Thursday, February 16, 2012

Leap Year Baby

So, it is official!  We are having a "leap year baby"!  :)  Woohoo!

I spent the day at Brigham and Women's yesterday and met with the neonatologist today and I am sooo happy and excited, finally!  I can't wait to meet Abby!  She weights 5lb, 12oz and should be over 6lb by the time she is born.  What a ride!!

So thanks to the specialists at B&W, we are having our c-section on February 29th.  Soo Cool!!  I met some really compassionate and understanding professionals and am so pleased with their approach.  They actually said that they will take good care of me and Abby!  They said that they will do as much as possible to help us.  They cautioned me again of the worst outcome, but it wasn't their primary concern.  Their primary concern was giving me and Abby the best experience that they could provide, and I am so relieved!!  I can actually breathe!

My OB/GYN was incredible.  He acknowledged that my other doctors had Abby's demise already planned before she was born and he said that when that happens, then the whole team doesn't want to try!  I appreciated his honesty and was thrilled that that is not his intention.  AND we wanted to see what his recommendation was for the delivery method and he recommended a c-section!!  He was giving his reasons and half way through I interrupted and said that I wanted a c-section and he was happy (in a really funny way) that I chose a c-section!  We were relieved!  I was also able to meet with the Director of the NICU.  Quite impressive.  He was so down to earth and grounded and he has had experience with Campomelic Dysplasia babies!  That to me is the icing on the cake!

It is amazing how powerful positive affirmation is.  All I heard with my previous practice was the gloom and doom and it really affected me.  And being in it, I didn't realize how gloom and doom it really was!   Now I am hearing the positive side and it really does make a difference!  I am happy and excited to meet her.  This is it!  Less than two weeks and we get to meet.  How amazing is that!

Sunday, February 12, 2012

37 Weeks

Where to begin?  Oh my gosh.

I had an appointment with my OB/GYN about a week and a half ago.  It did not go well.  Abby is the same, but my doctor is NOT my doctor anymore!

I went in with a peaceful decision to ask for a c-section.  With all of my research on the internet and with getting advice from families with CD, I was certain that a c-section would be the best way to deliver Abby, based on her fragile skeletal and respiratory state.  My doctor disagreed.  She told me that based on Abby's "grim diagnosis" that it was her medical opinion that a vaginal delivery would be best for me since the risks for me having a c-section far outweighed the benefits to Abby and a c-section.  She feels that a c-section wouldn't give Abby a better chance at surviving than a vaginal delivery.  And a vaginal delivery would allow me to be with her right away (to die that is) versus a c-section.   I was in disbelief.  I couldn't believe that she was speaking to me that way.    Also, Abby is transverse breech.  That means she is sideways and not head down.  You want to know what she suggested?  A Version!!  A manual re-positioning of her body to move her into a vertex or head down position!  That alone was enough to fire her ass!  Of course I didn't at that moment!  I was too shocked to even respond.  I left her office crying my eyes out, questioning why the heck would anyone suggest such horrible things.  If Abby was a 'healthy' baby and breech, she would have no problem scheduling that c-section!!   Abby deserves the same dignity and respect as a health baby and I plan to get it one way or another.

My doctor told me to go and seek a second opinion from another doctor in the practice, since she will be away on vacation during the time that I am due!  She also said that if I were to pursue a c-section that I would need to get an approval from the c-section committee, of which there are four members.  What a bunch of #&@*^&*#!!  She told me to come back the next week and that we could follow up then.  NOT.

So my mission began.  To find another doctor. Not only within the practice but also in Boston.  I do not need this at 37 weeks of being pregnant.  But I am willing to do whatever it takes to give Abby the same chances and opportunities as any other baby.

So I wrote a very strong letter to the Chief of Fetal-Maternal Medicine in my doctor's practice.  I insisted on receiving a c-section for Abby.  I told her that I disagreed with my doctor's medical opinion and the delivery of her opinion.  I told her that she lacked compassion and understanding.  I told her that Abby is a daughter, a sister, a beautiful soul and that she deserves to be treated like any other baby.  Three days later, I had an appointment with another doctor in the practice who is also on the c-section committee.  She felt that medically since Abby is breech that a c-section is reasonable but still wanted me to caution her 'grim diagnosis'.  I demanded a c-section no matter what and she said that they would agree to it.  But I didn't feel validated or victorious.  I felt defeated still since they aren't believing in her and that worries me.  I want someone who can tell me that they will do all they can for Abby and me.  Honestly, I don't give a shit about their medical opinion of her diagnosis at this point.  I know all there is to know and so much more than they do!  I gave her copies of messages from my new friends in my support group.  I told her "these messages are from mothers and fathers of children with Campomelic Dysplasia as well as adults who have Campomelic Dysplasia.  These families and friends give me HOPE and if you read this, then it will give you some hope as well!".

In the meantime, an angel sent me a family with a four year old daughter with CD who lives in Massachusetts.  I've been in touch with them and they helped me to expedite my search for help in Boston.  I was on the right track, but their contact solidified the quest.  Thank you Hannah and Jon.

So, I've been in touch with folks at a Brigham and Women's in Boston and Boston's Children's Hospital.  I have appointments all day on Wednesday to get a 2nd opinion.  I am mostly interviewing them on how Abby and I will be treated.  I know that they are more than capable of doing c-sections and intubating babies, but I need to know that they will do whatever it takes to help us and not make us feel inferior to what is going on.

Sigh...I think I've said enough for now!  LOL.  Oh but on a lighter note, I finished working 3 weeks ago.  It was a great last day and I miss all my friends!  I can't wait to go and use my spa gift card that they all gave me on my birthday, this Saturday!  I have a massage, haircut, and pedicure scheduled and I am excited to get pampered!  I hope to look good for Abby's birthday!  LOL

Thank you all for reading!  I plan to update again soon!