-3 + one day...approximately

Monday Appointments

Our ultrasound showed great things--the baby weighs about 3 pounds, 4 ounces, is practicing breathing, and is in the 21st percentile for weight. The Biophysical Profile Score was 8/8, which means the body movements, tone, breathing movements, and amniotic fluid are all normal. The doctor we saw was another Dr. S. We'll call her Dr. S2. I liked her because she had a quiet confidence and was really on top of things as far as knowing my history and my questions. I was glad that she let me know what the protocol was, in case I have another low count and won't have to deal with being in limbo again. Dr. S2 set me up with the nurses to figure out how to use my glucometer after our appointment. It was almost like being a celebrity--these are the nurses who answer the urgent question line, or for people who call in with low platelet counts--so we know each other's names and voices, but we finally got to see each other's faces! Kind of cool :) Taking my blood sugar doesn't bother me, it's the numbers that do. And because I feel like I only have GD due to the massive amounts of steroids I'm currently/have been on. I'm supposedly just monitoring this week, and not supposed to change my diet.

Around 1:30, we went over to the clinic and checked in. Amazingly enough, we got back into the treatment room quickly for the IVIG. Jen and Shane were actually at the Duke clinics too, and we got to see them for a few minutes while I was getting my IV put in! It took a while to get all my premeds in--the pharmacy was slow with my Zofran, and without Zofran life gets UGLY on IVIG. I think Mom and I have permanent memories of the last time I had IVIG without Zofran. Between the Zofran and the Benadryl, I got a really wonderful nap in. We didn't get to leave until just before 7. Dr. M came by and we began discussing what might happen if my counts were low, because on Friday they had dropped to 49 from 82 on Wednesday. This was why Jimmy thought I might need to be admitted. Dr. M starts talking "Defcon 5"--if my counts had dropped and the steroids and the IVIG weren't working, then...but then immediately said, "There's no point in wondering, let's just see what your numbers are." Thankfully, they were at 331k! I had actually dreamed the night before they were 339, so that was pretty funny.

The Twist

We spent another night in Rocky Mount and came home Tuesday. Jimmy had just left for work when my phone rang. It was Dr. S2! She let me know that she had been consulting with Dr. J (you may not remember, she is one of the foremost experts on ITP and pregnancy, but does mostly consultations, not deliveries or office visits so much) and Dr. M. After talking, they decided they were very concerned about the risk of placental abruption as time goes on in this pregnancy. It is not something they can predict and it has hearbreaking outcomes. Therefore, they would like to induce me at 34 weeks. She went on to reassure me, saying basically (I'm paraphrasing) that babies are almost 100% viable at that point, just as they would be at term. I asked if the risk truly increased so much that it was worth the trade off of an early birth and she said they truly felt it was. I told her that Jimmy and I trusted them implicitly to do what was the safest outcome for our baby and me, and if that's what they felt was the best, we would do whatever they said. I have my next appointment December 5th and we will finalize our plan then. The outline is they will probably admit to be sure my counts are where they need to be, then once that happens they will induce. I told Dr. S2 several times how thankful I was that she called me so I could get my mind wrapped around the idea of having a baby in 3 weeks, because I am someone who needs time to process things. Dr. M and I spoke today and he gave me basically the same information, but I was more capable of digesting it today. My sweet husband is going to be a rock for me the next few days. I am incredibly thankful because he says he is nervous and excited, but also seems more at peace, now that they have a plan to keep his wife and child as safe as possible.

34 weeks is December 15th. Before Christmas. Before New Year's. Totally unexpected. I had to pick my chin up off the floor and fight back that nervous laughter reflex when the words first came out of her mouth. I finally moved out of panic attack mode last night, began making my lists, and got a lot accomplished today. We don't need a lot, thanks to the generosity of our friends and families. I'm doing a lot of praying for peace and the serenity to accept the things I cannot change.

This Week...-6-10

It's simple to explain what a chronic illness is. It's an illness that doesn't go away. What that short sentence doesn't include is the emotional impact of a chronic illness. When I was first diagnosed, it was really difficult for me to deal with people who meant well, and were just trying to help. Until you do the research on autoimmune diseases, they are not easy to understand. When people are throwing advice at you from every angle, it's overwhelming and it made me just shut down.

Someone told my mom, and I can't remember who, but paraphrasing, "Women go into survival mode when there is a crisis. They might break down after it's over, but they just want to get through it while it's happening." When there are serious things going on with my ITP, I typically just want to hide from everyone, get through a particular episode, then go back to regular life. It's hard to know when this feeling is going to come up, and it's not every time I have an issue. When it happens, I do become distant. The only people I really want to communicate with are my husband and parents. It's just too much to deal with more than that. I just feel emotionally depleted. Which in turn then makes me feel guilty for not being communicative. It just kind of sucks all the way around. Today though, I'm finally feeling better and more like my normal self. Except for the butt stuck under my ribcage, which is a very odd feeling.

This week has been one of those weeks. We did have a wonderful weekend in Rocky Mount and Jackie and Jennifer gave us a wonderful baby shower! It was great to see everyone and we got some very nice and sweet things. When we came back Monday, I had to get bloodwork done. My counts were 5k. Dr. M decided to bump up my steroids from the 12 mg/day to do a 40/40/20/20 pulse, and will keep me on 20 until next week. Also, he wanted to do a 4 day run of IVIG. Now, usually when I have a count like this, OB wants me in the hospital. He was trying to get in touch with them and never heard back. So we spent almost 24 hours waiting to hear from them and never heard. I tried calling the office directly Tuesday and they gave me the on-call pager number, "for my hematologist to call." I had a meltdown and Jimmy had to talk to Dr. M. I was so frustrated because this man has worked his tail off for us, and the OB people are just not as on top of things, until they want to be. On top of that, the office in Jacksonville would be able to administer the IVIG, but had to get prior approval from my insurance--IVIG costs more than liquid gold and has no shelf life. I just knew that as soon as Jacksonville called saying, "We got approval, we're ordering it," OB would call 10 minutes later, insisting I come up.

Thankfully, OB decided I didn't need to come up, since we were doing everything they would be doing in the hospital, and I'm pretty sure promises of bedrest were made until my count went into the safe zone. Jimmy made me promise that I would stay in bed or sitting as much as possible. Jacksonville called and they would be able to do 3 of my treatments this week, and then we will have to do the 4th one at Duke on Monday, because I have regularly scheduled OB appointments. My first treatment was yesterday, and it left me feeling pretty miserable. Thanks to the steroids, my counts had already gone up to 82. Jimmy also put me under strict orders to "not do anything" while he was at work. He has been driving me back and forth, but since there's not a lot he can do afterward, he has gone into work. Today was not as bad--they ran the meds a little more quickly and I came home and slept. Tomorrow we start very early--7:30--as the clinic is only open for a half day.

The stress of not knowing what we were doing threw me into a complete nesting mode Monday night and I washed pretty much everything. Sheets, clothes, and blankets are washed and put into the changing table or in the crib. We just need to put up the fencing and clean out the paint stuff, then we can arrange the nursery how we want. I have been keeping up with my online pregnancy groups because I can share with them without feeling like I have to go into all of the medical stuff, unless I want to, and it helps distract me from my bubble.

-12 weeks...or is it more like 8 or 9?

Yesterday was my 28 week appointment. The doctor that I saw I thought was just the head guy in the practice, but now that I'm looking at the website, he is the Division Chief of Maternal Fetal Medicine and Vice-Chair of Administrative Affairs. Apparently, he is somebody. I have mixed feelings about him. This is also the same guy who kept me in the hospital on my anniversary and refused to even check my counts.

During the appointment, I was mostly okay with him. The only thing that really stuck out in my mind as a, "Hmm, not sure about him," sign was that he measured my fundal height, poked Baby J, and asked about my next growth scan. Does that mean my measurements are off? Because since we started the dex 3 weeks ago and I've been on it continuously, I've lost 5 pounds. So far with this pregnancy, I'd only gained 11. I realize the baby is going to take what it needs first, but please don't look at my stomach like something is wrong with it, then ask me about a growth scan. It worries me.

We also talked about our delivery plan. He wouldn't discuss the possibility of me going into labor on my own. He said he would probably look at 36-37 weeks in conjunction with trying to get my platelets at a safe level so I could deliver. We still have to talk with anesthesiology, but the doctor said from OB's end, they would want to put an epidural line in, just in case a Cesarean is needed. I didn't realize that it works just like an IV, where it is a catheter and they don't have to administer the meds unless I want them. He seemed to think it would be a long labor, and I thought, "Well duh, if the baby's not ready to come at that time, it's going to take longer." I don't want him delivering my baby though. There are several other doctors in the practice I've seen and would be 100% fine with delivering me. Hopefully, if they schedule me over the holidays, one of them will be the doctor who drew the short stick for duty that week.

He wants me to monitor my blood pressure at home, because it was high in clinic. He said he could tell I was nervous, and I know it's a combination of things: 1)I hate having my blood pressure taken. From all those years of IVIG and continuous vital monitoring, I have had more bruises and petechaie from blood pressure cuffs than I care to count. 2)I get nervous in their office because I'm excited just to be there and be pregnant. 3)Does he remember that I'm the one who had a major meltdown? 4)I'm on steroids. Everything goes nuts when you're on steroids.

Also, I called and my blood sugar was slightly elevated. Now we have to schedule a 3 hour test. I'm trying to call somewhere down here to have it done, so I don't have to go back to Duke just for a test. The frustrating thing is that I'm sure it's from the Dex. It's a trade off, platelets vs. GD risk...Thankfully my counts were 85k yesterday, so that's a step in the right direction.

Neither here nor there...

Back on a steroid pulse for a few days. I was at 11k on Monday, which isn't single digits, but isn't fabulous. Today I've felt pretty icky. While waiting on Jimmy to get up, I read for a while. A pregnant belly makes a GREAT book rest! Until the baby decides it doesn't like a book sitting on it. It was so funny to watch my book move because the baby was kicking it!

"I don't like to use paint stirrers." -13 weeks (for a few more hours)

This weekend Jimmy and I finally began painting the nursery. I think he's been wanting to do it since our birth class, but we hadn't really had a chance to yet. He sent me out last Friday to pick out the paint, but naturally, I had about 8 different colors that were really all the same color green, and I couldn't pick. I wanted him to have input and at the time it was incredibly important (impending stressful things, not quite ready to post about yet).

On Saturday, we got up and went to Havelock, had lunch, and picked out our paint. We were in WalMart and of course I got a little distracted by baby things. He asked me if I'd looked at cribs there. He acted like he really wanted to get the crib bought that weekend. His grandma had so generously offered to buy us the crib we wanted, originally from Target, but it was out of stock online and in limited stock in stores. I told him no and he asked if there was a specific reason. I said since I'd registered at Target I hadn't really looked at anywhere else, but the brand of the crib was more important than where it was bought. We looked at a few and at first I didn't see what I wanted...then I saw it. Almost the exact same crib as the one in Target, $10 less, and IN STOCK! We were so excited!

Saturday evening, we got everything (except my antique chiffarobe) out of the nursery and arranged it in the sewing/music/guest room. I'm always amazed at what we can get done when we're motivated. For so long I've just been okay with the thought of, "This room is just a mess, and there's not much I can do," but when we got into that spare room and needed to be cleaned out, we were able to do it and it feels so much better. Which has led me to another revelation. We have too much crap. It amazes me all the little things we've thrown out or put in the give away pile. We don't need little trinkets, gadgets, and things, because it seems like that's what we've mostly thrown out, or it's in packages that have never even been opened. It makes me want to have a trash can at my front door and just sort through anything tempted to enter. It's making me feel a lot better about simplifying things for Christmas though!

I was sitting on the couch, finishing up thank you cards (and most are sent out! Just need a few addresses to send out the rest!) and I hear it. A very loud bad word. I knew it. I just don't expect for us to complete a project without something happening. If it doesn't happen, it's just a pleasant surprise! The next thing I know, Jimmy is bringing his drop cloth sheet out the front door and lets me know he has spilled paint on the floor. Oh geeze. I immediately Google, "remove latex paint from carpet." Apparently it will be hard to get up. I ask him how it happened and he says something along the lines of shaking the paint. I asked him why he didn't use a paint stirrer and he says, "I don't like to use paint stirrers." We spend the next 20 minutes or so scrubbing up paint as best we can, and joking about what kind of rugs we'll have to get to cover up the stains. Jimmy thinks a carpet shampooer may help, but I'm doubtful. But I've seen him use paint stirrers since then!

Sunday he began working on the mural. It looks really great so far! We are going to add some fence posts and he wants to do the dogs' heads looking over the fence. It is going to be so beautiful! I'm so excited. I was able to assemble the crib yesterday and just needed Jimmy's help to put in the mattress supporter. We got the changer out of storage--Lauren and Travis had given it to us over a year ago and it had been in the kitchen as a storage piece. When we redid the kitchen, we put into storage and kind of forgot about it being a changer! It helps bring the room together. We can't hardcore organize in there yet, until the mural is finished, but I'm good with that. It's really exciting to see progress!