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.
Subscribe to:
Posts (Atom)
