I've had Fibromyalgia (FM) and Chronic Fatigue Syndrome (CFS) since a bout with mononucleosis in August, 2000. I took two years off from work to deal with the debilitating fatigue and chronic pain, and through trial and error found a combination of pain and sleep medications to manage my symptoms. I was then able to return work full-time, have my own apartment, and keep up with my day to day life without many people even realizing that I have health problems.
After a year of my family and friends advising that I take the energy I was pouring into my efforts to stay employed, I lost my job in February 2009 and decided to use that energy to help take care of myself. Thankfully, I have a wonderful husband who is very supportive, and works from home so he's able to help care for me. It was a rough adjustment to being home all of the time, and it was very frustrating to not be able to do the things I wanted to do without careful planning and pacing of my available energy every day. It's a constantly shifting target.
By June 2009, my husband and I decided that we were not getting any younger, and would never be in an easier situation to try having a child of our own with both of us being home-based. A week later we were pregnant, and our journey began!
I consulted with two high-risk pregnancy doctors at prestigious medical centers in Chicago, and was told that the combination of meds I was on bore a low risk for the baby and I was counselled to remain on them throughout the course of my pregnancy. I was told that there was a slight chance that upon birth the baby would experience some withdrawal symptoms from my pain medication, but that they would be mild and not usually take more than a day to wean her. Both doctors insisted that I was on a very low dosage of my pain medication, and that the greater risk would be going off all of my meds and not being able to manage the pain and carry the pregnancy to full-term.
In weeks 30-35 the doctors started noticing that measurements of the baby were stable with the head, but that the body was 1 week behind, then 2 weeks behind. They decided that this indicated that the baby wasn't getting enough nutrition from the placenta, and at week 37 they scheduled admitted me to the hospital to try to induce labor.
The induction took four days, first trying Cervadil, and then 3 rounds of Pitocin, then breaking the bag of waters, to finally get my body into active labor with a good contraction pattern. After seven hours of full body shaking, sweating, screaming labor, I finally called the anesthesiologist for an epidural so I could conserve what energy I had left for getting ready to push as my body was almost exhausted. Two hours later, I was fully dilated, and even had enough sensation in my legs to flip over into a squat and push the baby out while leaning on a birth ball. It only took a half hour of pushing, and then she was out!
I found out after the birth that there was little to no reference material to guide the hospital pediatrician in structuring my baby's withdrawal from my medications, particularly Oxycontin. It turned out to be a much bigger deal than I was prepared for. There are not that many cases of young women needing to take controlled doses of Oxycontin, and the only information we had was gleaned from morphine addicted patients who do not take controlled, regular doses of their medications, but abuse whatever can be found on the street.
When my daughter started exhibiting withdrawal symptoms, the pediatrician started her on a course of morphine to help ease the side-effects and wean her down over the course of 1-2 weeks. The first dose ended up being much too high, and it knocked her out and she stopped feeding for almost an entire day. This really put us into panic mode as I was in the beginning of learning how to breastfeed and just beginning to establish my milk supply, so her lack of appetite put us back a few days.
After that first day, the morphine dose was adjusted so that my daughter became more alert and was feeding again, while her side-effects were manageable. Over the course of a week, her dosage was decreased a little bit every day and she began to feed reliably and gain weight.
Another problem she faced was her low birth weight. Delivering at 38 weeks because of signs of restricted growth syndrome, she was on the small side. She was born at 5 lbs, 6 oz, and dropped down to 5 lbs within the first few days. We do not know if my combination of medications caused the growth restriction, or if it just ended up being a fluke of my pregnancy as it often happens for no discernible reason. Post-delivery, the placenta did seem to be pretty healthy, so that was ruled out as a cause. She spent the first week in an incubator as she couldn't hold her body temperature.
After a week and a half in the nursery, she was totally weaned off morphine, had no more withdrawal symptoms, put on enough weight to maintain her body temperature, and could be sent home.
If I could do it over again, I would have consulted with the hospital pediatrician who treats the babies once they're born instead of the high-risk OB/GYNs who were treating me and more focused on the pregnancy. The hospital pediatrician had a better handle on what we'd be dealing with after the birth, and it was difficult to cope with during the hormonal swings of a post-partum woman. Things things are much less scary when they can be talked about before delivery, and have a plan of action in place and ready to go with everyone on the same page.
This was only the beginning of my journey in learning how to be a disabled mom, working with my team of doctors and my family to build a support network to meet my daughter's needs and keep me going. It is still a work in progress.
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