeavor!
Monday, October 18, 2010
A little bump in the road
On the Thursday after Jack's second surgery, we noticed a strange red dot on his eyeball. We called the doctor and she didn't seem too concerned. It was more than likely just a bruise from where she gave him an injection. She told us to watch it and if it got worse to call her back.
Well, the next morning, it had moved. It looked like it was headed towards his cornea so we gave her a call. It was her surgery day, so luckily she picked up. She told us we had to be there by 9:00am (it was 8 and Jack and I were still lying in bed!) We all got dressed and jumped in the car. Unfortunately, the hospital where she was is on the other side of town, and of course there was an accident on the main highway we needed to take in order to get there.
We pulled up at 8:59, David pulled up and I grabbed Jack out of his carseat and ran inside. The Arlington office is not a pediatric office...more like a geriatric office. The clientele was an average of 80 years old. Needless to say, we got a lot of funny looks, especially since our 4 month old had his big blue glasses on. The best part was when one of the doctors saw us and all of the receptionists started whispering - they didn't realize why we were there and thought we were in the wrong place since neither of the pediatric doctors were technically in the office that day. LOL. I love when you can hear people stressing over you!
The doctor came in with one of the residents, so she was using all this medical jargon. She told him how Jack's eyes are much bigger than typical infants his age and asked him how big they were supposed to be. I knew the answer, and he got it wrong! Does that show you how much time I've spent with the pediatric opthamologist over the past 5 weeks?
Anyways, it was indeed just a bruise and it will probably last a couple of weeks. Nothing to worry about and Jack continues to heal! We start with both contact lenses on Wednesday - getting those in should be a blast!
Well, the next morning, it had moved. It looked like it was headed towards his cornea so we gave her a call. It was her surgery day, so luckily she picked up. She told us we had to be there by 9:00am (it was 8 and Jack and I were still lying in bed!) We all got dressed and jumped in the car. Unfortunately, the hospital where she was is on the other side of town, and of course there was an accident on the main highway we needed to take in order to get there.
We pulled up at 8:59, David pulled up and I grabbed Jack out of his carseat and ran inside. The Arlington office is not a pediatric office...more like a geriatric office. The clientele was an average of 80 years old. Needless to say, we got a lot of funny looks, especially since our 4 month old had his big blue glasses on. The best part was when one of the doctors saw us and all of the receptionists started whispering - they didn't realize why we were there and thought we were in the wrong place since neither of the pediatric doctors were technically in the office that day. LOL. I love when you can hear people stressing over you!
The doctor came in with one of the residents, so she was using all this medical jargon. She told him how Jack's eyes are much bigger than typical infants his age and asked him how big they were supposed to be. I knew the answer, and he got it wrong! Does that show you how much time I've spent with the pediatric opthamologist over the past 5 weeks?
Anyways, it was indeed just a bruise and it will probably last a couple of weeks. Nothing to worry about and Jack continues to heal! We start with both contact lenses on Wednesday - getting those in should be a blast!
Wednesday, October 13, 2010
The Glasses
I am pleased to update that Jack is healing like a superstar from his second surgery. The doctor thinks this one is healing even faster than the first one. He's also learned a lot more, like how to avoid eyedrops and squiggle away from the doctor.
I wrote in an earlier post that we were none too excited about Jack having to wear glasses. We still have the option to choose glasses or contacts, but he has to wear the glasses for now until the right eye is completely healed. I was fully prepared for the stares and questions - if I saw a 3 month old wearing glasses, I would probably take a second glance as well. I'll be honest - he looks adorable. If he were some random kid on the street, I would think he looked pretty cute with the glasses. What we are struggling with is that he doesn't look like Jack. Because the prescription is so strong, they make his eyes look extremely large. They are also a royal pain in the butt. Baby noses were not designed to hold glasses up. Every time he moves his head, they get knocked around, and he's discovered they make a great teether.
Needless to say, we're going with contacts as soon as possible. I think it will be better. I feel so bad taking the glasses off even to clean them, because I know I've just taken his vision away.
We have gone out a couple of times with the glasses. We do get a few stares. I got lots of questions from parents at the opthamologist, but I didn't mind that because their kids all have glasses too. Mostly, people are curious what would cause a 3 month old to need glasses. I hear a lot of little kids saying, "Mommy, that baby has glasses."
What I was not prepared for is probably the most hurtful - people actually think I have these glasses on Jack because I think they look cute. They truly believe that I am accessorizing my child. We got Jack's ChildFind ID done a couple of weeks ago, and on his form I indicated that he needed glasses or contacts at all times. The police officers doing it actually chuckled and whispered to each other because they figured I meant I was the one that needed glasses or contacts, and they didn't even include it on his ID.
The hard part is over. Surgeries are done and we can go back to living our new version of "normal" lives. I'll say it again - this kid is 13 pounds of pure hero! Here are a couple of pictures of him with the new glasses...
I wrote in an earlier post that we were none too excited about Jack having to wear glasses. We still have the option to choose glasses or contacts, but he has to wear the glasses for now until the right eye is completely healed. I was fully prepared for the stares and questions - if I saw a 3 month old wearing glasses, I would probably take a second glance as well. I'll be honest - he looks adorable. If he were some random kid on the street, I would think he looked pretty cute with the glasses. What we are struggling with is that he doesn't look like Jack. Because the prescription is so strong, they make his eyes look extremely large. They are also a royal pain in the butt. Baby noses were not designed to hold glasses up. Every time he moves his head, they get knocked around, and he's discovered they make a great teether.
Needless to say, we're going with contacts as soon as possible. I think it will be better. I feel so bad taking the glasses off even to clean them, because I know I've just taken his vision away.
We have gone out a couple of times with the glasses. We do get a few stares. I got lots of questions from parents at the opthamologist, but I didn't mind that because their kids all have glasses too. Mostly, people are curious what would cause a 3 month old to need glasses. I hear a lot of little kids saying, "Mommy, that baby has glasses."
What I was not prepared for is probably the most hurtful - people actually think I have these glasses on Jack because I think they look cute. They truly believe that I am accessorizing my child. We got Jack's ChildFind ID done a couple of weeks ago, and on his form I indicated that he needed glasses or contacts at all times. The police officers doing it actually chuckled and whispered to each other because they figured I meant I was the one that needed glasses or contacts, and they didn't even include it on his ID.
The hard part is over. Surgeries are done and we can go back to living our new version of "normal" lives. I'll say it again - this kid is 13 pounds of pure hero! Here are a couple of pictures of him with the new glasses...
Saturday, October 9, 2010
Wait, weren't we just here!?
I write this during the first shift of night duty. Jack has become even more tactile since the last surgery, so now he can not only get the patch off, he’s learned to do it quietly. Therefore, David and I have to take shifts overnight to be sure the patch stays on. The good news is that this time around, he’ll get it off for good tomorrow and we can use the glasses as a barrier. Astonishingly enough, we were able to get him to sleep at a reasonable bedtime. We’ll see how this goes…
This kid is 13 pounds of pure hero. The surgery was later this time (9am) so we were worried about him wanting to eat, but we were able to sneak him here still asleep and in his jammies again. He barely made a fuss during the whole pre-op stuff. David and I were much better prepared this time. We were blessed to have the same pre-op nurse and anesthesiologist. Last time, the surgery took about an hour, so today when an hour had passed and no one came out, we started to panic. We went back into his pre-op room to wait and still heard nothing. After what I think was the longest 15 minutes of my life, the doctor came out and said everything went fine. After the second longest 15 minutes of my life, they finally brought us back to recovery, where my little guy was not happy. I fed him right away and he went back to sleep until we got to the peds ward.
Although we are bored out of our minds being stuck here, Jack did have trouble getting rid of some of the anesthesia gases this time and was wheezy for awhile, so we were glad to be around nurses and doctors who could assure us he was fine. After a few bouts of fussiness and crying, he got rid of it all and is doing just fine. I cannot say enough good things about the staff here. My only complaint is that they have Facebook blocked on their server!
David, Jack and I cannot begin to thank our family, friends, friends of family and friends of friends for keeping us in your thoughts and prayers over the past couple of weeks. There is a young couple in the room next to us who are here because their newborn has jaundice, and David and I had to laugh when we thought about the time when jaundice was our biggest worry (you know, a whole 15 weeks ago.) We are a strong little family!
We will continue to update the blog with information about Jack’s progress. He will wear his glasses for this week and then we will decide if we are brave enough to try the contacts. He’ll have to wear one or the other until he is about 5 years old, when we’ll be asking for your prayers again as we head back here for two more surgeries to put in the permanent lens – then he will be done with glasses and contacts!
Jack will be the 80 year old man driving all of his friends to the hospital to have their cataracts removed. We hope he gets the last laugh.
Jack will be the 80 year old man driving all of his friends to the hospital to have their cataracts removed. We hope he gets the last laugh.
"It could be worse."
Ahhh, we've heard this a lot.
Trust us, we know it could be much worse. We learned that after spending the day at Children's Hospital. You don't go to Children's Hospital to get a flu shot. You go there because you are seeking top notch medical care for your child. We saw what "much worse" looks like, and I will keep those children and their families in my prayers for life.
However, we are not quite ready to see the glass as "could be much worse" full yet. We're still looking at it as "could be much better" full. But, boy, have we come a long way in 3 1/2 weeks. We've gone through every emotion, from devastation to excitement at the thought of the surgery, simply because we knew what a difference it would make for Jack. I aim this post more at people who have gone through something similar, and I leave you with a prayer our priest shared with us last week, because I think that David and I will be living by this prayer for a long time to come:
Trust us, we know it could be much worse. We learned that after spending the day at Children's Hospital. You don't go to Children's Hospital to get a flu shot. You go there because you are seeking top notch medical care for your child. We saw what "much worse" looks like, and I will keep those children and their families in my prayers for life.
However, we are not quite ready to see the glass as "could be much worse" full yet. We're still looking at it as "could be much better" full. But, boy, have we come a long way in 3 1/2 weeks. We've gone through every emotion, from devastation to excitement at the thought of the surgery, simply because we knew what a difference it would make for Jack. I aim this post more at people who have gone through something similar, and I leave you with a prayer our priest shared with us last week, because I think that David and I will be living by this prayer for a long time to come:
God grant me the serenity
to accept the things I cannot change;
the courage to change the things I can;
and the wisdom to know the difference.
to accept the things I cannot change;
the courage to change the things I can;
and the wisdom to know the difference.
Monday, October 4, 2010
What is a cataract?
WOW! The blog has had a great response. Thank you everyone! Whether you're reading it for information or you're just curious or you're relating, I hope it's meaningful.
As I talk to more and more people, I realize that I have not really explained the technical aspect of what is going on. I thought I should address that here. A cataract is a cloud that forms on the lens of your eye. They are very typical in older people, and everyone will develop them at some time in their lives (if we live that long!) In the typical surgery for adults, the lens is removed and a permanent replacement is implanted. The surgery is very routine - they don't even knock you out! - and you leave the hospital with much better vision. It is possible to have cataracts and not even know. They can be very tiny or in a part of your eye where the vision is not impaired.
The surgery in infants is a little bit different because their vision is still developing. They do not want to implant the permanent lens yet because there is a strong chance it would need to be changed in the next few years. Therefore, Jack's lens has been removed and the contact lenses and/or glasses serve as his vision until he is older. When he's around 4 or 5 years old (or old enough to sit still so his eyes can be measured), he will have to undergo two more surgeries to get the permanent lenses put in. After the permanent lenses are in, his vision should be corrected for good.
Considering I do not wear glasses or contacts and was rather grossed out by eyes about 3 and a half weeks ago, I feel like I've learned more about eyes and vision than I ever cared to!
As I talk to more and more people, I realize that I have not really explained the technical aspect of what is going on. I thought I should address that here. A cataract is a cloud that forms on the lens of your eye. They are very typical in older people, and everyone will develop them at some time in their lives (if we live that long!) In the typical surgery for adults, the lens is removed and a permanent replacement is implanted. The surgery is very routine - they don't even knock you out! - and you leave the hospital with much better vision. It is possible to have cataracts and not even know. They can be very tiny or in a part of your eye where the vision is not impaired.
The surgery in infants is a little bit different because their vision is still developing. They do not want to implant the permanent lens yet because there is a strong chance it would need to be changed in the next few years. Therefore, Jack's lens has been removed and the contact lenses and/or glasses serve as his vision until he is older. When he's around 4 or 5 years old (or old enough to sit still so his eyes can be measured), he will have to undergo two more surgeries to get the permanent lenses put in. After the permanent lenses are in, his vision should be corrected for good.
Considering I do not wear glasses or contacts and was rather grossed out by eyes about 3 and a half weeks ago, I feel like I've learned more about eyes and vision than I ever cared to!
Wednesday, September 29, 2010
CatEract or catAract?
Being a LindsAy in a world of LindsEy's, it should not be this difficult for me to spell this word. Now that we've lived with the word for several weeks, I've figured it out, but I imagine that a couple of catEracts have snuck into these posts, and for that, I apologize!
Glasses vs. Contacts
This is a flame-worthy confession, but when I initially found out that Jack would be having surgery that required glasses, I was devastated. Yes, it is totally cosmetic, but let's be honest, there is a serious market out there for tolerable looking baby-glasses. Check out the Miraflex website sometime - ain't a cute pair among them. I was so worried that people would see these goofy plastic goggles and not my beautiful baby boy. I got over it pretty quickly once Jack's vision really started to deteriorate, and knew that it didn't really matter. I'm sure we'll get plenty of stares and ignorant questions. I'm still coming up with intelligent responses.
Anyways, the glasses were taking too long to come in, so the opthamologist ordered a contact lens. She put it in...thank GOD...because I don't know if I could. We went to get it checked out and even she couldn't remove it at the time. Luckily, it can stay in for 7-10 days, and she is more than happy for us to keep coming back for her to do it. Needless to say, we'll be spending a lot more time at her office (as if that were possible.) We've considering finding out where she lives and becoming her neighbor!
Recovery wise - Jack is doing wonderfully. His eye looks fantastic, even though it always has to be dilated, so he's looking a little "tripped out." It would have warmed your heart though to see him a couple of minutes after she put the contact in. He was smiling and laughing like we've never seen before. We're so proud of our little guy!
Anyways, the glasses were taking too long to come in, so the opthamologist ordered a contact lens. She put it in...thank GOD...because I don't know if I could. We went to get it checked out and even she couldn't remove it at the time. Luckily, it can stay in for 7-10 days, and she is more than happy for us to keep coming back for her to do it. Needless to say, we'll be spending a lot more time at her office (as if that were possible.) We've considering finding out where she lives and becoming her neighbor!
Recovery wise - Jack is doing wonderfully. His eye looks fantastic, even though it always has to be dilated, so he's looking a little "tripped out." It would have warmed your heart though to see him a couple of minutes after she put the contact in. He was smiling and laughing like we've never seen before. We're so proud of our little guy!
Monday, September 20, 2010
TGFG...thank goodness for Grandmas!
When Jack was born, we were tired and everything was new, but that didn't hold a candle to being home with him after surgery. He was a 2 person job. From changing diapers, to getting him dressed to the eyedrops, David and I were perfecting our teamwork. My mom stayed for a couple of days when we got home and David's mom came shortly after. It was so nice to have an extra pair of hands to relieve us occasionally. We also needed a cheering squad. He was doing fairly well with the eyedrops, but at night, he was already so tired that he just broke us down. It killed us to see our always happy baby distressed and upset and it made us upset and distressed. From this, we learned that you are never too old to want your mommy!
We want to go hooooome!
Why is it that hospitals are determined to keep you captive? When Jack was born, David and I sat in the room with our bags packed for hours before they finally discharged us. Well, here we were with deja vu. Our doctor came at 7:30, just like she said she would, and checked his eye and showed us how to do the drops. My mom had come to pick us up and hadn't brought breakfast, thinking we'd be able to grab something on the way out. We ended up having to wait so long just to be discharged that we settled from some bagels at the cafeteria. It was bad timing with a shift change in nurses, and the new nurse didn't exaclty have her act together. We were finally discharged closer to 10, and got the heck outta there! We came home and attempted the eyedrops for the first time - Jack has 3 types of eyedrops and an ointment that he gets some combination of 4 times a day. We had to tag team since someone needs to hold him 24/7 to be sure he doesn't claw the patch off. (The doctor couldn't believe it when she saw him doing this. Apparently, kids his age usually don't figure out how.) Mom and I watched him while David got in a good nap. I guess 4 hours of sleep in two days makes you sleepy.
We are extremely sleep deprived, stressed out and have to do it all again in 3 weeks! Here is our little trooper:
We are extremely sleep deprived, stressed out and have to do it all again in 3 weeks! Here is our little trooper:
Day of!
My second biggest fear after my 12 week old being put under was the fact that he couldn't eat for 4 hours before the surgery. (If he had been on formula, he wouldn't have been able to eat after midnight.) If you've met Jack, you know that he is an extremely laid back baby, and the only time he fusses is when he's hungry. I imagined listening to him scream the whole way to the hospital. We woke up at 2 and fed him as much as we could since he had to be done by 3. He went back to sleep and David and I woke up at 4:20 to sneak into the shower and pack the car. Our parents and I were outside and David slipped a sleeping baby into his carseat and into the car. He slept until the nurses woke him up to start putting in his eyedrops. He never screamed for food. It was amazing. He loved the warm blankets they kept putting over him, and eventually ended up falling back asleep in the pre-op room.
The anasthesiologist came in, and I don't know if he saw the tears in my eyes or just knew we were anxious parents, but he immediately began telling us that Jack had a greater risk of getting hurt on the way to the hospital than he did being under anasthesia. It was finally time to go, the grandparents came back and gave Jack a kiss and I had to do the hardest thing I have ever done...I had to hand my child, my LIFE, over to the anasthesiologst. He carried Jack out of the room and David and I just fell into each other's arms. We had been anticipating and dreading this exact moment for the past 9 days, and at this point, we had to let go and trust God and these nurses and doctors.
The surgery took about an hour. At first, we were okay and had some breakfast, but after 30 minutes, we started to get anxious and watching the clock. Finally, our doctor came out and told us the surgery was a success and Jack was in recovery waking up. They'd come get us in a few minutes once the anasthesia had worn off. A few minutes later, she came back and got me. Apparently, Jack was screaming down the house and they wanted me to go back and feed him. I walked in to recovery and immediately had Jack in my arms in a rocking chair. He had a huge patch on his eye and a tube with oxygen blowing on his face. It should have scared the crap out of me, but I was so happy to see him and hear him crying that it didn't bother me one bit. I started to feed him and the nurses and doctors started to filter out of the room. I asked the nurse if David could come back, so they called for him and he joined us. They had given Jack a little bit of morphine for any pain, so he became very sleepy. They put Jack and I in a wheelchair and David went back to the waiting room to get our parents. Jack and I were wheeled to the pediatric ward to our room.
He slept until about 4pm, waking up off and on to eat a little bit. We learned for next time that we need to sleep during this time too, because we were in for a loooooooooooong night. When he woke up around 4, he wasn't too thrilled with the tape and patch over his eye. He fussed until about 9 that night, when he was back to his old self. We sang with him and read books on the bed. It was difficult because he was attached to so many wires that we couldn't go any farther than the bed with him, and every time we moved him, we unhooked a monitor and the nurses alarm started going on. It became very frustrating for both of us. We tried to put him in the hospital bed/crib to sleep, but he was constantly clawing at the patch, so we ended up taking shifts holding him in the bed for the rest of the night. He got some good sleep in our arms, and we got some sleep sitting up. It had been a long 24 hours for everyone.
The anasthesiologist came in, and I don't know if he saw the tears in my eyes or just knew we were anxious parents, but he immediately began telling us that Jack had a greater risk of getting hurt on the way to the hospital than he did being under anasthesia. It was finally time to go, the grandparents came back and gave Jack a kiss and I had to do the hardest thing I have ever done...I had to hand my child, my LIFE, over to the anasthesiologst. He carried Jack out of the room and David and I just fell into each other's arms. We had been anticipating and dreading this exact moment for the past 9 days, and at this point, we had to let go and trust God and these nurses and doctors.
The surgery took about an hour. At first, we were okay and had some breakfast, but after 30 minutes, we started to get anxious and watching the clock. Finally, our doctor came out and told us the surgery was a success and Jack was in recovery waking up. They'd come get us in a few minutes once the anasthesia had worn off. A few minutes later, she came back and got me. Apparently, Jack was screaming down the house and they wanted me to go back and feed him. I walked in to recovery and immediately had Jack in my arms in a rocking chair. He had a huge patch on his eye and a tube with oxygen blowing on his face. It should have scared the crap out of me, but I was so happy to see him and hear him crying that it didn't bother me one bit. I started to feed him and the nurses and doctors started to filter out of the room. I asked the nurse if David could come back, so they called for him and he joined us. They had given Jack a little bit of morphine for any pain, so he became very sleepy. They put Jack and I in a wheelchair and David went back to the waiting room to get our parents. Jack and I were wheeled to the pediatric ward to our room.
He slept until about 4pm, waking up off and on to eat a little bit. We learned for next time that we need to sleep during this time too, because we were in for a loooooooooooong night. When he woke up around 4, he wasn't too thrilled with the tape and patch over his eye. He fussed until about 9 that night, when he was back to his old self. We sang with him and read books on the bed. It was difficult because he was attached to so many wires that we couldn't go any farther than the bed with him, and every time we moved him, we unhooked a monitor and the nurses alarm started going on. It became very frustrating for both of us. We tried to put him in the hospital bed/crib to sleep, but he was constantly clawing at the patch, so we ended up taking shifts holding him in the bed for the rest of the night. He got some good sleep in our arms, and we got some sleep sitting up. It had been a long 24 hours for everyone.
The night before the surgery
You would have thought I had eaten a brick the night before the surgery. I had such an uneasy feeling in my stomach all day. I didn't want to sit down, and ran around the house all day. We were supposed to be packing for Florida that day - not packing for a stay at the hospital. I think I packed more for one night in the hospital than I would have for the beach trip. Even though Jack was only 3 months old, I tried to pack anything that would make him feel more at home. I packed books to read, photos, loveys, blankets, extra clothes, pacifiers...we also slept with the blankets and loveys the week before so that they would smell like home. I don't know if any of these made a difference to Jack, but they sure helped me. My mom and my husband's parents came and made us dinner. There wasn't much they could do to help, but knowing they were there to hold our hands as we held Jack's made things so much easier.
Five Stages of Grief
As a Human Development major (yes, that's a real thing), I remember learning about the five stages of grief. I think we went through all 5 stages in the time between finding out about Jack's cataracts and his first surgery - the longest 9 days of our life.
Stage 1: Denial...for several days, I was expecting a phone call from the doctor saying nevermind, it's not a cataract. I even had a dream that our doctor called us and said that only 3% of children with this needed the surgery (can you tell we had been inundated with statistics?). I even hoped that if I kissed his eye enough, my 'mother's love' would magically make the cataract disappear and we'd be on the Today show with the doctor in disbelief that it had happened.
Stage 2: Anger...it was hard to know who to be angry with. I was angry with myself thinking that I had done something wrong during pregnancy that caused him to have this. I was angry with our chromosomes for mixing funny. I was angry at parents with healthy children, and wondered why this had to happen to ours.
Stage 3: Bargaining...A few days after hearing the news, it started to sink in, and I knew there was nothing I could do. I wished I could do it myself, or go through labor a million times without an epidural, or have a migraine for life in order to take this off of my baby.
Stage 4: Depression...this was a tough one. I hadn't made it through a day without crying. I didn't want to shower or eat or brush my teeth. I just wanted to hold Jack and tell him over and over how sorry I was. I probably would have stayed in this phase forever if it weren't for my wonderful husband, who not only had to worry about Jack, but had to be my shoulder to cry on. I hope for everyone that goes through this that you have a support system like me.
Stage 5: Acceptance...about 2 days before his first surgery, we started to see Jack's frustration. The cateract was big enough to see in the daylight, and unless he was looking at a light, he was very fussy. He would turn his head from side to side as if he were trying to see past the cateract. This is when we realized that we didn't have a choice. He needed this surgery and he needed it quickly.
We went through all of these emotions in the course of a week. We had sooooo much support from family and friends though, and I don't think we could have done it without that. Don't be afraid to tell people what's going on. They want to help, so let them!
Stage 1: Denial...for several days, I was expecting a phone call from the doctor saying nevermind, it's not a cataract. I even had a dream that our doctor called us and said that only 3% of children with this needed the surgery (can you tell we had been inundated with statistics?). I even hoped that if I kissed his eye enough, my 'mother's love' would magically make the cataract disappear and we'd be on the Today show with the doctor in disbelief that it had happened.
Stage 2: Anger...it was hard to know who to be angry with. I was angry with myself thinking that I had done something wrong during pregnancy that caused him to have this. I was angry with our chromosomes for mixing funny. I was angry at parents with healthy children, and wondered why this had to happen to ours.
Stage 3: Bargaining...A few days after hearing the news, it started to sink in, and I knew there was nothing I could do. I wished I could do it myself, or go through labor a million times without an epidural, or have a migraine for life in order to take this off of my baby.
Stage 4: Depression...this was a tough one. I hadn't made it through a day without crying. I didn't want to shower or eat or brush my teeth. I just wanted to hold Jack and tell him over and over how sorry I was. I probably would have stayed in this phase forever if it weren't for my wonderful husband, who not only had to worry about Jack, but had to be my shoulder to cry on. I hope for everyone that goes through this that you have a support system like me.
Stage 5: Acceptance...about 2 days before his first surgery, we started to see Jack's frustration. The cateract was big enough to see in the daylight, and unless he was looking at a light, he was very fussy. He would turn his head from side to side as if he were trying to see past the cateract. This is when we realized that we didn't have a choice. He needed this surgery and he needed it quickly.
We went through all of these emotions in the course of a week. We had sooooo much support from family and friends though, and I don't think we could have done it without that. Don't be afraid to tell people what's going on. They want to help, so let them!
Thursday, September 16, 2010
He has what!?
You spend 9 months worried and thinking about the gazillions of things that could happen to your unborn child. Then he arrives, happy and healthy, and you are immediately consumed with the gazillions of things that could happen to him now that he's on the outside. Not once did infant cateracts cross my mind as one of these potential hazards to my perfect new little human.
Jack hit all of his milestones, even some early. He smiled, watched you, grabbed for things, lifted his head up, and pooped like a champ. Everything was going smoothly and David and I were nothing but elated by this amazing creature we had created. On September 7th, 2010, the three of us piled into the car for the routine 2 month appointment. We didn't even think too much about it when the pediatrician mentioned that she couldn't find a red eye reflex in his left eye and would like us to see a pediatric opthamologist as soon as possible. It wasn't a big deal as we had come to learn that the pediatricians liked to send us to any and all specialty medical doctors.
We scheduled the appointment for the next month, but the pediatrician called on behalf of us and got us in the next day. We started to question the severity because of her insistence. I had a nervous feeling the entire day before the appointment. We went through the appointment - Jack had his eyes dilated, we waited for awhile, and then BAM. The news. Jack has congential cateracts in both eyes. Ok, I'm thinking. Not the end of the world, probably like Lasik, right? We'll schedule it for next month, after our trip to Florida. The pediatric opthamologist, sensing my naivete, politely said, "You're not going on vacation." Starting to sense more and more what a big deal this was, I called David hysterically crying from the lobby. There was no way I could drive home. My baby wasn't even 3 months old, and he would be going in for surgery. I vaguely remembered bits and pieces of the conversation with the doctor...surgery, anasthesia, glasses, contacts. When David arrived, we went back in together and made a little more sense of the situation. He would need surgery immediately. He would wear glasses or contacts until he was old enough to get the permanent lens. 3 out of 10,000 children suffer from this, and there's usually a cause. BAM #2. We had to go to a geneticist the next day to rule out the possibility that Jack was suffering from a much more serious syndrome. That was the worst day of our lives, waiting to hear the news, and when the geneticist almost laughed that everything else about him was so normal, the two of us had such a collective sigh of relief that the hats of everyone in the building blew away.
Next step: Pre-op appointments
Jack hit all of his milestones, even some early. He smiled, watched you, grabbed for things, lifted his head up, and pooped like a champ. Everything was going smoothly and David and I were nothing but elated by this amazing creature we had created. On September 7th, 2010, the three of us piled into the car for the routine 2 month appointment. We didn't even think too much about it when the pediatrician mentioned that she couldn't find a red eye reflex in his left eye and would like us to see a pediatric opthamologist as soon as possible. It wasn't a big deal as we had come to learn that the pediatricians liked to send us to any and all specialty medical doctors.
We scheduled the appointment for the next month, but the pediatrician called on behalf of us and got us in the next day. We started to question the severity because of her insistence. I had a nervous feeling the entire day before the appointment. We went through the appointment - Jack had his eyes dilated, we waited for awhile, and then BAM. The news. Jack has congential cateracts in both eyes. Ok, I'm thinking. Not the end of the world, probably like Lasik, right? We'll schedule it for next month, after our trip to Florida. The pediatric opthamologist, sensing my naivete, politely said, "You're not going on vacation." Starting to sense more and more what a big deal this was, I called David hysterically crying from the lobby. There was no way I could drive home. My baby wasn't even 3 months old, and he would be going in for surgery. I vaguely remembered bits and pieces of the conversation with the doctor...surgery, anasthesia, glasses, contacts. When David arrived, we went back in together and made a little more sense of the situation. He would need surgery immediately. He would wear glasses or contacts until he was old enough to get the permanent lens. 3 out of 10,000 children suffer from this, and there's usually a cause. BAM #2. We had to go to a geneticist the next day to rule out the possibility that Jack was suffering from a much more serious syndrome. That was the worst day of our lives, waiting to hear the news, and when the geneticist almost laughed that everything else about him was so normal, the two of us had such a collective sigh of relief that the hats of everyone in the building blew away.
Next step: Pre-op appointments
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