We went to meet with the surgeon today. When she operated on me, I wasn't married yet and so I kind of figured she wouldn't know the name. As soon as she walked into the conference room she said "Hey, I know you!" It was so nice to be remembered six years later. She said "So, your baby got your genes, no problem." She proceeded to bring our her "portfolio" of before and after pics, the results were amazing, you could barely tell these children had clefts. She didn't delve into too much of the technical medical stuff, just reassured us that all would be fine and that things were way more advanced than they were 30 years ago.
I left feeling a level of comfort. I think my husband was hoping for more cut and dry information. My thought was, if I trusted this woman with performing such a major surgery on myself and had good experiences, then she could be trusted with caring for my child as well. The one thing that really swayed my decision was that as they were putting me under anestesia, SHE was the one who was holding my hand and telling me not to worry that she was going to take excellent care of me. How many surgeons do that? If she did that for me and I was an adult, then I knew she would give my baby the same love and care.
We'll see her again after the baby is born.....
Monday, October 26, 2009
July 30, 2009- Selecting a Cleft Team
After the Amnio results came back, it was time for us to choose a Cleft team. The Cleft team consists of doctors, social workers, speech therapists, etc. who will be responsible for the baby's care. What a huge decision! It was recommended that we speak with at least two teams before making our decision. While I wanted to just go with the team who had cared for me, as a parent I needed to be prudent and be well educated before making that decision.
We first spoke with the team at NYU, the doctors there are on the cutting edge of surgical techniques in repairing clefts and have an excellent reputation. This team uses a device called NAM (acronym for medical jargon) which is essentially a prosthetic that is placed inside the baby's nose and is adjusted weekly to stretch the cartilage in order to have surgery perfomed earlier. While I was impressed with all I heard and what I read, all of the doctors were located in Manhattan. After much discussion, my husband and I just couldn't see how realistic it would be to bring an infant to Manhattan weekly without upsetting our three-year old's life as well.
My second call was to the surgeon who had closed my palate just six years ago. She also was using the NAM technology and to hear that my former dentist was the one who would create it and adjust it put me at ease, bonus....his office was just 15 minutes from our home! And so we made an appointment for a consultation, it was important to me for my husband to feel comfortable with this surgeon as well.
We first spoke with the team at NYU, the doctors there are on the cutting edge of surgical techniques in repairing clefts and have an excellent reputation. This team uses a device called NAM (acronym for medical jargon) which is essentially a prosthetic that is placed inside the baby's nose and is adjusted weekly to stretch the cartilage in order to have surgery perfomed earlier. While I was impressed with all I heard and what I read, all of the doctors were located in Manhattan. After much discussion, my husband and I just couldn't see how realistic it would be to bring an infant to Manhattan weekly without upsetting our three-year old's life as well.
My second call was to the surgeon who had closed my palate just six years ago. She also was using the NAM technology and to hear that my former dentist was the one who would create it and adjust it put me at ease, bonus....his office was just 15 minutes from our home! And so we made an appointment for a consultation, it was important to me for my husband to feel comfortable with this surgeon as well.
Sunday, October 18, 2009
July 27, 2009 (from my private journal)-
Since the amnio results have come back almost a month ago things have been in a lull. My husband and I haven't spoken about the baby's cleft and life has been continuing as usual, sometimes, for a brief moment I forget about it.
I sent an e-mail to my aunts and uncles telling them about the baby's cleft and told our family that they can share this info with family and friends. I feel that the more people that know, the easier it will be when the baby is born. I think my husband is not sure what to tell his co-workers. He's a police officer and they always post up a sign in the precinct when a new baby is born, I think he's hesitant because he doesn't know what to say or how people will react. They do the same at my workplace, I'm a dance teacher at a large school. I know that my students are anxious to see the sign go up and I too am finding myself wondering if I will send a picture as I did with my son three years ago (no cleft). I'm concerned about reactions that I will not be there to tend to, I don't want pity for the baby or us for that matter but I sure don't want people looking at the picture saying things like "oh my god what is wrong with that baby", yet I want to be a proud Mommy and show off my new little one. It all seems so petty but these are the things I think about.
I sent an e-mail to my aunts and uncles telling them about the baby's cleft and told our family that they can share this info with family and friends. I feel that the more people that know, the easier it will be when the baby is born. I think my husband is not sure what to tell his co-workers. He's a police officer and they always post up a sign in the precinct when a new baby is born, I think he's hesitant because he doesn't know what to say or how people will react. They do the same at my workplace, I'm a dance teacher at a large school. I know that my students are anxious to see the sign go up and I too am finding myself wondering if I will send a picture as I did with my son three years ago (no cleft). I'm concerned about reactions that I will not be there to tend to, I don't want pity for the baby or us for that matter but I sure don't want people looking at the picture saying things like "oh my god what is wrong with that baby", yet I want to be a proud Mommy and show off my new little one. It all seems so petty but these are the things I think about.
July 3, 2009 (from my private journal)- Finally, Some Good News!
The next 10 days were worse than going through the procedure. Each day around day 7 of waiting, I'd wonder if today were the day that the call would come and each day it did not. Finally on day 10, I called them and was told that the results had been in 2 days prior but no one had called! UGH! The doctor confirmed that everything was fine....finally, some good news! "Do you want to know the sex?" the Doctor asked. "No thanks" I responded. My husband and I agreed we wouldn't find out unless something turned up.
What a huge weight lifted off our shoulders. At least we knew now that all we had to focus on was the cleft.
What a huge weight lifted off our shoulders. At least we knew now that all we had to focus on was the cleft.
June 23, 2009 (from my private journal)- The Dreaded Amnio
After all the surgeries I've had you wouldn't think that I am horribly afraid of needles. The thought of an amnio always sent shivers through my body, but I was thankful, even at the beginning of this pregnancy, that I was not over 35 nor did I have any other issues to warrant an amnio. That is, until I found out about the baby's cleft.
Although the genetic testing found it "highly unlikely" that any chromosomal issues would appear with the baby's cleft, I just had to have the amnio done for my own peace of mind.
I'll be honest, it wasn't as terrifying as I imagined. It was painful, it was uncomfortable and it was unpleasant and I would not like to have to go through it again! I focused on my husband and the doctor tried to make conversation with me. I didn't feel like conversing, does anyone with 6" needle sticking out of their abdomen? It felt like it was 10 minutes but it was really only 2 minutes max.
After it was over, my husband reassured me that he could see the needle on the sono screen and it was no where near the baby. I was told to take it easy for the next 24 hours or so and I'd hear back with the results within 8 - 10 days! Seriously? With modern medicine and technology, it takes THAT long?
Although the genetic testing found it "highly unlikely" that any chromosomal issues would appear with the baby's cleft, I just had to have the amnio done for my own peace of mind.
I'll be honest, it wasn't as terrifying as I imagined. It was painful, it was uncomfortable and it was unpleasant and I would not like to have to go through it again! I focused on my husband and the doctor tried to make conversation with me. I didn't feel like conversing, does anyone with 6" needle sticking out of their abdomen? It felt like it was 10 minutes but it was really only 2 minutes max.
After it was over, my husband reassured me that he could see the needle on the sono screen and it was no where near the baby. I was told to take it easy for the next 24 hours or so and I'd hear back with the results within 8 - 10 days! Seriously? With modern medicine and technology, it takes THAT long?
June 17, 2009 (from my private journal)- The Genetic Counselor
My husband and I met with the genetic counselor today. I didn't really know what to expect. It was all very scientific, talk about chromosomes and lack thereof and sex genes. We gave our family history to the best of our knowledge. I was the first cleft as far back as we could trace and there had been no cleft on my husband's side. The doctor perfomed a short exam on me consiting of measuring my head, distance between my eyes and other strange things. After a very nerve-wracking couple of hours we left with an answer of "it is highly unlikely that any chromosomal defect is present and that the baby's cleft is probably a result of maternal genetics." Highly unlikely was not good enough for me and I decided to still opt for the amnio although my fear of needles was telling me not to do it.
He also said that if we chose to have a third baby, it's chances of having a cleft would be 50% since we have one without a cleft and one with a cleft. This solidified it for me, there will NOT be a third, I don't think I could bare having another child with a cleft!
He also said that if we chose to have a third baby, it's chances of having a cleft would be 50% since we have one without a cleft and one with a cleft. This solidified it for me, there will NOT be a third, I don't think I could bare having another child with a cleft!
June 16, 2009 (from my private journal)- Daddy's Little Girl
I had to call my Dad to tell him personally. My Dad and I have a special relationship, I'm a true Daddy's Little Girl. I remember my mom always telling me that it was my Dad who would hold me while they took blood and put IV's in. It was my Dad who would hold the pan as I vomited from the anestesia and would clean my stitches after each surgery, he had the stronger stomach and stronger will to see his little girl go through so much. I was't sure how he would take this news.
Again, I stuck to the facts. "Dad, I had another sono yesterday and they found that the baby has a bilateral cleft lip." I told him. His reply, "you know Pump, we love our babies no matter what." as his voice cracked. My eyes welled up, "be strong" I told myself over and over. "I know Dad". He went on, "of all the things that could be wrong these days, this is nothing." This made alot of sense to me and gave me a sense of reassurance and for the first time I felt some strength being mustered up. Dad always had a way of making an impact with few words.
By this time, my wonderful friends were e-mailing me back the most beautiful of words but I needed to make one more call, to my best friend of 22 years, I hadn't included her on the e-mail. She had been by my side through at least 5 of my surgeries, she was the only one I would let see me with stitches, with packing oozing from my nose, and black eyes. She was the one who I would have to yell at to stop making me laugh because it hurt too bad. I made the call and with her three kids in the background clamering for her attention she was right there with me as I cried (yet again). I had hoped in that moment that my child would befriend somone like her along the way.
Again, I stuck to the facts. "Dad, I had another sono yesterday and they found that the baby has a bilateral cleft lip." I told him. His reply, "you know Pump, we love our babies no matter what." as his voice cracked. My eyes welled up, "be strong" I told myself over and over. "I know Dad". He went on, "of all the things that could be wrong these days, this is nothing." This made alot of sense to me and gave me a sense of reassurance and for the first time I felt some strength being mustered up. Dad always had a way of making an impact with few words.
By this time, my wonderful friends were e-mailing me back the most beautiful of words but I needed to make one more call, to my best friend of 22 years, I hadn't included her on the e-mail. She had been by my side through at least 5 of my surgeries, she was the only one I would let see me with stitches, with packing oozing from my nose, and black eyes. She was the one who I would have to yell at to stop making me laugh because it hurt too bad. I made the call and with her three kids in the background clamering for her attention she was right there with me as I cried (yet again). I had hoped in that moment that my child would befriend somone like her along the way.
June 15, 2009 (from my private journal)- Part III: Telling my Mom, Time to be Strong
I went to work that evening, puffy, bloodshot eyes and all. I told everyone I was fine who saw that obviously something was not. I needed the distraction, it calmed me down and made me realize, life must and will go on.
It was time to tell family, I would first call my mom, I really dreaded it though. My mom cries at the drop of a hat, always has, how the heck was she going to take this news? I knew if she knew how distraught I was, she'd fall to pieces, so I took a deep breath and called, it was time to be strong. I kept the call very business-like, stuck to the facts and the immediate actions. And then came the question "how are you?" she asked. "I'm fine" I replied. "It is what it is and nothing I can do can change it, I just need to be educated and prepared and do whatever I need to to care for this baby." WOW, where did that come from? That made more sense than anything else that had gone through my mind that day. I kept repeating that response over and over for the rest of the night and while I still shed some tears, a calm was coming over me.
I decided to e-mail my closest friends, I could really use some kind words of support but didn't want to make 5 phone calls and rehash the day 5 times. I'd save the call to my dad for the next day, for some reason I thought that call would be more difficult to make.
Oh, and mom surprised me, NO tears....at least not then.
It was time to tell family, I would first call my mom, I really dreaded it though. My mom cries at the drop of a hat, always has, how the heck was she going to take this news? I knew if she knew how distraught I was, she'd fall to pieces, so I took a deep breath and called, it was time to be strong. I kept the call very business-like, stuck to the facts and the immediate actions. And then came the question "how are you?" she asked. "I'm fine" I replied. "It is what it is and nothing I can do can change it, I just need to be educated and prepared and do whatever I need to to care for this baby." WOW, where did that come from? That made more sense than anything else that had gone through my mind that day. I kept repeating that response over and over for the rest of the night and while I still shed some tears, a calm was coming over me.
I decided to e-mail my closest friends, I could really use some kind words of support but didn't want to make 5 phone calls and rehash the day 5 times. I'd save the call to my dad for the next day, for some reason I thought that call would be more difficult to make.
Oh, and mom surprised me, NO tears....at least not then.
June 15, 2009 (from my private journal)- Part II: This is my Fault and it's Not Fair!
I couldn't get to my car fast enough, it seemed as though everyone was staring at me wondering what horrible news I had just received. I hoped my husband would answer the phone and he did. "Sweetie" I said, "the baby has a cleft". A huge sigh came from the other end of the phone, "how do you know?" he asked. And I went through the whole story, sobbing, feeling as though I was going to vomit.
I'm not sure how I got home, the car must have been on auto-pilot but as I pulled into my driveway my husband was there to meet me. I just ran into his arms, burried my head like a child and sobbed uncontrollably. "This is my fault" is all I could think. "I have a cleft and now my child has one, this is all my fault". I understood right there in that moment the guilt my mother must have felt (she does not have a cleft), but no mother wants their child to suffer in any way.
We sat on the couch and I cried as we spoke about what was to come next. My husband, who always tries to see the silver lining in things, said that maybe we were the best parents to have this happen to given our (well my) experiences. Part of that made sense to me but then I got angry, "This isn't fair, why should I have to go through all of this and now go through it again as a parent? Did I do something so wrong in my life that I deserved this?" The answer to this question would become clearer in the following days.
I'm not sure how I got home, the car must have been on auto-pilot but as I pulled into my driveway my husband was there to meet me. I just ran into his arms, burried my head like a child and sobbed uncontrollably. "This is my fault" is all I could think. "I have a cleft and now my child has one, this is all my fault". I understood right there in that moment the guilt my mother must have felt (she does not have a cleft), but no mother wants their child to suffer in any way.
We sat on the couch and I cried as we spoke about what was to come next. My husband, who always tries to see the silver lining in things, said that maybe we were the best parents to have this happen to given our (well my) experiences. Part of that made sense to me but then I got angry, "This isn't fair, why should I have to go through all of this and now go through it again as a parent? Did I do something so wrong in my life that I deserved this?" The answer to this question would become clearer in the following days.
June 15, 2009 (from my private journal)- Part I: The Day my World Seemed to Come Crashing Down
Had the level 2 sono today, the thought of a cleft was still pretty far in the back of my mind. I mean, what would the chances be that since I had a Bilateral Cleft Lip and Palate that my 2nd child also have it? Why was I so naive? Although my husband had accompanied me to EVERY appointment for Ethan, I didn't give it a second thought when he couldn't make this appoinment, he had fulfilled his husbandly duties so I braved it alone.
The tech performed another thorough 20 week anatomy scan and indicated that she was going to focus on the baby's face. As she was going through the process she began asking questions about my cleft....."how many surgeries have you had?" "15 I replied", she said "you know technology has advanced tremendously since then right? Babies don't go though all that anymore". With that I got a sinking feeling in my gut that something was not right. She printed a beautiful pic of the baby for me and asked that I wait for a doctor to come speak to me (this was not my regular OB office). It's never good when you have to wait for a doctor to come speak to you right? If everything was fine, she would have sent me on my merry way. I stared at the pic of my baby for what seemed like an eternity thinking "please don't let it be a cleft". The doctor came in and said it "your baby has a cleft"! Not sure (or refusing) if I heard correctly (she had an accent), I asked her to repeat herself and she said again "your baby has a cleft". I immediately asked "can you tell how bad?" and she replied "both sides." In a split second every negative experience I had over the last 34 years, the surgeries, the speech issues, the dental work, the teasing, the lack of self-esteem.....all went through my mind and with that it seemed as if my world came crashing down....and I began to sob.
The doctor was so wonderful, she took me into her office and showed me the pictures and there it was, clear as day, a Bilateral cleft lip. I asked her about the palate and she said that they cannot get pictures of the palate and we wouldn't know for sure until the baby is born, but statistically with a bilateral lip usually comes a bilateral palate, and again the thoughts of the obturator I wore for 30 years and of feeling "not whole" came rushing back and my world came crashing down again for the second time in 10 minutes and again I began to sob.
The doctor went on to outline the most immediate steps...."are you planning to keep this baby?" she asked. Without a pause or breath, "Absolutely!" I repsonded, how could she ask such a thing. She sensed my surprise and explained that not every woman decides so. That was a sobering moment for me, "but this is so correctable" I thought. With all of the negative, at 34 years old, the positive far outweighs the negative. I have always felt that my cleft has made me the woman I am today, I am a confident, successful woman with a loving husband, beautiful son and wonderful family and friends.....a cleft isn't THAT bad! So bad, as to terminate a life!
Going on, the doctor informed me that genetic counseling for my husband and I is usually routine to see if there may be cause for concern for any of the chromosomal defects which can accompany a cleft. She set up that appointment for us herself. She also recommended an amnio to rule these defects out and made that appointment for me as well. Calming down now, the doctor printed out the contact info for every cleft team in N.Y. state and suggested we begin consulting to line up care for the baby.
As I was signing out of the office my emotions got the best of me and I began to cry yet again, I knew I was now going to have to tell my husband the news.
The tech performed another thorough 20 week anatomy scan and indicated that she was going to focus on the baby's face. As she was going through the process she began asking questions about my cleft....."how many surgeries have you had?" "15 I replied", she said "you know technology has advanced tremendously since then right? Babies don't go though all that anymore". With that I got a sinking feeling in my gut that something was not right. She printed a beautiful pic of the baby for me and asked that I wait for a doctor to come speak to me (this was not my regular OB office). It's never good when you have to wait for a doctor to come speak to you right? If everything was fine, she would have sent me on my merry way. I stared at the pic of my baby for what seemed like an eternity thinking "please don't let it be a cleft". The doctor came in and said it "your baby has a cleft"! Not sure (or refusing) if I heard correctly (she had an accent), I asked her to repeat herself and she said again "your baby has a cleft". I immediately asked "can you tell how bad?" and she replied "both sides." In a split second every negative experience I had over the last 34 years, the surgeries, the speech issues, the dental work, the teasing, the lack of self-esteem.....all went through my mind and with that it seemed as if my world came crashing down....and I began to sob.
The doctor was so wonderful, she took me into her office and showed me the pictures and there it was, clear as day, a Bilateral cleft lip. I asked her about the palate and she said that they cannot get pictures of the palate and we wouldn't know for sure until the baby is born, but statistically with a bilateral lip usually comes a bilateral palate, and again the thoughts of the obturator I wore for 30 years and of feeling "not whole" came rushing back and my world came crashing down again for the second time in 10 minutes and again I began to sob.
The doctor went on to outline the most immediate steps...."are you planning to keep this baby?" she asked. Without a pause or breath, "Absolutely!" I repsonded, how could she ask such a thing. She sensed my surprise and explained that not every woman decides so. That was a sobering moment for me, "but this is so correctable" I thought. With all of the negative, at 34 years old, the positive far outweighs the negative. I have always felt that my cleft has made me the woman I am today, I am a confident, successful woman with a loving husband, beautiful son and wonderful family and friends.....a cleft isn't THAT bad! So bad, as to terminate a life!
Going on, the doctor informed me that genetic counseling for my husband and I is usually routine to see if there may be cause for concern for any of the chromosomal defects which can accompany a cleft. She set up that appointment for us herself. She also recommended an amnio to rule these defects out and made that appointment for me as well. Calming down now, the doctor printed out the contact info for every cleft team in N.Y. state and suggested we begin consulting to line up care for the baby.
As I was signing out of the office my emotions got the best of me and I began to cry yet again, I knew I was now going to have to tell my husband the news.
June 10, 2009 (from my private journal)- 20 Week Sono
Had my 20 week sono today (although I'm actually 21 weeks). It's also my 34th Birthday! While I was thinking about the cleft possibility, it was very far in the back of my mind. I worried about it constantly with Ethan and nothing turned up. The tech said that the baby is breech and could not get a good pic of the face and so a level 2 sono was recommended for June 15th. Everything else looked ok and we were on our way.
First Official Post (10/18/09)
I created this blog almost a month ago and haven't written a darn thing. I wasn't sure where to start or when. I was secretly keeping a journal for myself but then I found a couple of great online support groups full of other parents who had chilren/were expecting children with clefts. I learned so much from them over the last few months and decided that I should share our story as well and maybe it would help someone who is in the same position as we were 4 months ago.
I think what I will do is go back to the beginning, to June 10, 2009 when we first found out that our baby may be born with a cleft. I'll make separate posts and then bring us up to date. Thanks for interest and for visiting!
I think what I will do is go back to the beginning, to June 10, 2009 when we first found out that our baby may be born with a cleft. I'll make separate posts and then bring us up to date. Thanks for interest and for visiting!
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