I’m finally getting a little computer time all to myself this evening. Taylor and Clara are in the family room watching hockey and snuggling under a cozy blanket. So, this means that I can park myself in front of the computer, free from roaming toddler eyes and hands, with a mug of hot chocolate and a mind full of thoughts. I wanted to continue Thursday’s entry last night, but was so exhausted from yesterday’s infusion that I nodded off, well more like passed out, on the couch around 9:15.
Last Saturday marked the beginning of 16 weeks of IVIG infusions. I will be getting two infusions per week until I deliver the baby during my 36th week of pregnancy via elective c-section. So far, I’ve had three out of about 32 infusions. My first one was in the hospital on October 29th. It was a very long day both mentally and physically for Taylor and I. We arrived at Women & Infants Hospital at 7 a.m. and didn’t get back home until 5 p.m. Due to quite a bit of miscommunication, I actually didn’t start the infusion until 11 a.m. Let me tell you, those four hours of waiting between our arrival at the hospital and when the immunoglobulin actually began coursing through my veins were among the longest of my life to date. Taylor and I tried to busy ourselves by reflecting on Halloweens past, sampling some of the hospital’s breakfast fare (it really wasn’t that bad) and surfing the net. Finally, after four hours of waiting, the bag of IVIG arrived it was time to get the IV going.
From 11 a.m. until 4:30 p.m. 1200ml of fluid, containing 62 grams of immunoglobulin, was pumped into my body. It didn’t hurt at all and I felt fine during the five and a half hour infusion. My only complaint was that I was stuck in a hospital bed, which was not good for my poor back, and every time I had to use the bathroom, which was quite frequently, I had to drag the pole, pump and IV bag with me. Before the infusion started, I was premedicated with Tylenol, Benadryl and 20mg of Prednisone, a steroid. The premedications are to prevent some of the most common side effects from the IVIG, including headaches (sometimes migraines) and allergic reactions such as rashes. I also spent the two days prior to the infusion drinking a LOT of water. I bought a 2.2 liter BPA-free water jug (Taylor says it looks like a mini Poland Springs bottle — click here for a picture of it) and made sure that I drank one jug full at least once on Thursday, Friday and Saturday. Because staying hydrated is supposed to help prevent IVIG-related headaches, I make an effort to drink through my little jug at least once per day everyday. So far, so good. The morning after the infusion I felt a slight dull headache and a little fatigued (almost as if I’d had one too many glasses of wine the night before — too bad I didn’t!), but once I ate breakfast I felt fine. I was even able to complete my daily five-mile run that afternoon. I really was expecting the worst regarding side effects post-infusion, but was pleasantly surprised by how good I actually felt. I credit my fellow NAIT moms for providing me with some great advice (i.e. hydrate, hydrate, hydrate) and wonderful support.
Because I’m hoping that this blog will help other NAIT parents, either contemplating future pregnancies or just getting started with the IVIG process, I would like to offer some of my own advice:
1. I echo the sentiments of my NAIT-sister moms when I stress the importance of hydrating before, during and after every infusion. I am convinced that drinking plenty of water (yes, you will visit the bathroom A LOT), has helped me tolerate the first few infusions.
2. Don’t forget to bring a supply of yummy snacks with you to your hospital infusion. Although I was lucky enough to be served both breakfast and lunch during my 10-hour stay at the hospital, I did find that munching on some granola bars and fruit helped keep me sane, satisfied and sufficiently nourished.
3. Bring a comfy pair of slippers with you. I didn’t even think of bringing my slippers and wished I had. Because I had to visit the bathroom so many times, thanks to the 2.2 liters of water I drank and the 1200ml of fluid being pumped into my veins, I had to walk on the cold hospital floor quite a bit. You also might want to think about packing your own set of pjs. When the doctor came in to check-up on me, he took one look at the stylish hospital johnny I was sporting and said, “We should have had you bring your own pajamas from home.” Hmmm…compliment? The jury is still out on that one…
4. Make sure that your attending nurse knows how to input the proper infusion rate into your pump. My infusion was to take place in four steps:
Well, my nurse miscalculated the infusion rate and actually started me a bit quicker than she should have. It wasn’t until the beginning of Step 3 that Taylor caught her mistake. After consulting three other nurses and the pharmacist who put the IVIG together, Taylor’s suspicion that the rate was too quick was confirmed and my rate was slowed down. Thankfully, I have a wonderful husband who is always looking out for my best interests. For those of you who don’t know, being infused too quickly, especially during the very first infusion, can cause severe headaches and other potentially dangerous complications.
Despite the miscommunication and mishaps, I am happy that the first infusion went so well. On Tuesday, the day after Halloween, I had my first at-home infusion and met my wonderful nurse, Jules. Infusion #2 went off without a hitch. However, you’ll have to wait until Thursday’s reflection to get a glimpse at An Afternoon in the Life of an At-Home IVIG Infusion. :0)
Before I sign off for the night, I wanted to update you another one of this week’s major milestones: My 20-week Level II ultrasound. Long story short, Clara accompanied me to the Prenatal Diagnosis Center (or PDC) in Providence on Thursday for another close look at her future sibling. I will be having Level II ultrasounds, which are very detailed sonograms, every four weeks until I deliver. The ultrasounds are used to monitor the baby’s growth and to check for any evidence of bleeding, particularly intracranial hemorrhages, which are, unfortunately, a common consequence of NAIT. Thursday’s ultrasound showed a healthy baby girl, with no evidence of any bleeds. Whew — another hurdle crossed.
Now, at almost 21 weeks pregnant, I’m finally starting to feel as if I can bond with my baby. Until now, I’ve kept my distance for fear of getting too close too soon. And, I can’t begin to tell you how much guilt I’ve had about this lack of bonding. When I was pregnant with Clara, I bonded with her fairly early on. I remember feeling elated as I went about my day, never feeling alone and always feeling this unbelievable sense of warmth and love. However, I haven’t felt the same way very much during this pregnancy and I think it’s for two reasons: 1) I’m just too busy and distracted caring for Clara and 2) I don’t want to set myself up for another lost baby and the repercussions that another loss could possibly bring. Rest assured, I am trying my best to spend some time every day reflecting on the fact that I am carrying another child and that as each day, week and month passes, I’m getting closer to meeting her.
And these final thoughts bring me to my last reflection for the evening: The fortune cookie that found itself in my plate on Halloween night. Now, for those of you who know me, I don’t each much Chinese food at all; I’m just not really into it. So, on Halloween night, I encouraged Taylor to order some Chinese take-out to share with his mom and sisters. While I munched on a salad, Taylor, April, Crystal and Sara enjoyed crab rangoons and egg rolls. At the end of the meal, Taylor was kind enough to pass his fortune cookie along to me. Below is the fortune that was folded inside the stale (is it me, or do all fortune cookies taste stale?), yet yummy, treat:
The fortune now hangs on my white-board calendar as a reminder of all the positive days, weeks and months yet to come…