Tuesday, March 27, 2012

And so it began...

  When I left off, I had just found out about mr peanuts.  It was quite an interesting ride, let me tell you!  He is absolutely amazing, but I'll get to that part later.  I got a referral to see an ob/gyn and made my appt.  I went to the appt expecting to have a normal intake type thing and get my schedule.  I knew I'd be high risk, but I guess I had no idea how high risk I'd be.  When I gave them my past medical, the nurse was rather stunned looking and at the end of the appt tells me she'll run my case by the dr to see if he accepts me.  Well guess what?  He didn't. 

  Turns out no one in my hobunk hillbilly hell town in bumblefuck california would take me.  Not a damn one.  I should mention I'm only about 80 miles away from LA at this point I guess.  I got to 16 weeks before my insurance could find a dr willing to take my case.  She is in LA...and wouldn't deliver me here.  I honestly don't remember if I mentioned the speed with which my middle son was born but it was fast.  So we made plans to go down there and we were on an entirely unexpected journey to reach a goal. 

  The first appt was routine, this was a clinic used to high risk patients.  Not used to white patients at all, but that's a whole other story, lol.  I'm not racist or anything btw, just that plays into my treatment.  I was a novelty.  Here I was at this point almost halfway through an impossible pregnancy with a one in a million chance of not dying carrying this kid to term.  Not the kind of patient they get to see every day.  And to top it off, I am as white as they come and not from the area. 

   That first visit we discussed my options.  I guess they felt it was necessary to tell me that I should terminate for my health.  That just was not an option.  By this time, I could feel him move, I had a doppler I'd gotten off ebay and I had heard his little heart beating.  Hell I'd seen him on the ultrasound at the ER when I was dehydrated. 

  Moving on...the first visit was with an intern, but that was ok with me as long as we were able to get things on the right track.  They ended up coordinating my care and I landed a fantastic cardiologist out of the deal.  She's an assistant professor at UCLA so I'm very confident in her ability.  My first visit with her was strange though.  Her first question to me was "Is termination an option?" and again I said no.  She looked me square in the eye and told me she'd get me through it then.  Then came a whirlwind of drives to LA, ultrasounds, echos, lab tests, genetic counseling. 

  The pregnancy itself was pretty easy considering.  I had pretty severe morning sickness, not quite hg, but bad.  In march of last year I went to the bathroom to pee and when I stood up I got dizzy.  I knew what was going on, I was having a rapid enough heart rate to set off my device and I got shocked.  My hubby came home from work, and I had to visit the ER.  In the ER I got 2 more shocks and that landed me a 5 day stay in the cardiac care unit.  They ended up  turning off part of the device so it would stop shocking me, it was bad for the baby.  But as it turns out, that's how I found out he was a boy and not a girl like we'd first thought.  After that stay, they upped my visits to every 2 weeks, and decided that any more admissions would have to be at the hospital I'd be delivering at in Los Angeles.  Fortunately, I didn't have any more incidents with that though.  Through all of my echos I was holding steady.  In heart failure for sure, acute, but holding steady.  Now the challenge was delivering. 

  They'd decided to do a c section so as to avoid me going completely to term and also to avoid the stress of pushing and pain.  Remember I've got a pretty interesting cardiac response to pain.  The last few weeks, like maybe 9 or so I was on oxygen.  I also had a home nurse coming twice a week to do NST for the baby.  The only time there was an issue there was when I was contracting.  I went to the dr the next day though and it was all ok.  My littlest and last was born by c section on July 6 at 36 weeks 1 day.  He was a tiny little peanut, only 5 pounds 8 oz and 18 inches long.  And adorable of course, and BALD!!
 

  I'd never had a bald baby before, lol, it was unexpected.  Even my angel baby had hair.  Not mr peanuts though.  LOL  He still has barely any hair.  He's not quite 9 months old now and the love of my life :) I'm actually going to leave off on this one for now, and perhaps post my birth story with him later today if I can stay on the laptop.  Until next time...
J

Sunday, March 11, 2012

The professional patient...

  When I left off last time, I was just coming home with my ICD.  I recovered rather well, but one thing that sucked was not being able to lift my left arm above shoulder height for 3 months.  Quite difficult when you have a 2 year old LOL!  So over the course of the next year, I learned everything I could about cardiac issues.  Learned what was available at the time about Brugada.  Learned some horrible statistics that led me to believe I wouldn't last more than a few more years. 

  As time went on, and son #2 grew bigger, I got better.   At one point, my ejection fraction (the force with which your heart pumps blood out) was normal.  Almost unheard of with the ef I had before diagnosis.  I also had all my kids checked.  EKG only though, I am still unwilling to subject them to eps until they are older.  My daughter will be 18 in May, so I would like her to have one soon, but she is resistant.  Anyway, I also became kind of a professional patient.  It seemed like all I did was take care of the kids and go to the doctor.  In fact, that WAS all I did. 

  I grew more agoraphobic the more time went on.  I stayed on my meds and decided that I would just deal with life the way it was.  I didn't think I'd ever change my way of thinking.  I really haven't I guess.  I'm one of the only people I know that is ok to just sit at home and not go anywhere...ever.  Time went on, "life" went on.  I longed for another baby but was told by my cardiologist that it was not advised.  I longed to be pregnant again, to feel a baby move inside me, to breastfeed again.  

  Eventually, I worked up the nerve to talk to my hubby about it, to ask him his thoughts.  I knew it was a risk.  I knew it was stupid, selfish and horrible of me to even ask.  It was what I wanted.  My husband has a habit of not telling me no.  So, we went to my primary care dr and asked him his thoughts.  He didn't see much of a problem with it as I was doing so well at the time, so we stopped using birth control.  We didn't "try", we just didn't try to prevent.  The longer I stayed off of bc, the more I figured it just wasn't meant to be, so as disappointed as I was, I gave up hoping that I would ever have another baby. 

  Around Halloween, I resigned myself to the fact that I was never going to get what I wanted and we just gave up.  We got to a point that we didn't even look at a calendar or anything.  I had an app on my ipod that was like a period tracker, and in November it started sending me alerts that I was late.  I'm not terribly regular or anything, so a few days here and there are no biggie to me, I didn't worry about it.  Ten or so days late, I told my hubby I was late and he went to the store and picked up a test.  I was scared to take it.  He laughed at me and told me there were only 2 ways it could go.  He gave me a glass of water and went about his day.

  I worked up the nerve to take it and I didn't even set it down on the counter before it came up positive.  Lo and behold, I was pregnant, my wish had come true.  The next morning, I called my pcp and got the lab sheet to have it confirmed with a blood test and by Weds of that week, I had my verification.  So I will leave off for there for now, and I will post again at the next available opportunity!!  Until next time...
J

Friday, March 9, 2012

Another day

  So today is another day, lol. Forgive me please if you don't like "text speak" I know it can be irritating, but I tend to lol quite a bit. Ok, so where did I leave off? Oh right...the birth and babyhood of son #2. So like I was saying, he was a super easy baby, my reward for my losses I suppose. We dabbled with the idea of just one more after I had chickened out on the tubal but kept saying that this baby had ruined it for any future babies because he was such an easy kid. Nursed well, slept well, was always happy.

   Along about the time he was 18 months old or so I started to get super tired, super easy. Like washing the dishes wore me out. My dr assumed it was the fibro and put me on a med that not only made me completely loopy, but made me gain about 35 pounds in just over a month. It was awful. I stopped taking it, but I still felt just awful. My husband had to go to Oregon to work for a month and I was left at home alone with 3 kids by myself. My family was of very little help, remember my mom was not thrilled with my having another kid and her husband was quite the dick about it.

  I managed the kids ok, falling into bed every night and sleeping as much as I could with an almost 2 year old in my bed. When he got home, I still felt like complete shit. Had a stomach ache I couldn't get rid of. I figured I had ulcers again, something that happens to me a lot. I was wrong. My computer at the time was in my bedroom, at the opposite end of our house from the living room where my (finally home from Oregon) hubby and 3 kids were watching the tube. As I sat there, I felt just off. My chest hurt, I couldn't breathe, my stomach was bloated and felt like it was on fire and I was beyond dizzy. I couldn't muster the strength at the moment to call out to my hubby, so my internet addicted ass went on web md symptom checker and typed everything in. It came up with a CALL 911 warning. I stumbled out to the living room and told my hubby I felt really wrong and to please call 911. It was an awful moment. I was still nursing my little guy and had literally never left him for longer than a shower.

   When the medics got to my house they immediately asked my husband about my drug use. Now, I am not a crack head but since I live in a high meth head area, they assumed I was spun out on meth. Don't get me wrong, I love my pot, but I stopped snorting things before I was a mom. So my hubby had to stand there, being accused of being a drug addict while I felt like I was dying. My brother died of sudden cardiac arrest when he was 32 so because of a family history, my dr SHOULD have looked for cardiac issues and NEVER did.

  They did and EKG and the medic asks me if I've ever been told I have an irregular EKG. Nope, I've never even had an EKG before I tell him. And that was that, I was rushed off lights and sirens to the ER. They asked me history and rushed me into an angiogram where they discovered that I had an extremely enlarged heart and diagnosed me with dilated cardiomyopathy and congestive heart failure. They put me on a shit ton of meds and sent me home after I was stable 5 days later. I had to stop nursing my little one and I was absolutely crushed. I spiraled into a depression like I had never known. Nothing compared to what I felt. So alone, so scared, so weak.

  About a month later, I was home alone with the little one, the big ones off at school. I suddenly felt like I had run a marathon. Out of breath, heart racing and very very dizzy. The next thing I remember is my almost 2 year old leaning over me saying "mama? mama?". Thankfully, my hubby had an early day and pulled up within a few minutes of that. He again called 911, and off again I went lights and sirens. I ended up being sent to a hospital in LA to have an electrophysiology study done and come to find out, I had not one cardiac issue, but two. I also have Brugada syndrome. An extremely rare electrical problem that's genetic. Probably what killed my brother. I went home with an ICD (internal defibrillator). Then another new chapter in my life began. I think I'll take a break here, and perhaps post again later today if I have time.  Until next time!
J

Thursday, March 8, 2012

Been too long

  So if you've read the previous posts, you know two things about me. 1. I rarely use correct grammar/typing/spacing/whatever, so if you're a post nazi, you're probably hating me. 2. I suck at consistency. The thing is, I thought that I'd have more time. I thought when I started this blog, I'd make an entry every few days or so, tell my story and that would be it. Didn't happen. If you look back to the 1st post, you'll remember when I started this blog I was pregnant.

  Well, I'm not now. My little peanut is 8 months old now, and he brings my total of kids up to 4. I had my tubes tied during the c section so for sure no more for me! Ok, so moving on, I left off at my first miscarriage. I moved on from it, hoping and praying that since I'd gotten pregnant I could again, but knowing that it was risky. It took a while, and we had moved so I'd had some stress, but I ended up pregnant again. However, this pregnancy happened right after my brother had died and I was in a ton of emotional pain to go with my physical problems.  

  Fibromyalgia has a tendency to be rather dormant during pregnancy, but mine was not. I was constantly sick and had some bleeding early on but the little guy was sticking around we thought. I made it to 19 weeks 5 days and then my water broke. He was born on October 1, 2004 weighing in at just under 500 grams. He was a perfect little boy. He didn't survive the delivery, he was just too early. We gave him his middle name after my brother, the only one of my children that do not share their initials. I was broken. I was done. I thought I could not bear the agony and that I would perish. As you can see I did not.

   By Christmas, I was more like myself. Had lost all the weight, had physically recovered from the terrible delivery. During that delivery I had hemorrhaged and came very close to needing a transfusion. Anyway, by spring, we'd decided to try to have a baby this time, instead of risking an accidental pregnancy, that we'd plan it. So I quit smoking, I started taking vitamins and vitex, and took care of my body. By May I was pregnant. That whole pregnancy, I walked on eggshells. I didn't buy anything until the baby was viable and could live without me. My mom refused to acknowledge my pregnancy and we grew very distant. In January, we welcomed our second son. Healthy and my biggest baby. NOT big by most people's standards for babies, he was a little over 7 pounds. I was thrilled. We were all happy. My little family felt complete.

   And so we were a family of 5. He was a perfect baby for the most part, so clean, no spit up, no shit stained clothes, he was so cute too! Not that he's not now, he totally is, but he's a pain in the ass too. I had honestly thought that as much as I loved babies at that point that I was totally done. I made an appt to get my tubes tied, but when it was time for me to sign, I couldn't bring myself to do it. So here ends my installment for today, I do plan to continue when I can though, because really, even if no one ever reads this blog, I feel better having written it LOL!!!! Until next time :)
J