It's been that long already?!

My surgical sutures both finally fell off this past week and boy does it feel, well; LIBERATING!! I know, i know i sound like a dumb ass right now but, until you've had to deal with tape all over your chest and the INSANE ITCHING that incurs you just wouldn't understand. It was kind of like wearing an Event monitor, but crapier because these stickums never left....Ever.

It has been 7 weeks since my surgery. The scars are healing well, and the itchiness has subsided. But i was checking out the scars the other day in the mirror and i really don't like the one over my left side. Yes, i had a Pacemaker Implanted and yes, i did receive two scars. Kinda sucky, isn't it?  Maybe i'll take  couple of pictures of the scars and show how different they look. One is really thin (R) and one is well not really wide, but wider (L). I don't really like that they look different. After all these years i still get irritated with having scar tissue and visible scars. You would think that after all that i have been through i really wouldn't give a shit, right?

I have gained about 6-7 lbs (2.7-3.1 kg) since my surgery. At first i was really really freaking out about it because it all was gained within the first week or so of being home. All the paperwork i had read bout Congestive Heart Failure talked about not gaining more than 2 lbs over night and no more than 5 lbs within a week, and the weight that i have gained thus far was all within the first week or so of me coming home. I remember posting about it on FB, because hell that's what i do, and i was pleased to see that my buddy Kayleen had read it and totally understood what i meant. No, she hasn't had the health issues that i have, but her b/f has a pacer too so they were able to give me some much needed personal insight :D.


Recently i have heard from Friends and Family members that i am looking loads better. I guess that extra weight was good, because according to them i was starting to look somewhat 'sickly'. ugh. Honestly i never even noticed that i did. I have weighed the same (102 lbs/ 46.26 kg) since i had Isabella, so my weight was just that, my weight. I never realized that perhaps i was able to get my weight down so fast and keep it down so fast after i had her wasn't because of the nursing and healthy eating per se but because of my heart failure. Who would've known?

 The upside is that i do have more energy, a lot more than i have head this past year. It just sucks a tad because i still don't have all of my mobility back and i have to constantly remind myself that i can't do this, or i can't do that. It breaks my heart that i still can't play with Skylair (ds) like i used to, but hopefully within the next 6 weeks or so that should all go back to normal. Um, since the surgery i have realized that i need to be way more diligent about my medication. I used to just take it when i got up and when i went to bed, but with the new pills and everything i realized i really need to be on more of a schedule or it messes with my system big time. Ugh. I think that's all for now. Later i'll up date a Yummy Foodie Blog and then on to the Family Update Blog as well.

Man, i can't believe it'll be July in less than 2 weeks....

where has the time gone this year? It seems like the past couple of years and sort of just ran by.....time has just flown by like it's the blink of an eye or something. My surgery was 2 weeks ago today and i actually seems to be recovering rather fine. Although i have to wear an arm brace at night so that i don't move my arm too much or hyper-extend my arm unconsciously in my sleep or anything like that. Btw, that would be ALL BAD!!! The docs have said that i can't stretch my arm out all of the way until September. Do you know how hard that is truly going to be? Like.Oh.My.Science.HARD!! I have to catch my self throughout the day to retract my arm back down or something because i'm doing or reaching for something without thinking. I can finally lift Isabella, The first week home sucked because all she wanted was to be held; but i couldn't even fullfill that simple need of hers. The upside is that she has become really used to having just Daddy and Bella time. The downside is that if he leaves for any reason, she freaks.*sigh* Sometimes i feel like these children are going to be the death of me or something along those lines. Lately they are soo moody and temper-mental. And it's been driving me nuts. I think it also plays in with the fact that i have never been away from Bella for more than a couple of hours....i guess that will happen some day....yeah Dad....some day *wink wink*.....um....lets see what else has happened...Oh, we sold out Integra, well since Donald got let go, we are only bringing in C/A and F/S....and now it's not just filler money to pay the bills, it's ALL the money that we get. SSI is still dragging me along it's stressful, lonely trail. I still have no idea if i will be granted benefits or not. Ugh. Although when i did go to see my case worker i got to meet with a SSI case worker as well and she was going to look into my SSI case and see if there is anything she can find out that i am not. I have turned in all the required paperwork regarding my surgery and when i called to see if it had been processed yet they said they couldn't say and to go to my home office, so i went to my home office and they told me that they couldn't say and that i just had to wait for the Disability Determination Department to contact me. Well then why the hell would they make me go in circles if neither of which had any true answers?...can't you tell that im stressed. Maybe i should try and go back to work? i don't know. When i was at my first Pacer check this past Monday i was watching the pacing machine and reading the results; of course!, the PA looked up from my paperwork and noticed i was reading the pacer results and asked if i wanted an explanation to what they were doing. I told him that was not necessary, i was just in awe that my P waves were actually normal and that my Q-T complex looked awesome. OMS you should've seen his face and the NP's as well. Their jaws dropped! We started chatting and i told them all about my schooling and whatnot and the office encouraged me to re-apply for a job once i'm recovered and if i get cleared by both my Cardiologists. How kick ass is that?! I think i might....but it's something to contemplate after i hear back from SSI ect. I've been thinking if i can work, and get cleared and everything then perhaps i should try again at UCD...it's something i've wanted for years. But before that i wanna finish up my Associates.....so i guess time will only tell. what do you think?

Is it Nap Time Yet?

That has been my question of the day, daily for the past couple of weeks. Since my last doctors appointment, my minor Bronchitis and CHF has been plaguing me. I am always soo soo tired!! It's ridiculous! I nap whenever Isabella naps, in fact both of the kids are napping at this very moment but i decided to try and write up a short blog in silence. It seems like i can't do ANYTHING without feeling completely exhausted. And by Anything, i mean ANYTHING. I can't even do the dishes and take Sky to school without feeling like i need a nap. In fact i find myself taking a nap at least once daily. Today i only got like an hr tops, and then Isabella woke up. That really sucked. Usually she'll take like a 2 hr nap in the afternoons if she didn't take one in the morning. I'm betting it was the obnoxiously loud jackass neighbors that woke us up. Go figure huh?? To top it off, i'm having all these on again off again chest and upper abdomen pains. I really don't feel like going into the ER or anything over it, since it's not stopping me from my daily business per se. But still. It is affecting me. I go in and see the Cardiologist this coming Thursday for my Bi-Ventricular Pacemaker. I'm going to bring up to her all of the aches and pains and also the constant feeling of being Lethargic and Sore. It really sucks. I know that if i do feel really bad i could always go to the ER, hand them my Card and i would be admitted immediately because my records show CHF in the header. But i don't want to have to deal with that if it's not 100% necessary. I feel like garbage always. And this Bronchitis isn't helping in the slightest. My chest is sore from all of the coughing, i keep getting head aches and migraines from constantly coughing. The only up side to the bronchitis is that it has helped me tone my abdominal muscles. LOL. I know, very sad of me to even notice that, right? Because of my listelessness and everything i have checked my weight just out of curiosity, it's at 46 kg, or 101 lbs.....a bit lower than at my previous Cardiac appointment. I wonder what she is going to say about that? Also, i have been looking up information on Marfans Syndrome, and received a packet about it in the mail today. I was contemplating bringing it up to my Cardiologist and get some insight about it from her. I trust her whole heartingly. She has been my cardiologist since i was about 15 after all. I am really hoping that once this surgery happens i will start to feel loads better, and i hope that my SSI gets taken care of after this next surgery, I can't believe they've been stringing me on since last August. That's the Government for you i suppose......I had read about Marfans and it mentioned that nervous system issues branches from the syndrome, if that is true it might explain my Neuralgia....i have an appointment to see a neurologist a couple weeks after my pacemaker surgery, i'm going to talk to the doctor about the pervious medication i have been on for the neuralgia and see if there is more of a holistic approach we can take. Because the last medication i was on was really strong. Don't get me wrong, it did it's job and worked like a charm, But once i took it i was out for the night, unable to function if Skylair woke up at 2am, and i really don't want that for Isabella. Not to mention the fact that i am still nursing her, and Amitryptaline is a class IV drug i believe, and definitely not compatible with breast feeding. That is, it was the last time that i checked. Who knows, it may have changed since then but i highly doubt it. I am on some new medication for my heart right now, and it has alieviated some of the chest pressure i was getting from accumulating water in my pleural cavity versus my appendeges. That's my body i guess, just weird like that. I'll post an update about the impending surgery after my pre-op appointment and everything next Thursday. It's gonna be an interesting appointent, my Mom and Step dad are going to attend as well. I asked my Dad if he wanted to come also, but he felt that it wasn't necessary unless i truly wanted him there. I'm not scared, so i see no point in everybody coming to one pre-operative appointment. Is that stupid of me?

I'm going back under......

 (this is also found in my family blog too)

for another Surgery in May. Yep, i'm getting a Pacemaker.Awesome; I know.

I'm not really too stressed out or anything about it. I knew that it was inevitable and bound to happen. Skylair and Isabella just through a bit of a wrench into the plan and it came sooner than we had originally thought it would. But i am okay with that.

I know that there are people like my Mom and Sister that are all worried and stressed about it. With the constant phone calls and check ins and whatnot. But i'm perfectly okay with it. I know the risks and advantages to the procedure and am complacent with what is going to happen.

This was found out and determined through my cardiac catherter that i had last Monday March 22nd. They went in and realized that there was no need for a stent placement in my Aorta, and that oddly enough my aorta actually makes a weird 'S' bend right underneath my Coacrtation. How cool is that? Very Cool. (okay i know i'm a nerd, but if i can't at least joke about my health, then i'll probably be all depressive about it). However while they were doing that procedure they went on ahead and took all the necessary pictures and stats for my doctor so she could decide if i truly needed the pacemaker or not. And Evidently i do.

I was told a month or two back that it was going to most likely be a Bi-Ventricular Pacemaker and that i would need to have two incisions done to complete the procedure. They would have a leave on each of my Ventricles and because of my stature i would have one incision on my upper right chest (my left) where the pacemaker core will rest and the first lead will be hooked up, and i will have a second incision on my side going on the other side of the heart. Due to my small frame two incisions are needed instead of one. I am thinking that i might end up being hospitalized longer than the regular patient because of the dual incisions, but who's really to say until then.

We're trying to figure out what it is that we're going to do regarding this whole surgery. Donald said he would take time off, but we can't really afford it, and then i also learned that they have cut back on the time they allow for FMLA (Family Medical Leave Act) and also how much they will pay for it as well. I know for a fact we can't afford Donald to take time off of work, even if we get granted FMLA, well that is unless some of our family members are willing to help us out with all of our bills for the month of May. Which i doubt. Not necessarily because they are unwilling, but mainly because i doubt they have the excess funds to do so. Or at least that's what i hope to believe.

Family members have already offered to help us out during this time, which i am thankful for. I trust my doctor and her staff faithfully. I know that they will do anything and everything in their power to let me have a speedy and safe recovery from this.

Hopefully this will make me feel loads better than what i have been feeling, especially this past year. Also, i'm hoping this will finally prove to SSI that i am in dire need of being accepted. I still haven't even heard back from them, i wonder what is taking so long.......

I'm going to hope that we can find a way to get Skylair to stay the night at Donalds Folks during this time. I really don't know how i am going to be able to handle him and Isabella after the surgery, with or without help. I think i may be too much stress. Stress is something you want to try to eliminate before coming home from a surgery like this.  As for Isabella i have a feeling that this is going to be the last month that i will be able to continue nursing her. I'm very paranoid about continued nursing once i'm home from the hospital because of where the surgical incisions will be. I'm very scared that if i do nurse her that she will attempt to touch them, or even worse pull at them out of curiosity......I don't want to wean her, but i think i may be time just because of my deteriorating health. :(..........

So that's the news on me about dying and whatnot......(okay not dying exactly.....more like saving a dying organ.....but still whatever)......Any questions?....perhaps i should look some stuff up and through in some diagrams?.....let me know, i'll comment them if wanted.

After the Surgery......

This was initially posted on my Family blog but i wanted to transfer it and have it readily available on each blog.

This past Monday Morning i  had my Cardiac Catheter. I came out a lot better than the last time this procedure was done on me. I'm not too sure why i fended better this time around than i did back in July of '04. Maybe because my hips are wider, or maybe just because UCD is such a better Hospital than Kaiser. However; when i was done for Kaiser back in '04 it was performed at UCSF, so i don't really know why i felt so much better and mobile this time around.


Anyways though, come to find out i did not need to have the Stent placed in my Aorta. Also, a weird piece of information that we found out from this surgery was that my Aorta has this weird 'S' shape after my Co-arctation repair site. That is why all of the Echo's taken at the doctors office made it look like my Aorta was collapsing, the bend in the 'S' gave the appearance of the Aortic walls giving way. How trippy is that? And more importantly, How in the world is that not in my charts?! You would think that Kaiser and UCSF would have put that into my file the last time this surgery was done to me, you know; as an FYI or something! But hell, what can you really expect from Kaiser;right?


The surgery wasn't a total waste though. They took a lot of different pictures of my entire Heart Muscle and of my Aorta for Dr.Park to over look. We are planning on most likely having to get a Pacemaker placed in my heart, it might happen as early as this summer; but we don't know quite yet. When i was hooked up to the machines in the Hospital before,during and after the surgery; we noticed that my Blood Pressure is fairly low as well as my pulse. We also realized that when i sleep my BP and my Pulse drop dangerously low. I'm saying a pulse of about 30ish. Definitely NOT good. If i was to get a Pacemaker put in, that would be able to regulate my pulse and my BP much better and not let it drop down as low as it does throughout the day and night.

So that's how the surgery went, and what is the initial cardiac plan for now. It doesn't scare me or freak me out that i am going to be getting a Pacemaker. It was inevitable that i was going to be getting one, Yes; we thought that it wasn't going to be until i was 40ish (initially) but my pregnancies with Skylair and Isabella have thrown my system out of whack. Damn Children. If this isn't proof or reason enough to get 'Fixed' and have the BLT (Bi-Lateral Tubal Ligation) done, i don't know what it. Hopefully i can have that surgery done before the end of the year. But that's still up in the air because i know for a fact that my OB will not do that 'elective' procedure until all of this cardiac stuff is figured out.

Other than that i'm doing alright. My left hip/groin is still a tad sore, as is my chest muscles because of the breathing tube they gave me during the operation made me cough and cough when i woke up. Which is super Sucky! I finally got rid of my cold last weekend and i got a breathing tube during the surgery so now i'm coughing up a storm still now and have uber sore muscles. Gah. I'll be alright though. :D

Also, Isabella did super well with me being in the hospital and not being able to Nurse her at all on Monday or Tuesday. I felt really bad for her though on Monday night because i had to walk around with her until she fell asleep and she's so conditioned to nurse so was upset and it took a while for her to fall asleep. However, she slept really well. She got up once like an hr after she went down because of the neighbors and that was the hard one in getting her back down, but after that she stayed down for about 4 hrs or so and then she got up again; but i was able to get her down within 10 minutes ( YAY ME!!) and stay down for another  few hours. So all in all she did AWESOME. She just missed mommy and our routine. I am back to nursing now and we're back to our regular schedual. I just couldn't do it for those 2 days because of the medicine i was given in the hospital. So yes we are still EBF, but i guess i don't have too much milk left, she must not be drinking as much as i thought. I didn't get engorged until last yesterday afternoon, and even then it was barely what you can call engorgement.

 

Sometimes....

i wish i was actually able to go out. I hate this shit. I don't get to fucking do anything. And what infuriates me even more are the Parents that DO get to go out. It's bull. I never get to see anybody. I never get to hang out at 'parties' or shows. Nothing. Science Forbid i bring Izzy with me!!! I Love my friends, but honestly i don't think that they understand. Well they understand some things, but what i don't like is constantly talking to me about a party or get together and then turning around and asking me to find a babysitter for Izzy. Knowing full well that there is NOBODY to watch her. Why hurt me like that? Common People, you know that i don't have a babysitter for her, so if you don't want us to come then don't mention it to us at the beginning. It really bugs me. I was really looking forward to getting out and seeing people, alas i'm stuck at home because "They'd prefer it to be child free". I understand that my Childless friends would want to have their get togethers' child free, but don't invite me if that's the way you want your party to be. You know i can't do anything about it, well other than making Donald stay home from work to babysit so that i could go out. I LOVE my BFF, but this has irritated me beyond belief. She has every right to say who can and can't come to her soire, but just don't invite the people that it will effect. I hate not having childcare. I hate not being able to see people. Or Hang out. Or anything.

I know this is selfish sounding, but sometimes i think back to would i have been happier just Bottle Feeding my children and being able to be a care free 'mom'? Eh, probably not. I'd feel horrible knowing that i was giving my child inferior 'food' that costs so much money, which if i did bottle feed i probably wouldn't be able to afford going out.LOL. That would be selfish .It makes me mad, Nobody will watch my daughter because i Nurse her and she's uncomfortable around people she isn't used to. NEWS FLASH!!! She isn't uncomfortable around people because i nurse her, she's uncomfortable because she doesn't know who the fuck you are! Isn't that a good thing? I'm ecstatic that my children wont go to 'Just Anyone'. Do you know how freaked out and paranoid that'd make me?! But what i hate is that during the first year of life, THE MOST CRUCIAL, nobody in my family so much as volunteered to help me out and babysit or at least come around more often so that the kids are used to them and willing to stay with them while Donald and I are not. I feel like i'm being punished for making the best choices for my family.

My SIL (husbands side) and my Sis are able to go out and do whatever they want because the Bottle Feed, oh! and because they don't know how to get a job or anything so they live off of mom. So of course the child would be used to other people, right? ARRGH! I hate feeling like this. I'm really afraid that this nursing thing and lack of support from my family is going to drive me nuts. i LOVE Nursing my daughter, i would just like it if somebody; my family perhaps, would help me out and give me a break now and then! My health isn't the best and it doesn't seem like anybody really cares. Well at least not until they get in trouble of their lack of caring and big mouth! (a few wks back my SIL (brothers wife) gave me attitude about my daughter crying at a birthday party because my Bro was holding her, mind you she doesn't see them that often so what do they expect. And NO they don't live far away; maybe 15 minutes. Anyways he chewed her out and NOW she wants to try and help.Fuck that. Hell No.)

Anyways back on topic, i just feel that because i chose to be a real parent and do what i'm supposed to; Bf/AP, i'm being punished and kept out. It's ridiculous. There needs to be more support and understanding. And that's something i definitely do not receive much of. It's saddening. It's causing me anxiety, depression, and resentment towards my own children because i don't get a break. Other say, oh Let your husband watch the kids while you go out. Well here's the thing; he works 6 days a week and only gets one day off a week. That's the only time i get to spend with him, why would i want to go out then? Why can't anybody help?! Yes i breast feed my 14 1/2 month old daughter! No i don't CIO! Yes, i actually interact and play with my children and help them grow! Yes i partially co-sleep (she starts off in her crib and when she wakes for her night feeding she comes to bed with me)! Yes i carry my daughter when she wants it! I do babywear more than Stroller! o0o0o i guess that means i'm a crazy ass hippie!!

All of these are basically the reasoning behind be not being able to do anything. I can't go to school, i can't work, i can't go out. All because of people inabilities to wake up and help me out. I will not change the way that i parent. I do not want my children to be raised by a babysitter (both figuratively speaking and actually speaking......my SIL(husbands side) is basically the babysitter to her own daughter)......i want my children to have the best that they can, and i give them all that i can. All that i ask in return is for a little help. But i really don't see that coming anytime soon. I even have the people that used to be supportive of my parenting techniques suddenly changing sides because my daughter is no longer an infant! Ridiculous!Absurd! I know usually i would say 'stay away from people like that.' but how am i supposed to stay away from family? I've thought about it. But it'll just backfire on me like everything else usually does.

Well i have my surgery in less than 48 hrs.....I wonder if my daughter will end up self weaning during this time, part of me wouldn't mind, but a part of me would be really sad. Lame, i know.I know my husband will be able to take care of the kids while i'm having the surgery and while i am hospitalized. I just hope somebody will be willing to help me out later in the week while he has to work, and not because their husband chewed them out! Which, i highly doubt will happen. Well that's life i guess. I'll perservere, i always do. Science forbid i ask for help, right?

Arrrrgh, WTH?!

        I initially posted this the other day (3/9/10) on my Family Blog and decided to add it to this blog as well.

       In 2 weeks i have my Cardiac Catheter i've been trying to get everything with the kids and Donald situated in advance. Anywho, i called the nurse this morning asking if Isabella would be able to stay with me after post-op because of us still nursing and they said no. They tried to tell me to just pump and bf her that way. I tried to explain that i can't pump; and i never have been able to, and they were just basically too bad. That Donald will have to take care of her bc i will not be allowed, Plain as that. WHAT THE HELL!? I don't even know what to do right now. I've talked to LLLinc and they're told me hwo i need to talk to ect, and even the nurse at the hospital said to contact LLLinc and WIC. But really, what are they going to be able to do? This is ridiculous. I know that i'm being treated unfairly and mainly because she's not a teeny tiny infant and she is now technically a toddler they don't want to be bothered by it. But how difficult would it be for them to help me out?

          I go to WIC in a couple days to attempt to pump again for the up-teenth-billionth time! They said theyre going to hook me up with one that i can take home and see if i can pump enough for 2 day feedings and about 4 night feedings. Hopefully this will work. I've never used the Medela Brand pump before and it's supposed to be the best. I do hope i can get some out, at least that way Bella can just drink from the cup if she really wanted milk. I know it's not me, but it's all i can do. :(.....

         This really irks me though. I wonder if this one day is going to stop Isabella from EBF....part of me wouldn't mind that; but another part of me doesn't want that to happen yet. I know i need to worry more about my health and not what she wants. But i don't want to just deny her of me. It just seems wrong to me now. I have noticed more so with Isabella than with Skylair i have became an AP. And it doesn't bother me. It seems to bother other people at times; but eh, what does that matter, right? As long as me and my family are content with our AP who care what others have to say.

        I just don't understand why the hospital is so gung-ho about denying my request. It just seems wrong. I honestly don't think it has anything to do with a medicinal issue. It's all about Liability. And that is just plain sad.

        I hope to science (yes, i'm atheist. so what.) that i can actually get enough milk pumped out this week with the help from WIC. Bc Izzy needs her mommy milk. I've never ever had any luck with pumping before; it's been a total nightmare!!!! Maybe it has to do with my technique. Or maybe the brand of pump. I mean; how effective can an Even-flo; a formula company, breast pump really be? Not too effective in my experiences with my two children.......I've talked to Lactation Consultant after Lactation Consultant, and to no avail they say i should be able to pump. So; why can't i?.........

       Hopefully this surgery runs smoothly; i don't see why it wouldn't; and Isabella is fine and content during that time as well......because if she's not, how in the world do they expect me to make a full recovery. Anybody have any insight they'd like to enlighten me with?

Hooked up to Machinery.w00t.

So i went and saw the Cardiologist this morning, and it actually went by somewhat fast, although i was there for an 830am appt and didn't get home till 1130am. Well needless to say i'm still broken. I found out why i got lightheaded and dizzy when i doubled my medication in the summe, and i only doubled it for like a week; it drastically dropped my blood pressure, like dangerously low......go figure huh?! I still haven't gotten my damn MRI taken care of because of the damn Radiology department is full of morons. Gah. So right now i;'m stuck on a 24-HR Holter Monitor. YAY! ::sarcastically:: i get to turn it back in tomorrow morning, boy am i glad she didn't order an Even Monitor, 30-DAYS would have SUCKED BIG TIME! Well i turn that back in tomorrow and then i have to go back to her office at the end of the month in 3 wks and go over the test results from this monitor reading and then also it'll be with her and a couple other specialty Cardiologist to see if i'm going to need Catheterization. I know it sounds kinda weird, and or bad. But i'm not looking at it too poorly. I am trying to keep an open mind about it. I do like however that THIS Doctor is actually keeping on top of everything and checking everything out before shipping me off to the OR like Kaiser did back in Summer of '04! Part of me wants to have something proven from the exams and have me have to go in for the surgery, at least that way it would make sense of all these issues that i have been having lately and also it would help justify why i have been attempting to apply for SSI. Because the government doesn't seem to think that there is anything wrong with me. Don't get me wrong i would love to know that everything is fine and that i don't need to go 'under the knife' or anything but justification would also be a good thing as well. So yeah, i can't wait till the end of the month so i can finally find out what the hell is going on and how to fix it. On another note though, when i went into the Heart Center to get my Holter hooked up and everything i was talking to the supervisor/manager there and she was saying that she wishes she had another qualified employee and that if my health gets better and everything is set up for me to have childcare that i should go in there to talk to her one-on-one and avoid the HR Department, and bring in all my documentation and everything to talk about possible employment, but i should definitely figure out my health first and then if wanted or need to go and see if she can do anything to help, w00t! So good and bad-ish news today.