Baby K update!

I am now 35 weeks.  I am doing non-stress tests twice a week and starting now, seeing a doctor weekly (before it was every other week).

My stress tests haven't been entirely reassuring.  The risk to the baby with my heart issue is that not enough oxygen will be supplied to him.  So far, he has grown beautifully, but as he gets bigger and I get bigger, the demand on the heart also get bigger.  During the non-stress tests, they want to see his heart rate increase with movement, then return to baseline.  His baseline is always a beautiful 135-140, but he rarely shows increased heart rate with movement (and he moves...a lot!).  He will occasionally, but not consistently.  What should only take about 20 minutes to see what is considered a reactive (good) test takes him about an hour.

Today he did really well on the stress test, and while the OB was pleased with how things are going so far, he made sure I understood that I am not out of the woods.  I still have to see the cardiologist before delivery and have a growth ultrasound next Tuesday to make sure he is doing okay.  They will measure him and assess his movement and breathing to make sure he is not in distress.  If, at any point, they detect distress, he will be induced, as the risk of being born early will outweigh the risk of staying inside me and lacking oxygen.  Fortunately, I trust these doctors entirely, and I am so confident that everything will be okay.  I won't lie, though... when this baby is safely in my arms, the weight of the world will be taken off my shoulders.  I am anxious to know that he will be 100% okay.

Today my co-workers put on a baby shower for me and another co-worker who is due a week before me.  It was wonderful!  Amazing food, adorable and clever presents, and just a really, really nice time.  It has been such a whirlwind of a year:  getting pregnant and miscarrying, leaving a job after only 8 months, starting a new job, getting pregnant again.... it's been a roller coaster of emotions, and I think I can finally safely say that I feel so much peace and contentment with everything.  I can finally look back on the past year and see how all of it fits together.  I miss the clinic job I had and I think about it on a daily basis.  There were so many wonderful things about that job, I have zero regrets about exploring that area of work.  A lot of laughs and a lot of new experiences which I will forever be thankful for, but it also taught me so much about myself.  Leaving an entire health care system that I never saw myself leaving was HARD.  I felt a sense of homesickness on a daily basis for months after I left.  The open arms and new friendships that have developed over the past many months, though, has shown me that sometimes things must fall apart so better things can fall together.

And things are definitely, DEFINITELY falling together.

I had a follow-up appointment with my new OB today.  I am 31 weeks exactly.  The stress test I did last week showed improvement, which is wonderful.  He explained it to me like this:  cardiomyopathy (which is my diagnosis) has a list "a mile long" of different types, and figuring out what type you have can only be done by biopsy, which is not something I have had.  Some cardiomyopathy's are lifelong and never change, some get worse, and some get better.  Mine appears to be getting better.  The question and concern is what caused it in the first place, which again, I will likely never know, but getting better is always a good thing.

The semi-frustrating part is the cardiologist I saw 2 weeks ago never sent a report to my OB, so there was no plan of care developed between the two of them.  My OB said he would get in touch with the cardiologist to figure out what the plan was, but from what he could see, he sees no reason at this point to do anything drastic, such as taking the baby out early.  I asked if this meant I could go into labor on my own rather than inducing even once I am full-term, and he said yes (!!!).  This was great news to me, as this has been my plan all along and I would love to follow through with it.

Baby's heart rate is in the 150's and he moves like CRAZY.  My blood pressure was a little elevated, but I blame that on the fact that the parking structure is 8 miles away from the doctor's office, and I have gained a bazillion pounds to lug around (about 40 so far, and I have 2 more months to go..."go big or go home" is my pregnancy motto.) 

So all is well!  Couldn't have asked for a better report, and as usual, I am prepared for whatever hand I am dealt and I will deal with whatever happens. 

I saw the cardiologist today and he was really nice.  It was a relief, as I hardly had time to process the fact that I needed to see a cardiologist, let alone choose who I saw.

He was very laid back and friendly.  He had all of my previous cardiac imaging, but didn't really comment a whole lot on it.  He is repeating the imaging for himself, so next week Friday I am doing a stress echo (imagine a nearly 8 month pregnant girl, huffing and puffing on a treadmill, with electrodes all over her.  Okay, don't.  It's disturbing.) and then I'll wear a heart monitor for 30 days. I will follow up with him when the 30 days are over, and we'll go from there.

I was very pleased with this.  He didn't get ahead of himself and starting giving me all the things that could happen, he kept it right in the present, and we will deal with what we're given, and I like that a lot.  It's not so overwhelming. 

So next Friday is the stress echo, then I see my OB the following week.  I am assuming this will be the appointment that determines the rest of the course of this pregnancy.  I have spent the past several days researching everything under the sun, so any scenarios that become reality, I will have a game plan.  Might not be an EASY game plan or a cheap game plan, but it'll be a game plan, nonetheless.

In the meantime, life will carry on as it has always been.  I am not restricted from working, I will simply be taking the precautions I have been all along because of being pregnant, and continue taking things one day at a time.

I had my high risk OB appointment last Thursday at 28 weeks and to say it didn't go as planned would be an understatement.

It likely doesn't help that my regular OB is very laid back.  Any concern I've ever had she dismisses, and to be honest, I liked that.  Kept my anxiety nice and low.  Maybe the fact that she sent me to a high risk OB should have turned on a light bulb in my head, but it didn't.

The doctor came in and had my heart imaging that I have had over the past 2 years with him.  All this time, all the doctors I have seen have been focused on the ejection fraction percentage and nothing else, so that was what I focused on as well.  My last two heart echos had normal ejection fractions.  This doctor agreed that being that they were normal was a good thing, the fact that structurally my heart is abnormal is "disconcerting."  My ventricles are dilated and the walls of my heart are enlarged, indicating that although the pumping strength of my heart has normalized (which is what the ejection fraction percentage represents), structurally my heart is indicating that it still has to work harder than normal to function and pump blood throughout my body.

Looking back, I should have been seeing a cardiologist all this time.  Too late for that, though, but now that I know, I will be seeing one the rest of my life.

The scary part is, from the 28th week of pregnancy until 48 hours after delivery (his words, not mine), the heart is under the most pressure, as the demands of the baby are very high, and the amount of extra fluid the body has to deal with is also very high.  A normal heart works harder at this point, and when you have a heart that works harder under regular conditions, pregnancy can be very, very taxing.

The doctor did not like this at all.  He got me into a cardiologist for this coming Tuesday, and took me off work until I am evaluated, as any unnecessary stress can be very harmful to me.  It's super scary.  I know my baby is perfectly healthy (I had an ultrasound last week and everything looked great).  But my health is on the line in a way I never realized.  I am at a huge risk for going into congestive heart failure, and other scary things that I refuse to think about.  Another scary thing is I am new to this health system and I do not qualify for FMLA leave until March 16.  If I am taken off work after I see the cardiologist, which is a HUGE possibility, I lose my job and my benefits.  This thought makes my feel physically ill, so I refuse to think about that right now, although Jay and I have run through every single scenario, and I do feel we are mostly prepared if something happens.  I am going day by day.  If I can make it to March 16 and start my leave, that still only buys me 12 weeks of protection, with a SMALL amount of income, but I'd still have benefits and my job would be held.  But only for 12 weeks.  In an ideal situation, I would carry this baby as close to term as possible, but at most, that would give me 4 weeks after the birth to still have job and insurance protection.  I would not be able to return to work at 4 weeks post-partum no matter what, so I would still be put into the position of losing both my job and benefits.  The only way this situation would be better, is it would give me 12 weeks to figure something out, instead of losing everything immediately.  I also hold onto hope that the cardiologist will not be as alarmed by my situation, and allow me to work as long as I am able, but at the same time, I don't want to go into this appointment on Tuesday wearing my rose colored glasses and get knocked off my feet for the second time.  Again, I'll just take things day to day and hope it all works out.

In other news, with every little kick, wiggle, and squirm I feel out of my sweet little growing boy, I tell myself it is his way of reminding me that everything will be okay.  Because it will.

I had my 26 week OB appointment and it didn't quite go exactly as I had anticipated.

A normal OB appointment for me lasts MAYBE 15 minutes.  I never have any questions (I'm a pro, ya'll), my blood pressure is always 110/70 or some other normal range, baby measures on track, heart rate is beautiful, and I'm outta there.  Easy as pie.

Today, as soon as my doctor walked in I knew something was up.  She seemed nervous. 

Back track a little (and I likely blogged about it, but who knows).  December 2010, 2 months after my sisters cardiac incident, I went to the ER myself because I had been having these bouts of palpitations.  In the ER on the cardiac monitor, it showed ventricular bigemeny.  Basically, every other beat was abnormal, and I would run these stretches for 15-30 seconds at a time.  It resulted in me seeing a cardiologist, wearing a Holter monitor for 30 long days, a stress echo, a 2-D echo, and a cardiac MRI.  The initial testing showed that my hearts pumping strength was sub-par.  Not bad enough to say I had congestive heart failure, but not normal like it should be.  I was put on 2 cardiac medications, which kicked my butt.  I have always had a low blood pressure and a lower than normal heart rate (it was my normal baseline, so while outside the range of normal, it was normal for me) and these two medications made them both drop even lower, which meant I always felt like I was going to pass out and/or fall asleep.  I hated them passionately.

A year later, I had repeat testing and for whatever reason, my heart strength was normal.  I never faithfully took the medications (I skipped them more often than I took them) but after I got the normal results, I stopped them altogether.  When I found out I was pregnant with the baby I miscarried, I immediately made an appointment with my primary doctor.  That pregnancy was not planned (I was on the pill) and I was terrified.  I never got the chance to worry about it, because from the time I found out I was pregnant to the time I miscarried was a measly week.  

Fast forward to today.  26 weeks pregnant, in the home stretch, and my OB is too nervous to take on my case.  She wants me to see some high risk OB doctors at Oakwood.  I asked if this meant that I would just be seeing additional doctors and still see her.  No.  I don't see her anymore, period.  Done.  I feel a little abandoned.  This pregnancy has been so easy, and now I was being transfered to high risk?  It's hard to wrap my mind around.  I am a planner and I don't like surprises.  Knowing this was my last baby, I had this picture of how everything would go:  no inductions, I would labor at home as long as possible, deliver sans epidural (no, not because I'm super mom and LOOOOVE PAIN! ...but for other reasons when I had one with Allison that I don't really want to relive), have the baby be with me the moment he was born, and go home the next day.  Then take a gloriously long maternity leave and enjoy my summer with the three loves of my life.  Now I know I am jumping the gun, but being high-risk, I worry that my "freedom" with my plan will be hindered.  Can I even have a regular delivery or will they throw around the idea of a C-Section?  Will I be hooked up to cardiac monitors throughout delivery?  Because I had to wear oxygen when I delivered Ethan and it made me insane!  I hated the lines... I wanted everything OFF me.  Can I have my baby right away or will I be whisked away for heart imaging to make sure I was okay?  Can I go home the next day or will they make me stay to make sure I was okay?  And above all this...will I even LIKE my new doctor?  Who will it even be?  Where is their office and will I be comfortable with him or her?  Delivering a baby is so intimate to me.  It's an AMAZING experience and I don't want some doctor that is going to make me feel uncomfortable.

So yeah.  Today didn't go as planned. At all.  Thankfully, I do trust my OB and her judgement.  I wouldn't have stayed with her so long if I felt otherwise.  She spent a ton of time with me today and even hugged me and apologized for sending me away, stating I was a "dream OB patient". 

My next appointment will be with my new doctor. I don't know when yet, and apparently I don't have much of a choice when, as it will be determined after a discussion is held between both doctors.  I should know soon, though, and I will say I'm a little nervous.

I have enjoyed much of this pregnancy and have not been in a hurry to deliver, just because I  know this is for sure my last pregnancy, but after today, I am ready to have my baby boy at home with me in my arms... just how it is meant to be.

Tomorrow I will wear red.  And it will be tricky, because I own nothing red in my maternity wardrobe, nor do I fit into anything NON-maternity, but I will figure something out because it is that important to me.

I will wear read because heart disease kills people every. single. day.  My sister didn't have heart disease, but she had a faulty heart.  At least THAT day she did.  THAT day, for whatever reason, her heart stopped beating in that "lub dub" pattern most are familiar with, and took on a beat of it's own.  A beat that does not sustain life, causing her to collapse.  A beat that doesn't convert back into a normal "lub dub" rhythm and instead tuckers out and that is when death arrives.  Her heart was "assisted" to beat, whatever rhythm that would be, because people were pounding on her chest as they did CPR.  A crazy, sporadic beating heart is better than a non-beating heart.  That carried on until first responders could deliver high voltage shocks.  Two, to be exact, before she would start breathing on her own, and it has ever since that horrible day.

AED's don't just appear.  They are costly.  CPR and ACLS training isn't something you just learn through life experiences... you are TRAINED in them.  You do it the wrong way, it doesn't work.  It takes skill.  All of the specialty physician's involved in her care (which also included neurology due to the anoxic brain injury she had.  Has.) weren't just born with their knowledge, it took time, lessons, experiences, research.  All of which comes from raising awareness and funding.

Which brings you to my third year "Going Red" for my sister.  "Going red" for you, your mom, dad, brother, daughter, son, friend.  "Going red" because if you had told me September 19, 2010 what was going to happen on September 20, 2010, I would have said, "Are you crazy??" "Going red" because over 90% of the other people out there who will suffer sudden cardiac arrest like my sister did, will not still be on this Earth just over 2 years later to share her story and experiences.

My sister lived, and we thank God every day that people were "going red" long before we even knew what it meant.

Tomorrow I'll put together my Heart Walk donation page and we will continue to push for what OUR hearts know is so important.

Want to go red, too?

Space bar is fixed!  FINALLY!

Since the second to last time I posted (not the last, where I explained the space bar situation, but the time before that) ...a lot has happened.

I don't go back and re-read entries, so I may repeat myself, but we had the 2 year anniversary of my sisters incident on September 20.  It was low key and that was okay.  Bottom line is it will always be a memory day for us.

Before that it was the miscarriage, and that's where I'll start with today.

I don't need to say the miscarriage was hard because that's a given.  You don't even need to experience one to know.  But that was the start of a rough patch for me.

About 4 weeks after the miscarriage, before I even had a regular cycle, I got pregnant again and I felt such a sense of peace and contentment.  Peace in knowing this time it would be okay.  Contentment in knowing that we wanted this, and the loss prior proved it to us.

Now going back further to when my sister got sick and I started to realize a lifestyle change...a MAJOR lifestyle change was taking place that I struggled to adapt to, lead to me being put on a high dose of antidepressants.  By "high dose" I mean, "there is no higher dose available".  And what areas that didn't help me with, I had an anxiety medication to fill in the gaps.  No, I was not striving to be in a loopy, comatose state.  I was striving to be OUT of the comatose state.  And it helped.

Pregnancy changes things (duh!) so those medications are gone.  Which means I'm on my own here and it is freaking HARD.

I am so thankful for this little life my body is nourishing.  I love every kick and squirm.  I recently told Jay I feel more prenatal attachment to this baby than I did with Ethan and Allison, which we both attribute mostly to the fact that this WILL be our last baby so these pregnancy moments are done after this one is born.  For me, though, it's going through these mental nightmares and doing it all for that sweet, sweet baby, because he is worth it to me.

At present day, I am 25 weeks pregnant.  I LOVE feeling the movement and I constantly day dream about what he will look like.  I can't wait to hold him on my chest, skin to skin, for as long as possible.  I can't wait to see what he'll think of his big sister who I am almost certain be treating him like a real doll, dressing him, moving him around, pushing him in the stroller, and hopefully all of this with as little injury to him as possible.  I'm excited to see how Ethan will handle having a brother who is SO much younger than him.  It's exciting!

I am just a realist, though, and know that being off medication for the good of a growing baby IS a good thing, that to think that my life will all of a sudden be rainbows and unicorns once baby is here (because being off my medications right now is not easy in the least!) is not all that realistic, and I know this new baby as well as my older babies, will need a mom that isn't walking a fine line of stability.  Nope!  Not gonna happen.

Now HOW I am going to ensure my needs are met post-partum, that is another hurdle in my way, so I'll save that for another post.  I'm just glad to be back!!