Monday, June 2, 2008

June 1998: Dark clouds on the horizon (long post)



Wednesday, June 3rd, having gotten the OK from Dr. Ob-gyn at my initial checkup, I called my travel agent to book flights "home" to visit my parents & grandparents. We planned to leave Saturday, July 11th. Dh could only stay a week, but I planned to hang around for another week & return home on July 26th. The flights cost us $945 (including taxes & fees).

Thursday, June 4th I took my first-year university roommate out for a belated birthday lunch. One of her other friends came along too -- I had met her many times previously at Roommate's house & didn't mind. She was pregnant too, although further along than me, & we compared notes.

Friday, June 5th, instead of going for amniocentisis (which I had cancelled), I got a manicure & pedicure. The next day, Saturday, June 6th, we attended an engagement party for dh's cousin at his fiancee's parents' home, not too far from where we live. The wedding was scheduled for July 3 of the following year (1999). I already had it planned in my head that we'd take the baby (who would then be 7+ months old) with us to the church ceremony, & ask cousin/neighbour from the other side of dh's family to babysit while we attended the reception in the evening. I even had my eye on a white eyelet dress at Baby Gap, should the baby turn out to be a girl.

(With these sorts of "should have been" visions fresh in my memory, the actual wedding was on the painful side. After the service, dh & I silently drove a few miles up the road to the cemetery where our daughter was buried & stayed there for awhile, contemplating the twists & turns of life. We arrived late at the bride's parents' home nearby, where they were serving lunch in between the service & reception (!). "What took you so long??" one of dh's louder-mouthed cousins yelled at us. We ignored him.)

For the engagement party, I had planned to wear one of the cute maternity sundresses I had bought, but it was actually quite chilly, so instead, I wore my navy floral palazzo pants, a sleeveless taupe blouse & my black blazer (which wouldn't button up, of course, but was warm on my shoulders). I was one of four pregnant women at the party. One was the bride-to-be's sister, another was her cousin, & the third was another cousin's wife, who was due in late September/early October. We briefly compared notes & she said she was having a lot of nausea & morning sickness.

(The engaged/now long married couple loves to entertain, & we've attended many events at their house, often with dozens of children running around their yard. Including, of course, three children who are now approaching 10 years old.

(At one such gathering, some months after losing our daughter, I found myself alone at the buffet table with the cousin's wife who was pregnant at the same time as me. She asked me how I was doing, & I said, "Fine." There was a pause, & then quietly, her gaze downcast, she whispered, "It must be so hard." I was stunned & paused, trying to think of what I should say -- and then other people entered the room, & the spell was broken. She never made an overture like that to me again.)

Tuesday, June 9th, day 122 of my pregnancy, I was back at the ob-gyn's for a checkup & the triple screen blood test. I don't remember much about that visit, except that the receptionist told me they would only call if the test results were abnormal (in other words, no news is good news). That afternoon, I called my travel agent & arranged payment for our flights home to visit my parents.

Friday, June 12th, I ran into the secretary for the chairman of the bank I work for. She had previously worked for another executive in an office adjacent to ours, so I knew her fairly well, & she congratulated me on my pregnancy. (After Katie was stillborn, she sent me a condolence note -- the very first one I received from anyone. I was incredibly touched that she would do that. She is the same age as me, if not a little older, had recently remarried, & has no children.)

Monday, June 15th, I picked up our plane tickets from the travel agent.

Wednesday, June 17th, we arrived home from work. There was a message on our voice mail.

I went cold all over when I heard the ob-gyn's receptionist's voice asking me to please call the office. I knew it could mean only one thing. The test results were indicating some sort of abnormality. There was something wrong with my baby.

I frantically dialled the number of the office -- and got THEIR voice mail. It was already after 6 o'clock. Why, why, WHY hadn't they called me at the office?? They had that number! They must have known I was at work during the day!!

The message on the office voice mail gave an emergency number. I called it. I was told sorry, they didn't have access to the doctor's files, & I would have to wait until after 9 the next morning to speak to him. I called back to the office & left a message on the voice mail.

Dh & I both spent a very sleepless night.

The next morning I left another message on the voice mail as soon as I got into my office. When the receptionist finally returned my call, she said she HAD tried to call me at work. I asked at what number. She read it to me. It was one digit off. Figures.

She told me the results were back. The good news was that my risk for a baby with Down's syndrome was that of a 34.2 year old -- in other words, less than normal for my age.

However, according to this test, my risk of having a baby with spina bifida was higher than normal for my age. The norm was a 1/125 chance; the results indicated the likelihood was 1/85.

She told me the doctor was in surgery that morning so I couldn't talk to him right away. She asked me to come into the office for a second test, since there was a high likelihood of a false positive (I went in later that afternoon). She said they would likely send me for genetic counselling (again?) & watch the results of my upcoming ultrasound closely.

That night, I noticed brownish-yellow discharge again, for the first time in three weeks.

Sunday, the 21st, was Father's Day. I don't remember much about it, but I'm sure I gave dh a card, & my calendar notes indicate we went to church & then to the movies to see "The Horse Whisperer."

Tuesday, June 23rd was my ultrasound (the second one of my pregnancy, if you count the early one I had in April). She took a long time, doing measurements, & switched on the sound so that I could hear the heartbeat. She also gave me a photo (the one at the top of this post). I treasure it, because it turned out to be the one & only photo from five ultrasounds during my pregnancy. Whenever pregnant women had shown me their ultrasounds before, I'd never been able to make out the body parts, but I could see the baby's profile clearly here. (I made a photocopy & stuck it in an anniversary card for my parents, writing, "Hi Grandma & Grandpa!!" underneath. My mother called to say thanks, but she couldn't make anything out either, lol.) I asked the u/s tech whether she could tell the gender, & she said that she couldn't be 100% certain, but she didn't see any parts that would indicate a boy.

Back downstairs to Dr. Ob-gyn -- who proceeded to burst our bubble. (I made notes from our conversation when we got back home.)
He said he couldn't tell us for sure that the baby was OK -- but he also couldn't tell us for sure what, if anything, was wrong. On the one hand, the ultrasound did not show any signs of spina bifida. On the other hand, the baby was smaller than normal & so the technician was not able to see as many details. I was about 18 weeks along, but the baby was measuring behind schedule, at 15 weeks. The amniotic fluid was low. There was something -- a spot or a mass on or beside the placenta. It could be a tumour (oh, lovely), it could be a clot. (There was a small calcified clot on the placenta after delivery.)

The baby also had an "echogenic bowel." It showed up bright on the ultrasound. In 90% of cases, this turns out to be nothing -- but it could mean one of five things. Our baby could have cystic fibrosis. It could be an infection of some kind. It could be a blockage of some kind. It could be a marker for Down's syndrome. Or it could be ingested blood. (This made sense to me, since I had spotted all through my first trimester.)

He was sending us back to the hospital across the street to the Prenatal Diagnosis Unit, where we'd had our genetic counselling session in May, for a consultation with Dr. Geneticist tomorrow.

As we left the hospital, it was raining. We ducked back inside to buy an umbrella at the gift shop. I can remember huddling under the umbrella outside the hospital & clinging to dh, near tears. "I just wanted a healthy baby," I whispered. "I know," he said, just as miserably.

Later, I pulled the ultrasound photo out of the envelope to look at it. The u/s tech had typed in a caption: "Hi Mom & Dad!" How, I wondered, could there be anything wrong with something so cute??

Back at the office, my boss greeted me, beaming. "Well?" I tried to smile, weakly. "There's a couple of things they want to check out, I'm going in for more tests, " I said. A look of shock spread over her face. "Oh no," she whispered.

Later that night, our carbon monoxide alarm went off. We wound up calling the fire department & waiting for them out on the porch, while curious neighbours peered out their window. They found no trace of CO. Our nerves were already shot, & this wasn't helping in the least.

The next morning, I called Dr. Ob-gyn again to clarify a few points & ask some more questions. Late that afternoon, dh & I left work early to meet with Dr. Geneticist, the unit head, a very kind and reassuring man, who sent us for more bloodwork (which ultimately ruled out cystic fibrosis or infection). We learned that the results of my second triple screen test were back & they were better than the first one. Nevertheless, Dr. Geneticist recommended an amniocentisis, to rule out any genetic problems. Reluctantly, I agreed. We made an appointment for that Friday, June 26th -- day 139 of my pregnancy.

Thursday morning, June 25th, I called Dr. Ob-gyn's office again. I thanked the receptionist for the referral & said Dr. Geneticist was able to answer most of our questions. I told that we were supposed to be heading out on vacation in a couple of weeks. Should we cancel? Play it by ear?

She consulted with the dr & told us we should think about rescheduling, because we needed to be available "in case of adverse results." I didn't want to think about what that might mean. I called our travel agent & asked: what if we had to cancel?

Well, our tickets were non-refundable -- and we had not purchased cancellation insurance (uh oh!). She said we could cancel now or the day of the flight. However, we could rebook for the face value of the tickets for up to one year later, plus pay a penalty of $107 per ticket -- and a $25 service fee. Well, it was better than totally throwing away $945. I told my boss that I would be taking the next day off for the amnio, & that there was a change in my vacation plans.

Coincidentally, I ran into the only other pregnant woman in the office that day -- due a month before me -- and she asked me that day how I was doing. I confided to her that my ultrasound had found some anomalies & that I was having an amnio the next day. She told me (almost as if she was trying to make me feel better) that she was also very nervous because she thought she might be leaking amniotic fluid. (Her daughter was born healthy in mid-October.)

Dh & I both took the day off work for the amnio on Friday, June 26th (pregnancy day 139) at the hospital where Dr. Geneticist practiced, across the street from Dr. Ob-gyn. We drove into the city, & it was a stifling hot, hazy, humid day, with both air quality & humidex advisories issued by Environment Canada. The hospital was a patchwork of buildings, some of them very old, & we had to wind our way through a rabbit warren of hallways to find the amnio clinic.

I don't remember a lot about that day. I remember they did an ultrasound to see where the baby was positioned, & I saw the baby wave its arm, as if it was waving at us to say hello. I tried not to look as the doctor got the needle ready, & then plunged it into my stomach.

I gasped, & then burst into huge, wracking sobs. "Oh baby, I'm so sorry. Mommy is so sorry," I sobbed, over & over again.

Dh squeezed my hand tightly & whispered in my ear. "You're doing great! Everything's going to be OK." I felt an overwhelming wave of love & gratitude toward him at that moment.

The doctor withdrew the needle & held up the vial full of amniotic fluid for us to see. It was amber coloured, with brown flecks in it.

I was escorted into a recovery area equipped with several lazyboy style armchairs, & sat there with my feet up. People came & went like it was no big deal, but I was there for more than an hour. The nurse was kind & told me to take my time. I I felt totally drained.

We left with an instruction sheet (no baths, etc.). Back at home, my mother called twice. The first time, she was crying, asking me if I was OK. She hadn't wanted me to have an amnio. (I didn't want it either, Mom.) My sister-in-law also called to see how I was. I spent the entire weekend on the couch watching TV (I vaguely recall watching an old Abbott & Costello movie -- something light!). I remember that my stomach muscles felt sore, just like your arm would feel sore after having had an innoculation.
There was nothing we could do now but wait for the results.

When I came back to work on Monday, June 29th my office best friend/cubiclemate had left for a week's vacation, but not before leaving me a note (which I still have): "Hi Lori -- Hope all went well on Friday. See you in a week." She signed it with her initial & a smiley face. An omen? I could only hope.

20 comments:

  1. I can make out Katie's wee little ear - she looks so perfect.

    Hugs.

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  2. Wow, loribeth. That seems so stressful, especially knowing where it is going. I can't believe you can remember so much detail (although i think you referred to having your calendar before).
    Staying tuned for next installment...

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  3. Hi, I've actually lurked here for quiet sometime. Thanks to NCLM, I'm delurking to thank you for sharing this.

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  4. Man, these vivid vivid details haunt us for years, don't they?

    Katie looks so cute. I am glad you have this picture too.

    Thank you for sharing your story.
    g

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  5. What a gorgeous picture. Thank you so much for sharing this story with us.

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  6. This must have been such a scary time for you. I am so sorry.

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  7. Oh God, I hate this -- the perfect picture, the echogenic bowel where they discount a bunch of stuff . . . it's all too familiar and I just wish I could go back in time and throw myself in front of the bus for you.

    But like others said, it's a gift that you can relate as much as you can and share it with us. I know (believe me) how much it sometimes hurts to write these things, knowing exactly what lies around the corner.

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  8. It's easy to see how days like the ones you describe here continue to carry so much emotion, the memories burned into your very being. So much expectation, hope and promise ... wishing you peace. You've already proven you're a very strong person.

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  9. Lori, I wish I could give you a hug. I wish a hug could make it better. Beautiful Katie, I'm so sorry.

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  10. I wish I had your recall of things past. I feel so transported - I'm there with you back in 1998, holding my breath, wishing a different outcome for you...

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  11. I am here from NCLM and I am so sorry for your loss. I am coming to terms with the fact that my DH and I will most likely head down a path of childlessness (not by choice)....so hard.

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  12. It must be so hard for you to rehash such a painful part of your past. I hope it helps you to heal!

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  13. You have me hanging from the seat of my pants...returning an NCLM visit and now I have been drawn into your story...your writing has really pulled me in, and I feel like I am there with you, 10 years ago.

    It must be so difficult to share, but there is great benefit in sharing, for others like us to understand...and I hope in some way it is a healing for you as well.

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  14. Thank you for sharing. I cringe at the thought of you enduring those tests and not knowing, and then knowing that the story doesn't end well. I'm so sorry. I am glad I got to see the u/s.Thank you.

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  15. hi Loribeth
    I'm here from NaComLeavCom
    Gosh your story is quite similar to mine in some respects.
    My heart goes out to you.I am so sorry for the loss of ~Katie~.
    Memories are all we have and being the 10 year anniversary -it's quite significant. Well any year is.I read a little of your archives and I know the ending.So unfair.
    I lost my daughter Charlotte in 2004 , I was 38 and six months pregnant I found out by ultrasound.
    We had been trying unoffically 12-13 years too.We had previously adopted in 1994.
    I won't pull any punches my story
    ending with our IVF blessings. I just don't know what else to say.
    My Little Drummer boys
    warm regards
    Trish

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  16. I never knew how much I'd treasure the ultrasound pics. I can make out Katie's profile perfectly. What a beautiful thing for the u/s tech to do by adding that message.

    You have an incredible memory, Loribeth.

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  17. What a wonderful picture. Thanks for sharing it. NCLM

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  18. Here from NCLM.

    I'm literally sitting here crying from this post - knowing how it ends, even without it, it's truly heartbreaking.

    She looks beautiful in that picture.

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  19. reliving this can be so hard. and the significance of these anniversaries (or sad-iversaries as lori called them) never seems to subside. thinking of you.

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