Myasthenia Gravis and Me ~ A Mom

Myasthenia Gravis and ME...A Mom

Are YOU a mom with MG? Know someone who is? Please check out my new Yahoo! email group, called MG_Moms. Let us share our experiences, concerns, and joys with one another! Visit the website at http://groups.yahoo.com/group/MG_Moms/ or send a subscribe email to: MG_Moms-subscribe@yahoogroups.com.

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Proud Mommy with 2 wk old baby Chloe Sue

MsApril27's Myasthenia Gravis Homepage

Hi, My name is April Collins Hartley.

I'm a 32 year old married mother of two, and I have a rare neuromuscular disorder. I wanted to write this webpage to share my information with others diagnosed with this illness or touched by a family, friend, or loved one who is. I especially wish to share my thymectomy experience with those out there still considering the procedure and unsure of which road to travel. I hope you enjoy this site.

MY HISTORY

I was diagnosed in June of 1998 ago with a rare neuromuscular autoimmune disorder, called Myasthenia Gravis. MG cause weakness in various voluntary muscle groups, including the eyes, smiling, chewing, swallowing, facial expressions, breathing, and arm and leg strength. The more a particular muscle is put in use, the more antibodies the body makes that interferes with the transmission of messages sent from the brain to the muscle at the neuromuscular junction.

I had never heard of this disease, nor had anyone I knew. Even the neurologist that diagnosed me didn't feel qualified to follow a myasthenic, so he referred me to the MDA, which researches and treats this disease along with 39 other diseases.

I had BIG questions regarding pregnancy, breastfeeding, childbirth (as I become pregnant one month following diagnosis), as well as questions regarding the various treatment options. I sought out expert advice from all over the Internet, and though hard to find, I was successful in getting some satisfactory answers. It was important that I kept looking, however, because some info out there is not accurate (WebMD offers disappointing outdated info on breastfeeding and MG).

I was fortunate enough to stumble across an uncommon version on a pretty standard treatment option for individuals with MG, called the Submammary Transternal Thymectomy. Traditionally, this procedure is performed "open-heart" style. The procedure I stumbled across involves an incision made underneath the breasts. The surgery is more involved, but equally successful and does not interfere with future breastfeeding (a critical concern of mine). It took another exhaustive Internet search to find a willing, qualified surgeon. I had the surgery on October 20, 2000 and am fully recovered. I even notice a remission in my symptoms and enjoy parenting

my now 22 month old daughter.

I have created a webpage detailing my story, in the hopes that other myasthenics out there, typically women and young mothers affected with this disease, will have not have as much difficulty as I had finding pertinent, accurate information.

What is MG? My Symptoms and The Road to Diagnosis

WHAT IS MG?

MG is short for Myasthenia Gravis. It is an autoimmune neuromuscular disorder. Individuals with MG, make antibodies that interfere with the transmission of messages sent from the nerve ending to the muscle, resulting in weakness in various voluntary muscle groups. The longer the muscles are used, the weaker they get. Most commonly, the eyes are affected, causing double vision and/or dropping eyelids. Weakness can also occur in the arms and legs, facial muscles (including smiling, chewing, and swallowing), and in the lungs, resulting in difficulty breathing. Rest and various prescribed medications are helpful at improving strength.

MY SYMPTOMS

My symptoms began in 1993 during final exams my last semester of college for my Bachelor's degree. I was 22 years old. I began having double vision and noticed that the words on the pages of my college textbooks would move, when I went to read the next line of text. I went to an optometrist at a local mall for a free eye exam, expecting that I needed glasses. I was told that each eye saw 20/20, and that perhaps I had intermittent os extropia (lazy eye). I went to a specialist in eye care and was given eye exercises to "strengthen"; my weak eye. I also looked into surgery to realign my eyes properly. My symptoms came and went for the next few years, never presenting to a degree significant enough to warrant a visit to a doctor.

In 1995, I moved to NYC to get my Master's degree at Columbia University. I returned to Florida and was married in 1996. Occasionally, I had difficulty chewing my food, I noticed I was lifting my legs with my hand under my thigh, when getting in and out of the car, and I had trouble doing simple tasks like carrying a gallon of milk and squeezing shampoo and conditioner out of their bottles.

Then, in 1998, my husband and I moved across town. The move required a lot of hard work, painting, cleaning, packing, lifting and carrying boxes and endless trips up and down stairs. I started having trouble getting my hands and arms to do what I wanting them to do, like lift them over my head to change the channel on the cable box or type with certain fingers on the computer keyboard. My husband (more so than I) concluded that I was just out of shape and needed to exercise more, so that I could keep up with all the labor required of such a move. Granted, the typical healthy person should have no problems doing these tedious, but not particularly difficult tasks.

I began getting increasingly clumsy and misjudging depth and distance (walking into walls instead of through doorways, spilling drinks when I attempted to pour them into cups, missing my mouth when I used utensils...). My vision was double by the afternoon, every day, and by evening, I was closing one eye. The big red flag that finally hit me smack in the face was when I began falling down. At first I thought I must have stepped onto uneven ground. My legs would just give out, and I would find myself consciously telling my legs to work: left foot, right foot, left foot, right... I had to walk slowly and near something sturdy, in case I started to fall. At times I would notice that my voice took on a nasal quality or sounded as if I had been crying or was trying hard not to, after prolonged talking. One evening, my husband and I ate take out fried shrimp dinners, and I couldn't get my teeth to chew up the food. I blamed the shrimp, thinking perhaps they were too chewy, but my husband had no problems. It was like my teeth were flat, with no ridges, and the shrimp was just chewing gum. It was quite disturbing.

THE ROAD TO DIAGNOSIS

My mother has Lupus, and after talking with her about my symptoms, I decided to go to my primary care physician and have a lupus test. Many of my symptoms paralleled those of my mother's in her early undiagnosed stage. My doctor did various blood tests (neg. for Lupus) and decided that I should be evaluated by a neurologist. I sat on the news for a couple of weeks before scheduling an appointment.

Throughout this time, my husband and I had been trying to start a family for about a year and a half. In May of 1998, a month after our move, I had a laparoscopy procedure to examine my uterus, fallopian tubes, and abdominal cavity. I handled the surgery well, including the anesthesia. I was diagnosed with endometriosis and sluggish tubes. One month later, I finally brought myself into the neurologist's office.

After listening to my list of symptoms, this neurologist had a pretty good idea what the problem was. He told me a little bit about Myasthenia Gravis, and I had him write that word down. He warned me that �too much knowledge could be dangerous," implying that my plans to run home and begin an Internet search on MG, might not be such a good idea (I ran home and got on my computer, anyway). He ordered blood tests (to check for the acetylcholine receptor antibodies) and sent me for a cat scan (to look at the thymus glad for any abnormalities), an MRI (to rule out Multiple Sclerosis), a Repetitive Stimulation Test (test for muscle fatigability), a chest scan (to check for tumors of the thymus gland), and a Tensilon test (to confirm MG). I tested positive for the antibodies, MRI was normal, no thymoma, chest scan was normal, RST was inconclusive (AND PAINFUL), and the Tensilon test was positive. I began taking Mestinon and (WOW!) I could see clearly, all day and into the night! My husband and I went on a mini-vacation to the Florida Keys, and I was able to go out

to dinner at night and ACTUALLY make eye-contact with the waiter AND look across the room.

I had a diagnosis and a referral to meet an MDA neurologist, because this neuro didn't feel qualified to follow an mg patient. This was in July of 1998. My mid-August, our little Eryn was conceived (we discovered this wonderful news the 3rd of September)!

My First Pregnancy and My Introduction to Motherhood

THE PREGNANCY

My first neurologist warned me not to get pregnant until my MG was managed. I did not plan on listening and was thrilled to discover we were expecting a baby due in May of 1999. I did a lot of research on pregnancy and mg and found that a third of pregnant myasthenic women notice an improvement in symptoms, a third experience a worsening of mg symptoms, and a third report no change in their mg. I was taking 60 mg Mestinon 4 to 5 times daily for the first two trimesters, and increased the dose (via neurologist's instructions) to 6 times a day. It's hard to say if my fatigiablity at this stage in my pregnancy was due to the normal changes that takes place in a women's body when she is that much pregnant, or if the myasthenia was playing a role.

Mestinon is safe to take during pregnancy, though it could stimulate the uterus enough to create Braxton Hicks contractions. These contractions began around week 22, and I was closely monitored by the OBGYN's office for changes in cervical effacement and dilation. Near the end of the pregnancy, I routinely had ultrasounds to check for fetal stress and to measure fetal activity and amniotic fluid levels. An indication that the baby probably hasn't received antibodies from the mother is high fetal activity (and mine was very active). Another sign indicating the baby *may* have received antibodies is high amounts of amniotic fluid. All appeared fine.

THE DELIVERY of Eryn

Studies show that some MG women don't make it to full-term. This was not the case or me. I went up to and past my due date and opted for an induction. I did not go the Pitocin route, but used the Misoprostal pill inserted at the cervix instead. I was in labor for 16 hours, made it fully dilated and effaced, and pushed for 2 hours. At this point, it was discovered that the baby was *still* buoyant and having trouble dropping into the birth canal. A cesarean was elected, thankfully, as the thought of pushing any longer appalled me. Despite three epidurals, the last one did not take on left side, causing as much pain as a med-free birth (in my inexperienced opinion). Throughout the labor, I received Mestinon via an IV, as this medication must be taken with food and no food is permitted during labor. During the anesthesia during the C/S, I felt quite groggy and had severe muscle spasms in my arms, so much so, that the anesthesiologist had to tuck my arms under the blanket. This was quite painful. I'm not sure of the cause of this side effect, be it from the mg or the anesthesia.

MOTHERHOOD

Our little bundle was a girl! Eryn Sydney Hartley! She weighed 8 lb., 3 oz and was 20.5 inches long. Up to 20% of babies born to myasthenic mothers can have what is called Neonatal Transient Myasthenia. This occurs when some of the mom's mg antibodies are transferred to the baby in utero through the placenta. Much to our horror, Eryn was one of these babies. She had a raspy cry, weak upper body strength, and flat affect in her facial expression. The neonatal staff was concerned about her sucking reflex and insisted it was weak, however, I was the one nursing her and could tell that she was sucking just fine.

We delivered her at a Family Birthing Place adjacent to a hospital, which has nice provisions for new mommys and daddys, like having the baby remain in the room with the new parents at all times, even for pediatrician visits. However, due to Eryn's MG status, this privilege was not extended to us. The neonatalogists wanted her to be kept under a nurse's eye at all times, so she was placed in the Special Care Nursery. At over 8 lb., she was so much bigger than the preemies the nurses were used to treating in that unit. They all commented on how much room she took up on the isolate table. She was given a feeding tube in her nose (for only two days) and attached to a hospital grade Apnea monitor and had the little "ET"; light on her foot to monitor her oxygen saturation. The concern for her was that she would become too weak to inhale, causing a drop in her SAT level and the shrill of the apnea alarm. Other babies on these monitors, typically have the problem of "forgetting"; to breath (primarily premature infants), so Eryn's needs were a bit different. We were unsure how long her stay in the hospital would be, knowing that it could be a matter of weeks, not days. I nursed her round the clock, all 8 feedings, before I was discharged from the hospital on the fourth day. I went back to the hospital for 4 of her feedings and pumped the remaining 4 feedings at home. The nurses had me SNS feed her, while I nursed, so they could measure her food intake. I also pumped at the hospital after each feeding, to leave a supply of breastmilk with the nurses to use, while I was at home. If it weren't for the driving restrictions (due to the c/s), I would have made it there for ALL of her feedings. When I couldn't be the one to feed her, the nurses would finger feed Eryn, as I did not want any bottles to be introduced.

I must address the choice of breastfeeding. I searched the Internet extensively to learn about the safety of breastfeeding a baby, when the mother has mg. Studies have been done to show that the amount of antibodies, if any, that is transferred to the infant via the breastmilk is negligible if present at all. I successfully nursed Eryn for a full 15 months, with no problems of any kind. It was not only a rewarding experience emotionally, it was indeed a blessing to be able to nurse her instead of preparing

bottles around the clock. Every new mother needs to conserve energy however she can, and for a myasthenic mother with a newborn, this need is ultra important.

Eryn was sent home from the hospital on an Apnea home-unit monitor at 8 days old. We had to room in with her in the hospital the night beforehand, to become familiar with this home-unit. Once home, we discovered how unpleasant this device was, since Eryn had to be attached to the unit which was plugged into the wall and our range of mobility was limited to the couch and coffee table. She went for her 2 week pediatrician's visit when 11 days old, and her pediatrician declared her a healthy, normal newborn. We never had to use the apnea monitor again.

I, personally, do not feel that I was it any more difficult dealing with a newborn for me as a myasthenic, than it was for my girlfriends in the same boat. It is tiring, exhausting, fun, and rewarding. Something I wouldn't trade anything in the world for.

I had worked full-time as a child therapist throughout the whole pregnancy, minus the last two weeks in which I wanted to use to get everything ready for the baby. Now that she was born, I knew I wasn't going back to work without her, so I found myself a nanny position in which I could take her with me. When she was 13 weeks old, we began working for a family with a 14 week old and 21 month old. I took care of three kiddos under the age of two and loved it. It was quite easy until the babies became mobile. My symptoms worsened and my neurologist upped my Mestinon to 90 mg every 3 hours or so. I also began having terrible migraines.

Once Eryn was nine months old, I found a nanny position closer to home with only one baby, a month younger than my Eryn. This job proved more demanding, however, because this child was heavier than mine and the house had stairs. Carrying two heavy babies down stairs (they could crawl up them) became a big concern of mine. I feared dropping one of them. My symptoms began worsening and I started to actively consider having that terrible sounding thymectomy. I mentioned this to the family I worked for, and within weeks, they decided they "no longer afford me."

Plans for a Submammary Thymectomy

WHAT IS A THYMECTOMY?

A thymectomy is the surgical removal of the thymus gland. Anecdotal history has linked a significant chance of

improvement of mg symptoms with the removal of this gland, which rests beneath the breastbone. Theories speculate that the thymus gland is the warehouse of mg antibody production; hence, the removal of this "warehouse"; would result in less production of the acetylcholine receptor antibodies. This gland is routinely removed in all heart patients (both child and adult), as it sits right above the protective sheath above the heart. This gland is most beneficial in children, as their immune

systems develop. As people age into adulthood, this gland begins to shrink and eventually atrophies.

In myasthenic individuals, this gland may tend to remain somewhat enlarged and may develop a thymoma (usually a benign cancer). Not all individuals with thymomas develop MG, but ALL said people with thymomas are recommend to have thymectomies. Unfortunately, studies show that myasthenics WITHOUT thymomas do much better with regard to remission rates. Following thymectomies, myasthenics have a 60% chance of drug-free remission, 20% chance of a reduction in meds, and a third 20% experience no change in the progression of the disease.

Being only 29, the thought of going through such a scary, painful surgery and having such a visible scar did not appeal to me. Especially, since there would be no guarantee that I would be one of the luckier 60%. I had to be sure that there were no other options out there. Through much research, I ruled out the orthoscopic procedures (VAS), because there is limited visibility of the thymic tissue. Theories speculate that chances of remission are linked closely with the amount of thymic tissue removed. This gland does not rest neatly in one small glob, but instead can branch out into surrounding tissue, making it more difficult to clearly see and remove it entirely. For this reason, most surgeons are inclined to go the transternal approach, which entails splitting the breastbone as in open heart surgery.

I searched and searched the Internet and found a marvelous procedure that is just as good as the traditional transternal procedure, but that doesn't leave the "open heart"; chest scar. It is called the Submammary Thymectomy. The incision is made beneath the breasts, with a small line visible only the width of skin showing between my breasts. Self-esteem wise, I am so thankful I went this route. The procedure is a bit more complex, since the breasts must be lifted up to expose the sternum (which is spit and wired back together). The breast area was numb for about two weeks, but I now have complete normal sensation in all areas. This procedure will NOT effect breastfeeding potential, as no contact is made with the milk ducts. This was very important for me, when considering this approach, as I intend to have more

children and to breastfeed again.

I am considering posting photos of my incision, as I would have loved to have found similar photos during my exhaustive Internet search.

I underwent the procedure on October 20, 2000. The first 24 hours were truly the worst, but things improved rapidly from there. I had to strictly limit myself to lifting less than

10 pounds (which included my 17 month old daughter), no stretching, reaching, driving, opening tight jars or heavy doors. Luckily, my wonderful sister Carolyn and my 3-year-old niece, Brittany, came and stayed with us for 2 months. My recovery was almost more of a vacation having them visit.

It will be two months tomorrow since my surgery, and I feel thankful and relieved that it is over. I don't know if I will be one of the lucky ones to attain remission (it can take 1 to 5 years), but I am optimistic and pleased that I have done all I can to eradicate this disease.

Please feel free to email me with comments or questions at MsApril27@aol.com.

More Specifics regarding the surgery and recovery

The surgery lasted about 2 hours. My surgeon removed about 5 to 6 lb. of thymic tissue and fat (since the two are hard to distinguish from one another). I was admitted on a Friday morning (October 20th) and released by noon on the following Monday (October 23). I was lucky to have had the surgery on the weekend, because it enabled me to remain in the CVICU (cardiovascular intensive care unit) since no new surgery patients were scheduled for the weekend (only emergency patients). I received top rate care from the nurses.

The total recovery time was 8 weeks, as far as restrictions go. The pain was REALLY bad the first 24 hours because they couldn't find the right meds for me. Morphine and Demerol did nothing for me. Finally, they tried Percocet and that was wonder drug. I wasn't shy about asking for refills, either. I learned that the hard way after my cesarean, trying to tough it out without the meds. With pain pills, I managed fine. It hurt to lay down and get up for about 2 weeks, and I had to have my husband or sister help me lay down in bed or get me up, so that I didn't have to use my upper strength. After that point, I pretty much led a normal life, aside from following the no reaching and carrying restrictions. My baby was 17 months old by this time, and she was able to climb up on my lap and sit with me. She understood that "Mommy was broken," and she would repeat this phrase, along with "Mommy bone broken, OW!" I did not lift her or carry her, but my husband/sister would support her weight while I "pretended" to hold her. It seemed to appease her. It has now been 8 weeks, and I am beginning to lift and carry my daughter. She is just 20 lb. (on the small side).

Aside from this breathing exercise device they gave me in the hospital, I didn't have to have any type of rehab. The pain is nearly gone now, except when I over stretch or Eryn bumps me in the chest. Nothing severe enough to warrant medicine. When it did hurt, it would feel like someone was pressing a hot curling iron in a row on my chest. Not on the skin, but on the bobone, if you could imagine such a thing.

Update...I am now the proud Mommy of TWO little girls!

I'm proud to announce the birth of my second daughter, Chloe Sue, born April 15th, 2002. I had a second c-section and am successfully breastfeeding my baby exclusively (a testament to no complications resulting from the submammary thymectomy the birth of my second daughter, Chloe Sue, born April 15th, 2002. I had a second c-section and am successfully breastfeeding my baby exclusively (a testament to no complications resulting from the submammary thymectomy ymectomy I underwent 10/00). Unfortnately, my myasthenia has been worse post-delivery than it ever has been. I've begun receiving IVIG treatments every few months and am willing to undergo Plasmapheresis treatments (but my neuro cannot order them to be outpatient, and the hospital refuses to permit my nursing baby to room-in with me during the 5 to 7 day necessary hospital stay). I'm having tons of problems swallowing, chewing, enunciating after prolonged speech, and maintaining strength and function in my legs and hands. I totally enjoy being a mother, however, so all of the ugliness of MG is worth it. I'm still resistant to begin taking immunosuppressant medications, due to their long lists of unpleasant and debilitating side-effects (diabetes, osteoporosis, glaucoma, weight gain, mood swings, increased cancer risks, compromised fertility and so on).

MY HISTORY

I was diagnosed in June of 1998 ago with a rare neuromuscular autoimmune disorder,

called Myasthenia Gravis. MG cause weakness in various voluntary muscle groups,

including the eyes, smiling, chewing, swallowing, facial expressions, breathing, and

arm and leg strength. The more a particular muscle is put in use, the more antibodies

the body makes that interferes with the transmission of messages sent from the brain

to the muscle at the neuromuscular junction.

I had never heard of this disease, nor had anyone I knew. Even the neurologist that

diagnosed me didn't feel qualified to follow a myasthenic, so he referred me to the

MDA, which researches and treats this disease along with 39 other diseases.

I had BIG questions regarding pregnancy, breastfeeding, childbirth (as I become

pregnant one month following diagnosis), as well as questions regarding the various

treatment options. I sought out expert advice from all over the Internet, and though hard

to find, I was successful in getting some satisfactory answers. It was important that I

kept looking, however, because some info out there is not accurate (WebMD offers

disappointing outdated info on breastfeeding and MG).

I was fortunate enough to stumble across an uncommon version on a pretty

standard treatment option for individuals with MG, called the Submammary Transternal

Thymectomy. Traditionally, this procedure is performed "open-heart" style. The

procedure I stumbled across involves an incision made underneath the breasts. The

surgery is more involved, but equally successful and does not interfere with future

breastfeeding (a critical concern of mine). It took another exhaustive Internet search to

find a willing, qualified surgeon. I had the surgery on October 20, 2000 and am fully

recovered. I even notice a remission in my symptoms and enjoy parenting my now 22

month old daughter.

I have created a webpage detailing my story, in the hopes that other myasthenics

out there, typically women and young mothers affected with this disease, will have not

have as much difficulty as I had finding pertinent, accurate information.

Am I pregnant??

Date: 8/1/01

Now for my intro:

My dh and I have been trying since 1/01. I feel real confident about this cycle. We BD right on time, and I have tender breasts, tiredness, and irritable tummy already. It's too soon to test (we BD last Saturday nite, July 29th). My first took 21 months to conceive, 5 months on Clomid, 3 of which I was also taking Premarin for hostile cervical fluid, and finally had a laparoscopy along with chromoperturbation. This diagnosed sluggish tubes and mild to moderate endo, which was lasered off. The third cycle following this procedure (done on May 5, 1998) I conceived. I had my bundle of joy almost a year later to the day on May 15, 1999. My original due date was actually the 5th!

Subj: two lines!!!

Date: 8/13/01

I am besides myself with excitement and shock! Dh came up to Orlando for my convention on the last nite to go to the gala with me. He got his own hotel room and, ur...we had a good time. That was 15 days ago....I tested to day, and TWO LINES!!! This means another MAY baby!! Exactly three years apart! I'm so tickled I can't stand it!!

APRIL....PREGNANT....can u believe it?!?!?! ---

FIRST TRIMESTER

My breasts are still tender, so that's a good sign. Started at Ovualtion...in fact, they were quite sore the nite we bd. Also, I'm feeling some queasiness and some smells are starting to throw me off, whereas over a wk ago, they didn't.

Now that I am pregnant, I must stop with the Zoloft. I was at the 100 mg dose. When I don't take it, I get very dizzy, like my equilibrium is all off. It was suggested I taper to 50 mg for 3 days, then 25 mg for 3 days.

Subj: finally feeling twinges

Date: 8/22/01

I have had *some* queasiness and smell aversions lately. But, what really makes me feel like this pregnancy is progressing smoothly, is the twinges and light crampiness and heaviness I am now feeling in my lower tummy. It feels quite the same as what I experienced during my first pregnancy. It is soo reassuring. I was just too weird for me to go along day after day, without some sense of something going on down there. I guess what I'm feeling is the round ligament stretching and the uterus growing and thickening. Also, my breast are getting increasingly tender. I didn't expect to be so neurotic this pregnancy...but do feel thankful that I'm finally showing some signs.

Whew.....now I feel a bit more able to sit back, relax, and relish that I'm finally pregnant again!

SECOND TRIMESTER

In October, I began wathcing 3 year old twins full-time. I'm feeling mucy better than I did in my first trimester. I was soo tired! Watching these three kids is pretty easy, despited being preggo, since they are all able to walk, talk, and play independently. I'm working on getting the kids to dress themselves (Eryn's been doing this for months,and she is only 2.5!). We are pretty busy in the MOMS Club (of which I am Vice President). We've been going to parks and parties, pumbkin patches, playgruops,and having tons of fun!

The baby is due April 22nd, though I may elect to have a c/s up to a wk before that. She WON'T come more than a day or two later than that. I'm kind of torn between Chloe Renee and Katarina ? Oh, I'm in my 21st wk of pregnancy. I'm about as big as when I was 7th months pregnant with Eryn. She is moving tons and I can feel it from the outside. She is measuring big, way above my belly button, already, which is starting to pop out already.

Subj: still a girl

Date: 12/18/01

Hi Ladies,

I had another sono today, at 22 wks, 1 day. Baby looks perfect. She weighs 1 lb, 2 oz, right on target for her due date. I've gained another 4 pounds, totalling 9 pounds, so far. Incidentally, I am exactly what I weighed when Eryn was born. Urgh. Also, I was a size 6 pants, when I got pg with Chloe. My waist (widest part) is already 40 INCHES! Can you believe it?!? I was 45" at nine months with Eryn. I'm measuring right on track, though, so who knows why I'm sooo big.

Baby is very healthy and active and adorable, though. So, I'm not complaining.

Subj: Yesterday's OB visit

Date: 1/15/02

I had my 26 wk appointment yesterday for the GTT test. I had the orange flavor, chilled. It was actually quite good! Guess you could say I'm weird, lol. It tasted like extra sweet orange Gatorade or that yummy orange drink McDonald's has. I had Eryn and the twins with me for the hour wait. The children were remarkable well-behaved! I was quite impressed.

Despite being pregnant, my viens were still hard to access, so after a failed stick into each arm, they finally decided to take the blood from the back of my hand. What fun!

I've gained 5 lbs, upping my total gain to 14 lbs, so far. Even if I gain a pound a wk for the next 13 wks, my total weight gain should be just at or less than what I gained with Eryn (29 lbs). My fundal height is measuring right on track.

Since I'm going to Colorado in two wks, my ob wants me to have another sonogram (no twisting MY arm, he he) before I go...so I have that scheduled for next Monday morning. Also...my OB will be in Colorado the same week I am...and *might* even be on the same flight returning to Jacksonville! Isn't that a hoot?!

Subj: sono yesterday

Date: 1/22/02

I had another sono yesterday, growth check...basically to give me the "all's clear to travel" to Colorado next wk. Chloe is measuring exactly 27 wks, which she is. She's at the 51% in size, weighing approximately 2 lbs, 5 oz, already! She is heads up, with her feet and hands up by her face. I got a chance to go under the 3D ultrasound for a quick peek, but with all the stuff up by her head, it was hard to get a good shot. The sonographer said we will try again, if/when I get another sono. She said at this age, they move around so much, it's hard to take the photos to compile the 3D image. Later on, when the baby has less room to move, they stay more still. I can't wait!

Subj: 30 wk visit and consult with anesthesiologist

Date: 2/14/02

I had my 30 wk visit on Tuesday and a consultation with the anesthesiologist at the hospital yesterday (since I have MG and am high risk). Everything is going great! I've only gained 3 lbs this month, making my total weight gain 17 lbs. I'm very happy with that, since I have less than 10 wks to go. I gained 29 with Eryn, and I seem to be on the same track or even less.

PLUS, I'm measuring a bit big (no surprise, for those who have seen my pictures, lol!). At 30 wks, 1 day I am measuring at 32 weeks. Also, the baby has finally turned and is head down. She had been heads up the entire time.

We talked more about VBAC and a repeat C/S. It's interesting how different doctors in the practice have different opinions on the subject. My main OB recommends a repeat C. She is really great, so I'm not going to jump to the conclusion that this is just a "scheduling" perk for her. The doc I saw this wk says it is really up to me...that I shouldn't feel bad about either decision. The anesthesiologist said something really great....that if I go in to labor on my own (since I cannot be induced), and things seem to be going slow or too painful!!, that I could throw in the towel at any point and say, "okay...give me the c/s." Can you believe that?!? That is great, that I wouldn't be stuck in misery, regretting my decision, in the case that I try for a VBAC and things seem to be going the same way as my first. I do NOT wish to repeat that.

Okay...nuff of my rambling! Happy Valentine's Day Everyone!

Subj: Re: [April02Babies] major movement

Date: 2/21/02

Chloe is a very active baby. She isn't reaching up under my ribs, like Eryn did..though we still have time for that to start happening. Right now, I'm only uncomfortable when I get braxton hicks contractions and my uterus pushes on my bladder or I try and walk. So far, all her movements (and there are tons of belly contorting jabs) haven't hurt a bit and are fun to watch and feel.

Date: Fri Mar 8, 2002 3:47 pm

Subject: Update on my pregnancy

I am 33 wks, 4 days now! I only have 38 days to go! Yah hoo!

I am very big...measuring 42 inches around my waist..which is a considerable growth, seeing as I was wearing size 6 pants, before getting preggo! I've gained 20 lbs so far, and with only 5 wks or so to go, I'm hoping that number won't grow by more than another 5ish pounds. We will see...

My OB visit went great. Completely routine, though I am measuring 2 wks bigger than my gestation. Eryn was quite the big chunker (8.3), so it looks like this one is following suit.

As you all know, I have MG. Eryn received some of the antibodies thru the placenta and needed to stay in the special care nursery for 8 days. One of the indicators that this could be happening again, is an excess of amniotic fluid. This could explain the sudden jump in my fundal height, though we won't know that for sure without another ultrasound. No mention of getting another U/S, so we may not find that out. I'm going to bring this up at my next OB visit next wk.

As for my MG status...I was feeling pretty poorly my first trimester. I had a lot of weakness...even trouble in the bathtub (getting in and out and finishing all the tasks of a shower: shampoo/condition/shave/wash/brush teeth). Often, I could only do some of these tasks per shower.

My second trimester, I was feeling much better. I even watched twin three yr. olds, along with my 2.5 yr. old, full-time. I also stopped taking my medications this trimester, because there is some correlation between the medication and braxton hicks contractions. They started up this pregnancy around 18 wks (21 wks with first pgcy). My first pregnancy, I spent a lot of time in labor and delivery being monitored, to ensure that the contractions were not preterm labor.

I stopped watching the twins at the end of January. I had a couple more good weeks, but now..that I'm huge and well into my 3rd trimester, I'm getting progressively weaker. I'm having some trouble standing (even when cooking dinner) and also swallowing. NOT fun..when I'm thirsty as a horse!

I saw my neurologist this week. I refuse to take the immunosuppressive medications available for MG, because of the long list of serious side-effects. This completely irks my neurologist. He wants me to come in 2 wks prior to my scheduled c/s date to assess my disease again. He will determine if I need to have some blood exchanges, to help me go thru the delivery (surgery) and recovery period. There are two types of exchanges..one is called IVIG and the other is plasmapheresis. I may have to be hospitalized to get one of those done, depending on whether or not they need to insert a central line. We will see.

Okay...if you made it this far...you must have tons of free time on your hands...LOL!

I'll going to give an update on our nursery in a separate email.

Take care!

THIRD TRIMESTER

Date: Fri Mar 29, 2002 1:03 pm

Subject: 36 wk, day 4 OB visit

I had my OB visit today. Urine and blood pressure tested fine. Weight gain..up 2 pounds. Had the strep B test done and internal. I'm 1 cm dilated and no effacement.

Measurements?? 41 wks!!

That is 5 wks ahead of where I am. It is of no surprise to me, as I am huge! My belly is way out there and high, too. The doc guesstimated Chloe to be about 8 lbs already. I was concerned about possibly there being too much amniotic fluid (a sign that she is not ingesting enough of the stuff..which would suggest she may be experiencing some of the effects of my disease). Plus, though she moves noticeably, her movements are less so then they were a few days ago. This could be another sign of her receiving antibodies from my disease.

So..we did a NST and a sonogram. The news was good. She is reactive and has a good heartbeat. The sonogram (didn't bring a videotape :~( ) showed that she is, in fact head down now! Her amniotic fluid is fine and her weight is about 6 lbs, 6 oz. Looks like she will be close to 8 lbs at birth...which is two wks from Monday, at 39 wks). She said I'm measuring so big..because I'm carrying the baby way up high. My uterus is right up under my breasts. I'll have to have dh take a picture to post.

I am soo tired lately. I'm having trouble swallowing and standing. I'm so ready to have this baby on the outside.

Date: Sun Apr 14, 2002 9:21 pm

Subject: off for my c/s!!

Hi Friends and Family!

Well, it is less than 12 hours before I meet my little one...I'm soo excited! I leave for the hospital at 6 am, arrive at 6:15 am, and have the c-section at 8:15 am. Can't promise I'll sleep much tonight, lol. My husband will be emailing an update on Chloe's arrival. I won't return home until Friday morning. Please send any replies to this address (msapril27@aol.com).

DELIVERY

Date: Sun Apr 21, 2002 11:53 am

Subject: Chloe Suzanne Hartely is home!

Chloe is beautiful and doing great! I will post a birth story soon. We got home from the hospital Friday. She had NO MG signs at all. It was wonderful. She was able to stay in the hospital room with me the entire time. Eryn had to be in the Special Care nursery, so this was a blessed first for me. My milk came in on day 2.5 and Chloe is a super nurser. Her stats at 39 wks gestation: 8 lb., 1 1/4 ounces. 19 inches long. FULL HEAD of black hair, about an inch in length!! Absolutely beautiful. The c/s was great. I would strongly recommend it. Chloe would have definitely been a c/s baby, even if I had waited. She was floating high up, cervix firmly closed and thick. OB says she would never have dropped, at her size in my pelvis. Remember, I was measuring 41 wks as early as 36.5 wks. Plus, she pooped right before birth (amniotic fluid was a tad discolored) and again right at delivery. If she was allowed to stay in me for another 2 to 3 wk, she would have been floating around in that stuff. Plus, she would have been closer to or over 9 lb..

My only problem during delivery, was that my MG worsened and I wasn't able to swallow. That really scared me. I was afraid they would have to knock me out and intubate me. Luckily, the IV form of my MG medication was administered and took effect, within about 20 minutes. I'm fine now. Tired, sore, painful incision area...but happy and in love (as is DH and big sister).

C-SECTION RECOVERY

BREASTFEEDING

Date: 8/12/01

Hi Lisa!

I'm so glad you found my story! And congratulations on your pregnancy! It is so thrilling. Please don't worry about the antibodies at birth...if they are present...they WILL go away. It is not permanent. Having said that, I will admit, that I completely lost it, when they told me Eryn had it and wouldn't let her room in with me (they wanted her under constant supervision). I cried like I have never cried before, and following a C/S, I DON'T recommend crying (LOL). She is vibrant, loving and happy these days, and I so adore her. She is now 26 months old. Please, please stick to your guns about breastfeeding. It is a great source of nutrition for your son, but aside from that, it is Much easier on a myasthenic mother, then getting up and sterilizing and preparing bottles around the clock. I had the same concerns as you about dropping the baby. It never happened, but to be safe, I bought a baby Bijorn infant carrier (I tried a Fisher Price one and an LL Bean on, but didn't like them, also tried the sling, but couldn't figure it out). I had thought about bringing the stroller around the house with me, so I could take her with me, if I was feeling weak in the arms. I never ended up doing this, though. I did have a cradle, crib or bassinet in each room, so I had a safe place to lay her down, if I felt the need to. I also used the swing, a lot (she *loved* it). Since she is my only child (so far), and I've never had a child without this MG, I don't exactly have the same perspective as a regular OLE sleep-deprived postpartum mom with newborn, but from hearing about the experience of others, my situation didn't seem much different. I really cherished those days, and took any help that was offered, without hesitation, so I *could* enjoy the baby as much as possible.

If you take Mestinon, I'd check with your obgyn to see if you can get it thru an IV while in labor. This was helpful in keeping my strength up. I'm so excited for you! Please ask me more questions, if need be, and write back once your little bundle arrives, so I can congratulate you again!

Take care!

CO-SLEEPING

SLINGS and BABY CARRIERS

BIG SISTER ERYN

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