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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