April 18, 2013

Today we had our 2^nd appointment with Dr. Walsh. Bryan says there was not a whole lot of new information divulged, though it felt like this to me. He thinks maybe the first time we went, I was simply focused on knowing one thing: whether or not it was in my best (physical) interest to continue the pregnancy. With this sour taste in my mouth (despite the Dr. being a SUPER nice guy), I was extremely nervous for today’s appointment. We started off talking about last week’s flu incident, but then the topic immediately shifted when he noticed my swollen ankles and feet. He asked me how my breathing was, and if I felt more severe shortness of breath. He described many of the common symptoms of congestive heart failure, which is what some people with my hypertrophic-cardiomyopathy experience, but then immediately compared them to pregnancy symptoms (almost completely identical). Since I found out I was pregnant and began re-developing heart issues all within one month of each other, it is hard to know what to blame these symptoms on. He suggested another echocardiogram done soon, to look for any potential changes, as well as bump up our visits to monthly, as all we can do at this point is monitor the symptoms and look for worsening, which may be more indicative of congestive heart failure. In keeping with a positive train of thought, not all people with hypertrophic cardiomyopathy go into congestive heart failure, and many can live successful lives on beta blocker medications alone. However, we will not know where I lie on the spectrum until I have finished the pregnancy and can be more thoroughly tested. He did say he is concerned at the rapid rate in which my heart has deteriorated into its current state, which all adds up to bigger questions. At this point, my two cardiologists (I see the other one on May 1) are scratching their heads, as many abnormalities have popped up between the two issues I have going on. But I digress….the first and main priority for all of us right now is getting through a healthy pregnancy, a successful delivery, and ending with a healthy baby and…then me. J
One bit of happy news is that once I complete my second trimester (seven more weeks!), the chances for cardiac complications go down, as my heart won’t be working as hard as it had to in the first two trimesters. When we talked about delivery, again the answer was “Lets wait and see”. He did mention that for his patients, he has to determine if it is best to deliver on the cardiac floor, in the ICU, or in the standard labor and delivery. Lucky for me, with how well I have been doing so far, he seems to think I will be okay with the standard labor and delivery. However, a cardiac nurse will be present, and I will need to be hooked up to a heart monitor. As for methods of getting this little bean out…well, that is still up in the air.

Another bit of interesting news was further details on the abnormalities of my heart rhythm and also the shape of my heart. So one test to perform will be an MRI of the heart, after baby is born. We talked about how I don’t fit into the “box” for either diagnosis (Wolffe Parkinson White and Hypertrophic Cardiomyopathy) and the doctors want to do more studying to find a potential link, if there is one. I could be carrying some sort of gene that has until now gone undetected or unclassified…maybe I can get a new disease named after me! He also talked to us about the potential of visiting bigger research hospitals where people around the world go to, such as the Mayo Clinic. I forgot to ask if it was all expense paid. We also talked about genetic testing, as two out of my three sisters have since completed and successfully passed their EKGs and Echocardiograms, but if I were to undergo genetic testing and have markers for the specific genes that are causing this issue, they could use this to their advantage in future evaluations. The doctor told us that they don’t particularly carry out genetic testing, because there are so many mutations and variants of this heart disease that it would be nearly impossible to find what exactly I am carrying or what the cause is. He did say, unfortunately, that once the parent is found to have this disease, the potential for off-spring to inherit it is 50/50.

We talked about my own life expectancy, and he assured me that, while we still need to test to know more details, he is hopeful that I have the less severe case of hypertrophic cardiomyopathy and that I won’t be among the smaller group who will need a defibrillator- that is, he is hoping I don’t have the dangerous kind of heart rhythm that could lead to cardiac arrest, and he did not seem to think my life would be adversely affected or shortened due to this either. We also talked about heart transplants, which are only reserved for a select few who don’t respond to any other kind of treatment, and as Bryan said, its like trading one problem for another. I have also been preoccupied with the feeling lately that I may be a danger to others, especially when driving and if I have a medical emergency, though he did not seem to think this is a likely scenario at this point. Once again, he reiterated how well I am doing and how great it is that I have managed to keep myself out of trouble for the past three months. Bryan and I credit God, prayers, and our stubborn German heritage :-).

Well, this is all the information I have retained and can remember for now. Its time to go put my swollen cankles up in the air. (This is something else exciting I may get to look forward to- compression stockings and potentially going back on diuretics- but only if necessary, although there are some that are safe for pregnancy). As Bryan said, the doctor talked A LOT (about 30 minutes) and he used some big words. For every issue we discussed, there were three or four subsequent bullet points he presented, which made me wish I could record the conversation, or not feel like an idiot as I tried to keep up and take notes at the same time. But he was very patient with us, answered all of our questions, and put our little minds at ease…for the moment. We really could not ask for a better and more patient set of doctors. We are truly blessed in the midst of all of this.

April 12, 2013

At about 3:30 a.m. this morning I woke up feeling nauseous and awful. Being pregnant, this wasn’t too surprising or uncommon (although I have had a relatively “easy” pregnancy in terms of the normal symptoms such as nausea that people associate with pregnancy). When the feeling that I was going to actually vomit (something that hasn’t actually happened up to this point) came over me, I headed to the bathroom and made routine visits there every 1 ½ to 2 hours following. I decided that since my doctor is fabulous, and pretty much wants to know every time I blink, I decided to call the advice nurse, just to let them know I either had the flu or food poisoning and to see if they had any bright ideas as to what I should eat or drink to make sure I stay hydrated and nourished for the baby. Much to my surprise (although, as I mentioned before, my doctor may be slightly over-zealous and hence I should not have been too surprised…), they ordered us to head over to the Labor and Delivery Department at St. Vincent right away, as it sounded more like the flu then food poisoning, and I would need IV fluids to prevent dehydration and the potential for early term contractions. So that is where we spent the next three and a half hours...

As with all unexpected surprises, a few good things came of it. We got to listen to the baby boy kicking and moving around. He was fine, and his heart rate was 148. And, we also got to preview the Labor and Delivery Dept., and try out the Mom and Dad beds. Bryan and I actually took small naps as we waited for the IV and anti-nausea drugs to kick in. It was also a busy day, as it seemed many babies decided to enter the world all at the same time. Despite this, the care was good and the staff was friendly. We enjoyed our time (and I left almost feeling halfway decent), but my only regret was that we didn’t have a cute little bundle of joy to bring back to the outside world with us. This is a blessing, as I seem to continue to put this little guy through many unexpected trials, but he remains tough. August 26^th (or sliiiiiightly sooner) can’t come fast enough! I took a few pictures of the L&D room, to remember what it will be like for the magical day when he does decide to arrive:

This will be your first crib. But don't get too comfortable. You will have a much nicer one at home!

 

This is Daddy trying out his window seat/bed. He said it wasn't too bad. Especially since he started snoring while I took this picture.

This was my view. Pretty boring. And the rocking chair wasn't even that comfortable.

April 8, 2013

You are as long as a banana!!! Way to go, Little Bean! We are so proud of you!!!

April 2, 2013

Today was the best day of all in this pregnancy! We got to see our little man (its confirmed we are having a BOY!) and all of his body parts are growing at a healthy rate- in fact, one week ahead of time! His heart rate is holding steady at 132 and he is ACTIVE! We got to see his movements to match what I have been feeling more and more! J

 I was a little hesitant, with all that has happened in recent weeks, going into this ultrasound. As one friend put it, it is like always “waiting for the other shoe to drop.” Knowing that he is healthy and everything looks good so far has put my mind at ease and elevated our excitement to the max! Now I do not know if we will be able to make it to August to meet this little dude! We already love him so much, and talk to him/about him all the time. We are also blessed and humbled by friends and family who have already given us so much to help us welcome him into the world! And the prayers are appreciated beyond what I can express. After the ultrasound, we had an appointment with the doctor, who was pleased by my progress and lack of major incidents, so she bumped our meeting times up to once every four weeks. The only thing that has worsened has been my swelling, so she ordered prescription strength compression socks (which will be a blast to wear in the summer!). When we left the appointment, Bryan was so proud of the pictures and would not stop sharing them. He even stopped a friend in the road to show him our pictures on the way back to the shop. Since Bryan had some work left to do, and I had family from out of town visiting, I headed over to my parents for dinner and to show off our newest pics of our boy! I also called and texted my sisters and in-laws, then Bryan and I went over to his parent's house later to share (after dinner and a much needed nap!). After some thought, I put together a couple little pictures to share our announcement with the world:

(The last photo just added for confirmation :-))

Happy Easter! Love, Your Crazy Parents

19 WEEKS!!!

March 12, 2013

It's been three weeks, and no major issues! I am free of a cough/cold that had been plaguing me for weeks, and my only complaints are occasional shortness of breath and some heart racing, mostly in the morning and at night. Incidentally, “morning” sickness (or in my case, evening) has hit me hard this week, even though I am in my 17^th week! It's hard to believe we have made it this far already! Only three more weeks, then we will be halfway there! I am starting to have more baby dreams, and we are getting really excited! Today at our doctor appointment (regular 3 week checkup), we got to hear the baby’s heartbeat again. Yesterday I even felt him kick during a spelling test I was giving in school! His heart rate today was 133. Daddy asked a lot of good questions, and secretly surprised me with all his knowledge (I think he has been reading up when I’m not looking). One concern we had was an impending potential need for bed rest, though the doctor said that bed rest is not as beneficial as once thought, and we want to keep myself active as long as possible. There was no other news to be had, which in our case is good! So, now we look forward to our next appointment in three weeks, where we get to find out for sure the baby is a boy with a long ultrasound! We can’t wait!

To Baby Bean:

On February 25, you were about this big:

Mommy was about this big:

And Daddy was just trying to keep up with it all:

We love you!!!

February 19, 2013

Today we had an appointment with our perinatalogist, who wanted to meet with us following the big appointment the previous day. We got to listen to the heartbeat again (it had dropped from 155 last week to 146 this week!) and we even heard some kicking happening (I have not felt anything yet L). We talked about danger signs of heart failure, heart transplants, and a lot of otherwise boring heart-related stuff. Then we started talking about Delivery Day!!! We learned that c-sections, although they sound “easier”, are actually more dangerous for my condition, so we will do our best to avoid that. It’s also not a question that I will require an epidural, at the very start of labor, to reduce pain and stress. We are also going to try to keep pushing to a minimum, so I am reeeeeally hoping this baby is not too big and can be easily pulled out with a little help from one of the many doctors that will be there! J At this point in the pregnancy, (almost out of the first trimester!) there seem to be a lot of unknowns and “wait and see”, though we feel completely 100% in our doctors and in our faith that God will carry this baby to term and will be safely delivered. It helps knowing, too, that while my case is rare, I am certainly not the first person in this condition to give birth, and our perinatalogist seems to know a lot about cardiomyopathy, and our cardiologist seems to know a lot about pregnancy, so it works out really well!

February 18, 2013

This morning we had a pretty big doctor appointment with a new cardiologist- none other had I dreaded more. Two weeks prior, we had another echocardiogram done after seeing the new perinatalogist. She and Dr Jones (my heart rhythm cardiologist) were both concerned about some swelling and shortness of breath I was having. I had an echo done in 2008 before all my other heart problems began, and with the "plumbing" aspect of my heart, everything at that time looked fine. We met Dr. Jones, who for over the next five plus years continued to treat me for my "electrical", rhythm issues (diagnosed as Wolf Parkinson White syndrome, and later, tachycardia).

However, the new echo done two weeks prior showed something "concerning". Dr Jones called me the next night and told me that it looked like I have "Left Ventricular Hypertrophy" which is a thickening of the heart muscle walls. He said my heart shows it has a hard time relaxing, and this can be dangerous. He asked me if I had ever suddenly passed out or if anyone from my family had ever died inexplicably or from heart related issues (my maternal grandpa died at 60 of "heart problems," though an autopsy was never performed). He told me he was referring me on to Dr. Craig Walsh at the Heart Clinic, who specializes in prenatal with heart issues (who knew there were more like me?!?). He said the worst case scenario was hypertrophy-cardiomyopathy and it looks like I may need a defibrillator, as this new condition can be life threatening (my other conditions were only a "nuisance".)

So, that is who we saw on this day. And on the Wednesday before, when the boy had his "big reveal" in an unplanned ultrasound, my prenatal doctor also warned me there was a chance the new doctor would tell me it was not safe to continue the pregnancy and we may have to "terminate". Which is why Bryan and I chose not to discuss this with anyone sooner (it had not been a very good weekend leading up to this appointment). I prayed for strength for me to not fall apart at this appointment (even though I dreaded it more than anything), peace for Bryan (who has been a stressed out wreck), and protection for the baby (who, happily, we get to keep!...I felt like we went from "leasing" to "owning" this day with that little one, and I was now headed into my 14th week!).

The appointment went better than my fears, esp. for the baby's sake, but its not looking so good for me. Unfortunately, I do have the cardiomyopathy (worst case scenario), and the difference between my echo five years ago and today is alarming. It seems I have the rapid onset, though some people do not have issues until later in life. Despite some of my symptoms, he says I am looking pretty good so far and he thinks the pregnancy should go fine. After the baby comes out, we will have to discuss further testing and defibrillators, when/if it should come to that. But he says the first priority right now is to get through the pregnancy, and we will deal with the rest as it comes. I have appointments set up for every two months with both cardiologists, and I have been bumped up to every three weeks with my high risk prenatal doctor. So my social calendar is looking a little busy.

I have felt a little distant lately. Truthfully, I have been avoiding people and hiding in the house as much as possible. I wont feel out of the woods until August 26, especially with the tachycardia, which they feel will present itself more than this new diagnosis (and yes, they feel all three issues could be connected, but they don't know how). After the baby comes, it will be a whole new set of issues to deal with, but I am just looking forward to getting a healthy baby out right now.