Wednesday, January 26, 2005

A Bad Day, Remembered

Maybe I am a little touchy because it was a year ago today that we first heard the words , "I'm very worried about this baby".

I was in the hospital with T. and my mother to get a detailed ultrasound so we could get the ok for my OB to perform an external version on Peanut to turn her head down and avoid a C-section. We were excited, because we knew there was a chance that the ultrasound would show that the placenta was not working efficiently and so it would be necessary to deliver her right away (we didn't want it to not be working right, but we'd known for a while it was possible and any excuse to see her sooner was a good one at the time). I had pre-eclampsia, but as far as we knew there was nothing wrong with Peanut. She was very still inside during the ultrasound, which wasn't unusual for that time of day. After the scan, the technician asked me to go and see if I could wake her up so they could get a better look at some things when the doctor came in. She never let on that she saw anything unusual.

The doctor arrived, and started scanning. For the next thirty minutes, he didn't say a word, until he turned and said, "I'm very worried about this baby". He then said, "she's got a clubfoot, but that's the least of our worries". Stunned, none of us could say a word, and he gave us a change to collect ourselves and meet him in a moment in a conference room. There, he proceeded to list all of the defects he saw during the scan: clubbed foot, abnormally short umbilical cord, abnormally short arms and legs, cloverleaf skull, no fetal movement for more than an hour, fixed arms, abnormally small ribcage with a heart taking up more than half of the ribcage. He said he couldn't be sure without an amnio, but it appeared we were looking at thanatophoric dysplasia, an almost uniformly fatal chromosomal defect. If it wasn't that, it was something similar, and her defects were 75 to 80% "incompatible with life". Her lungs wouldn't have developed enough for her to be able to breath once she was born, even with a ventilator. If she did live, she would be severely disabled, and unlikely to survive her first year, which would probably be spent in the hospital. He said we need an amnio to be sure what it was. I nodded my head while my husband squeezed my hand and my mother shredded her tissue. Peanut was hiccuping away inside at this point, practicing the breathing she apparently would never get to try. We went back into the exam room, and I cried silently while they stuck the needle into my belly. My OB arrived, and she looked horrified--never a good thing to see in your doctor. She prescribed me some sleeping pills (no need to worry anymore about the baby getting drugs, right?) and we went home. The pills didn't work.

The next few days were a blur. We saw the geneticist, who told us he thought her survival odds were a little better than the first doctor said, but not by much, to not have false hope. He said her best case scenario was that she would be a dwarf of some kind, which to us was not a problem as long as she was alive. He said this type of problem was his specialty, and that he would come in for her birth if possible so he could help the pediatricians, because this was such a rare disorder--and most babies with it are miscarried. We needed to decide what we wanted them to do--how many invasive medical procedures we wanted them to try, what "comfort measures"--i.e. morphine--we wanted them to provide her. Though we had planned an early delivery because of the pre-e, he wanted us to try and delay the birth because every day inside was one more day her lungs had to develop.

We had to call our families and friends. I talked to my father about burial options. My husband put every item related to baby in the nursery and shut the door so we couldn't see it. I heard him in there, sobbing. That's pretty much what we did for the next week. The amnio results came back. It wasn't thanatophoric dysplasia, but that didn't mean it wasn't another kind of lethal skeletal dysplasia. Then, eight days after the ultrasound, my newest labs came back--my pre-e was escalating, and the OB couldn't in good conscience allow me to continue to be pregnant. She wouldn't sacrifice me for the small amount of help another two weeks would be to Peanut. I waited for T. to drive back from work in Chicago, and we went to the hospital. Peanut was born by C-section the next day.

And the rest is a story for another day. As you can see by her pictures and the rest of this blog, it turned out to be the happiest day of our lives. She is currently lying on the bed, studiously shredding a catalog, and humming away. I know how truly blessed I am.


Stacey said...

(((Carrie))) How well I remember finding out what you and T were going through.... and I also remember very well the elation I felt that day I talked to T and he told me Peanut was doing so well! As I read your recollection of that very difficult time I got a huge lump in my throat... I am so happy that little Peanut is here and thriving. (-: More Hugs to you my friend!

elswhere said...

Carrie this post brought me to tears. I had no idea you'd been through all that; just that Peanut has some developmental delays and other issues as you discussed a bit in your comment below. I'm so glad she's here.

Also, thanks for your post expanding on your dooce comment. I hadn't seen the comment and went back to dooce's photos to read it, then read your post again. I'm sure I've been one of those people saying flip and insensitive things-- if not to you, then to someone else. I'm grateful for your generosity and patience. (That sounds so stilted, but it's true, and I can't think of any more eloquent way to say it.)

Jen said...

I will never forget trying to find the words to ease your pain and take away the hurt when you guys called with the results of that ultrasound. I remember calling my father to make arrangements for our little girl so we could come be by your's and T's side after Peanut was born, and he shared some of the most wise words he has ever told me. He told me that with all the love, attention, and prayers that little baby was receiving, that no matter what, she will always be the happiest little girl.

I was so very scared to come see you in the hospital, because I didn't want you to see me cry. I didn't want to cry, much less in front of you, since she had survived the birth and seemed to be doing well in the NICU. I figured you were already emotional enough, and the last thing you needed was a big crybaby on your hands. After we spent 10 minutes scrubbing up, and we got to enter the NICU to see Catie, I can honestly say that not a single tear came to my eye. She was beautiful, and perfect in her own way. She seemed so very happy - with this little soft smile on her face. I remember thinking my dad was right - she was going to be showered with so much love and attention, that she would be able to overcome any disabilities. I still feel that way.

Anna said...

I will never forget that day when I read your post on C's ultrasound and all of these worries they had. I hardly knew you then but I remember crying and crying, and being SO ANGRY that no one had seen anything before, and you were so close, only to hear this. I still don't understand how they saw what they thought they saw. When she was born and LIVED and was her sparky self I cried again, for all of your sakes. Since then I've been so glad to have you has a friend, and I can't wait to meet you and your little miss for real someday.

Carrie's Mom (and damn proud of it) said...

...and let's not forget that your brother, refusing to accept the situation, walking away from me as I tried to explain, said "Doctors make mistakes." and "Miracles happen." - the only comments he would make on the subject.
In the recovery room I told you that, for the first time in his life, you would have to tell him he was right.
You can understand now, I think, that my crying was more for you than for Peanut - you're my Peanut - and there's no pain worse than your child's pain.
She's only the SECOND most beautiful girl in the world.

Zelda said...

Carrie, I will never forget when Bao gave me that awful news. Jen had called him and he called me at work right away. I felt so horrible about it and I remember praying in total desperation for her to be ok. I'm not arrogant enough to think that it worked or anything, but when Jen told me things were much better than expected, I just don't know when I felt so happy.

I know illness and disability are difficult things to bear when it is your own child, but I don't know anyone who could rise to the occasion with more strength than you and T.

And Peanut is adorable by the way (like you don't know). We still look at her picture and Gwennie and Emma just fall all over themselves when they see it. They love babies.

Anyway, I hope you are doing well. Isn't blogging fun?