Wednesday, April 21, 2010

Is it too much to ask?

From the outside appearance, I look like the average third trimester pregnant lady. I get the questions of when are you due, what are you having? Other moms, who I don't know, saying "oh, you have prom to look forward to and her wedding." It's really hard to just to keep smiling and say yes, that will be great. Some days I just don't have the energy to tell them that I will be lucky if my little girl makes it to term or how over the top I will feel if I get to take her home. I haven't even given it a thought about Reagan going to prom or getting married, my thoughts are just about her making it one more day. Although they don't know of Reagan's diagnosis, I must say it's nice that women share in the excitement of a woman being pregnant.
What's not so nice is when you go your regular OB doctors office and meet a new doctor and for some reason they haven't bothered to look at your chart, so they have no idea that our daughter has a fatal diagnosis. So they go along with the usual heart rate check (where hearing her heart beat is music to my ears and I that I am so fearful of the day that I don't hear it) along with measurement of my growing tummy (where I am normal according to the chart, but since the Doctor hasn't read my chart she doesn't realize that Reagan is two weeks behind in growth and that I am on the high side of normal for excess amniotic fluid). So for this Dr. everything seems great until I ask her if she has read my chart and if she is aware of Reagan having Trisomy 18. No, she answers. I then proceed to inform her what she should have already read.
Going to the doctors office is one place that I feel like I shouldn't have to explain everything over and over. It should be a safe place, a place where I don't have to pretend that everything is great. They should realize how hard it is to sit in a room full of pregnant women who are busy planning their child's nursery. They should know that I am not having a tough time choosing which shade of pink to decorate the nursery but instead choosing which dress I would want Reagan to wear for her funeral.
I am not asking them for sympathy, I am simply asking them to know my medical history, our daughter's diagnosis and to have a bit of compassion to what we are going through. Is that too much to ask?


  1. I had this exact same experience at my doctor's office. The same nurse I had every time would ask me dumb questions that she should have known not to ask and would have remembered had she bothered to even just glance at my chart. I was small for how far along I was because Whitney was extremely behind in growth. When I went in for a 3rd trimester check (looking less than 20 weeks pregnant), the nurse said "You don't even look pregnant!" Grrrrr. I wish they had some kind of system, like a simple sticker on the outside of my file to tell them that this is a difficult situation. Add to all those comments the fact that my doctor continued to offer to "terminate" our pregnancy despite our adamant refusals. AAARGH! Needless to say, I'm looking for a new OB if I ever get pregnant again. So sorry you have to deal with this. :-(

  2. I've been praying for you and sweet baby Reagan. May you enjoy each day to it's fullest - the joy of knowing God made her and knit her together in your womb. The joy of knowing she hears your voice and loves to be rocked by you. You are her mommy and you are doing your best job for that precious life that is growing in you right now. She is safe, secure, warm and loved - how special!

  3. Thinking of you tonight....I wish there were no questions or no strange silent moments. You are loving in amazing ways and your sweet Reagan knows it!

    I am so sorry you are having to face this. You are not alone!
    Sending love,

  4. The sticker or some kind of indicator on the outside of your chart is a good idea. I'm sorry some of your encounters have been with less than sensitive folks who haven't prepared themselves for your appts. - hope that doesn't continue.