Friday, July 1, 2011

What's Going On?

So, not a whole lot going on and I'm sorry I haven't updated anyone lately.  I've been sick but am getting better and the kids and husband are doing well.

We've found out that Isaac has two congenital heart birth defects.  One is a mild to moderate mitral valve stenosis and the other is a mild bicuspid aortic valve.  The latter is very mild and they are not so worried about it.  The first one is the one they are more worried about because it never fully opens or closes and there is some regurgitation.  We're worried that he also has blood clotting genetic disorders like I do and are hoping for the best.  They've said to treat him mostly normal and that they'd check him again at Children's Mercy in 6 months.  Other than that, he is doing very well.  He gives kisses on command and is such a sweetie.  He is tall and heavy as a brick, but not chunky at all.  He has the sweetest brown eyes and hair and looooves playing with his sister and trucks!  He loves peekaboo and FOOD!

My radiation treatments gave me some problems!  I did have mild thyroid storm...of course!! Haha.  It went away after a week or two and then we were worried it didn't work.  It seems to have started working but they can still feel my thyroid and the goiter.  We are hoping it doesn't grow any and it is killed or we will have to biopsy it.  Fun, fun!  I'm wearing a holter monitor right now and have to get an MV02 stress test done next week...it just keeps getting better! :)

Isabella is doing well!  She is getting so tall and is such a little lady.  She's my princess baby.  She has been talking tons.  Her favorite colors right now are pink and blue, or INK and blooo or boo.  She can finally say purple and loves coloring and playing and picking out her clothes and drinks.  She is about to potty train soon and I think there will be no difficulty in that.  She's learning things quickly right now!  The doctors have put off doing an MRI on her head since she has no problems with hitting her milestones.

Joshua has been doing well, also.  He's been going to the doctor as much as I have lately.  He's got a numbness problem in his big toe and cannot feel it at all.  We've been working on other doctor visits as well.  It's so hard to organize sometimes.  He loves his little babies and they've been playing a lot lately.  They made a fort the other day in the kids room and I've never heard Isaac squeal (happily) so loud before.  They loved it!

I've been having fun with extreme couponing lately...I blame TIGS for that one!!! :).  It's been a lot of fun and has really helped us transition lately with me being so sick.  We've been able to get the things we want/need and it is just awesome.  I love getting all the health and beauty stuff for free or next to nothing.  Mom would have really loved it.

Tuesday, March 15, 2011

2/25/2010

This is the day that I had my precious son, Isaac Mason.  Isabella had just turned a year old the month before and we were doing all we could to not have him before 36 weeks.  On early ultrasounds, they told us it was a girl, and then we couldn't double check afterwards because he was lodged in my rib cage and wouldn't move (I had plenty of ultrasounds, due to problems with fluid).  Her name was going to be Sophia.

My doctor originially wanted me to be induced at 36 weeks.  I wanted to try for a natural labor since I couldn't do so the first time.  Let me tell you, I should have listened to people who told me otherwise!

We tried to push it back some but I was in terrible pain.  I was having loads of chest pain and pressure (at this time we didn't know there were problems with my heart since they didn't see them after I had Isabella). My blood pressure was high but nothing they couldn't manage.  They found a huge gallstone and that was causing most of the pain.  As long as I could handle it and there weren't any more bouts of internal bleeding (I had my fair share of that after Isabella was born and several months into Isaac's pregnancy), then I could hold off and possibly have surgery the same day I had Isaac.  It was blocking my entire bile duct and my heartburn was terrible!  Thank goodness I do not have it except for when I'm pregnant :).

I was having regular stress tests but wasn't feeling well in general.  Who does when they're past 30 weeks?!  We scheduled for me to be induced on the 28th and I was to stop taking my blood thinners the weekend before.

Well, guess what? I went into labor the week beforehand!  Also, you can't have pain killers when you haven't weaned off of blood thinners.  I wanted to not have any, but wanted the option open just in case!  The day before I went into labor I went to the store with Joshua and Isabella and I dropped something and bent over to get it before he could stop me.  The baby dropped and I spent the night researching on google.  It didn't do me much help, because I went into labor at 2:00 am!  Instead of my water breaking, there was a ton of blood.  We were scared and went to the hospital here.  I had been traveling to Washington, MO, for fear of having another delivery like the last one.  They gave me a shot to stop my labor as the doctor I had last year was on his way in (he is no longer able to take care of patients at the hospital, now).  We drove to Washington and I counted my contractions using the mile markers for the next hour and a half.

I was ready to have a baby and they broke my water, I was in full blown labor.  Problem is, I stopped dilating.  After at least 12 hours of trying without any pain meds and hours of having contractions every minute and a half, they said I needed to have an emergency c-sections, because they feared both of our lives were in danger if I kept trying to do it the other way.  With an emergency c-section, like my last one, they have a limited time window to get things done while you're under anesthesia.  I was very scared and remember crying because I was so worried that I wouldn't wake up.  Since this happened so suddenly, we checked my husband and daughter into a hotel until we had family to come help, since Isabella was too small to be in the room with me.  He was so supportive.  I don't know how he handles it the way he does.  I know he is worried and scared, but he is very calm and in control.

I remember being sedated and thinking, "This isn't working, I should take off the mask and tell them".  Of course, then I woke up, so I was wrong!  Haha.  Anesthesia is some crazy stuff.  They looked at me and told me that my husband was so confused when they told him it was a boy that he made them check 5 times!!  WHAT?!  It's a BOY?!  I was also confused but overjoyed.  Beforehand I had that thought that at least we had the name and clothes and everything ready!  Nothing ever goes exactly as planned around here.

It also took us three days to name him.  He was perfectly healthy and it was so nice to be able to have a baby in the room with me.  I wasn't used to that since that isn't what I was able to do with Isabella.  He was so handsome and I loved that his coloring was like Josh's and that Isabella took after me.  It reminded me of me and my brother.

Again, I started hemmorhaging.  Ugh.  By the time I left the hospital, I had a football shaped hematoma and my stomach was lopsided.  Miserable!  I didn't get a blood transfusion but I probably should have.  It dissipated but not until infection after infection.  I think that is where my heart started to get attacked and, unfortunately, there are no antibiotics for that.

He was about 3 weeks premature.  They said he was strong and healthy and he was so sweet.  He was a little jaundiced, but it went away quickly and we were released after a couple days.

Josh and I couldn't be more lucky to have the two children we have now.  We're lucky that I survived and there's plenty of times that many people, including doctors, were surprised that I did.  Isaac is now 1 and Isabella is now 2.  Isaac has a heart murmur that hasn't gone away and we're getting him an echo soon.  Otherwise, he is healthy and strong and is almost walking on his own.  He is definitely my little man :).  Isabella is smart, understands things I wouldn't think she would, and has a ton of energy.  Her head is bigger than they'd like it to be, but so far testing says it is genetic and nothing to be worried about!  We're getting an MRI done soon for that.  She's my little princess.  I don't know where we'd be today without these awesome little babbies.

Sponge Like Heart

Back in December we were getting ready for Christmas.  I was working a bunch and wasn't feeling great.  I remember having the weekend before Christmas and feeling alright.  Monday, we went to get our babies pictures taken and I was so out of breath.  That night, I couldn't sleep and had to sleep upright, which is something I haven't had to do since I was a teenager and was very sick.  The next morning, my boss was supposed to come up to work for a business review and I called him to tell him that I was sick and needed to go to the hospital and that he probably shouldn't come down that day.  I did some research online and thought I either had bronchitus with problems with my blood pressure medicine or heart failure.

I went to the doctor's office and waited patiently.  On the way up, I had to stop to rest, I was so worn out.  He checked me and immediately started to panic, thinking that I was having another pulmonary embolism.  I was rushed to the ER.  They at least got me in sooner than it would have been if I had went to the ER on my own! :)

They did a PE study, to see if that was the problem.  It wasn't, and I was in late stages of heart failure.  They wanted to do an emergency pacemaker and put me on the heart transplant list.  Since the pacemaker is so expensive and they can not do many tests afterwards, they require that you either do it the emergency way and be put on the transplant list or you wait 3 months while trying medicine.  It would be a long 3-4 weeks of trying to figure out which that would be and it changed almost daily.

I was sent home late Christmas night.  My left side of the heart started at about 10% function and had raised some and most of the fluid was out of my lungs (they were both filled, again, when I had came into the hospital).  Sunday, I rested most of the day and Monday I tried to work.  Suddenly, I stopped talking!  Back to the ER I went, as I had several TIAs, which are mini strokes.  The difference being that they didn't cause permanent damage.  They could see them on the MRIs that I had, so they were significant, but luckily I only stutter occasionally.

My heart was skipping beats and they couldn't figure out why.  I was soon transferred to Barnes Jewish hospital and I couldn't have been in better hands.  I had multiple teams of doctors working on me.  It was like a real life episode of House.  I had a team for factor five leiden, electrophysiologist (electricity of your heart), cardiac, endochrin, and sleep medicine. 

After a crazy amount of tests, we found out several things:  I have a birth defect in my heart.  My heart never compacted into a solid muscle and is shaped like a sponge.  Blood clots form here and it doesn't pump as well as a normal heart would.  I have mild sleep apnea, which caused my heart to skip beats.  So many things.  I almost had to have a right and left heart cath done but they decided against it when I had my cardiac MRI.

Some of these tests were insane.  I always get the weird 1/1 million side effects.  When they were doing a bubble test on my heart, I had terrible contractions like I was going into labor!  Not fun!  I just missed the babies so much and had to look at their pictures daily to try to keep sane.  I was on a floor where children aren't allowed but they made a special exception for me.  Unfortunately, since I was out of town, they couldn't come see me anyhow.  It is just not practical to have the kids driving all day.  They'd be grumpers when they did get there.

My heart function had increased to 37%.  They were extremely pleased with that and the medicine was working.  The right side of my heart was beating so fast to compensate beforehand that I would almost pass out when I tried to stand.  It went from about 140 beats a minute sitting down to 70.  Much better!  Also, fluid was staying off of my heart and lungs and, as Martha Stewart says, that is a good thing.

One funny sidenote:  When I was in the hospital, multiple times and at both hospitals, they constantly asked me if I was in the medical field or if I was a pysician.  In a recent ER visit, they asked again and then told me I was the most knowledgeable patient they had ever had.  I thought this was awesome.  Not trying to sound arrogant, but it was hilarious.

I remember one day a fellow had come in to go over my brain MRI.  They redid it because I was stuttering and getting frustrated when I couldn't get out some of my words.  I tell you what, the ability to talk is something we take for granted.  The frustration over not being able to speak correctly or at all was unbelievable.  There really is a powerless feeling to it.  Anyways, the fellow came in and said, "I really don't know how to read your MRI but the results are back.  Your doctor will be in later on.  I can tell you one thing...you don't have any massive tumors!" and I was happy, because when you have so many things going on, you have to be grateful for the little things.  I was happy knowing that my kids were safe and sound and that we'd celebrate Christmas when they came home.  I couldn't wait to be home with my husband and kids.  I'm happy that, when a nurse came in at midnight and told me that I was going to be taken down for a colonoscopy at 3:00 am (WHAT?!), that she was *wrong*.  She was so, so, oh so wrong.  Things could be worse and it's hard to realize that when you're in times of desperation and you are fighting for your life and you've got to appreciate what you have and have done and work hard so that you can appreciate the future.

Monday, March 14, 2011

1/12/2009

I was almost 32 weeks pregnant with my daughter, Isabella, when I was hospitalized because they thought I had pre-eclampsia.  I didn't, but that didn't stop them from doing 4 consecutive 24 hour tests.  3 were negative, and that is when everything went crazy.  I have chronic hypertension and had extremely high blood pressure and they wouldn't let me even sit upright in bed.  This was a bad combination for me!  I was threatened that they would call social services if I tried to leave and I was very scared (at the time, I didn't know that it was just a threat and that social services wouldn't do anything, so it kept me there).

I started to feel very anxious and I was gasping for air.  I couldn't do anything to calm myself down and had terrible chest pain.  They took hours to figure out what was wrong, but eventually figured out that I had to two PEs, or blood clots in my longs, and pulmonary edema in both lungs, or fluid filling both my lungs.  I needed an emergency c-section and they prepped me for life flight to St. Louis.  Suprise!  St. Louis wouldn't accept me because I wasn't stable enough.

They started the c-section after about 15 minutes.  I wasn't numbed correctly and I could feel it.  They were shocked!  "How come you didn't tell us you could feel the pinches?"  "You didn't ask!  I thought you were prepping the area!"...idiots!  So I had to be knocked out completely.  I woke up confused and my beautiful little girl had been born.  They had to fly her to St. Louis right away.  I was transferred to ICU and after they got her prepared, they let me see her and took her away.  I didn't see her for another week...

Luckily, my husband and mother-in-law were there, and they were shocked but handled things very well, in a time where I couldn't.  Eventually, I moved back up to the OB ward.  Goodness, I wish I wouldn't have.  I have factor five leiden, which is a blood clotting genetic disorder.  My doctor gave me a blood thinner called Lovenox, which is given by injection.  The patient usually gives it to themself and it is injected into fattier areas.  Preferably, the abdomen.  Well, I had just had surgery there and that wasn't working.  I bled and clotted so much that I had to have 3 units of blood and two blood transfusions.

The next morning, the doctor, who had ignored nurses tearful calls the night before, finally came in.  He had showed up the night before, said "Yep, she's hemmorhaging." and went back to finish his game of golf.  He undid the staples and, with no pain medication, put on a glove and dug out the clots by hand.  Now, I don't know about you, but this shit hurts.  There were 4 nurses holding me down.

More happened, but it was a horror story, and I'm glad I survived it.  After a week and 6 nurses coming to my room telling me that I should leave before the doctor kills me, another doctor releasing me, and getting my home-health nurse fired, I finally got to go home and see my baby.

She is awesome.  She could breathe on her own the first night.  She was released after 2 weeks, even though she was less than 5 lbs. and was very premature.  She is 2 now and I couldn't ask for a better little girl.  We didn't name her for three days and all I had was a picture of her in the hospital.  I would call daily and talk to the NICU nurses and ask how she was.  How lucky are we to have a child that is 2 months premature and completely healthy?  It makes the hospital stay that I had not even seem relevant.

Sunday, March 13, 2011

Radioactive Iodine Treatment

I start this treatment tomorrow morning around 10:30 am.  My children, Isaac Mason and Isabella Nicole, both went to their grandparents house last night.  I miss them already and hate when I have to be away from them, but know it is the right thing to do and that they'll be okay.  I'm going to be radioactive for several days and cannot be around children for at least 5-7 days.  I'll be able to hold them then but won't be able to be around anyone for more than 2 hours in a 24 hour period for at least 12 days.  It's not a very complicated procedure and is pretty safe (at least, more than it sounds!).  I'll take radioactive iodine which will then be sucked up by my thyroid.  I have a 'hot nodule' which is making my thyroid extremely hyperactive.  I have Graves, which is an autoimmune disease. 

Hopefully, it will just destroy the nodule and my thyroid will be normal.  It will destroy anything that is hyperactive.  If I have multiple nodules that are (most weren't on the scan) or if my thyroid itself is hyperactive, then it will destroy the entire thing and I will become hypoactive, which is more easily controlled than being hyperactive (especially in my situation).  It will take several months to figure out if I'm hypoactive and then it'll take about 3 weeks to figure out what dose of medicine I'll need to take. 

Side effects are not too bad and this has been tested for decades and is 95% effective.  Only thing I'm worried about? THYROID STORM!!  Tell me that doesn't sound scary?  Couldn't they have thought up a less scary scientific term and given me that and they could just call it that between themselves?  Let's hope that doesn't happen! 

Josh will be helping me and watching me for symptoms of Thyroid Storm.  He's such a good husband and will be tons of help.  We've got a system set up so that I don't give anyone radiation posioning :).  I miss my kids and cannot wait to see their happy little baby faces when they get home and I'm feeling better!

New Blog

So, the internet needs another blog like I need a high-sodium diet.  I'm making this blog so that people who are wondering or are confused, etc., by everything going on can get a better idea and just to rant every once in awhile.  It's going to go back a little over 2 years, from 1/12/09, the date that my daughter Isabella was born, to today.  There's been a crazy amount of things that have happened in two years and I feel that this will be a good place to get it out! :)