Jul. 9, 2007 - Moving Along
It never got easier - the time I spent in the room of sick children or my treatments. But in His mercy, God allowed me to go through it with perseverance and a continued belief that His plan is perfect.
October 19, 2001
Letter # 5: The Seasons are Changing
Dear Family and Friends,
It's hard for me to believe that it is almost the end of October. Here in Beautiful Beaufort by the Sea it is still pretty warm most days, though there has been a slight chill in the air a few mornings recently. It's weird walking through the stores and seeing Christmas merchandise. Looking at it makes me very homesick as I think about spending another holiday season away from our extended families. This year, due to my pregnancy, we won't be able to travel to Maryland for Thanksgiving or Christmas. However, I will be in Frederick on Halloween day before spending the first four days of November in Virginia at a training seminar. That is going to be a tough week. Monday, I will go for my treatment. Tuesday, I will fly to Dulles then spend Tuesday night and Wednesday in Frederick. Thursday, I start a grueling 4-day seminar that runs from 8:30am to 10:00pm with breaks only for lunch and dinner. On Sunday, the seminar will end at 5:30pm and I will get on a plane home that night. To top it off, I am leaving my daughter here, which will be the toughest part of all. For those of you wondering, I am still not working ouside my home but I have been training to be a certified childbirth educator. The seminar is one of the final steps in the process. When I reserved my spot over a year ago, I was not pregnant and had no idea that my life would be so crazy when it came time to go! So, I ask that you all pray for me so I have the energy to get through the seminar, pass all the tests they will give, and handle being without Victoria.
(I handled the trip ok though I spent most of the time with a headache and actually - gasp! - drank caffeinated soda to help with that. Fortunately, I was allowed to sit on the chair, lay on the floor or generally get into any position that was comfortable for me. The hours were still long and I was wiped out at the end of every day. I did find a woman at the seminar who was staying in my hotel that also had a double room all to herself. So we decided to save some money by sharing a room. This more than made up for the fact that the cabby that took me from my hotel to the seminar the day before had drove me way out of the way to get there. He followed a route that took us about 20 minutes when my hotel was literally four blocks away - I just didn't know that until the next day when my new roommate drove us in her car! I missed Victoria terribly but everyone survived.)
As you can imagine, life has been pretty difficult lately. But things are getting better with each week that goes by. The first few weeks after I started my treatments were hard to get through, but God has been good in giving us just the strength we need to to make it day by day. The brusing I experienced around my veins after my second treatment was apparently a fluke and has not happened since. Although I did have a nurse puncture through two of my veins the third week while trying to insert the IV needle! If you've ever had the priviledge of that experience, you know that it leaves a terribly ugly bruise that can last for weeks.
I am a familiar Tuesday face around the clinic now. My nurse always saves my favorite recliner for me as well as two pillows and a blanket. She has also been ordering my immunoglobulin before I get there so that I can get out of there sooner... even though she is not supposed to. I continue to receive a dose of Benedryl before leaving the hospital after each treatment and continue to spend my Tuesday evenings at home in a drug-induced daze or sleep. Wednesdays bring the headache, though I am happy to report that it gets less and less severe with each treatment. The whole family is slowly learning to cope.
Russ took off work each Tuesday for the first four weeks of my treatments. It was nice to have him with me but then his employer told him that he couldn't continue to do that on a weekly basis. Fortunately, some people at our church had taken it upon themselves to help by arranging rides for me. I was presented with a schedule of volunteers through the middle of November and another schedule is being created for the rest of the pregnancy! My neighbors continue to keep Victoria during my treatments so, logistically, everything is going smoothly. I have not given up hope that my doctors will arrange a way for me to get my IVIG in Beaufort, although it looks unlikely.
The most common question I get asked these days is whether or not the treatments are working. My answer? Well, we just don't know. In theory, the treatments should work - and have worked in other people with the same problem. However, using IVIG to treat this specific condition is a relatively new practice so they make no guarantees. And, the only way to know for sure is to have the PUBS procedure that I spoke about in my first letter.
If you recall, PUBS involves putting a needle into the baby's umbilical cord to draw blood. It is a risky procedure in and of itself but but becomes even risker when performed on a baby that could possibly have low platelets. The low platelets would inhibit the umbilical cord's ability to clot fast enough at the place where the needle was inserted,, which is a life-threatening situation for the baby. In essence, the procedure that is done to find out if the baby's platelets are low can cause pregnancy loss if the platelets are in fact low. So Russ and I decided to decline this procedure at least until the pregnancy is far enough along that viability is virtually unquestionable. That way, if the baby has problems with the PUBS, he can be delivered via emergency C-section and treated. In the absence of the PUBS testing, the only way to watch the baby's progress is to have periodic ultrasounds to check for signs of cerebral hemorrhaging. We had this done at our doctor's appointment on October 9th and everything looked great!
At that last ultrasound, they estimated the baby's weight to be about 2 pounds! (I found out after much more chilbirth education training that ultrasounds can be way off when estimating the weight of the baby). I am also gaining steadily and am now up to 8 pounds over my pre-pregnancy weight. Going by the baby's due date, we only have a little under 14 weeks left and we are so excited! I hope all of you are enjoying your fall weather and getting ready for the upcoming holidays.
Stay well, stay warm, and God Bless
... up next - Fiction Sadly Real
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