If interested, this is a really great site that explains some of my health problems and the things we're dealing with with the baby right now. It's been the best site for me to use to share with family so it's all more understandable. Anyway... thanks again for everything. I've felt your prayers and appreciate immensely all the emails and comments and Facebook support. I'm very lucky to have such amazing people in my life.
http://www.neonatallupus.c
I just got an alarming phone call from the Pediatric Cardiologist who I saw 2 weeks ago in Peoria, IL. Yes, he called me himself. (gulp) I knew it wasn’t good.
Back up a minute. Most of you know, but maybe not all, that last year was a year from hell for me. I mean, really, that’s the easiest way for me to sum it up. It was bad. Halfway through the year I realized my hair shouldn’t still be falling out after 2 years of it happening in drastic amounts and my body starting acting very strange (high blood pressure, muscle spasms, weight gain, heart palps, muscle and joint pain, dizziness, extreme exhaustion, and the list goes on). So I went to my doctor and they started doing tests upon tests. Over a period of about 6 months I found out that I had Hypothyroidism, PCOS (female thing that can cause a lot of crazy side-effects), Sjogren’s Disease and I also had 4 antibody tests that came back positive signifying either MS, Lupus or Fibromyalgia. The day I found out I was pregnant, I also was told I probably had Fibromyalgia, but we still don’t know for certain. I can’t undergo anymore tests until after the baby is born. Right now my body has went into “remission” and it’s the best thing I’ve ever experienced in a long time. This pregnancy has been a complete blessing in more ways than one. I was told I probably would not be able to have anymore children (we assumed we were done anyway) and so this baby is such a miracle. And going into remission, a huge blessing as well. I haven’t felt so good in 3 years. My energy level is up, blood pressure is good so far, pains have gone away, my hair stopped falling out, etc. It’s been a miracle in itself. The sucky thing is, I feel in my heart that I have Lupus and getting the phone call today reinforced what my instincts are telling me.
So my Rheumatologist, Dr. T, told me I must see a Pediatric Cardiologist later in pregnancy to have a fetal Echocardiogram halfway through the pregnancy. I guess one of the antibodies can cause heart risks in the baby. So I had that test done 2 weeks ago and the doctor told me that day that everything looked good. But he said depending on what exact antibodies came back positive, I may need to be seen later on towards the end of pregnancy again. Didn’t seem like any big deal at the time because I was already told that baby’s heart was fine. Neil and I were very happy.
Well, when Dr. H called me this morning, he said he talked to my Rheumatologist, Dr. T. who went over all my positive antibodies with him and one major one popped up, called the anti-SSA/La antibody. (“Okay....” I thought.) And Dr. H said with this antibody, the baby can develop Progressive Fetal Heart Block in the 3rd trimester over time. (I took a deep breath.) He then went on to say he needs to see me every 2 weeks to have Echocardiograms done. He said if something does develop they can probably do something to stop it. (“Surgery? Good God, please no.” I thought.) He wanted to see me today (of all days, when I have to clean my house head to toe for the baby shower I’m throwing Saturday for one of my best friends). I told him I really couldn’t (besides the 1-1/2 hour drive to Peoria), so he said he will see me the first of next week. Ugh. So here I go on another joyous ride, with more tests and lots of money and lots of worry. I’m already spending $300 out of pocket every single month for my Lovenox injections which I take till the end of pregnancy (also for a positive antibody --- damn antibodies!!) and then all my other drugs that I have to take to sustain this pregnancy and keep the baby healthy. Ugh ugh ugh ugh.
I know there is a reason God is putting me through all this. It’s funny. My friend, Jenn, just sent me a quote this morning. It’s something I already thought in my heart and mind just because of all my miscarriages and years of infertility and pain. It’s exactly why I feel like I went through all that.
"It is such a comfort to know that Jesus' wounds remain visible in His risen body. Our wounds are not taken away, but become sources of hope to others." -Henri Nouwen
I know there is a reason why becoming a mother has been so difficult for me. I know there is a reason why sustaining my pregnancies have been so difficult. I know there is a reason why birth was so hard for me. I know there is a reason why both my children came so close to death. I know there is a reason why I’m going through it all again. There is a reason. I may not ever truly know why, but I have to hold it in my mind and heart that it’s to become a source of hope to others. And in the meantime I will thank God every second of the day for the blessings he has given me. I’m so blessed. Here I am, once told would probably never have a baby, with 2 gorgeous perfect children, and now pregnant again! He will get me through again, I know. God is good. Thank you all for your love, prayers, everything, through these journeys. I also couldn’t have gotten through them without the support system I have.
My appt is scheduled for Monday in Peoria. Then every 2 weeks after that till baby is born. Being 23 weeks pregnant, I guess I have probably 7 more. With my OB being in Bloomington, I’m starting to think we should maybe consider relocating for a while :)
(For some of you, you already know this -- sorry for the repeat!)
Thankfully, the thyroid blood tests, glucose, etc., all came back normal -- yay! Problem, however was my blood pressure. Weird, eh?!
Yeah, I had SUPER high BP. It was worse than when I was pre-eclampsic with both Noah and Maia during my pregnancies. At the beginning of my appointment it was 148/98, second time it was taken (different person and different BP thingie), it was 150/100 (2nd time was taken by the doc herself). She said THAT is what is most likely causing my dizziness. I've also been experiencing some heart palpitations (which I have never experienced before) and the high BP could be the cause of that, too. I've also been so tired and having bad bad headaches -- also symptoms of high BP. So I now start taking BP medications and in 11 days I call the doctor after having it taken and report in what my BP numbers were (my dad has a BP thingie that I'm borrowing and I guess Neil will be my nurse, hehe). We'll then go from there on what needs to be done next . . . I never ever thought THIS would be what's happening! At the same time, thank God it's probably nothing worse.
The BP thing is weird because other than during pregnancy, I have never had high BP in my life. It's always been perfect or below. So this is strange, but definitely explains why I have been feeling as "off" as I have!! Why the high BP, though, who knows? Could be stress. I've been under a lot of because I have had hair loss (caused by my birth control pills, another thing we had to go over at my appointment), and just so much else going on . . . been the busiest I have ever been with my work, my cat and a problem we're having with him forcing me to probably have to give him away, etc. I think it's maybe catching up with me. Or....I'm just one of those destined genetically for high BP. My dad has high BP and high cholesterol, both of which he can't control with eating and exercise because it's hereditary for him as well (he's in great shape -- very active -- eats very well -- he has tried, but it doesn't help him). His sister also has it, so did their mother, my grandma. I wish I had my mom's side of the family's genes. They seem to be much stronger.
I'm very happy. Still not feeling well because there's no magic answer for that. I will fill my script for the BP meds tomorrow and hopefully those will take effect right away. I look forward to not feeling so weird and dizzy and not myself. I've felt like I've been just "floating" and just not really "here" most of the time. It's been a weird experience. This morning I woke up with my feet tingly. It's kinda of scary when you know your heart is being affected and you can't really control it. I'm trying not to think about that or else I'll probably just make it worse being the worry-wart that I am.
I decided not to take on any weddings next year. I've turned down a 1/2 dozen calls, one at the country club of Champaign. I just think I really need the break. They wear me out during and after with all the proof work I have to do. And I really don't make all that money anyhow considering how much I spend working on a wedding as a whole. I do have one in Houston, TX, but that's it. And I'm not planning on anymore unless it's like Hawaii or something :) I think this will not only be good for me, but our family, too. I am actually really looking forward to being more "free" on weekends.
When I told the doctor about my taking no more weddings she said "noooooooo. You were going to photograph my daughter's wedding!" I said, "well, I'm always open to making exceptions and I definitely would for you." I love her. She is the best doctor I have ever had. Not because of what she said. She just is.
Neil is gone tonight to Pittsburg, so it's just me and the kids. When they go to bed I'm just going to enjoy the quietness. I really really think I need that.
Thank you for all your thoughts and prayers. Hopefully the BP medication is the answer. Pray that it come down and that my symptoms dissolve away. The symptoms have been the scariest for me. I want this to be something that is controllable and will allow me to continue living my life. The last 2 weeks I have hardly lived.
. . .for not being around. I have quite a few things ailing me. Figuring out a couple things (just yesterday we found out two) and still awaiting the other (next Thursday). Nothing to be worried about. Believe me, I'm relieved that I finally know what's partly wrong with me. I was so so so so worried. I know worrying doesn't get any of us anywhere, but it's really hard not to worry when you have a family that you still have to take care of. I was so exhausted and wasn't managing that well.
What I have made time for is my photography because, as I told some friends, it's really one of the only things that brings me comfort and joy, other than my family of course. I have found some great photography support in the flickr community, so I spend a lot of time there just looking for inspiration to improve my own work. Here's a recent fave of mine, which has also been a fave of my flickr-ites: 
Before I started not feeling so well, I did have a couple sorta big accomplishments. I saw that my 2nd billboard was up (!) which was discovered as Neil, myself and the kids were driving back from my cousin's wedding (which myself and my friend, Patty, photographed) in southern Illinois. I wasn't paying attention and Neil said "is that yours?" really calmly. And so I look up and uncalmly I shrieked, "YES!! Turn around!!!" So he turned around and I got out on the highway so I could take a picture. He was a little embarrassed by me, but hey, nothing new with Val :c)
So the wedding went fantastic-o. I still have not proofed them because I was busy finishing up some other sessions (of some cute adorable little people which you can see some of here), and then I started feeling crummy. But I'm hoping to begin working tonight on that wedding. Finally.
And then last weekend was Heather's bridal shower which my mom and I threw for her. It was a huge success in every way. We all had a blast. Afterwards mom and I packed up some of our stuff and went to Heather's for the evening alone, just the girls, watching movies and snacking on the leftovers from the shower :)
Speaking of Heather, she and Lee closed on their house yesterday, the one which I showed you all a little while back in this post. Soooo exciting for them. Their first home for both of them! Congrats you guys!
I feel like I've lost a lot of bloggy readers and that makes me sad, but I totally understand. I just don't have time for it as much as I want to have time for it. I haven't had time (or energy) to blog and haven't had time (or energy) to read the words of my dear blogging friends. Please forgive me on this, too. One day I will be back full-swing.
I leave you with this:
You are built to pull a cart,
to lift a heavy load and bear it,
to haul up the long slope,
and so
am I, peasant bodies, earthy, solid
shapely dark glazed clay pots that can
stand on the fire.
—Marge Piercy
My brother suddenly has a Staph infection in his arm. It's really really bad. You know how men are. They hate going to doctors and put it off and put it off. Chris finally went in over the weekend because his arm was swollen badly. They thought he had a spider bite. He came back a few days later because it had progressed. The redness and swelling had went up his arm and he started feeling tired and weak (we're talking a big big boy, if you know who my brother is). So they tested the area and 48 hours later it was confirmed (just yesterday) that it is indeed Staph.
Chris is down in Kansas City. I saw pictures (Alexis saw them, too) of his arm. Oh my gosh, you cannot even imagine how severe it is. He does not have insurance so my mom has been sending him money Western Union to pay for his medications. He doesn't have family down there. I think he needs to be home. If it gets any worse, I think mom will make him come home if that means driving down there and getting him herself (which she would absolutely do). He can't work because of the pain and his fatigue (and he was about to start a new job on Friday), but with it being such an open wound and as bad as it is, there's no way he would be allowed even if he was feeling like it. Please please please keep him in your prayers. It can be fatal. I think he's scared and Chris never gets scared.
Anyone have them? If you do, can you tell me if you've ever had an eyelid swell up? That's what's happened to me.
My eye doesn't hurt but it itches. Actually, both eyes itch but my left one is swollen so much I can't open my eye fully. I've never had this happen before, but it doesn't surprise me. My allergies seem to get worse and worse each year. And the past few months especially, I've experienced lots of weird changes and I think I can blame it on hormones and my weaning Maia.
So does anyone know what I can do? Will my Zyrtec help? Anything o-t-c help? I noticed it last night, thought it would go down overnight while sleeping, but I woke up and it was even worse.
Guess it could be a cat? I'm allergic to them also, especially my short-haired cat, Chloe. I've never ever contemplated giving them up before, but if they are the cause of this, I may have to.
Help, please!
. . . she is doing amazingly well!!!! You can read all about her progress these past few weeks at her blog.
I'm just really happy to report yet another survivor of a brain aneurysm in my family. She is 79, so how truly amazing it is. She has such strength, not just physical strength but spiritual strength, as does our entire family. It takes an entire family . . . a strong network . . to get through something like this with flying colors.
They are about to let her out of ICU, and she may not have to have any sort of speech therapy, either. My other aunt told me she talked to her on the phone a couple days ago and how amazing it truly was. I'm just really happy to be able to report great news such as this. Yayyyyy!!!
So "what's up?", you ask. You know something is going on when Val doesn't post an entry for an entire day or when she doesn't comment on anyone elses!
Well, here's a synopsis.
Good things:
* Our septic is temporarily fixed. The roto guy was able to rooter it (is that a proper term?) 150 feet which is wayyyy further than anyone else has gotten recently. It solved our issues for now. Hopefully for a long time for the future owners, also. This sort of issue is very normal in an old part of a city like where we live. The roto guy said they replaced a tile system a block over and the sticker price on that was $2000. So if we were to do that, that's the sort of numbers we are looking at. Thank God we don't have to do that now.
* The basement no longer smells like ca-ca.
* While we have not sold our house, we have done some more things to spruce it up: new blinds in the living room (looks awesome!), a new ceiling light (which we have never had - again, looks great!), a new door mat at the back door (minor, but makes a world of difference!), and we put up an under-counter paper towel holder (chrome) and it looks so good!! It helps clear off counter space and just makes it look bigger, which is a big plus since we have very little to begin with.
* We met with our builer and finalized our house plans. (Oh that was fun!!) And now we wait for the bid, which should come back the end of this coming week.
* I finished one big wedding album, met with her and her mother (bride is from Atlanta), and she was so very happy with the results - it made my day yesterday. And, she is coming back home in June for a baby shower and she would like me to do maternity pics --- oooo, my fave!
* I have had 6 different photo shoots in the past week, and that is a lot for me. But, I had a blast at all of them and I can't wait to show off my sessions. I'll be posting today and the rest of the week at VWC. I am having more and more fun with my photography as I try new things!
All-in-all, things are looking up . . . except . . .
The not-so-good things:
* My bf's baby boy, Brodey, (2 months old) was put into the St. Louis Children's Hospital hospital for RSV. He spent 2 days there, but thank God he is doing better and is at home now. But please still keep him in your prayers as the recovery can take some time.
* We haven't had a single call in about a week. But, when we met with our builder yesterday, he gave us some great ideas to help us sell by ourselves. We really really need to sell ourselves to save us that realtor commission. Neil said if we went down too much more on our asking price, that we won't be able to have enough of a down payment on the new house. (Another good thing - the realtor we met with did tell us a) he was surprised it had not sold yet and b) that our price was good.)
* My aunt is in the hospital and is criticial. She had a brain aneurysm yesterday. She has made it through so far, which is a good sign (many don't even make it this far), but she is 77 yrs old. Her age is going against her big time. They are doing surgery (going in behind her ear) today. If she makes it through, she will be in ICU for a while and probably will be in the hospital a total of 3 weeks. What scares me is, her chances are slim. And, it worries me that this could be something genetic perhaps? My dad had a brain aneurysm when I was in 7th grade. He was in ICU for 2 weeks, but he made it through! So I am hopeful, but at the same time, my worries are high again. For many years every time I had a headache, I thought I was going to die. My fears are escalating again. The most important thing right now is for us to keep my Aunt (Barb) in our prayers. She needs them right now desperately.
On a very happy note . . .
Tomorrow is Easter! It's easy to get caught up in the material things with the holiday, just like with Christmas. I do it and I wish I didn't. It wasn't the Easter Bunny that died an rose again for us, it was God. My friend, Amanda, wrote about this a few days ago. We must must must remember why we even have this holiday. We wouldn't be here if it weren't for Him. We wouldn't be given the chance of everlasting life if it weren't for Him. Please remember what tomorrow is really about.
God Bless!
I am here . . . sorta . . . Mr. Yucky Flu has jumped into my body and taken over . Hubby taking care of all of us . . . we are so lucky to have him.
I'll try to check back in soon . . .
It is another day and with that, the dreaded "d" word has made it's appearance from Noah. Ugh. I was hoping this would not start, but from what I have read online, I should have known he wasn't going to escape from getting it. I thought he was getting better, but this morning, after attempting to give him a drink, he threw every ounce of it up and then the other happened out the other end. Ewww. I'm really going to worry now because this is when dehydration can get bad. He has lost weight, you can tell, and for my boy that is not good. He's so very tiny as it is. So back to worrying for me . . . and cleaning up even more yucky messes.
Maia, I think she has it, but it's nothing like Noah. She's got a fever, has thrown up 3 or 4 times and has had "d" too, but when she's not experiencing these things, she's running all over the place. She's not eating or drinking much, but on the most part she is a million times better than Noah. I can't believe we're in day 3 of massive vomiting for him. When will it stop?!
I thought I would share something kinda interesting. I'm sure, especially if you have toddlers, you all know of the Doodlebops. Some of you may even refer to them as the dreaded "D". (hehe) Noah dislikes them (usually) but Maia really loves them. I personally find them rather freaky. I prefer watching Boobah or even the Teletubbies! Anyhow, I have always wondered what they looked like without all that makeup on. So I found some pictures and thought I'd just post them for a little fun.
I had always found myself wondering about Rooney Doodle, and here he is, real name, Chad McNamara. unmasked. Kind of a cutie! Then there is DeeDee Doodle, real name Lisa Lennox (she is quite pretty), and Moe Doodle, real name Jonathan Wexler (I love his pink shirt, tie and snazzy suit a lot!).
How in the world do they put on all that makeup, big fake scary hands, wigs and bright tight costumes and sing and dance like they are 4 again? I don't know. It sure takes talent and I'm sure glad it's not me! I'll stick to photography.
They say if life hands you lemons, make lemonade, right?! Well, yesterday I did just that. While I couldn't go get a pedicure or go out to eat or go shopping or spend time with friends like I had hoped, I did make the most of the day yesterday.
When both my kids were sleeping, which rarely ever happens anymore, I made myself a big bowl of chocolate frozen yogurt, piled on top of two broken up Girl Scout Thin Mints (my fave!) topped with Hershey's chocolate syrup and dark chocolate Easter M&M's. Mmmmm . . . it was yummy, and here is that treat, now gone gone in my tummy tummy tum.
Then at the end of that pleasant mommy time with no children throwing up or needing me, my mom called, asked if she could come by and brought me a hot much-needed Vanilla Latte (non-fat of course to compliment the dessert I had right before that) from Starbucks. 
She had also brought me a wonderfully smelling tangerine candle and some treats for my kids. (Thanks so much, mom! You're the best!) By the end of the afternoon, I had had 3 of my favorite tasty treats - ice cream, Starbucks coffee, and Diet Dr. Pepper. I was happy. Who could honestly ask for more?!
I also got a great treat in my tulips that have been sitting not bloomed for a week now on my table. Well, yesterday they began to open (see pic above) and wow they are beautiful!! Added another smile to my day. Nothing much more exciting (to me) than flowers blooming with a surprise of color and freshness. I so love flowers.
And then, I had a couple phone calls or text messages from friends wishing me a happy birthday - Kristin, Katie, Heather, Jamie & Alexis, and birthday cards and emails from a handful of people as well (Thanks, everyone, for remembering me!) And when Neil got home from picking up Noah's prescription last night, he also brought home two bouquets of flowers for me and a bottle of wine. What a great hubby. I'm so incredibly lucky.
So, in the mist of mommyhood trials and set backs, there are happy endings. So, Happy Birthday to me, and Happy St. Patty's Day to everyone!
I think we are on the mend. Everyone is sleeping (yes, it's 1:00 in the afternoon - we didn't get much sleep last night!) and so I'm enjoying another peaceful quiet moment. Sure, I wish I were in Columbus shopping with Alexis, but hey, it could be worse. I'm just thankful we didn't have a hospital visit last night or this moring. It really started to look like we were heading that route. We still have to cross our fingers where Maia is concerned, but so far, so good. Phew.
First of all, there is some hope with Noah's vomiting! He has only thrown up twice in 3-1/2 hours and we think those two times were because we let him drink too much all at once. My poor boy is drinking like he's never had water in his life! Prayers, prayers and more prayers that he continues to keep most of it down. (The thought of dehydration and being hooked up to i.v.'s is scary!) The phenergan seems to be working, but I've been reading up on it (thanks to the internet which can force me to become paranoid!) and while it is amazing stuff, it can also be scary. We'll be keeping a very watchful eye on him all night. Thank you for all so very much for the thoughts and prayers today. A network of friends is an amazing thing!
Secondly, I have been highlighted today as a featured favorite blog by Janice at 5 Minutes for Mom! I never ever thought I would be featured, but how exciting! Finally, on this dreaded 31st birthday of mine, I'm feeling a little special. (*blush*) Thank you for all your kind words, Janice, and for giving me not just recognition for Purple Valley, but for my passion of photography @ VWC and for Grandma's Diary. It's all such an honor. Really, it is. Keep up the hard work at 5 Minutes! You and Susan are inspiring women yourselves!
This day has been crazy. Noah is sick. Very sick. Still throwing up. He's thrown up about 2 dozen times in the past 18 hours. He is keeping absolutely nothing down. We took him to the doctor. He is on the verge of dehydration. We are to try one more thing - suppositories, which are suppose to center his stomach (?) and help him keep fluids down. If he still throws up, his doctor is admitting him to the hospital tonight. He has to have fluids. He is not responding to much of anything - will not answer questions and falls asleep sitting upright. It's starting to scare me. Please keep him in your thoughts and prayers. The next couple of hours will be critical and will be the deciding factor on if he goes to the hospital or not. Also, he said most likely my Maia will get this. He thinks it is the rotovirus. It's scaring me.
I should be in the car right now driving Noah and myself to Ohio to see our dearest friends. But I am not. And that is because Noah is sick. Yep, he is sick. Puking his guts out sick. Started throwing up about 2 a.m. and still is now at 9:20. Can't keep down Children's Pepto, water or Pedialyte. Has nothing in his system so he keeps throwing up foamy goo. He has a slight fever, too. Maia is fine, thank God.
This sucks. Really really badly. Alexis has already left and is past Virginia. She can't turn back now. I have never felt so disappointed before. Makes me cry. I feel so bad for my baby boy, but I also feel bad for Alexis and Sami. I keep praying this this will be over in a couple hours so that we can still leave. I was so so so looking forward to this time for AJ & I, and also for Noah & Sami. They deserve this time, so do we, and it's not going to happen very often when they live in North Carolina and she has to travel through and around mountains to get anywhere west of her.
Time to go clean up more goo. Happy happy birthday to me.
Edited in purple pedialyte color in lieu of my baby boy to say: we are definitely not going. Kept throwing up all morning, took a bath, then threw up again. Fever of 100. He is now sleeping curled up on the floor. Alexis is so so so understanding (why would I think any differently??) and said to promise her to go out tonight for dinner or go get a pedicure for my birthday. She is even making me check in so she knows what I did. I have a feeling I won't do anything. I will feel badly for Neil to come directly home from work, then take care of two kids, one being sick, and then send me off for some fun. I actually think I would rather be here parked on the couch watching my basketball games (gooo Illini . . . go Saluki's!) . . . but of course only with a glass of wine in hand, or better yet, a margarita. That will make all things peachy-keen. Almost.
Have fun without me, AJ. Will miss you guys. Already do.
