Care Package Etc

After getting home from the long awaited appt with the neurosurgeon, what to my wondering eyes should appear? But a priority mail box from a friend not so near. It was filled with lots and lots of fun stuff from my friend Missy and her family and it made me feel so loved! Here are its contents:*not pictured: a wonderful card with messages from Missy, her husband, her brother, her sister, her mom, and her dad! Oh and Lindor Truffles!

• Neurosurgeon Visit: It went well in the regard that he was very informative and showed me my mri and ct scan from the hospital. He showed me the part where he saw bleeding around L3 vertebrae and pointed out that it was actually a clot (go figure, I can't get away from those suckers!) and it was right in the vertebrae fracture line so he was worried that if it continued, a chunk of that vertebrae would have actually broken off. Let me say I'm glad he caught that one because that sounds pretty painful. When he was scrolling through the testing I had done from the hospital and radiology ltd, he was like 'oh you got a dexa scan?' Which is the bone density scan I had just done 2 days earlier and I asked if he could look through the results of that since none of my drs had called me about it yet. So after he showed me the other stuff, he read through the dexa scan and kept saying 'Ooh. Oh. Oooh.' Like not in a good way. Then he said that I have Osteopenia. Specifically the 'socket' part of the left hip was like -1.8 and the 'ball' of that hip was around -2.4. Normal is 0, anything between -1.1 and -2.4 is Osteopenia, and anything lower than -2.5 is osteoporosis. He agreed that the bone loss could be part of the reason that my vertebrae got fractured from my fall into the soft sand. He said since I'm so young (I seem to be hearing that a lot lately) I could probably reverse the bone loss with tons of supplements and I need to have my level of vitamin D3 checked. He said it would be a good idea to do strength training to improve my bone strength and that I could start trying out yoga and really low impact things like a recumbent bike in about a week. Oh and big news is, I get to try to take care of the girls by myself starting Tuesday! Nola is about the heaviest thing I should try lifting at this point at about 16 lbs, wish me luck! Silver lining in all this is that the rheumatologist that my hematologist wanted me to see is willing to see my now even though he's not contracted with my insurance. So yay for getting away from the sucky rheumatologist I have now!
• Rheumatology Visit: eh well, you know, it sucked as usual. I don't like this guy. Basically he just checked my head for lesions because my hair has been falling out in masses since I was in the hospital the first time. No lesions. I told him I wanted to get on Benlysta (the first lupus drug to be approved in over 40 years with some amazing testimonies to it's effectiveness) as soon as humanly possible. He said that he doesn't know exactly what the point of their trials were and he's seen no reason it should be used over the other treatments they have like using cellcept or other extremely harsh meds. Hello!? Benlysta actually stops your B cells from attacking like maniacs and allows your body time to heal itself! Just the thought that at some point in my life I might be able to feel 'normal' again makes me giddy. Other than that, it's dang expensive, like 2k/month and I'm not sure my insurance would cover it.

Today was our 6 year wedding anniversary! We took the kiddos out to my parent's house at around 11am and left them there to spend the night. They're so adorable! I just want to love on them all day long! Embry says the cutest things and I laugh all the time at the crazy stuff that comes out of her mouth. Recently as a response to her doing something good, she says, 'You will be so happy for me!' The other day Tony was wearing his pajama shorts and she goes to Tony, E: 'are these your shorts?'

T: 'yes those are my pajama shorts.'

E: 'that's your butt in there!' while pointing

The cutest part though is how much she accentuates the 't's on butt. Argh, so cute!

And Nola, well, she's just adorable. I love her big cheekies and her little rosebud lips. She's got her two little bottom teeth now too which makes for even cuter baby smiles. She's doing 360 rolls all over the place and she's kinda started to figure out how to scoot herself backwards. She laughs at things Embry does all the time, it's so cute!

Anyway, I got on a tangent there. The anniversary was good! We had lunch at the Olive Garden and then did some shopping where we found great deals on workout clothes for both me and Tony. I also got a few new tank tops because not only did I need some in general but with this back brace all of my tops are super tight to pull over it and try to hide it. The shopping was hard for me, hard to stand and walk that long, but we took many breaks to sit and rest. Then we went to see 'Thor' which, surprisingly, I really enjoyed. Then we came home and our wonderful friend Katie made us a delicious pot roast (seriously, one of my favorite meals) and we watched 'Beyond Borders' from Netflix which was quite depressing, but I got an anniversary foot massage, so it was worth it.

I've been thinking a lot about life lately. Why certain things happen...I guess I won't know for a long time. In the meantime, I'm going to enjoy every second I have with those who I love, especially my kids. Recently a girl that I knew from school in Wisconsin lost one of her 6 month old triplet boys. They don't even know what happened, he just stopped breathing, I mean how terrifying must that have been for her? I can't even imagine, I don't want to, but I know it's been weighing heavy on my heart ever since I read her blog. I don't know why these things happen, but I've been making sure to love on my babies so much more because of them. Please stop by Melissa's Blog and pray for her and her family or leave a word of encouragement. Life is precious, please don't waste a moment of it.

The other night, Nola was uncharacteristically whining in her crib long after she had gone to sleep. I decided that maybe something was wrong, so I went into the nursery and checked on her. Besides having a wet diaper, she was fine, so I changed her and then sat and rocked her for as long as my back could stand. I hadn't gotten the chance to do that with her yet. I went into the hospital when she was 6 weeks old and when I got out, I could barely hold her. Then she started sleeping through the night so she never needed me. Then this horse accident happened and once again I wasn't allowed to lift her. Things happen, people get busy, but I'm determined to remember what is important in this life and make time for long snuggles and saying 'I love you' and really meaning it.

Nola is 7 Months Old!

Good News

My echo cardiogram came back perfecto! It's pumping at 55-60% which is perfectly normal. My hospitalist said it must have been divine intervention that kept me from dying back in December...truer words were never spoken! Also, my chest CT looked good. There's a bit of residual fluid and scarring at the bottom of the lungs, but that's to be expected and they'll just keep getting better with time.

It's Lost

I feel like I've lost my funny.

You know, I used to see all these things, day to day things, and think, oh gosh that's funny! I need to blog about that! Sometimes I still get it back. Like when I was standing on wobbly legs in the middle of a wash, Tony pretty much holding me up while I wiped my snot on his shirt, and I looked at him, whined, and said 'why did I have to get the stupid horse?' Or when the nurse tripped on something in my room, let an explicative fly, looked at me and apologized profusely. I don't say, 'oh it's ok, no worries!' Instead I say 'that's it! You're fired! Where's security?!' I guess in situations where there seems to be no imminent light at the end of the tunnel, I turn to humor because, really, what else can you do?

I used to laugh...a LOT. Now, I guess life just doesn't seem that funny anymore. I'm kind of in a funk of wondering why these bad things keep happening to me when I try to hard to do the 'right' thing and yet I see people all the time being 'rewarded' (or what seems as being rewarded) for doing the 'wrong' thing. I don't want some amazing life with lots of money and a huge house and hours spent lounging by the pool while the maid washes the windows, I just want a normal life. I wonder all the time how incredible it would be if I was healed. I mean, if I could run around with my kids and roll on the ground and laugh...I don't think that's a whole lot to ask for, but the thought of other people having that ability and not fully enjoying it, well it's turned me into a grouch.

In no way am I perfect (hahaha, let's all take a moment to laugh. Ok that's long enough.) and I don't deserve anything more than anyone else, but geez, can't a girl catch a break?! Now is the part where I get mad at myself for feeling this way because I'm blessed in a million ways, more than I could ever name. When I first called my mom from the ER when I found out about my back, she said 'why does this stuff have to keep happening to you?' I know it was a rhetorical question, but all I said was, 'well it could have been A LOT worse' so all I should feel is thankful that I'm still alive and didn't get trampled or hit my head on a rock or gotten paralyzed.

When I think about it all in the short term I'm reminded of how far I've come since Dec when I was literally on the brink of death and I think, 'it's only 6 weeks. If I make it for 6 weeks, then everything will be ok.' I now realize that I never asked if there was going to be any lasting damage from this injury, but from the way the drs talked about it, it seemed it would all just repair itself. I guess the only thing to do is pray about it and trust that God knows what he's doing.

Dear God,
I just want my funny back. You know what I mean. I love you.
---Leatrice

Here is a print out of my CT scan. You can see the 4 vertebrae above the tailbone are not square, they're squished. I've lowed my dose of pain meds, but quickly found out that if I try to lower them too much it becomes quite unbearable. I'm having mixed emotions about all of this. I'm upset that I was only 'normal' for like a month and then got sent right back to not being able to function again because of some stupid horse. I'm sad that I don't get to watch my kids or play with them when they are home, but also happy that I have so many friends and family that are willing to watch them during the day when tony is working. I really appreciate all the help and we definitely couldn't make it without the help, I just wish I didn't need it in the first place. Every morning when I wake up, I think, this will be the day where I am all better! Then I try to get out of bed and realize, nope, not today.

Anyhow, I saw the hematologist today and he said my blood tests came back normal. He wants me to see this certain rheumatologist that is also a bone specialist. Of course he's not contracted with my insurance, but the hematologist talked to him and he said he'd see me for free if I have an abnormal bone density. That means I'll be going in for a bone density scan sometime.



Nola is babbling a lot more. She's making ga, da, ra sounds and just being cute overall. She loves playing in her jumperoo (she's fallen asleep in there a few times recently) and scoots herself backwards in her walker. We've been giving her baby food before giving her formula and she seems to like most of it pretty well and is actually swallowing it. She hates the meat ones, although they're only in the level 1 baby foods so we're thinking they don't taste too appealing. Tony took her to her 6 month dr appt last Tues (5/10) and she said we could stop the acid reflux meds since she was spitting up less (although I don't really understand that) and she prescribed some nystatin cream for her diaper rash. I obviously didn't get to go since I was in the hospital, but Tony brought home a paper with her stats:
Height: 27" (>75%)
Weight: 16lbs 3oz (50%)
Head: 40.5 cm (5%)

Embry has been doing pretty well going on the potty with all of this shuffling around from house to house. I was hoping it wouldn't derail our progress. She's had a few 'accidents' here and there, but we figured out that if we send along her potty chair, she tends to do better. She sure is getting a lot of time to play with her friends through all of this!

Horse back riding = pain

Here's the deal: I got bucked off a horse on Saturday and the only picture I got was of Tony's backside while he was trying to get on his horse. Really this is quite ridiculous.

The Story: We bought some tickets through living social a while back for a 90 minute horseback trail ride at Pantano Stables. I wanted to go for my birthday last year, but I was 8 months pregnant and in a bit of pain, so I decided not to. The tickets expired on May 13, so we needed to use them last weekend. We dropped the kiddos off with Danielle at 7:30am on Saturday and drove over to the stables. We were riding with about 7 other clients (4 little girls and 3 adult women) and 2 'wranglers' that work at the stables. We were the last 2 to get on our horses. While one of the women was mounting her horse, she said she was an experienced rider and wanted a horse with a little bit of spunk. Naturally I say, 'I'd like a horse that's exactly the opposite of that, like if he was any slower, he'd be going backwards!' They gave Tony and I what they deemed as tame horses and we were on our way.

There was a wrangler leading the pack and a wrangler behind me bringing up the rear. We went down into the wash to start the ride and I asked the wrangler if he'd seen many rattlesnakes out there on the trail rides and he said, 'well, me personally, no. -pause- but this is my first time doing this.' Turns out he normally drives the stage coach out at Old Tucson but the stables were busy that day so he came over to help out. A girl that was riding about 4 horses in front of me had one of those horses where they just mosey along and try to eat any tree or bush in site, so the wrangler rode up next to her to make sure her horse didn't get too far behind.

All was well, we zig zagged from the left side of the wash, to the middle, the left again. I noticed that when my horse went downhill, he would sorta trot for a few steps, which was fine with me, whatever. Then we crossed over to the right side of the wash, went uphill a bit, and made our u-turn to start the ride back. Before we started going downhill again, my horse started to poo. Earlier in the ride, the wranglers said to stop if the horse needed to pee, but to make them keep walking if they were pooping. I let him stop for a few seconds to figure out what he was doing, then made him keep walking. Then we got to the hill down into the wash and after he took the first couple steps, he bucked and I went flying. It was uphill on our left, and downhill on our right. I flew out of the saddle towards the right side while yelling 'aaaaaaaaaaahhhhhhhhhh.' I did a sort of sommersault/roll mid-air and hung onto the reigns while I was in the air. I could hear Tony calling my name as I was flying. I closed my eyes and landed on the back of my right hip and rolled onto my left side. Somewhere in there I let go of the reigns. As I was on the ground I could hear the horses hooves beating on the ground and I just kept thing 'oh God don't let him step on me!' Luckily he didn't.

The wrangler that was supposed to be behind me got off his horse and came over. There was blood mixed with a clear fluid (I'm guessing maybe snot) dripping out of my nose and I had those prickers all over my clothes. Luckily I landed in the 'soft' wash sand. If I had landed further down there were a lot of rocks and if I had gone off the other side it would have been closer to the ground, but also on very hard ground. The wrangler asked if I could move and if I wanted to try to stand up. I didn't really think I should move in case my back was hurt, so I was getting a little agitated and said (in a not so friendly way) 'call 911, doesn't anyone have a cell phone?!' Tony said something about my hips and kept asking if he could get off his horse. I told the guy I have bad hips and he wanted to to roll onto my back, so eventually I did, which hurt SO bad. Then I went back to my side, then to my knees, and I stood up with the help of a wrangler and Tony. An employee drove his truck down through the wash to pick me up. That truck ride was a bit bumpy and really painful and when we got back to the stables, the fire truck with emt's arrived right away. They put me on a flat board, put on a neck brace, and taped me down the the board (including a huge chunk of my hair). My bp was quite high, like 190/130 and eventually the ambulance got there and took me to the hospital.

I was in so much pain on that flat board, I can't even tell you. It was definitely worse than giving birth without an epidural! I asked everyone (the emt's, the ambulance guy, the nurses in er) if I could have pain meds. The first 2 didn't even have any and then some guy (I'm not sure if he was a nurse or what) in the ER said, 'well first we're going to get your IV in, then we're going to do some x-rays, then maybe we'll talk about pain meds'. I swear I almost slugged him, jerk. Then my actual nurse came over (super nice) and I asked her and she said, 'oh I'm giving those to you right away!' and had them in her hand.

Once I went to CT, they got me off the flat board (yay) and saw that my L2-5 vertebrae (lower back) have compression fractures from the impact of the fall. Later they did an MRI which showed that there was bleeding around L3 so they needed to stop my blood thinners. Doing so would mean they'd have to do surgery to put in a temporary clot filter in my groin area. I did that under conscious sedation and I'm happy to say I don't remember a thing. Then they gave me 2 bags of plasma to help clotting and another 2 the next night.

I have a back brace to wear while sitting or standing for the next 6-8 weeks. I'm supposed to keep as much pressure off of my back as possible which means to picking up the kids or cookware or doing any housework or anything that could make me twist. It's supposed to heal on it's own in about 6 weeks, but I have an appt with the neurosurgeon to see how it's progressing in 2 weeks. The hematologist also said that one of my clotting factor blood tests came back funky, so he repeated it and I have an appt to discuss that with him next week. I get to inject myself with low dose blood thinners for 14 days and then they'll decide if they're going to take out the clot filter and start me back on the pill blood thinners again.

I got out of the hospital yesterday and I'm feeling better today. I just have to make sure to stay on top of my pain meds. I was getting quite nauseous in the hospital with the pain killers (they started with diloted, then morphine, and now I'm on oxycodone) so I'm taking some anti nausea meds too.

Nola is 6 Months Old!

Nola turned 6 months old on April 26! Her 2nd tooth started coming through a few days after her first. It's the other front bottom one. She seems to be in a better moood now that they've both popped through the gums. Yay! She's done a couple of 360 rolls too, so I'm sure she'll figure out soon that she can get into stuff if she rolls far enough. I'd say she's still spitting up about the same amount, maybe a smidge less, but I don't think the medicine is working as it should. She has her 6 month appt next week, so I'll ask about it then. She's doing really well overall and is sooo smiley! I love her!

Embry has been sick for about a week, but is markedly improved today. Her poo finally solidified (yay!) and she hasn't thrown up for about 36 hours, so I'd say she's over whatever it was. It started out as what I thought was a 24 stomach bug. She thew up at night and then not again for 4 days, then we tried to go camping this weekend (which she was SO excited about) and halfway up the mountain she threw up all over the back of my seat. Then 2 more times at the campsite and then I took her home to spend the night at our house where she got sick 3 more times. My mom came over the next morning with Nola (who she was going to watch at her house while we were camping) and stayed here with Embry. She got sick 3 more times while I was gone that day which prompted Tony and I to finally give in and come home from the camping trip. All in all, it was pretty much an utter failure. I guess we just weren't meant to go camping last weekend. Did I mention that the campsite was about 2 hours away? Oh well, maybe next time it will work out. That's life with kids: unpredictable.

Good news is my hips were feeling significantly better the past week or so. Although after going on a 'hike' (as in, I turned around 1 mile into a 5 mile hike) they're not feeling quite as good. I am hoping for the best for the hip thing, that was pretty bad for a while. I had my repeat chest CT scan today and should get the results in a couple days. I was supposed to have my repeat echo cardiogram too, but they called and rescheduled it for tomorrow since one of the techs was out today. I was actually supposed to have it last week, but then Embry got sick.

My Hip

The dr said this:
-the bone on the inside of both of my femurs has died, but it should regenerate on it's own based on my age
-the femoral head of my left hip (the ball part) is deteriorating but since it's not causing me a lot of pain, they're not doing anything about it
-my right hip is fine structurally, so he thinks it's bursitis and is sending me to physical therapy to teach me how to stretch it

Overall I didn't like him. Might partially be due to the fact that last time my dr told me to go to physical therapy to solve my pain issues, I ended up almost dead. Either way, he seemed condescending and I didn't want to ask him any questions or tell him about my other areas of bone pain because he didn't seem to give a rip. I asked if they shouldn't monitor the left hip to see if it deteriorates more and he said 'well if you start experiencing more pain in that hip then you should let me know.' I said, 'so it doesn't matter how much pressure I put on it, walking, running, that's all ok because you said it isn't going to break?' and he replied, 'well you shouldn't be running anyway due to your other health issues, but walking and regular activity would be fine.' So I take this to mean, I've just got to deal with the pain and move on.

23 weeks old

Nola at 23 weeks with grandpa Don

Me with Embry, Me with Nola

Embry, Me, Tony, Nola
(all about about 6 months old)

My appt with the orthopedic specialist is tomorrow morning, bright and early at 8:30. I'm excited because I'm hoping they'll have a good solution as to how to fix this pain. I'm also a bit nervous because I've gotten the response 'well, there's nothing we can do, so live with it' a lot in the past and I'm really hoping they don't say that. I forgot to mention about the pulmonologist, he said that he wants a repeat of the lung function test in a few months because it showed that the rate at which oxygen is going from my lungs into my blood is 52% and it's supposed to be at 100%. He thinks it's just because the test wasn't done very long after the whole incident so things might not be up to par just yet. Anyhow, I'm also slightly concerned because now my left shoulder, left hip, right knee, and right ankle are feeling about as good as my right hip. It's all very mysterious because remember before, like back when I was pregnant with Embry, I was getting those steroid shots in my shoulder and hip? Well, funny thing is, it's the opposite shoulder and hip now. Needless to say I'm not sleeping very well. It takes about 3 hours to fall asleep and then I roll from side to side about 15 times during the night, no joke. Tony has been giving Nola her 5am feeding so I can sleep, but I change her diaper, so after that it takes me another 1-2 hours to fall back asleep. Blah blah blah. I'll try to make a post tomorrow afternoon to update on what the dr says.

Nola is getting her first tooth! I found it yesterday on 4/20 after much feeling around and staring into her mouth while she tried to push my fingers out with her tongue. It's the front bottom left one (just like Embry) and it really helps to explain why she's been so fussy for the past week. I was really hoping she didn't actually turn into a fussy baby for good because I always brag about her being the good one. I tried to get a picture, but it didn't work out too well because the flash on my digital slr broke and I can't get the normal flash to pop up on it. She's also trying to sit up on her own. She does it in her bouncer and her swing now, she tries from laying down, but can only get her shoulders up so far. Due to the teething, she hasn't been taking very long naps which makes things a little difficult for me.

22 Weeks Old

Soooo, I don't mean to sound like a broken record here but my gosh, my hip hurts! I'm not sure how I'm going to make it till my orthopedic specialist appt on the 22nd much less do all the things that need to get done between now and then. I'm sure I'll manage, but I'm pretty sure it's just getting worse. Tony told me to call the dr but I don't know which dr to call since the one who ordered the mri is the hematologist and he doesn't need to see me anymore, my primary care dr I've only met once and she probably doesn't know about the hip yet, and the people at my insurance co clinic are hospitalists so they can't do anything. Even if I did call someone, I'm not sure what I'd say anyway...'Hi, I'm in a lot of pain. Help.' Update: called to see if they could move up my appt, they said no.

I went to see the pulmonologist last week and he said 'I'd be very very scared if you had to have surgery.' So if I do need a hip replacement, he doesn't want me to go on the heparin drip (like I was in the hospital) because he thinks that might have been part of the reason my platelets kept dropping. He also wants me to get a removable blood filter in case I were to clot while I'm off the blood thinners to keep the clots from going to my heart. He also ordered an echocardiogram and a chest ct. He said that when I had the first chest ct done, it showed some other foreign objects in my lung other than the clot, but he did say that sometimes a clot can make it look like there's more junk in there than there is. So basically he wants another one to make sure nothing else is in there. Needless to say, it wasn't a very 'inspiring' appt, but I'm glad he's actually making an effort to get stuff figured out.

Nola can roll over! She went from front to back and then the next day went from back to front. Now she seems to be doing back to front a lot and gets mad when she's on her stomach for too long. Her acid reflux meds are super hard to get her to actually swallow, so I think I might call and ask for the liquid stuff. She's still spitting up as much as ever. I think I might try real baby food soon and see how that goes. Update: asked for liquid prevacid instead (after trying to scrape all the dried disolvable tablet out of her neck folds this morning).

21 weeks

The results are in: the hip bone has died. The hematologist said he thinks the bone might be able to regenerate from the inside-out, but it's not his area of expertise so he's sending me to an orthopedist. They can't get me in until the 22nd, so I guess I'll find out then what the plan of action is. The hematologist sounded like they'd need to figure out whether the bone is still sturdy enough to last or not. So at least now I know why I'm in so much pain!

We went up to Phx over the weekend for Allison's baby shower. It was fun, but Embry got sick on Sunday so we came home early. No Renaissance festival, oh well, it would have been super hot anyway. Tony's mom and sis are moving into a 2 bedroom apt in June, so I'm not sure that we'll be able to go up and visit them much after that. They should be down here for Easter which is coming up pretty fast.

Tony and I went on a 'date' to the Old Spaghetti Factory while we were up there. I was not impressed with the food, but the atmosphere was neat. Our 'homework' assignment from our counseling session last week was for Tony to tell me what he felt while I was in the hospital and for me not to say anything, so we accomplished that. I feel like a weight has been lifted now that I know what he was thinking, that was really weighing me down.

Nola is still not rolling over although I've been working on it with her, so should be anytime now! She tried rice cereal and wasn't too impressed, but not opposed to it either. She did however spit most of it up a couple minutes after I was done feeding her. Haven't seen any results from her acid reflux med yet, although it says it could take 4-8 weeks to start working. Embry is doing really good with the potty...I'd say she's pretty much potty trained, fingers crossed!

Nola is 5 Months Old!

I took Nola for her 4 mo check up on 3/29 (over a month late) and here are her stats:
weight: 14lbs 5oz (25-50%)
Height: 25" (25-50%)
Head: 39.5 cm (<5th %)
The dr said she should be rolling over between 4-6mos and that we should work on it with her. We hardly ever give her 'tummy time' because she spits up so much more (if that's even possible) when she's on her stomach, but we'll be starting that more now. Also, the dr prescribed her some Prevacid for her spit up issues. We upped her formula intake to 8oz every 3 hours, but she only keeps down about half of it. She gave her the dissolvable tablets and I tried to give her one this morning, hahaha, total failure. She kinda went like 'what's this?' and then started gagging and threw up all over the couch. So, we'll be dissolving it in a teaspoon of water from now on and then squirting it in her mouth with a med dropper. Much easier than cleaning the couch. I hope this helps because the poor girl is in a constant state of wetness. I mean really, I can't change her clothes as often as she soaks them and I know how gross it feels to sit in wet clothes. Bleh. Anyhow, I'll keep updating as to how it's working!

I finally got my hip mri done. After wasting a bunch of time making phone calls, I found out that the dr's office was waiting for my insurance to send them a pre-authorization before they sent the dr's order to the radiology place. Well the insurance co had sent the pre-auth straight to the radiology place, so they were waiting for the dr's order. I swear, NOBODY KNOWS WHAT THEY'RE DOING! Anyhow, so I went in yesterday morning (at 7, didn't get out till 9:25) and when the tech was getting me prepped I asked if she was going to do the dye scan. She said that since the dr didn't think I had an infection or anything that she didn't think we'd need to do the dye. Well after the first mri, she took me out and said, 'I think we better do the dye too.' This makes me wonder if she saw something on the first one that she thought might be 'wrong' and wanted a more thorough picture or maybe she just wanted to cover all her bases. They said it'd be 2-3 business days to get the results from the hematologist. I'm hoping to get some kind of answer because this amount of pain can't be deemed 'normal'.

I'm kind of sad knowing that I'll never be pregnant again.

Tony and I had our first counseling session through the peer counseling service at church. It was interesting and will probably be helpful. I think counselors have this ability to stare at someone in complete silence and not feel weird. I don't have that ability.

Allison's baby shower is this Saturday, so we'll be going up to Phx tomorrow after Tony gets home from work. I'm hoping to prep the food tomorrow so then it's ready to be cooked in Phx. I want to go to the Renaissance fair while we're up there, but we'll see if that actually happens.

19 weeks old

lounging in our pjs

(or banamas as Embry calls them)

My littlest girly is 19 weeks old!

Nola's still not rolling over. I've given up trying to move her along, I'm sure one day it'll just happen. In the meantime, Embry has taken to shoving Nola's butt off to the side and telling her to roll over. Nola has also figured out that she can make a lot of noise by screeching. I tried to get it on video, but so far, no success. She was supposed to have her 4 month check up yesterday, but it got rescheduled to this coming Tuesday.

We tried to get Embry to do a somersault, but she doesn't get it. If we help her, she does it, if not then she just rolls over to the side and yells, 'look at me, I did it!' Oh and she's almost always going poo poo in the potty now and when she does something right she says 'say yay for me!' Her imagination has exploded and she is constantly talking to her imaginary friends from Dora and Diego.

So I have to call my insurance company with my daily weight and blood pressure reading and I'm getting pretty tired of it. I understand they're trying to keep track of this to ensure I'm not retaining water etc but every time I report it, they call me back and ask me about my weight. Basically, they want to know why I weigh so much. Argh. I thought it was because of the steroids, but since I stopped those 2 weeks ago, I figured the weight would be coming off by now. Also our scale is messed up. I'll step on it once and it'll say 146, then 1 minute later it will say 152...I'm pretty sure that's not possible. While I'm on a rant, I'd like to say that I'm in a world of pain. It's my hips. You know how when you're pregnant you get really bad charlie horses? Well while I'm sleeping, that will happen, only it's in my butt, through my hip, and up my back. My house is in a constant state of disarray as well. Imagine how many times a mom bends down to the floor everyday? Well, I can't and therefore, whatever lands on the floor tends to stay there. I'm still waiting to hear about the hip mri. I should probably call them today and figure out what's going on.

Good news! It seems that Mello Yello (the coke version of Mt Dew) is becoming regularly available in the southwest. I found some at Walmart a few weeks ago and just about did a happy dance in the middle of the aisle. Then I went to the grocery store yesterday and behold, there was Mello Yello sitting in the soda section. YAHOO!

I missed a Week

Well, I got the blood tests back FINALLY and good news: no TTP for me! Woohoo! There was one blood test he didn't get so he had me go get some blood drawn for that (3 phlebotomists, 3 sticks in one arm, 1 in the other = good times) and he is sending me for an MRI of my hip. Oh, the ultrasound was fine, as I suspected. Good that there aren't any clots in there (esp since my inr has been low the past 3 weeks) but he's doing the MRI in case the bone has died in which case we'd discuss a hip replacement. So, we'll see. He's a funny guy. He told me that if I planned on having more kids that I should call him so he can go out of town, ha. :) I'm kinda sad that he doesn't need to see me anymore since he's actually a good doctor and nice, but I guess that's a good thing.

Nola is still insisting on rolling about 75% of the way onto her tummy, but she cannot get her arm out from under her. She's quite adorable. My MIL just left today after being here for 6 days and it was nice to actually get a proper amount of sleep. I got to sleep in today which is a good thing since the children refused to nap at the same time today (although Embry actually did sleep which is a rarity these days). Nola is also cooing a lot more and, dare I say, possibly spitting up less. I'm not sure though, it's hard to guage, but I'm taking her in for her 4 month appt next week anyhow so I'll ask the dr about it again. For now we've been continuing to put rice cereal in with her formula. The anti-spit up formula was nasty (all chunky coming back up) and also made her constipated so we went back to the gentlease.

I had my 'I'm Alive!' Party and it was awesome. There was a moment when I was walking downstairs and I could hear all the people chattering happily, see all the lights, hear the Christmas music, and I walked past the Christmas tree with a stupid smile on my face. I was just so happy to have recreated Christmas and spend time with all of my loved ones. Of course there were some missing, but it really turned out great. We played our version of Scribblish (hilarious) and Just Dance on the Wii (also hilarious), ate delicious food (ham, turkey, meatballs, wienies, potatoes, green beans, chocolate, french silk pie, apple pie, pumpkin pie...basically all you can imagine eating at Christmas), then set off fireworks in the backyard. They went a lot higher and were a lot louder than I had envisioned, so I'm happy none of the neighbors got upset...or at least didn't tell me that they got upset. :) Oh and for the most part, everyone dressed up pretty fancy which makes me oh so happy. I LOVE getting dressed up! Oh and I got my hair cut/highlighted the day before so that also made me feel good. Now the hard part: putting away all of our Christmas decorations!

Nola is 4 Months Old!

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Nola turned 4 months old on Saturday! She's getting to be such a big girl! I need to take her in for her 4 month appt but I know I have to do it late since her 2 month appt was done late. I'd like to know how much she weighs though. I think she looks pretty average myself, but I can definitely tell that her head circumference is super small. I put a headband on her that Embry wore as a baby and it wasn't even stretching the elastic enough to stay on. I have to say, she's quite the 'easy' baby. She really only fusses when she's hungry (and then WATCH OUT! It's a cry of death), needs her diaper changed, or is tired. She has started to get a little bit more squirmy lately though. If you sit her in the corner on the couch or something, she'll stretch her legs out straight to scootch herself down into more of a laying position. She does the same thing when you set her in your lap. She's also grabbing at a bunch of her toys now and kinda putting them in or towards her mouth. I have pretty much abandoned the mittens except she did gash her face pretty bad last week, but I feel that she likes to be able to grasp things at this point. Tony can make her laugh, but of course, I can't. It was the same with Embry...I guess my humor is an acquired taste. ;)

Tony's aunt came down from Maryland Fri night - Sun afternoon. She was in Vegas for a vet conference and stayed a little longer and drove down to see us. It was fun having her around! We played games, went out to eat, went to the desert museum, and watched a movie. I thoroughly enjoyed the desert museum since a)it was free with our pass and b)we got to do the long loop and see the cat canyon etc. Last time we went, we only did the short loop because it was right after thanksgiving and I was not feeling so hot. It's good to be well again!

Speaking of that, I feel like now that I'm pretty much 'back to normal' (whatever that means), that all the effort of friends etc going out of their way to see me, spend time with me, etc is just sort of fading. I mean, it feels like not many people actually think anything happened, or remember, or choose not to remember. Even for me it feels like nothing ever happened except then I go into the dr and am reminded, 'oh yes, I almost died so they're going to take extra special care of my health'. It's a weird transition for me to go from what seemed like everyone caring a lot to some people caring a normal amount. I'm not complaining or upset or anything, I'm just making an observation. It's also come up between me and Tony, like we'll be arguing about something and I'll just blurt out, 'I think life's a little too short to be arguing about this!'

Aaaanyhow, I'm excited that tomorrow I can get rid of all these empty milk jugs that have overtaken my shed (and a good chunk of my and my mom's time) because we'll be using them for the craft at MOPS.

I've gained 15lbs since I got out of the hospital. This is really making a dent in my self esteem. I'm pretty sure it's from the steroids and the best part is my face is super fat. I don't really notice it in the mirror, but when I see pictures, I'm like, 'woah, holy crud, what happened?!'

Still haven't gotten the ttp bloodwork back, or got called schedule the pelvic ultrasound, or got a call to reschedule my rheum appt. Oh and my inr was still low at 1.7 last week. I go in on Wed to have it checked again.

16 Weeks Old

My hips hurt like the dickens. This scares me because before the ICU, I was saying my hips hurt a lot and then after I got intubated they found a bunch of clots in my pelvis. So I told this to the lady who was filling in for the blood dr today and she's sending me for an ultrasound of my pelvic region to rule out more blood clots. I had taken antibiotics for this sinus infection thing and so last week at my coagulation check my INR was low (too thick), but that should be all fixed now. We'll find out on Wed when I got in to get the INR checked again. Anyhow, my dr appt today was rather pointless since the actual dr wasn't there, the TTP blood work is not back yet, and I took both kids with me. They also both decided to poop within like a minute of walking into the waiting room. We were the stinky people sitting in the corner.

Last weekend, I threw a surprise party in Phoenix for Tony's mom, it was her 50th. It turned out to be really fun and I think everyone had a good time. Dang, she's a hard person to surprise though. Especially when you need to cook food for 20 people in her house but she won't leave! Hehe.

The girls seem to be over their colds now (fingers crossed), Tony's fine, and my nose will not stop running. Other that that and the hip thing, I'm good. Oh, pretty sure my hair's falling out again. Let's add insult to injury eh?

Oh, this is a big deal...Nola started laughing! It's so cute. She's trying to roll over too, I'll keep you posted about when that occurs. :)

15 Weeks Old

15 weeks old
on 2/14/11

Nola is 15 weeks old (or there abouts) and today was her first Valentine's day. I'm sad to say, we did nothing special except for the fact that I dressed the girls up and took pictures. Couldn't let the day go by without photos!

Nola is sick. She's got the cold that the rest of us have. Confirmed by the ped this morning and of course making me feel like I was wasting everyone's time by being paranoid, but whatever. She'll cough and cough for like 5 minutes straight and turn all red, it was concerning me. I also mentioned how she spits up EVERYTHING. I swear, she consumes maybe 10% of what she eats, it's ridiculous. So the ped gave us a sample of formula that has rice cereal stuff in it to see if it will stay down better. 3 feedings and 5 soaked bibs later, I'm gonna go with no, but I'll keep trying. Although, good news, when I was in the appt, I got a voicemail from my old OB saying that she got my note and she would call again until she actually got to talk to me. YAY!

I'm still sick with this cold thing, or whatever. I'd say it's more like sinus infection/bronchitis. I just finished my antibiotics today, so hopefully I'll stop snotting all over soon. Embry is also still sick, but not nearly as bad as before and she's about halfway done with her antibiotics for her ear infection. I got in to see the main hospital dr tomorrow and to give more blood for the hematologist (which hopefully the lab won't mess up this time). Then I need to sign forms to get all my medical records from st joe's hospital sometime too. I'm not complaining, but I am SO TIRED. I told Tony today that I needed to go to bed at 5:30. Now of course it's 9:30 and I'm still up, but you get the idea.

Oh funny story. So I can kinda pick embry up now, like to my waist height, but it's really difficult. So we went to a friend's bday party at a restaurant on Sat night. She was totally fine until I tried to leave. I had my purse, her backpack, and tony's burger in my arms. Then she decides to lay down in the middle of the walkway (inbetween the soda machine and the condiments), close her eyes, and say 'I go sleep now, ok?' I had to laugh. It was pretty hysterical. I got her to stand up a couple times only for her to get back on the floor and do the same thing over again. Then finally I picked her up and hauled her out the front door, no easy task, and scolded her. Needless to say, she went straight to bed when she got home.

Oh and Tony's surgery on Friday went very well. The most painful part seemed to be getting shot with the lidocaine air gun. And, bonus, I got to watch! Ok that sounds weird, but I love stuff like that, surgery that is, or medical procedures in general. Interesting stuff and oddly, Tony wouldn't let me take a picture of him with the drape over his lap. I can't for the life of me figure out why ;)

3 & 1/2 months Old

Nola is 3.5 months old now. I realized today that I need to have her 3 month pictures taken...cue the cha-ching sounds symbolizing dollar bills rolling out of my pocket. Buuut it's just not fair to have professional pics taken of Embry every 3 months and then not of Nola. I already feel guilty for not getting her weekly pictures done while I was in the hospital. I also can't find any pictures of me on life support, not a single one. I'm feeling a little disappointed tonight so this is probably not going to be a very uplifting post. I just got called home about 5 minutes after leaving for a girl's craft night because Embry was throwing up all over the place. She's been sick for a while with a cold, but then on Saturday I cancelled a playdate at Chick-fil-a and a trip to the zoo because she was running a fever. Later that day I took her with me to run some errands (first time taking her alone since the hospital) and she was fine until we got to Costco where she cried 'mommy mommy, I need go poo poo!' and then threw up all over me in the check out line. I also feel bad for my response which was to ask the cashier and cart person for some paper towels that I had just bought and they didn't respond so I yelled 'paper towels please! I just got thrown up all over!' which wasn't very nice but it seemed like if there ever was a time to yell, that would have been it. Then of course, I apologized about 300 times before leaving. Embry kept saying on the way to the car, 'I'm ok mommy, I'm ok' which was very cute, but overshadowed by the smell of vomit soaking through my shirt. On the way home I just kept thinking, at least I'm alive to smell it...

Then Sunday she seemed a lot better and didn't have a fever and hardly coughed at all so we took her along to a superbowl party. She did great there and acted like her normal self. Today she had a fever again and then got all riled up when I left tonight and like I said, threw up all over. Pretty sure she's just getting way too upset and coughing and then throwing up. At least I hope that's what it is because I've got some weird cold thing going on too and I really hope that vomiting does not come along with it. The nurse practitioner at the clinic wrote me a prescription for an antibiotic in case it turns into something more, we don't want to take any chances. I also got my blood pressure patch reduced again. One more reduction and it'll be gone, woohoo!

Nola still seems to be doing fine and hasn't caught anything yet, fingers crossed. She's smiling a bunch now and almost laughing. She's enjoying her swing more and wasn't liking her playmat very much this past week, but I think that might have been cuz it was off in the corner. I think she might have red hair, but Tony doesn't see it. We have red heads on both sides of the family so it's a possibility although it is a recessive gene.

Today was my first day at home alone with both kids, at least until my parents showed up at 11am. It went really well and I even got some stuff accomplished. That would be due to the fact that Nola was very well behaved and Embry was watching 'Dora' pretty much the whole time. She's obsessed. I mean you have to literally yell her name to get her to turn her head away from the tv when Dora is on. She's also learning lots of spanish, as in, the other day she comes up to me and counts to 10 in spanish on her fingers. It's ridiculous. I mean it's good, but I really don't like her watching that much tv. Then again, I used to watch (and still do) a LOT of tv and it's not like I'm a dummy or something so I guess it's not really that bad.

So, this whole hospital thing...it kinda feels like it never happened. I went through some of the bags that hadn't gotten unpacked a few days ago and I was sitting there holding the Christmas lights that were hanging in my room, thinking, 'geez, all that really did happen'. I just can't wrap my mind around it. I kinda feel like everyone expects me to be doing all the same stuff I did before I went to the hospital too. I'm sure it's nothing to do with anyone else and it's more just the way I perceive it, but that's probably part of the reason I don't feel like I was ever actually sick. Then I'll laugh and get a sharp pain in my side and remember, oh yes, something did happen to me.

I never got the results of the TTP test back. The lab messed up and said they never got the order (even though I handed it to them, they took my blood, then they called my dr to make sure they ran the right test). So the dr is getting it set up so I can go into his office, have my blood drawn, and have his people deliver it right to the place that runs the test. They're supposed to call me to schedule a time, but I haven't heard from them yet. The dr said he's not too concerned though since my other blood tests look good and I'm not feeling bad or anything. I made an appointment with a new primary care physician for this friday, so wish me luck that this one is better than the last one...not hard to be! Tony also goes in for his surgery that day, so I'm hoping all goes well with that and it's quick and painless like everyone says it's supposed to be. I'm sure he'll be fine, but he's normally the one that's always good and healthy around here so it'll be umm interesting to have roles reversed for a while.

We went to Phoenix last weekend which was a lot of fun. I was a little sad that I didn't get to go in the pool or hot tub since that was something I was REALLY looking forward to, but I opted to take a nap instead...aren't you proud of me?! I got to see some family that hadn't seen in quite a while and catch up a bit. It was really nice. We went out to dinner for Allison's birthday and we played games and watched 'Easy A' (one of my new favorite movies, thanks Kristy!) We ate at Culvers a lot (yum) and met Jamie there for lunch one day. I wish we could go up there more to hang out, but it's pretty much just going to be a weekend thing from here on out since Tony's vacation time is pretty much spent for the year. We'll be going up next weekend for Dorothea's birthday, but we can only stay one full day so it will be quite a short trip. :(

Progress

I'm slowly but surely getting back to 'normal' whatever that means. However I woke up this morning with what seems to be a head cold and I'm pretty scared that it could turn into something worse. I am NOT going back to the hospital!

So, for progress, I can now:

• go up and down the stairs, alternating feet like normal, without someone else's help
• get into the tub and bathe by myself, getting out I still need help
• take a shower alone
• get up from the toilet without assistance (this is a biggie and makes me so happy)
• walk without help or a walker or holding onto something
• DRIVE (this is fantastic and on the way home from being discharged from the hospital I was so scared thinking of how I was ever going to drive again. I've come a long way in 2 weeks and I'm so grateful to God for his amazing healing hand).
• Do my hair. Apparently I had a very bad ponytail while on life support, so now it's time to get back to looking cute, ha. Oh, ps, if you have any pics from the hospital (esp any of me on the ventilator) please email them to me. Thanks.
• Hold Nola and put her over my shoulder to burp, although not for an extended period of time
• Get up from pretty much any seat without help and without holding onto anything except my knees, YAY!!!

Nola is doing great! She slept entirely through the night on the 18th and has normally been only getting up once to be changed and eat and then going back to sleep. I am also sleeping better, so we're all a lot happier. She had her 2 month check up on the 18 with her new ped and she weighed 10lbs 15oz, was 23.5 inches long, and her head circumference was in the 5% at 37.5 cm around. Embry also had a check up and was 26 lbs, 33&3/4" tall, and her head circumference was 48 cm. Nola got 4 shots and a nasal drop thingy and she cried for a minute or so, then she took her bottle and all was well again. She did have some swelling at the injection sites later, but Tony gave her some tylenol and she was fine. Oddly, while we were there and I was filling out paperwork in the exam room, I overheard a nurse and the dr talking about how one of their patients was the step-son of Pam Golden (my amazing OB who basically saved my life on more than one occasion). So being the nosey person that I am, I piped up and said, 'oh Dr Pamela Golden? Is there any way I can get a hold of her?' and proceeded to explain what all went on and how she was the one who thought I might have a blood clot etc etc. They said I could write her a note and they'd try to get it passed along to her, so that's what I did. I really feel the need to thank her, it's not very often you find a dr like her and she needs to know how much it means to me that she actually cared.

Speaking of Drs...my pcp's nurse called me on Tuesday and said that she meant to call me earlier but their computers were down and she didn't have my #, but that Dr. Morris wanted to schedule a post-hospital appt with me. Ha. I said, 'well, I actually won't be seeing him anymore' and she just said 'ok, I'll let him know.' She seemed somewhat surprised, but I think she kinda caught the drift of what all went down and having kids herself I'm sure she wouldn't want them to receive the same kind of care that I did in that situation. I just don't want anyone else to get treated the way I did, get the brush off, and then end up on life support, or even worse, die. It's just not right.

Good news is that my insurance rocks and the bill for having Nola and the bill for this whole stint in the hospital were less than HALF of what I expected them to be. Another miracle I'm sure because God knows we could use some and he's definitely providing for us. :) I just pray that medicare doesn't go down the tubes with the health care bill cuz dang, I'd be up a river without a paddle. Then again, life's too short to worry, so yay for having good health care right now. Booyah.

My friend Kristy came to visit from WI last week and it was FANTASTIC! We used to do EVERYTHING together, we were pretty much inseparable and it was nice to feel so comfortable around someone. She's 5 mos pregnant and it wasn't an easy road to get there, so I was super excited to see and feel her baby belly and suggest that she name her baby boy Rourke just because I like it. :) We did some major shopping at the JBF sale, Target, Container Store, etc and she went through my maternity clothes (since I definitely won't be using them again) and picked out a few items. Needless to say, her suitcase was a little full upon her departure, but at least she got it zipped! We watched movies, went to MOPS, went to book club (she even read about 70% of the book with just a few days notice), went to Phoenix (to visit with Jamie), and went to girl's night. I'm so glad I'm able to get out more now because being cooped up at home is sooo not my thing!

Speaking of not using maternity clothes...we had the consult with the urologist and I think we've decided not to bank Tony's sperm before hand. We figure if there's a 97% success rate for the vasectomy reversal, then if someday he falls into the 3% it doesn't work on, he's just not meant to have any more biological children. As far as us having more kids, we haven't ruled it out. I've always pictured myself as a mom of 3 girls and Tony wants more kids (a boy in particular, but just more than 2 in general), so we're still throwing around the idea of adoption. We've always felt called to adopt (Tony's mom was adopted and I've wanted to since before I was married), but with the recent health issues I'm not even sure if it's an option anymore, even as foster/adopt. Either way, it wouldn't become a 'real' thing for quite a while so I'll keep you updated as we investigate further. I love babies and I LOVE being pregnant, so I'm kinda hurt that I never will be again. It's very trivial, but it still kinda stings.

The formula feeding is going really well. Nola doesn't seem to be having any issues with it and besides one small episode of leakage, things on my end are holding up rather well. I'm not so worried about mastitis anymore and I feel fine in that area, so yay.

The dr said to watch for any hardening under the skin in the 2 areas where I had the pic lines (my groin and my right bicep). Well, I found a very small hard lump right at the incision site to my groin pic line, but of course it was over the weekend, so I'll be calling them tomorrow morning to ask them about it. The arm one seems to be healing up rather well, but I doubt the bruising will go away for a while since I'm on blood thinners, but whatev. Till then I'll just look like I've been beaten and am addicted to nicotine because of this lovely blood pressure patch, good times.

I pretty much stopped doing the breathing treatments and I haven't gotten the results of the latest chest x-ray back yet. I go in to see the main dr on Wed so I'll know then what it showed. The x-ray lab actually gave me a dvd of the images, but I can't for the life of me get it to run on my computer. :/ It actually made my heart jump when the x-ray technician told me I had to strip down and put on a hospital gown for the visit...hospital gown, no thank you, I've had enough of those to last me a lifetime. So of course, I took a picture.

News

Well, I guess I should say something about Gabby Giffords. Being pretty involved in campus politics at the U of A, I was kinda 'in the know' about stuff. She always seemed like a nice person, never did meet her, but did a paper on how she was the youngest person elected to congress. Oh right, I remember, that was for the legislative internship I applied for in Phoenix. So basically I researched her since district 8 was our district. Obviously this whole thing is just tragic and shocking. I'm praying for her full recovery, God works miracles and he's been in the business of doing some great ones lately, I know he can work through Gabby too. About the shooter, who knows if he even went to the U of A, but I seriously pray he was not part of college republicans. Politically this is gonna have a lot of fallout and I'm sure those of us who are 'normal' (ie not extreme) will get lumped in. We need to remember to pray for those who become victims in this situation in other ways besides physically. May God be with all of them to comfort and guide.

Now then, moving on... guess what? I got my present for the next Mother's day, Valentine's day, Birthday, Christmas, Sweetest Day, recovery, being well again, welcome home, etc etc etc. And it is .... this camera. It is my DREAM video camera. I am so excited! Oh, our regular one (that I got in high school) totally conked out before Christmas. It'll only work when it's plugged in. We've been using the small digital camera to take short videos in the meantime. I hope I can figure out how to work it. Plus for Christmas I got an extended life battery and piggyback battery along with some chargers that coincide with this camera.