New Normal

As of today I've spent 3 full weeks in the hospital, and I'm not counting the one admission since it was only for 5 hours for the blood patch. Life is a lot different here than at home. Here are some of the differences:

1. I constantly have an iv tube inserted in at least one arm, hand, or wrist. Thus far I've had 8 different iv tubes inserted over the past 6+ weeks. I like the location of the current one. The other 7 were inserted by Labor and Delivery nurses, and they use a wider tubing. The 8th one was inserted by someone from iv therapy, and she used a much smaller tube, which is far more comfortable. Plus it's higher on my arm so I can wear my watch in it's usual place (left wrist). My arms and hands are sporting a lot more tape, tape residue, and bruises these days. Taking a shower is more complicated because they have to cover the iv tubing with plastic and lots of tape to try to keep it dry (although some water always manages to get inside). Of course my shower privileges are often revoked so I am very grateful when they let me take a shower. My new normal for showers is to take them sitting down, which was a big adjustment at first.

2. I have been wearing TED compression socks almost 24 hours a day for almost 6 weeks. I only take them off to shower. I've been given 5 pairs of socks thus far. Two pairs are at home, one are on my legs, and two pairs were thrown out (the pair I was wearing last Friday got blood all over them). I vastly prefer the socks to the compression cuff machine that they had me attached to at the first hospital. It was hard to sleep when hooked up to that contraption plus it meant I had one more thing to unplug before I went to the bathroom. I've gone many days over the past 6+ weeks without ever wearing a pair of shoes.

3. Going to the bathroom has become far more complicated. Many times I have to unplug an IV machine, fetal monitor, and contraction monitor before I can walk to the bathroom with my IV machine coming along with me. At times I've had a foley or straight cathether or have had to use a bedpan. Sometimes they've had a "hat" on the toilet as they've been keeping track of my input and output. I am expected to analyze the toilet paper after every time I wipe and report what I saw to the nurse. If there is red blood, I am to save the toilet paper for their visual inspection.

4. Privacy is pretty much a thing of the past. In addition to answering questions many times a day about any "discharge," I also have to report when I've gone #2 every day, and of course my belly is exposed a few hours a day, and there are times when I'm wearing almost no clothing whatsoever (ex. in the OR) or am absolutely naked (after a bleeding episode or vomitting episode). I am getting very accustomed to being covered in some sort of body fluid. Last night I threw up several times and everything was covered. They had to replace my hospital wrist band, all the tape over my iv (as there was food under it), my gown, sheets, blankets, etc. In fact they even had to replace the bands that hold the monitors in place, and those were under my hospital gown. I'm getting used to being cleaned up by wash cloth or wet wipes by a nurse since I'm not allowed to shower after these incidents occur.

5. My belly often has a liberal dose of ultrasound jelly each day (for the fetal heart monitor as well as the frequent ultrasounds). Although I try to keep my clothing out of the way, invariably I get some of it on my shirt, gown, and/or pants every day.

6. I have little control over what I eat and almost no control over when I eat. The times meals are served varies greatly from day to day. If it weren't for the food in the lounge, I would go crazy at times. I have been enjoying eating more fresh fruit than usual (when they actually bring me a tray that includes what I ordered), but I'm not eating nearly as many bananas as usual. For years I've had a banana almost every day. Here I probably average one banana a week. I'm getting accustomed to my stomach growling. Thankfully it didn't start growling until 11:30am yesterday, which was much later than the first time I had a fetal blood transfusion. The procedure was supposed to start at 1:00, but it didn't start until 3:40, which wasn't much earlier than last time's 5pm start.

7. I'm spending about 23 hours a day in a hospital bed. The times I'm out of the bed are when I'm in the bathroom or at an ultrasound appointment. I've learned that it's very hard to avoid spilling a little food on my clothing or sheets when eating in bed.

8. I'm getting on average 3-4 hours of sleep a night. Every once in a while I get more sleep than that, but many times I only get 3-4 hours of sleep, which is a lot less than the 8-9 hours I was getting on average at home. Sometimes I take a nap during the day. I've given up on Ambien. It doesn't help.

9. I'm reading and watching tv FAR more than usual although my tv viewing has gone down now that I can't watch "I Love Lucy," "Dick van Dyke," "Andy Griffith," etc. like I had been. I have tried some new shows that I've never seen before like "Hoarders" and "Extreme Couponing," but they haven't really grabbed my attention. I'm pretty much left with a few game shows to watch such as "Family Feud," "Who wants to be a millionaire," and "Jeopardy."
10. I'm crying a lot more than usual. This week I've also been less talkative. I attended the craft session on Tuesday (probably won't go again - just not my thing), and I found myself really quiet around the other ladies as I was so fearful that if I started talking about something (ex. my kids) I'd start crying.

11. I'm seeing my kids a LOT less than usual. Normally I'm with them for about 13 hours a day, but in the past 8 days I was with them for a total of about 4 hours. This is absolutely the hardest part about being in the hospital. I miss their hugs, kisses, snuggles, laughter, etc. I miss taking pictures of them, and I feel out of touch with what is new in their lives. I didn't even attempt to write a post for Ian yesterday when he turned 31 months old, and that made me sad to realize I wasn't too aware of all the ways he's changed over the past month since I've been apart from him most of that time. I'm very grateful that Paul is bringing them down for a visit today, and I'll see them again tomorrow as they're going to spend the night at Aunt Debbie's house tonight. Hopefully I'll be unhooked from my iv and back up on the 9th floor before they arrive.
12. I'm blowdrying my hair a lot less. It seems rather pointless when I'll just be in a hospital bed all day. I really, really need a haircut. I haven't had one for 3 months. The last one was done at the Ronald McDonald House in April in Hershey. If I can't get it cut for 2 more months it's definitely going to be longer that it has been in years. I can't wait until it's cut!
13. I'm talking to Paul on the phone a lot more than usual.

14. I'm popping a lot more pills and vitamins and having a lot more shots. Previously I had been taking 1 prenatal vitamin a day and having 1 P17 shot a week. Lately I've been taking 4 doses of Procardia a day, 4 vitamins a day, and 2 Colace a day. In addition to the weekly P17 shot, I've had 2 shots of Rhogam, 2 shots in the OR to prevent contractions, and 4 shots of steroids over the past 6 weeks.

15. My temperature, pulse, blood pressure, etc. are now taken many times a day. Sometimes I wonder why "vitals" have to be the same for every patient. I've never had a fever during these 21 days. Why do they still need to take my temp several times a day? It varies by nurse exactly what all they do during the vitals. Some of the check my reflexes. Many of them listen to my heart and lungs with a stethoscope. Some check the color under my fingernails. Some check my legs for swelling. The only time I really wish they'd skip the vitals is when they wake me up to do them. Not Fun.

16. It's much quieter and far more lonely. The only time in my life I can think of when I was this lonely was the summer of 1996 when I first moved to Pennsylvania to start my new job as a principal. The kids and teachers weren't in school, and I had gone from living in a townhouse with 2 roommates in MD to living in a 2 bedroom apartment by myself. Sometimes I have the tv on purely for background noise while I'm reading a book just because the quiet bothers me after being accustomed to the noise Nadia and Ian make throughout the day.

17. I'm getting accustomed to hearing people say something like "you should write a book about your experiences with this pregnancy." It caught me off guard though when the MFM doctor said that to me right before he started the transfusion yesterday. I figured my experiences were more normal for a 'high-risk" patient. I guess not! He said I was dealing with a wider variety of problems than even most MFM patients deal with at one time. I had forgotten how itchy I was after the spinal I had with Ian's c-section. I don't do well with Benadryl (which is what they offered me) so I'm just waiting for the itching to subside. Paul's aunt came to visit me last night, and I felt awkward because I was itching myself constantly all over while she was here.
18. I've worn my glasses FAR more over the past 6 weeks than I have in the past 20 years. I've also been wearing the same jewelry every day for the past 6 weeks, and normally I change my earrings almost every day and change my necklace, bracelet, and the ring I wear on my right hand a couple of times a month. When I go in the OR, all of it has to come off.
19. Paul hasn't gone to a barber in almost 11 years as I've been cutting his hair every since we got married, but I have been encouraging him to go to one in the near future as he's been needing a haircut for awhile, and I probably won't be able to cut his hair for a couple more months.