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Saturday, August 21, 2010

in touch with reality

i can't sleep. for awhile i laid in bed and enjoyed being kicked by jedi.
but then my thoughts went back to our second ultrasound with maternal fetal specialists. our perinatologist, doctor koontz, is an attractive slim blonde woman and is professional, but very worldly. i think it's protocol at most places to offer termination as an option in cases such as ours.
so, back in june while we were at the lakehouse with family, chris and i ducked out for our appointment with dr. koontz. i had a list of questions to ask posted on my phone so i wouldn't forget. they were things like,
-how is the fluid (most trisomy babies come with alot of amniotic fluid)
-how is the brain(last ultrasound was inconclusive)
-how is the heart (again, last ultrasound was inconclusive)
-what does the baby's face look like(i wanted to prepare- the pictures of holoprosencephaly babies online are pretty drastic.)
and finally
-what about the feet and hands?(typically babies with tri13 have skin tag fingers, club foot, rocker bottom foot, etc.)

this list wasn't in order of importance. they were all important to me. these are things i just wanted to know.
so- after the sonographer left, doctor koontz began to tell us what she saw.
this is when we got the news of the devastating holoprosencephaly and tetrology of fallot- both things that i needed to google to begin to understand. so, after telling us these findings and again suggesting the amnio i went to my list of questions and began asking. she handled each question very professionally, i felt, until the last one.
the way she handled the last question completely baffled me.
"also, could we see the hands and the feet?"
she looked at me with a pained look- like compassion in a citrus juicer.
"that's really not important. what i mean is, there are enough other findings that make our diagnosis accurate, that the hands and the feet just don't need to be assessed."
"ok. but i just want to look at them."
she grabbed the wand and almost begrudgingly obliged. all the while pointing out what was wrong.
she then proceeded to encourage me to get a second opinion.
"there are other maternal fetal specialist in atlanta. or perhaps you'd like to travel to another state for a second opinion- there are other mfs offices in other states."
confusing. i just nodded and wondered why she was telling me all these things.
we were almost back to the lakehouse when i asked chris what that was all about.
why was she encouraging second opinions?
"she think's you don't believe her. she doesn't think you are in touch with reality"
my indignation was swept away in a flood of angry hot tears. i don't believe her???
i felt that she expected a different reaction from us. maybe she expected me to melt into a puddle of tears and beg for an abortion. maybe she took our declining an amnio as us burying our heads farther under the sand. maybe she expected chris to be angry and storm out of the room. instead she was faced with concerned parents who were just wanting to take a peak at their baby. to soak in the hands, feet, and face, knowing that these glimpses could be one of a very few that we get of our sweet babe.
i wanted to drive back to that office and tell her just how in touch with reality i was. i wanted to say "i am knitting a blanket that very likely will be my son's death shroud, and all i wanted to see were the hands and feet!"
i have an appointment with them on wednesday that i am highly considering canceling. the last appointment with her went alright. i just don't think i can summon the energy to handle these ultrasounds anymore.


  1. Her reality is that you are carrying not a precious baby, but a set of untreatable medical conditions and, gosh, you don't *have* to be, you could just end it all now.

    It's two realities in collision. I wonder if you are the first mom in her professional history to have continued on. She needs to be learning from you.

    Prayers for peace and wisdom as you decide about Wed's appt.

  2. thank you, monica. i wonder how hard her job is. she must be desensitized to all sorts of things by now.

  3. i keep thinking about your post. it seems like this doctor does not understand the true meaning of the word faith. she seems to be confusing faith with not being realistic. and your faith is so deep elizabeth, it truly is humbling.

    many prayers as you make your decision about the appointment.

  4. I think a heartfelt letter to this doctor, whether you continue with her or not, would be more than appropriate. Your charitable explanation of her failure to consider your beliefs and longing to relish each detail of your child would probably stick in her head (and heart) with ever future ultrasound she does. People are funny. We harden our hearts in ways we don't even realize until someone gives us a new way of thinking. Too bad that YOU are the one who could do that for her, but it does give yet another precious dimension to Jedi's meaningful life. Even if you do it years from now (because you won't forget this encounter), I'd encourage you to set your frustrations with her callous responses to paper. Doctors don't study medicine without having a desire to help people. They just get very lost sometimes along their professional paths. You already see that. Bless you.

  5. Elizabeth I agree you should write to her or write and leave a letter at the office for her. You could be the one that changes it for the next person who doesn't have as strong of Faith! The Mother sitting there that doesn't have the nerve to ask as her heart hurts for her baby!
    Another amazing way Jedidiah is changing the world!!!!
    Much love and prayer for your continued journey!

  6. Elizabeth, I've been reading through all your blogs today. This one really touched me. After Robbie passed away, the nurse helped me make an impression of his hand. I touch it and rest my hand in it every day. I really understand the sweetness and intimacy of seeing and touching your childs hand. It's so important. Love to you.



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