We brought Emily back to Westchester to have the stitches taken out and ended up leaving there with some discouraging news. Her eye pressure was elevated, which could mean she was developing Glaucoma. The cornea itself looked good, but her doctor wasn't sure if the pressure was elevated as a side effect of the steriod drops she was on, or if it was Glaucoma. So he gave us a prescription for Lumigan to try for a few weeks to see if it helped.
Bottom line...cornea ok, but possibly at the expense of her vision. Glaucoma steals your vision slowly. So even if she can see through a nice clear cornea, the increased pressure causes damage to the optic nerve and you go blind. Not what I wanted to hear.
Wednesday, June 17, 2009
5 Days Post Surgery
5 days since her surgery and all things considered, she was doing great. Her doctor said the cornea looked "excellent"! She was going to have the stitches taken out on March 5th. She was getting antibiotic eye drops 4 times a day and would soon be getting the steriod drops 8 times a day. She seems to be dealing with all of this really well and we are so proud of her.
Giving her the eye drops was one of the most stressful parts of her post op care. Trying to remember what she was given and when was difficult, but we quickly figured out how to give them to her without causing her to get upset. She is such a strong little girl.
Cornea Transplant #1
1/31/08:
Emily had her first eye surgery and she did wonderful! We got to the hospital at 9:00. She was scheduled to go in at 10, but they didn't bring us back into the surgical center until 10:30. After giving her a few antibiotic eye drops, and putting a very fashionable blue hospital gown on, we were able to walk her down to the operating room. I was allowed to go into the room with her and stay while they started the anesthesia. I stood/sat just outside the operating room holding Emily for almost an hour before the doctor was ready to bring her in. Why the hell did you bring us back there then? Jason was outside probably starting to freak out and wonder what was going on, why was it taking me so long to come back to the waiting room. The entire time I was there, I was in tears. It would come and go. I started talking to her to ease my nerves, telling her how much we loved her and that when she woke up we would be there to comfort her. the nurses were great, one kept coming over and giving me tissues. She even sat and talked with me about her condition for a little while, I think she really wanted to know about her and that was comforting. But I was scared to death. They finally were ready and I brought her into the OR. Machines, monitors, lamps and probably 6-8 people filled the room. I knew she was in good hands, but a 3 month old baby shouldn't be in there to begin with. This is not how she was supposed to start her life.... but that's where we were and there was no other option for her. I laid her down and the nurse put the mask over her to allow her to breathe in the anesthesia. She was asleep in seconds. I tearfully kissed her goodbye and whispered I love you in her ear...then sobbed as I walked out of the OR doors, leaving her alone in such a scary place. I didn't know what to do with myself... I didn't want to leave her side. Jason and I hugged as soon as I walked out and took off my bunny suit (big white jumpsuit I had to wear) and we both cried holding each other in the middle of the hospital hallway. I didn't care who was around me, my emotions were so high and I felt helpless. The surgery started at about 11:30 and took just over 2 hours. The only thing that got us through those 2 hours was food and mindless stuff on the waiting room TV.
After it was over, her doctor said the surgery went very well and she did great. His exact words were "bring her back in the morning and we'll take the eye patch off, and then she can start to see". Those words hit us really hard...she was finally going to be able to start learning how to see, and her entire world was about to change. Wow, what an emotional moment that was for us. After 3 months of waiting, worrying and wondering, our little girl was about to begin seeing the world. There really are no words that can describe how wonderful that made me feel. A few minutes later we were allowed to go back into the recovery room to be with her. She had a patch over her eye, but it didn't seem to bother her at all. Because of her age, she needed to stay in the recovery area for 6 hours for observation, so we were there for what seemed like forever. She was such a good baby, only crying when she needed to be changed or was hungry. Even the nurses couldn't believe how quiet she was and said they'd never had a baby seem so content after surgery before. We finally left the hospital just after 7pm and got home at about 8:30. We went to bed almost right away since we had to get up first thing in the morning to go back to the hospital. We couldn't wait to see what her new eye was going to look like, and were so excited for her to really be able to "see" for the first time.
We returned to the hospital at about 8:00 the next morning and after a short wait in the waiting room, we were finally allowed to take the patch off. Yes, mommy cried...again. I was so emotional, just waiting to see what hew new eye looked like. How would her brain react to having the patch taken off? What would she be able to see? Would she know she was looking at Mommy and Daddy? It was amazing, and honestly trying to put into words how I felt at that moment is nearly impossible. Her doctor was very happy with how little swelling she had and was impressed that she was opening her eye so much since typically babies don't open their eyes very much on the first day. He gave us a few prescriptions for some antibiotic and steroid eye drops and ointment. She will have to get 1 drop of each one in her eye 4 times a day. As the healing process continues, the frequency of drops will increase. She will need to be seen twice a week for the first month so that the condition of the eye can be monitored and in about 5-6 weeks she will have the stitches taken out. 
The swelling had continued to go down as the day went on and she had been keeping her eyes open alot more. She was doing great and we were excited for her!
One thing we noticed alot more since the surgery was that her eyes sometimes aren't moving together or looking in the same direction. (lazy eye) That would hopefully get better as her eyes learn how to focus on objects and her eye muscles get stronger. During the week following her surgery she was scheduled for an evaluation from the early intervention team. They would evaluate her and if she qualified, they will set up a program for her that is tailored to her visual and developmental needs. The road we have in front of us appears to be a long one, but we're just putting one foot in front of the other and trying not to look to far ahead. Hopefully we won't hit many bumps and at the end our little Emily will have 2 healthy eyes and the best eyesight possible.
Emily had her first eye surgery and she did wonderful! We got to the hospital at 9:00. She was scheduled to go in at 10, but they didn't bring us back into the surgical center until 10:30. After giving her a few antibiotic eye drops, and putting a very fashionable blue hospital gown on, we were able to walk her down to the operating room. I was allowed to go into the room with her and stay while they started the anesthesia. I stood/sat just outside the operating room holding Emily for almost an hour before the doctor was ready to bring her in. Why the hell did you bring us back there then? Jason was outside probably starting to freak out and wonder what was going on, why was it taking me so long to come back to the waiting room. The entire time I was there, I was in tears. It would come and go. I started talking to her to ease my nerves, telling her how much we loved her and that when she woke up we would be there to comfort her. the nurses were great, one kept coming over and giving me tissues. She even sat and talked with me about her condition for a little while, I think she really wanted to know about her and that was comforting. But I was scared to death. They finally were ready and I brought her into the OR. Machines, monitors, lamps and probably 6-8 people filled the room. I knew she was in good hands, but a 3 month old baby shouldn't be in there to begin with. This is not how she was supposed to start her life.... but that's where we were and there was no other option for her. I laid her down and the nurse put the mask over her to allow her to breathe in the anesthesia. She was asleep in seconds. I tearfully kissed her goodbye and whispered I love you in her ear...then sobbed as I walked out of the OR doors, leaving her alone in such a scary place. I didn't know what to do with myself... I didn't want to leave her side. Jason and I hugged as soon as I walked out and took off my bunny suit (big white jumpsuit I had to wear) and we both cried holding each other in the middle of the hospital hallway. I didn't care who was around me, my emotions were so high and I felt helpless. The surgery started at about 11:30 and took just over 2 hours. The only thing that got us through those 2 hours was food and mindless stuff on the waiting room TV.
After it was over, her doctor said the surgery went very well and she did great. His exact words were "bring her back in the morning and we'll take the eye patch off, and then she can start to see". Those words hit us really hard...she was finally going to be able to start learning how to see, and her entire world was about to change. Wow, what an emotional moment that was for us. After 3 months of waiting, worrying and wondering, our little girl was about to begin seeing the world. There really are no words that can describe how wonderful that made me feel. A few minutes later we were allowed to go back into the recovery room to be with her. She had a patch over her eye, but it didn't seem to bother her at all. Because of her age, she needed to stay in the recovery area for 6 hours for observation, so we were there for what seemed like forever. She was such a good baby, only crying when she needed to be changed or was hungry. Even the nurses couldn't believe how quiet she was and said they'd never had a baby seem so content after surgery before. We finally left the hospital just after 7pm and got home at about 8:30. We went to bed almost right away since we had to get up first thing in the morning to go back to the hospital. We couldn't wait to see what her new eye was going to look like, and were so excited for her to really be able to "see" for the first time.
We returned to the hospital at about 8:00 the next morning and after a short wait in the waiting room, we were finally allowed to take the patch off. Yes, mommy cried...again. I was so emotional, just waiting to see what hew new eye looked like. How would her brain react to having the patch taken off? What would she be able to see? Would she know she was looking at Mommy and Daddy? It was amazing, and honestly trying to put into words how I felt at that moment is nearly impossible. Her doctor was very happy with how little swelling she had and was impressed that she was opening her eye so much since typically babies don't open their eyes very much on the first day. He gave us a few prescriptions for some antibiotic and steroid eye drops and ointment. She will have to get 1 drop of each one in her eye 4 times a day. As the healing process continues, the frequency of drops will increase. She will need to be seen twice a week for the first month so that the condition of the eye can be monitored and in about 5-6 weeks she will have the stitches taken out.
The swelling had continued to go down as the day went on and she had been keeping her eyes open alot more. She was doing great and we were excited for her!
One thing we noticed alot more since the surgery was that her eyes sometimes aren't moving together or looking in the same direction. (lazy eye) That would hopefully get better as her eyes learn how to focus on objects and her eye muscles get stronger. During the week following her surgery she was scheduled for an evaluation from the early intervention team. They would evaluate her and if she qualified, they will set up a program for her that is tailored to her visual and developmental needs. The road we have in front of us appears to be a long one, but we're just putting one foot in front of the other and trying not to look to far ahead. Hopefully we won't hit many bumps and at the end our little Emily will have 2 healthy eyes and the best eyesight possible.
The Evil That Is Pink Eye...
Seriously? Pink Eye? Not once, but twicewithin the 3 weeks before the transplant. Emily's surgery had to be postponed because obviously if there is any sign of infection, she can't go through with it.
We have no idea where it came from, but now I was super sensitive to everyone that was by her. Were they sick, did they wash their hands. What did she touch? Where is the Lysol?
Evil you are pink eye! Pure evil.
We have no idea where it came from, but now I was super sensitive to everyone that was by her. Were they sick, did they wash their hands. What did she touch? Where is the Lysol?
Evil you are pink eye! Pure evil.
Emily's First Christmas
Emily's first Christmas was nice...everyone seemed to be just going about their normal life. I tried to do the same. But it broke my heart when I realized that she might not ever be able to see the beautiful twinkling lights on our Christmas tree, or know what Santa or a Reindeer looks like. She won't even know what a fat man in a red suit looks like because she has no idea what the color red is. Pretty wrapping paper wouldn't matter, except to those who are watching her open a gift or want to take a picture for their own memory. The prospect of Emily being blind hit me really hard over the holidays. She wouldn't know how beautiful snow looks as it's falling either...
I tried to go about my holidays the only way I knew how, baking cookies, shopping, enjoying the sounds of the Christmas music as I wrapped presents. But I knew that a few short weeks later my life would be anything but familiar.
I tried to go about my holidays the only way I knew how, baking cookies, shopping, enjoying the sounds of the Christmas music as I wrapped presents. But I knew that a few short weeks later my life would be anything but familiar.
Emily: 2 months old
Some good news....
I finally got sick of waiting for the other shoe to drop, so I called and spoke with the genetic counselor at Hackensack to find out the results of all those tests Emily had....
All the genetic and metabolic testing that was done has come back normal! So we can safely say that her eye condition is an isolated problem and isn't the cause of some other underlying issue.
That is a huge sigh of relief for us.
All the genetic and metabolic testing that was done has come back normal! So we can safely say that her eye condition is an isolated problem and isn't the cause of some other underlying issue.
That is a huge sigh of relief for us.
Finally Some Answers
12/1/07:
Emily had her eye exam under anesthesia at Westchester Children's Hospital. We arrived at 1:00 as she was scheduled to go in at 2:00. Originally we were told that we would stay in the recovery area for an hour after she came out of the anesthesia, but when we got there they told us that because of her age they needed to keep her for 6 hours. If she did well we could go home, otherwise if she had any problems (ie...apnea) they would have to keep her overnight. We were completely unprepared to stay that long and were pretty upset about it, but there was nothing we could do. They didn't take her in until about 3:15 (we didn't leave the hospital until almost 10:00). I went into the operating room with her and watched her fall asleep, tears rolling down my face. The entire time she was in there, my heart was filled with such anxiety. Would we get some answers? Will he be able to help her see?
After the exam was finished, Dr. Zaidman came out to talk with us and said she did very well and was in recovery. During his exam he determined that she has Peters' Anomaly, not CHED as previously suspected. The pressure in her eyes was normal, so Glaucoma has been ruled out for now, but there is always a chance that she will develop it. Almost 70% of children with this condition do. The difference between CHED and Peters Anomaly is that CHED only affects the 5th layer of the cornea (there are 5 layers) and Peters Anomaly affects multiple layers. I believe he said it was the 2nd, 3rd and 5th layers. The only treatment for this condition is cornea transplant surgery. One good thing that was found during the exam was that other than the corneas, her eyes are completely normal so hopefully this means that she will have the best vision possible after the surgery.
From what we understand, her condition is caused by a genetic abnormality and was formed during the first trimester of pregnancy. There is currently no prenatal testing that could have detected this problem before she was born.
The doctor told us that he had already cleared a place in his schedule for her surgery at the beginning of January. Within the following week we would be hearing from his office as to a tentative date. Because the surgery relies on a donor cornea, the exact date of the surgery would not be known until the day before. The tentative date would give us an idea of about when it would take place. The Eye Bank in NY was going to be notified that a cornea for her would be needed around that time. When one becomes available, we would be notified and the surgery would be scheduled for the next day. So basically we would be on stand-by for the week surrounding the date we are given. It could be a few days before or a few days after. The surgery itself will take about an hour and a half, but if her body accepts the donor cornea, it should last her entire lifetime. Whether or not she will need to stay overnight at the hospital wasn't known yet, but we would prepare for it just in case. The day after the surgery she would need to be seen in Dr. Zaidman's office for a follow up and from there on she would be seen about 3 times a week for the first month and then twice a week for the second month. The frequency would eventually decrease down to once a month, but because the second eye was going to be done about 8 weeks or so after the first one, the frequency of doctors visits would once again go back to 3 times a week and so on. She would also need to be followed by a Pediatric Ophthalmologist. We were hoping to find one who is in our area, or at least closer to home than Westchester.
As for her prognosis, that was still up in the air and would greatly depend on the quality of the donor tissue, her body's ability to accept it, and the further development of her eyes and vision as she gets older. She would need visual therapy, so I started the process of contacting a state organization to enroll her in Early Intervention. Through this program a therapist would come to our house and work with her. She would need as much visual stimulation as possible to give her the best chance to see well. She also would most likely need glasses, probably as soon as her eyes are healed from the surgery. The specifics for after the surgery is complete were still not known, but we were taking one step at a time. Looking at the big picture and what lies ahead for her and us was and still is completely overwhelming, so we were trying to just focus on what the next step was and go from there.
This was the beginning of a very long road for her and for us as a family. We would need all the love and support we can get, as we tried to get through this very difficult and trying time. We tried to remain positive and optimistic about her future, but as you can imagine this is a very emotionally difficult process. Christmas was just a few weeks away and I just wanted to put this aside and try to enjoy the holiday season. Our little girls first Christmas...and "the calm before the storm".
Emily had her eye exam under anesthesia at Westchester Children's Hospital. We arrived at 1:00 as she was scheduled to go in at 2:00. Originally we were told that we would stay in the recovery area for an hour after she came out of the anesthesia, but when we got there they told us that because of her age they needed to keep her for 6 hours. If she did well we could go home, otherwise if she had any problems (ie...apnea) they would have to keep her overnight. We were completely unprepared to stay that long and were pretty upset about it, but there was nothing we could do. They didn't take her in until about 3:15 (we didn't leave the hospital until almost 10:00). I went into the operating room with her and watched her fall asleep, tears rolling down my face. The entire time she was in there, my heart was filled with such anxiety. Would we get some answers? Will he be able to help her see?
After the exam was finished, Dr. Zaidman came out to talk with us and said she did very well and was in recovery. During his exam he determined that she has Peters' Anomaly, not CHED as previously suspected. The pressure in her eyes was normal, so Glaucoma has been ruled out for now, but there is always a chance that she will develop it. Almost 70% of children with this condition do. The difference between CHED and Peters Anomaly is that CHED only affects the 5th layer of the cornea (there are 5 layers) and Peters Anomaly affects multiple layers. I believe he said it was the 2nd, 3rd and 5th layers. The only treatment for this condition is cornea transplant surgery. One good thing that was found during the exam was that other than the corneas, her eyes are completely normal so hopefully this means that she will have the best vision possible after the surgery.
From what we understand, her condition is caused by a genetic abnormality and was formed during the first trimester of pregnancy. There is currently no prenatal testing that could have detected this problem before she was born.
The doctor told us that he had already cleared a place in his schedule for her surgery at the beginning of January. Within the following week we would be hearing from his office as to a tentative date. Because the surgery relies on a donor cornea, the exact date of the surgery would not be known until the day before. The tentative date would give us an idea of about when it would take place. The Eye Bank in NY was going to be notified that a cornea for her would be needed around that time. When one becomes available, we would be notified and the surgery would be scheduled for the next day. So basically we would be on stand-by for the week surrounding the date we are given. It could be a few days before or a few days after. The surgery itself will take about an hour and a half, but if her body accepts the donor cornea, it should last her entire lifetime. Whether or not she will need to stay overnight at the hospital wasn't known yet, but we would prepare for it just in case. The day after the surgery she would need to be seen in Dr. Zaidman's office for a follow up and from there on she would be seen about 3 times a week for the first month and then twice a week for the second month. The frequency would eventually decrease down to once a month, but because the second eye was going to be done about 8 weeks or so after the first one, the frequency of doctors visits would once again go back to 3 times a week and so on. She would also need to be followed by a Pediatric Ophthalmologist. We were hoping to find one who is in our area, or at least closer to home than Westchester.
As for her prognosis, that was still up in the air and would greatly depend on the quality of the donor tissue, her body's ability to accept it, and the further development of her eyes and vision as she gets older. She would need visual therapy, so I started the process of contacting a state organization to enroll her in Early Intervention. Through this program a therapist would come to our house and work with her. She would need as much visual stimulation as possible to give her the best chance to see well. She also would most likely need glasses, probably as soon as her eyes are healed from the surgery. The specifics for after the surgery is complete were still not known, but we were taking one step at a time. Looking at the big picture and what lies ahead for her and us was and still is completely overwhelming, so we were trying to just focus on what the next step was and go from there.
This was the beginning of a very long road for her and for us as a family. We would need all the love and support we can get, as we tried to get through this very difficult and trying time. We tried to remain positive and optimistic about her future, but as you can imagine this is a very emotionally difficult process. Christmas was just a few weeks away and I just wanted to put this aside and try to enjoy the holiday season. Our little girls first Christmas...and "the calm before the storm".
Depression Sets In
I will be the first to tell you that I had Post Partum Depression in the months after I had Tyler, my second son. I didn't see it at first, but after months of crying for little or no reason and feeling like nothing was ever going to go my way, I broke down and talked to my doctor about it. I was on medication for a few months and as I started feeling better I took myself off of it. I probably wasn't supposed to do that, but I was much better and not taking the meds anymore gave me hope that the PPD was over.
This was an entirely different type of depression, this was not PPD. This time, my tears were coming from such a deep seeded place of sadness. I would have some good moments when I would just look at her while she's sleeping and think 'wow, how lucky am I to have such a beautiful little girl'. But in all honesty, the moment she would wake up and open her eyes, my heart would sink. It was like reality came back and kicked me straight in the gut. Sometimes when she would cry, I would stand and rock her to calm her down. Having her head lying right over my heart so she could hear the sounds she was used to before she was born. I specifically remember one day about 2 weeks after she was born where I just stood in the living room rocking her and crying my eyes out. All I wanted to do was protect her from all of what she was about to go through. Why couldn't I protect her? I am her mother, mothers are supposed to protect their children. How come I can't do that for her? What kind of mother am I?
I cried alot....I Cried A LOT. I knew my where my depression was coming from and honestly didn't want to waste anytime trying to fix me, I just wanted to fix her. She needed to see the doctors more than I did, so I put myself on the back burner. Trying to convince myself that I was strong enough to get through this. But where do I get the strength from? Is there a magical "be strong" fairy out there who would come in the middle of the night and sprinkle some glitter on me? Is it like coffee? Have a cup of strength in the morning and it will get your day started off right? How do I get through my day without completely falling apart? Most of the time I didn't. I would spend many days just crying, holding Emily as tight as I could, not wanting to put her down for fear something else would happen. If I put her down, I couldn't protect her anymore. So I held her, almost all day, as much as I could. Nothing was going to happen to her as long as she was in my arms.
But that is not reality, all of that was in my head and I knew it wasn't true. How could I protect her from what she was about to go through, if this problem developed while she was still inside my womb? How could I allow this to happen to her? Why didn't I have that mothers intuition feeling in my gut that there was something wrong for all of those 9 months? How did I not know this was happening to her? I felt helpless.
This was an entirely different type of depression, this was not PPD. This time, my tears were coming from such a deep seeded place of sadness. I would have some good moments when I would just look at her while she's sleeping and think 'wow, how lucky am I to have such a beautiful little girl'. But in all honesty, the moment she would wake up and open her eyes, my heart would sink. It was like reality came back and kicked me straight in the gut. Sometimes when she would cry, I would stand and rock her to calm her down. Having her head lying right over my heart so she could hear the sounds she was used to before she was born. I specifically remember one day about 2 weeks after she was born where I just stood in the living room rocking her and crying my eyes out. All I wanted to do was protect her from all of what she was about to go through. Why couldn't I protect her? I am her mother, mothers are supposed to protect their children. How come I can't do that for her? What kind of mother am I?
I cried alot....I Cried A LOT. I knew my where my depression was coming from and honestly didn't want to waste anytime trying to fix me, I just wanted to fix her. She needed to see the doctors more than I did, so I put myself on the back burner. Trying to convince myself that I was strong enough to get through this. But where do I get the strength from? Is there a magical "be strong" fairy out there who would come in the middle of the night and sprinkle some glitter on me? Is it like coffee? Have a cup of strength in the morning and it will get your day started off right? How do I get through my day without completely falling apart? Most of the time I didn't. I would spend many days just crying, holding Emily as tight as I could, not wanting to put her down for fear something else would happen. If I put her down, I couldn't protect her anymore. So I held her, almost all day, as much as I could. Nothing was going to happen to her as long as she was in my arms.
But that is not reality, all of that was in my head and I knew it wasn't true. How could I protect her from what she was about to go through, if this problem developed while she was still inside my womb? How could I allow this to happen to her? Why didn't I have that mothers intuition feeling in my gut that there was something wrong for all of those 9 months? How did I not know this was happening to her? I felt helpless.
Wednesday, June 10, 2009
There Are No Words
After we brought Emily home and tried to adjust to our new reality of life, I became very distant from family and friends. It wasn't that I didn't want or need support from them, I just couldn't bring myself to talk about what was going on. I forced myself to take a phone call from my best friend while lying in bed with Emily sleeping next to me. I hadn't really talked to her much about the specifics of things, and I just completely broke down and sobbed to her on the phone. I was so scared for her, so sad for her and didn't know how to deal with what was going on. I had family, friends, doctors giving me names and numbers of doctors and specialists. Particularly ones in Philadelphia. After we made contacts in NYC, for some reason I completely avoided making the call to a doctor in Philly, mainly because I didn't want to rehash the entire story. It was too raw, too emotional for me to talk about. So I never picked up the phone. I didn't want to drive 3 hours to PA on a weekly basis if we could go to NY. I just couldn't handle it.
Three days after we brought Emmy home, we went into the city to see the cornea specialist at Columbia. The pediatric doctor who saw her in the hospital was also there. Initially a few disorders were ruled out, including cataracts. But as we sat in the exam chair and the two doctors flipped through medical books trying to figure out what the hell was wrong with her I could feel the anxiety building up inside me. Ultimately, we got no definitive answer as to what the problem is or how we will need to correct it. Further testing would need to be done to give a correct diagnosis. We were told that they were not sure if she could see, or how well she will be able to see in the future, but one thing was pretty clear, she would most likely need to have cornea transplant surgery. I was numb, I couldn't put two words together to form any coherent thought, I just wanted to get out of that building and as far away from that office as I possibly could. Before we left, we were referred to a pediatric cornea specialist at Westchester Medical Center who would hopefully correctly diagnose her condition and perform the surgery which would need to be done within the next few months. Jason and I left the office without looking at or speaking to each other. We got into the elevator and I just began sobbing, holding Emily as tight as I could. There were no words to say at that moment.
I did the best I could to pull myself together when the elevator door opened and I was thrust back into the busy lobby of the Eye Institute. We walked out the door and back to the van in the parking garage without saying much. I got to the van, put Emily back in her car seat and kissed her cheek. Jason put the stroller in the back of the van and got in the drivers seat. The moment I closed my door, I completely fell apart. That was probably the lowest moment of my life. I don't think I have ever cried that hard before in my life. What originally started out as tears of sadness quickly turned to anger and panic. We needed to leave, I could not stare at the parking garage wall anymore. I screamed for Jason to get us out of here as fast as he could. It was like I couldn't breathe....just get us out of here - and NOW.
We called our families to meet at Jason's parents house so we could explain what we had been told. When we got there, we sat down at the table and just put it all out there on the table. No one wanted to believe what we were saying, but we all knew it was reality.
When Emily was 12 days old we took her to see the Geneticist who ordered some blood work and urine tests, to which we have not yet received any results. It's very unlikely that there is any underlying genetic or metabolic reason for what has happened, so these tests are basically to just rule everything out.
Comic relief....While we were there, we were left alone with Emily for a little while to try and collect a urine sample. Instead Emily pooped like she had never pooped before. There was yellow baby poop everywhere, all over her, her clothes, the diaper changing pad and the floor of the office where we were changing her. We ALMOST ran out of wipes, which would have been disastrous. And the kicker is that she peed really good into the collection bag, but all the poop contaminated it. Damn poop! Now we had to start all over. Do you know how hard it is to stick a urine collection bag over a newborn baby girls' girlie parts and actually get something to stay inside? Babies that little don't sit up, they lay down. When they lay down, all the pee just goes down into the diaper, it doesn't go sideways into a bag...that would be defying gravity. Who the hell came up with that form of urine collection for a 1 week old? Boys...ok probably not a problem...but girls? Not going to work. We were sent home with a whole bunch of collection bags, we needed to collect more at home and bring it to the lab when we got enough for the testing. Well that didn't go over well either. We ran out of bags because they kept leaking pee all over the place, so I had to get more bags from LabCorp. What a freakin pain in the ass that was. We had to freeze her pee and add tiny little bits at a time into the container because we could never get a full bag. Once all the bags were gone I brought her pee-cicle to the lab and they sent it to The Mayo Clinic to be analyzed. Now the wait begins to get the results, with fingers crossed for only good news.
When we finally met with the cornea specialist at Westchester, he examined her and pretty much came to the same conclusion as the previous doctors, that further testing would need to be done to be 100% sure of what is wrong. He narrowed it down to one of a couple possibilities. Glaucoma, C.H.E.D. or Peters Anomaly. He doesn't think it's Glaucoma but he can't rule it out just yet because getting an accurate eye pressure reading on an infant is difficult. We knew from the first doctor we saw that Peters Anomaly seems to be unlikely because there are usually other indications of that disorder which don't seem to be present in Emily, ie...heart or lung problems. So Dr. Zaidman seems to think it is CHED, which stands for Congenital Hereditary Endothelial Dystrophy. The course of treatment for this would be the cornea transplant surgery. We had to pretty much come to terms with the fact that she will need to have the transplant surgery, we want her to be able to see and if this is what needs to be done, then we will get through it. We will take one step at a time and move forward with treatment as we go along. Here is what we knew would happen. In order for the doctor to fully examine her and get a true diagnosis, he would need to put her under anesthesia in the operating room. This is when he would be able to do a retina scan, take accurate readings of the pressure in her eyes to rule out Glaucoma, and run other tests. That was to be done when she was about 5-6 weeks old so that she can tolerate the anesthesia better. Once this exam is done we would know for sure what is wrong and could then further discuss a treatment plan. In the event that it is Glaucoma, he had given her an eye drop prescription that will prevent the pressure in her eyes from getting worse. She needed to stop using the drops about 4-5 days before the exam under anesthesia so an accurate reading can be taken. If she does need to have the surgery, it would be done one eye at a time. The first eye would be done when she is about 8-9 weeks old, and the second eye about 4-6 weeks later. At about 8-9 weeks is when her eye will best be able to accept the donor cornea. Any earlier than that and the risk of rejecting the transplant is higher. The second eye will be done after the first eye has had time to heal.
After the surgery has been done, she would need alot of eye drops, follow up doctors visits and would probably need to wear glasses. But if she can see we will do whatever it takes. We just want her to be able to see the world and the people that love her.
It was a tough pill to swallow, but we left his office with a feeling of hope. A feeling that maybe she will be ok in time. And that is all we can ask for, for there to always be hope for her.
Three days after we brought Emmy home, we went into the city to see the cornea specialist at Columbia. The pediatric doctor who saw her in the hospital was also there. Initially a few disorders were ruled out, including cataracts. But as we sat in the exam chair and the two doctors flipped through medical books trying to figure out what the hell was wrong with her I could feel the anxiety building up inside me. Ultimately, we got no definitive answer as to what the problem is or how we will need to correct it. Further testing would need to be done to give a correct diagnosis. We were told that they were not sure if she could see, or how well she will be able to see in the future, but one thing was pretty clear, she would most likely need to have cornea transplant surgery. I was numb, I couldn't put two words together to form any coherent thought, I just wanted to get out of that building and as far away from that office as I possibly could. Before we left, we were referred to a pediatric cornea specialist at Westchester Medical Center who would hopefully correctly diagnose her condition and perform the surgery which would need to be done within the next few months. Jason and I left the office without looking at or speaking to each other. We got into the elevator and I just began sobbing, holding Emily as tight as I could. There were no words to say at that moment.
I did the best I could to pull myself together when the elevator door opened and I was thrust back into the busy lobby of the Eye Institute. We walked out the door and back to the van in the parking garage without saying much. I got to the van, put Emily back in her car seat and kissed her cheek. Jason put the stroller in the back of the van and got in the drivers seat. The moment I closed my door, I completely fell apart. That was probably the lowest moment of my life. I don't think I have ever cried that hard before in my life. What originally started out as tears of sadness quickly turned to anger and panic. We needed to leave, I could not stare at the parking garage wall anymore. I screamed for Jason to get us out of here as fast as he could. It was like I couldn't breathe....just get us out of here - and NOW.
We called our families to meet at Jason's parents house so we could explain what we had been told. When we got there, we sat down at the table and just put it all out there on the table. No one wanted to believe what we were saying, but we all knew it was reality.
When Emily was 12 days old we took her to see the Geneticist who ordered some blood work and urine tests, to which we have not yet received any results. It's very unlikely that there is any underlying genetic or metabolic reason for what has happened, so these tests are basically to just rule everything out.
Comic relief....While we were there, we were left alone with Emily for a little while to try and collect a urine sample. Instead Emily pooped like she had never pooped before. There was yellow baby poop everywhere, all over her, her clothes, the diaper changing pad and the floor of the office where we were changing her. We ALMOST ran out of wipes, which would have been disastrous. And the kicker is that she peed really good into the collection bag, but all the poop contaminated it. Damn poop! Now we had to start all over. Do you know how hard it is to stick a urine collection bag over a newborn baby girls' girlie parts and actually get something to stay inside? Babies that little don't sit up, they lay down. When they lay down, all the pee just goes down into the diaper, it doesn't go sideways into a bag...that would be defying gravity. Who the hell came up with that form of urine collection for a 1 week old? Boys...ok probably not a problem...but girls? Not going to work. We were sent home with a whole bunch of collection bags, we needed to collect more at home and bring it to the lab when we got enough for the testing. Well that didn't go over well either. We ran out of bags because they kept leaking pee all over the place, so I had to get more bags from LabCorp. What a freakin pain in the ass that was. We had to freeze her pee and add tiny little bits at a time into the container because we could never get a full bag. Once all the bags were gone I brought her pee-cicle to the lab and they sent it to The Mayo Clinic to be analyzed. Now the wait begins to get the results, with fingers crossed for only good news.
When we finally met with the cornea specialist at Westchester, he examined her and pretty much came to the same conclusion as the previous doctors, that further testing would need to be done to be 100% sure of what is wrong. He narrowed it down to one of a couple possibilities. Glaucoma, C.H.E.D. or Peters Anomaly. He doesn't think it's Glaucoma but he can't rule it out just yet because getting an accurate eye pressure reading on an infant is difficult. We knew from the first doctor we saw that Peters Anomaly seems to be unlikely because there are usually other indications of that disorder which don't seem to be present in Emily, ie...heart or lung problems. So Dr. Zaidman seems to think it is CHED, which stands for Congenital Hereditary Endothelial Dystrophy. The course of treatment for this would be the cornea transplant surgery. We had to pretty much come to terms with the fact that she will need to have the transplant surgery, we want her to be able to see and if this is what needs to be done, then we will get through it. We will take one step at a time and move forward with treatment as we go along. Here is what we knew would happen. In order for the doctor to fully examine her and get a true diagnosis, he would need to put her under anesthesia in the operating room. This is when he would be able to do a retina scan, take accurate readings of the pressure in her eyes to rule out Glaucoma, and run other tests. That was to be done when she was about 5-6 weeks old so that she can tolerate the anesthesia better. Once this exam is done we would know for sure what is wrong and could then further discuss a treatment plan. In the event that it is Glaucoma, he had given her an eye drop prescription that will prevent the pressure in her eyes from getting worse. She needed to stop using the drops about 4-5 days before the exam under anesthesia so an accurate reading can be taken. If she does need to have the surgery, it would be done one eye at a time. The first eye would be done when she is about 8-9 weeks old, and the second eye about 4-6 weeks later. At about 8-9 weeks is when her eye will best be able to accept the donor cornea. Any earlier than that and the risk of rejecting the transplant is higher. The second eye will be done after the first eye has had time to heal.
After the surgery has been done, she would need alot of eye drops, follow up doctors visits and would probably need to wear glasses. But if she can see we will do whatever it takes. We just want her to be able to see the world and the people that love her.
It was a tough pill to swallow, but we left his office with a feeling of hope. A feeling that maybe she will be ok in time. And that is all we can ask for, for there to always be hope for her.
Uncertainty, Fear & Denial
Our 4 days in the hospital was anything but normal. While still in the hospital we were given the name and phone number of a Geneticist at Hackensack University Medical Center. We were told to contact him and set up an appointment as soon as possible to start genetic testing to find out if there was a metabolic or genetic reason why this happened to her and if there was anything else wrong with her. We were also put in touch with Dr. Florakis's office at Columbia. They wanted us to be discharged early from the hospital in order to bring her to be seen by him. I spent most of the last 2 days in the hospital on the phone with doctors instead of focusing on bonding with my baby. And being discharged early to go straight to NYC for a consult was not my idea of how to welcome a new baby into our lives. Your first day home with a baby is supposed to be filled with love and excitement and I was very sad that it didn't appear as though that was going to happen for us. There was even talk about having medical transport bring us from Ridgewood to NYC since I was still recovering from the C-section.
This is not what was supposed to happen, this is not how I envisioned these first days with my baby being, why was this happening to us? Why?....That was a question that we would never be able to get an answer to. I went through the emotions of "was this my fault", "did I do something wrong", "could this have been prevented?"...that answer was easier to say than to accept....No, this was not my fault, No I didn't do anything wrong, and No this couldn't have been prevented. But that didn't make me feel any better. I was scared to death. What was her future going to be like? How was her condition going to affect our family, would the boys understand that she's not going to be able to do the things that they can...this could not be happening to us, these things only happen to other people. I felt like I was in a bad dream and couldn't wake up.
We eventually arranged for Emily to be seen by the Geneticist and Dr. Florakis a few days after we were to be discharged, allowing us more time to get settled as a family and prepare ourselves for what was lying ahead of us. On the day we were to be discharged, the hospital needed to take some blood and urine samples to get some initial genetic testing underway, except this meant she needed a catheter. The nurse said we could leave as soon as they got enough urine to supply the lab with what they needed to do multiple tests. We sat and waited for hours for that little tube to fill up, except the nurse didn't realize that the catheter wasn't in place correctly and we lost everything except a small amount in the bottom. We were really frustrated at that point because it was all for nothing. But we were going home...
We had left the protective walls of the hospital, now exposed to all the fear and uncertainty of the long dark road ahead of us instead of planning the bright and sunny future for our baby girl. How do you handle something of this magnitude? We didn't know even where to start.
This is not what was supposed to happen, this is not how I envisioned these first days with my baby being, why was this happening to us? Why?....That was a question that we would never be able to get an answer to. I went through the emotions of "was this my fault", "did I do something wrong", "could this have been prevented?"...that answer was easier to say than to accept....No, this was not my fault, No I didn't do anything wrong, and No this couldn't have been prevented. But that didn't make me feel any better. I was scared to death. What was her future going to be like? How was her condition going to affect our family, would the boys understand that she's not going to be able to do the things that they can...this could not be happening to us, these things only happen to other people. I felt like I was in a bad dream and couldn't wake up.
We eventually arranged for Emily to be seen by the Geneticist and Dr. Florakis a few days after we were to be discharged, allowing us more time to get settled as a family and prepare ourselves for what was lying ahead of us. On the day we were to be discharged, the hospital needed to take some blood and urine samples to get some initial genetic testing underway, except this meant she needed a catheter. The nurse said we could leave as soon as they got enough urine to supply the lab with what they needed to do multiple tests. We sat and waited for hours for that little tube to fill up, except the nurse didn't realize that the catheter wasn't in place correctly and we lost everything except a small amount in the bottom. We were really frustrated at that point because it was all for nothing. But we were going home...
We had left the protective walls of the hospital, now exposed to all the fear and uncertainty of the long dark road ahead of us instead of planning the bright and sunny future for our baby girl. How do you handle something of this magnitude? We didn't know even where to start.
Subscribe to:
Posts (Atom)