Tuesday, August 03, 2004

Roxanne

My best friend in the whole world, Anne, asked me to be at her birth. This is 1985. I had already been to a couple other ones and was fresh off my UC to Meggie in 1984. I was delighted to fly from Tacoma to Orlando and remain for 3 months and wait, leaving behind a cheating husband and a failing marriage for awhile.

Anne looked small during the pregnancy and, despite meds, she had hyperemesis gravidarum. Knowing Anne, I knew the hyperemesis was not an in-your-head thing because she is the least hypochondriac person I know in the world. She didn't even complain about it until she was so ill she was fainting. After being hospitalized for nutrition and fluids, she was released on meds to quell the nausea and vomiting. Her baby was still very small; she barely showed her pregnancy until the 9th month.

When Anne went into labor, I had worked hard to brainwash her. Tried to get her to have a homebirth, but she adamantly refused, but had a great doc who was doing births in his office and she worked at the hospital where she was delivering, so it was all cool for her. I learned to not be so hauranging at this birth. laugh

Anne called and said her water broke and she was going to the hospital per instructions. I shook my head and told her it was too, too early... she should stay home if she wasn't having contractions. She said her husband Kenny (another lifelong friend) was nervous and was driving her to the hospital. I said I was on my way.

When I got there, Anne was gowned and sitting up in the bed. I said, "You're 3" and she retorted, "I'm TEN and they are waiting for me to push!" I almost fell over. Her water had broken less than an hour earlier and she was sitting there in no pain. I was just stunned.

When she began grunting, the doc came in and within 5 minutes, Roxie was born. We all wept and it was delightful! Roxie weighed about 6 pounds... small, but decent-sized.

Roxie did not want to nurse. I was becoming a La Leche League leader at this point and was a major nursing mom to Meggie... very militant. I worked my head off to get that baby nursing. Once home, we worked non-stop... it was incredibly frustrating! I called my LLL leader in Tacoma (Marie Foxton, my mentor!) and she suggested, after 1000 other things, that I try nursing Roxie and see what was happening.

When I put Roxanne to the breast, it was like nursing a butterfly! Her suck was almost non-existant... she could barely latch and had even less suck. I memorized that sensation and can feel it even now, 19 years later. Within a week, Roxie had lost over a pound and was put on premie formula. I offered to express, but Roxie was losing weight so fast, Anne chose the formula (I believe she chose rightly, but I would have done both).

Soon after Roxanne's birth, I had to go back and face my failing marriage, got pregnant with Aimee and subsequently delivered her one year to the day of Roxanne's birth (April 20 for both girls). We moved to Frankfurt Germany 3 months after Roxie's birth. I met Sarah (my partner/spouse) in Frankfurt when Aimee was 2 days old at a La Leche League meeting.

So, without the Internet and having to talk on phones across the ocean and being rather money-challenged, Anne and I didn't talk much. She was busy, but mailed letters when she could. Once Aimee was born, I talked to Anne who told me that something was wrong with Roxie, but no one knew what yet. She hadn't rolled over front to back until she was 8 months old (!!!) and the pediatrician had reassured her that that was normal. Roxie being her first kid, she bought it (didn't know the difference) and let it slide. Her mom, a nurse, kept telling her something was wrong, but the ped was reassuring, so it went much longer than it should have.

By the time Roxie was a year, she was in The System and starting to be tested. A huge battery of tests couldn't find a cause for her developmental delays and eyes that bounced all over the place, but, through discussions with the genetic counselors and specialists, two probably causes were found:

Hyperemesis Gravidarum (incessant vomiting)
Toxoplasmosis (a parasite that is often found in cat feces)

Anne had several cats... I think 5 at the time... that were outdoor cats and constantly brought home "presents" of birds and rodents. Most people who have cats their whole lives are already toxoplasmosis-immune (the infection manifests mildly like the flu), but rarely, it doesn't kick in until later in life... in Anne's case, probably during Roxie's pregnancy.

Toxoplasmosis is horrible when contracted in pregnancy and why caregivers ask about cats and gardening during the first prenatal visit. Here is one link about toxoplasmosis:

http://www.womens-health.co.uk/toxo.htm

Roxie looked perfectly normal as a newborn until about 2.5 years old. Then, her facial traits began changing and by the time she was 4, she looked profoundly mentally retarded. I have not explored the mechanism behind facial changes after the birth, but find it fascinating that a child that looked absolutely normal for 2.5 years, now looks extremely retarded; it is obvious she is mentally challenged just on looks alone.

Roxanne did not roll over until after 8 months. Sat up at 2.5 years. Walked like a toddler at 4.5 years. Didn't speak until 6 and still speaks as an 18 month old. She didn't learn to use a potty until she was over 7 and still wears diapers at night. She is 19 years old.

Roxie walks, runs, and laughs a lot. She has some anger and is known to bite. She is fully integrated into the family and has been in therapy since she was 18 months old. She loves paper and folds all the time. I joke about teaching her origami so she can be wealthy. Anne has to hide plastic bags from her, too, because she loves their crinkling. Reams of paper disappear as Roxie finds it and folds, folds, folds... she keeps stashes of paper like an addict hiding her drug of choice. Because of the therapy, she signs more than she speaks, but Anne and the family (now 4 kids total and dad) encourage speech and it works.

Roxie and I adore each other; she loves my kids, too. We lived with Anne for years when I was disabled... Her three kids (at the time), Kenny, Anne, me, my three kids, her 5 cats, my 2 cats, 2 other kids and their father out in the garage, and ONE bathroom. It was amazing! Anne would never turn us away and I have needed her a million times in my life; I can only pray I am a source of strength for her, too.

I will write separate stories of Anne's other births. I was there for her 4th baby, LeeAnne (Lee Lee), 7 years ago.

What did I learn?

* I learned that when I think something is wrong, get it checked out sooner than later. Not that anything beyond therapy could have been done, but at least the information would be out there.

* I learned to be more gentle about bottle feeding... that sometimes it saves lives. Roxie would have died a natural death in another day and age. She was nursing as she was because her genetics didn't want to stay on this earth.

* That when a mom says, "I want to go to the hospital" to listen to her even if I think it is too early.

* That when there is hyperemesis, to be more aggressive with meds and nutrition.

* To test a woman with cats for her toxoplasmosis titer at the first blood draw.

* That women can have painless labors and births (some call them "silent" labors). Some women have painless labors despite zero preparation or meditation or visualization trying to manifest the same. It was a moment of clarity that sometimes thoughts do not create reality after all.

* That sometimes women don't whine or complain like me and I need to listen harder to what they are saying.

* That sometimes docs are as clueless as the untrained eye. When in doubt, find another eye.

* That sometimes the person closest to God is handed the most shit on a plate and I gather strength from witnessing the pressing on of a life saddled with hardship and pain. (Anne's husband Kenny is now totally disabled after a heart attack and then hospital-induced infection that caused pneumonia, heart failure, strokes, and months of fevers and over a year of hospitalization. Anne never stopped for a second... kids to soccer and cheerleading, Roxie to Special Olympics, Lee Lee to tee ball, and they visited Kenny every single day for over a year. I do not think I could have done all that. Anne is more inspiration to me than she can ever understand even though I try and tell her... she laughs and blows me off. It is just life to her. I believe she is a Saint!)

No comments: