I don't count

The HER foundation contributed letters from our forums members for a show that featured Hyperemesis as a topic. The show aired in April of 2007.

Moderator: annmarie

I don't count

Postby IslandDreamer » Feb 28, 2007 2:09 am

Dear Dr. Phil and staff:

Thank you so very much for doing a show that discusses Hyperemesis Gravidarum. As you can tell from the many letters posted here, this disease and its victims have never been given attention in the national media. We are all very grateful to you.

For me, HG is tied up with loss and death as I’ve miscarried three of my five babies. HG is tied up with Post Partum Mood Disorders as I've suffered PPD after four pregnancies and psychosis after one. HG is tied up with trauma and PTSD and anger and isolation. And HG has become community in the form of the HER Foundation, these forums, and the members who supported me through the loss of my baby, Hope, and the birth of her little brother, Jack.

It is hard to separate any of the complications and outcomes of my pregnancies. And it is hard for most people to even follow my story. Why would they want to? Not a single pregnancy was joyful; in fact, all of them were frightening and filled with depression and loneliness. No one wants to hear a story like this. My childbearing years can be summarized in a list of complications and tears: Pregnancy x 5; HG x 3; PPD x 4; PTSD x 3; loss x 3; and living sons x 2. The last part of the equation is the only joy in pregnancy and motherhood, and for my two boys I am beyond grateful. But today you give me a chance to share my experience with someone who may actually have a desire to hear what I am saying.

My first pregnancy ended in 1st trimester miscarriage and a case of PPD that was not diagnosed as PPD due to my denial of that child. I really thought I could escape hurt if I pretended nothing happened. My third pregnancy was much the same: I knew something was wrong from the moment I knew I was pregnant. This baby died, too. Neither pregnancy led to Hyperemesis, but both resulted in complications of some sort in addition to the loss of two children, Jonathan and Lily.

My oldest living child, Christopher, was born in July 1999; his was my second pregnancy and first case of Hyperemesis. I prayed and prayed not to miscarry, and I thought getting sick was a good sign that my baby wouldn't die. Little did I know that the sickness to come was actually a risk to my child's life AND my own; little did I realize that my diagnosis would increase my odds of loss, that one in three HG babies does not survive to term.

When I repeatedly called the nurses at my obstetricians office (between weeks 5 and 10) saying I couldn't eat and kept throwing up, I was told, "Everyone gets sick, dear." I believed them (or tried to) and wondered how my friends hid this debilitating nausea and vomiting from me until I was 32 years old. I assumed I was physically and mentally weak since my friends survived pregnancy without complaint, so I tried to "buck up." The vomit didn't stop. I went days then weeks with only a popsicle staying in me if I was having a very lucky, very good day. Still I believed the triage nurses, though I knew on some level what I was experiencing couldn't be normal. Maybe I just wanted to believe them. They continued to tell me nothing could be wrong, that vomit was a good thing in pregnancy.

At 10 weeks of pregnancy, I had my intake appointment and was told about Unisom and B6. It was also suggested that I "get a good chapstick" for the peeling skin on my lips. No concern for the obvious and outward signs of dehydration, just advice about beauty products. Immediately, I started taking the doxylamine succinate and B6, without information on dosage or warnings about possible side effects or any safety information, but I was desperate. That night, I ate a cracker without throwing up. I cried to be able eat a cracker.

By week 13, I was desperate and calling the triage nurses again; I begged to be admitted to the ER. It was becoming ever clearer that I was not like my friends who were spitting out babies without carrying a spit cup for the Ptyalism. (I was so thrilled to learn there was a name for the excessive salivation and that I wasn't just gross.) After several frantic calls over a week, I was told, "call back when you can't keep anything down for 24 hours." My response, "That's easy. What time is it?" It was 8:01 am. "Fine," I said, "I'll call back tomorrow at 8:02." Even naive me knew three well-timed popsicles in a week were not enough for a woman entering the second trimester of pregnancy. I'd been puking up nearly everything for more than 7 weeks.

I called back at 8:02 the next morning and was given authorization to go to the ER. The ER staff asked for a urine sample, which I couldn't produce, ran some bloodwork, and basically freaked. I still don't know what they saw that day, but I do know they wanted to admit me immediately. Given my circumstances at the time, I begged for an alternative and was offered home healthcare if I agreed to take at least two weeks off work. Thus began my rotating heplock and first experience with IV's, roly polies, vitamin infusions, and Hyperemesis Gravidarum. To this day, I have no idea how much weight I lost in the weeks of untreated HG.

Never again. I said to my husband, never again. I survived that first bout with HG only to end up with PTSD, PPD, and psychosis. We were done. I was done. Then came baby three lost in miscarriage, Lily. Not six months later, I was pregnant with Hope. HG hit as it did with Christopher, at 5 weeks 2 days. I was furious, depressed, and sick, so much sicker than I'd been with Chris. My doctor prescribed Zofran, 4 mg twice a day; it did nothing. I was in and out of the ER for IV fluids, thinking how great my doctor and I were for being proactive and having a standing order for me to be admitted whenever I thought necessary. At the very least she was compassionate even though her knowledge was limited, and I was offered only three medications: one didn't work, one caused allergic reactions and auditory hallucination, and one caused cramping worse than the nausea.

I was beyond miserable. I just lay in bed, unable to sit up, to even listen to television, or open my eyes for fear of light starting another vomit cycle. I couldn't parent Christopher, and I hated my husband. It wasn't long before my husband's thoughtful, "Can I get you anything?" started getting responses like: "Yes, a gun" or "a gun to the head and pull the trigger--I'm too tired to do it myself." I prayed to die. I prayed the baby would die. I asked for an abortion, which the doctor refused to do.

I was in a primitive battle with my own child, and I was willing and wanting to kill her to insure my own survival. Then she did die. And the unrelenting, raw ache in my chest began. I wanted to die, too. I was no longer suicidal, but I wanted to be with her and was beyond reason and inconsolable for months. HG continued despite her death, and I was ill for four more months, though symptoms eased with each day. What I had thought was the worst thing in the world, HG, was trumped by grief and the death and birth of my precious Hope. She was beautiful...tiny fingers, pointy nose, big ol' head like her brothers. We did see her, we did hold her, and we did have her remains cremated.

I was at the end of myself in a way I never thought possible. More and more days, I couldn't get out of bed for the pain and sorrow that swallowed me were beyond anything I'd ever experienced. I pleaded with God, I raged at Him, and I held tight to Christopher, who was my only reason to keep on living. Hope was miscarried at 12 weeks in May 2004 and is my second case of HG.

Jack was born in December 2005 and is the third and best managed case of HG, but I am still dealing with recovery, fighting nausea, and being medicated for PPD 15 months after his birth. Recently I stopped struggling with other common (and less scary) complications that tend to accompany the depletion of HG: Restless Leg Syndrome (RLS), symphysis pubis dysfunction (SPD), and hair loss.
My pregnancy with Jack is chronicled on these forums, and pictures of my medications do a better job than words: Image (This board was made for the September 2005 briefing in Washington D.C. during the "best" part of my pregnancy; shortly after doing this, the Zantac and Tums became necessary every day, as in first trimester, and the fourth Zofran was used more and more frequently as I approached 40 weeks.) I ate a limited diet in second and third trimester, foods not even close to nutritious or balanced. Even with what I believe to be the best care available in my area, I have concluded that I needed more, that perhaps my postpartum recovery could have been promoted during pregnancy with a better level of nutrition or IV supplements. Who knows?

It is the women and men of this Foundation, Kimber in particular, who supported me after Hope's death, who helped me weed through Christopher's pregnancy and postpartum period, and who dropped their jaws with my announcement about Jack. They were right there when I resolved to survive my fifth pregnancy through preemptive medications, aggressive treatment, and medication for perinatal depression. I was determined to love this child in a way I never loved his sister during pregnancy, and I was going to live to raise his older brother, but I was just as certain my fifth pregnancy would have a heartbreaking outcome. Blessedly, Jack arrived healthy and alive, and to me, both are shocking miracles. These forums are home now; these women you are meeting at the taping are my sisters; this community is the best place I never wanted to need.

I now realize that refusing hospitalization during my first HG pregnancy would actually cause me to be among those HGers who don't count. (The CDC only tracks data on HGers who are admitted as inpatients.) Despite three diagnoses with Hyperemesis Gravidarum and all I've shared in this letter, I am not among the national statistics on HG. It shouldn't be so hard, so painful, so debilitating to become a mother.

Thank you for counting me today.

Sincerely,

Suzanne Morley
Survivor
Moderator: Grief, PPD, and 1st Trimester HG
Last edited by IslandDreamer on Mar 06, 2007 11:16 pm, edited 6 times in total.
IslandDreamer
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Postby stephensmam » Mar 01, 2007 2:53 pm

suzanne
Im so very sorry for all you have been through you are a very strong woman
lots of love and hugs Jacqueline
HG pg no 1 28/04/98 darling son Stephen ivs only,pnd
HG pg no 2 01/09/04 darling daughter Sarah ivs , zofran, steroids, meclizine, b6.http://lilypie.com/Kids_Birthday_code.p ... y_code.php#
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Postby Princesshood » Mar 01, 2007 3:26 pm

[quote] This community is the best place I never wanted to need. [end quote]

I loved the way you put that.I feel that as well.
I'm so sorry for your loss.
:hugs: Sara
Image
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Jak, Angel Baby since August 2006

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Princesshood
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