Tuesday, August 30, 2011

Don't tell Mount Fuji that I am coming...

While I am stuck here in the US on kid duty, Jeff is off having whirlwind adventures back in Japan. Jerk.

OK, so he isn't a jerk, and he really has mainly been working 12 hour days to bank vacation time for when we get there and packing/moving our stuff from Misawa to Yokosuka. The packing part was a tremendous undertaking. Not to mention driving a big old moving truck 10+ hours through the night. 

So what does Jeff do to unwind? He climbs Mount Fuji, of course. 

Look at him. So glad my kids have half his genes. 

Of course it's no secret that Mount Fuji is an active volcano, classified with a low risk of eruption. But guess what? We just had an earthquake. Here in Raleigh, NC. Which came just a few months after a tornado and a week before a hurricane. I think it is safe to say that natural disasters are drawn to me. 

So, live it up on that mountain while you can, Jeff. We'll be home soon. Something cataclysmic is bound to happen. 

Thursday, August 25, 2011

What's the standard gift for your first anniversary from open heart surgery? I'm going with new clothes from j.crew....

I can not believe it has been a year. And what a year! We found out we were expecting, survived an earthquake (or 200), survived a tornado, welcomed a new life into ours... and I could not have done it without my health (or the support of my friends and family, especially Jeff). 

I can not say enough about the Doctors and staff who took care of me at the Cleveland Clinic. Brilliant minds with caring hearts. And my Aunt and Uncle who so graciously opened up their home while I was recovering. There are some great people up in Ohio, incase you were wondering. I am lucky enough to call several of them family. 

Having gone through such a BIG surgery, I now reflect on who I was and what I was thinking at the time. And like the name of this blog implies, life just goes on. Often people comment on how brave or strong I am, but it is all relative. Everyone has their own battle or their own 'open heart surgery' to be brave for. You either choose bravery or you choose fear. Being a parent, you do not have the luxury of choosing fear. Of course I was scared, but chose not to marinate in it.

And the next thing you know, it's a whole year later. And I am healed. I have scars that I see every day as a reminder, but other than that it is in the past. I am healthy. 

Today I am celebrating my health and my life. I have two wonderful children and countless wonderful friends and a family who I adore. I am celebrating the fact that once I am completely healed from my c-section that I will be DONE with healing from surgeries. I am celebrating the fact that Jeff and I can look forward to a life without surgeries (aside from pacemaker maintenance) or traveling to and from the US for medical reasons. I am celebrating the coming year of complete and utter normalcy and the seemingly boring day to day life that is one of a family of four; a family that lives together. In the same COUNTRY!

So a year ago today marked the first day on my path to 'normal'. 

And I know what you are thinking... I will never really be normal;-) 

Happy hearts to all!  

Tuesday, August 23, 2011

The story of my heart

With a BIG anniversary approaching this Wednesday, I thought it would be fitting to tell the tale that is my cardiac history. So sit back, relax, and try to remember your middle school anatomy class (and kudos to those who make it to the end of this post). 

Ever since I was in elementary school I had episodes where my heart would start racing. I have vivid memories of playing with my friends and saying 'Hold on, my heart is doing that 'thing' again' then taking a break until it stopped doing that 'thing'. Knowing what I know now, it is very hard for a child to explain what it is they are feeling. How is an 8 or 9 year old supposed to know what is normal and what is not when it comes to their health? 

These episodes would only happen every once in a while and I never thought they were something scary. In fact, over the years I had learned ways to make the episodes stop. Like holding my breath or bearing down like I was going to take a poo. Both of which, I would find out when I was older, were legitimate techniques for slowing a rapid heart rate. Isn't it crazy how your instincts can just take over?

So years and years go by, fast forward to my freshman year at ECU. I was in my first class of the day, drawing (Oh yes, I was an art major. Go ahead and laugh). My heart started to do it's 'thing' so I started to hold my breath and bear down like I usually did to stop it. Only this time it would not stop. About 5 minutes had passed and I finally said something to the teacher. He was one of many who thought I was full of shit when it came to my heart thing, but agreed to allow me to walk to the campus health clinic. 

Once I was there the nurse tried to take my heart rate with a blood pressure cuff. It was going so fast it would not register. She then tried to do it manually... she lost count around 200. Over 200 beats per minute. This was the first time I had ever even had my pulse taken and I was not aware that this was considered fast. During these episodes I am still able to talk to you and somewhat function; I just get dizzy and my vision starts to get fuzzy, like I might pass out at any moment. The campus Doc decided to send me to a local cardiologist, more specifically an electrophysiologist who deals mainly with the 'wiring' of the heart.

Doctor #1 had me wear an event monitor for 30 days. Basically it is a tiny EKG machine that looks like an old school pager with two wires coming off of it. Those wires are attached to electrodes that stick to your skin. Whenever my heart felt funny I pushed a record button and it would take a reading of the electrical activity that was going on at that time. I wore, I recorded, Doctor #1 diagnosed me with super ventricular tachycardia, or SVT. He recommended a procedure to permanently cure the problem rather than be on drugs for the rest of my life. 

The heart beats thanks to electrical impulses generated from your natural pacemaker, the SA node. These impulses travel to other nodes in the heart to make your heart contract. Here is a quick video from you tube that explains the whole process:

So what was going on in my heart? I had 'accessory pathways' or extra nodes that would, on occasion, pick up the impulse from the SA node, which would result in my super sonic heart rate. During an ablation procedure an electrophysiologist finds these accessory pathways (which are just nerve cells) and burns them using radio frequency. The nerve cells are dead = they can no longer pick up an impulse from the SA node. 

Doctor #1 does ablation #1, which was a success. Or so we thought.

In rare cases when you ablate an accessory pathway it uncovers yet another condition. I was one amongst the small percentages of folks who then developed inappropriate sinus tachycardia, or IST, after my ablation. It is worth noting that this was back in 2001 when very little was known about IST or any other electrical miss-wiring in the heart. Doctor #1 was in way over his head and he knew it. In fact, once I started feeling new symptoms and called his office for an appointment, they claimed that he had never treated me before. I was scared and felt like no one would listen to these new symptoms I was having, which now included chest pain. I returned home for the summer and started to look for a new cardiologist that would listen to what I was saying and take my symptoms seriously. I wish I could remember exactly how many I saw, but let's just say it was more than a couple. As many docs as I saw I wore twice as many event monitors. It sucked. I finally found Doctor #2 who seemed to know what he was talking about and seemed to know what to do to fix it.

Enter ablation procedure #2.

When you have IST, it means that your SA node (that natural pacemaker) fires inappropriately. Usually it responds to your other systems in the body and makes your heart rate rise and fall with activity, endorphins, stuff like that. Mine would just fire all willy nilly, beating faster than it should at rest. Aren't there medications you can take to make it behave, you ask? Why yes, there are, and they usually work great with folks who have IST. However I also have very low blood pressure. And all the meds (and yes, I tried them all) would make my already low BP drop to the danger zone where I would black out. So Doc #2 decided to try and alter my SA node enough to where it would slow my resting heart rate down. Remember how I said they use radio frequency to burn the nerve cells? During my first ablation he only had to make one burn. During this second ablation he had to do 40-something burns until he had to call it quits because I went into a 'shockable rhythm' (you know... when they yell CLEAR!). Doc #2 said it was not a success, that the equipment he had did not allow him to go to the part of my heart that he needed to. He referred me to Doc #3 who works for Duke who has the fancy equipment.

Many tests and many event monitors later Doc #3 decides to try yet another ablation. 

Enter ablation procedure #3, this time with 30-something burns.

Still unsuccessful at slowing my heart rate.

At this point it is 2006 and I decide to just try and live with it. I found that if I exercised and brought my heart rate up naturally it would help my resting heart rate to be lower. I had good days and bad days, but was (for the most part) 'fine'. And the only other option I had, since I had so many ablation procedures at this point, was a pacemaker. No one wanted that, especially since I was so darn young.

So I have a year or two feeling 'fine'. And then I had to go and get pregnant. 

Pregnancy is pretty darn hard on the heart, even in the healthiest of mamas. After having Noah I saw a steady decline in my ability to manage my fast resting heart rate. I would wake from a dead sleep and my HR would be around 120. I was no longer able to work out. Heck, I could not climb the stairs without feeling like I had just climbed a mountain. I would not accept this as my quality of life. I had a kid to take care of and keep up with and just KNEW that there was something else that could be done. 

I researched, researched and researched and found the authority of heart rhythm disorders, Doc #4. He is the big-wig. One of his bio's I found online said that he likes to find patients with medical conditions that seem to be walled in and thoughtfully plowing through those walls. This was my guy.

I left Japan, left my son and had ablation #4. Again, many burns were made. And again, the procedure was not a success. He was able to slow it SOME, but not as much as he or I would have liked to see. But he was scared that just one more burn would mean I would need a pacemaker. And again, no one wanted that. He also said that there was a lot of scar tissue from where the other docs had goofed around. He jokingly (but not-so-jokingly) said that I should have come to him straight away and could have avoided all those 'unnecessary' ablations procedures. 

I go back to Japan feeling somewhat better. But then a few months later it gets worse. And worse. And then more worse. I can no longer use a manual can opener without becoming short of breath. My resting heart rate is sky high. I am loosing weight because of it. Quality of life in the toilet. I call Doc #4 and he decides to do yet another ablation, this time being more aggressive and knowing that it might result in a pacemaker.

Enter ablation #5. He is aggressive, but to our surprise is able to slow my rate to the 80's without needing a pacemaker. High fives all around!

The thing with ablations is that it takes a few weeks for the scar tissue to fully form. It keeps growing as the burns heal. So I was not going to feel the full effect of this last ablation procedure for a few weeks. But in the mean time I started noticing other symptoms that were new and unusual. 

My head felt full, like I was hanging upside down. And any time I bent slightly forward or back the pressure in my head was unbearable. Then I noticed that the veins in my neck were bulging out, hulk style. I had to sleep sitting up. I decided to say something to Doc #3 (who was local, Doc #4 was in TX). Doc #3 examined and agreed that there was something going on. I have a CT scan to see what exactly it is causing these symptoms. CT scan showed that my superior vena cava was blocked by what they assume is scar tissue. Scar tissue that was there thanks to all of the ablations I have had. 

Remember, all but one of my ablations (read: FOUR) were focused on my SA node, the natural pace maker. The SA node is located in your right atrium, right where the superior vena cava joins the heart. The superior vena cava is the largest vein in the body and delivers the blood from the upper part of your body back to your heart. Since my SVC was somewhat blocked I had a back-up of blood in my veins, which is what was causing all these new and unusual symptoms. 

Doc #3 had no idea what to do. He talked to other docs in the area. None knew what to do. While I waited for them all to talk and figure it out yet ANOTHER symptom appeared; my heart would flat out stop at times. 

Remember how I said that scar tissue keeps growing after the ablation procedure? Well my scar tissue grew to the point where my SA node would decide to just stop sending out a signal for my heart to beat at times. The heart is wired with 'back ups' incase this happens, so it was not a 'lethal' problem, but did mean that I would indeed need a pacemaker after all. My heart was stopping for a few seconds a day. And I could feel it. It was beyond freaky. 

I decided to stop messing around with the local NC docs who had no clue what to do with me. I headed to the Cleveland Clinic, the best heart institute in the US. 

Tests were done. It was found that my SVC was occluded (fancy word for blocked) to about 3mm. That is really freaking small. Because of this the pressure in my SVC was dangerously high. I had to have open heart surgery to reconstruct my SVC. 

And that, my friends, is what lead me to the surgery I will be celebrating the anniversary of in a few days. Details will follow in the second installment, but for now I have a crying Amelia to attend to:-)

Monday, August 22, 2011

Whittling down the To-Do list

I have everything I need to get Amelia's passport (except her picture, which should be easy enough).

Now all we have to do is wait for the DoN to arrange movers and travel plans!

I am not sure my excitement can be conveyed through the computer screen. I simply can not wait for all four of us to be together. I can't wait to see Jeff's face when he holds Amelia for the first time. And I can not wait to see how Noah reacts to being reunited with he FAVORITE person! And, let's be honest, I am looking forward to not being the only adult in the house. 

I have never anticipated a return to Japan THIS MUCH. 

Friday, August 19, 2011

If my pasta is green, maybe my baby's poo won't be

When I think 'dairy free' my brain automatically goes to Italian dishes. But when I think of Italian dishes they almost always include tomatoes and garlic, both of which my little gal pal's tummy does not approve of at this stage in the game. This weeks meal planning has been... alright. Nothing too exciting; I am still getting my feet wet and sticking to obvious dairy free options. (How many nights in a row is it acceptable to eat a bowl of granola with freeze dried berries and almond milk for dinner?)

Monday night was easy: Roasted chicken with mashed potatoes and corn. I used this instead of butter and soy creamer instead of milk for the mashed potatoes (which were fingerling... purple potatoes, gotta love em!). And anyone can roast a chicken. But I have to say, if you are doing it any other way than Thomas Keller instructs then you are doing it wrong (and wasting time). A 4lbs bird meant leftovers to be used in other meals. 

Tuesday night was the aforementioned granola. Snooze. 

Last night I attempted a bland-ish dairy free Italian dish. Because in my head any dish that involves a noodle is apparently Italian. I used Trader Joe's spinach and chive linguine pasta, thinking it would add some flavor. And the noodles are green, which is fun and tricks your brain into thinking you are eating healthier than you are. I have discovered that trying to make a meal with two children in the house is (shock!) a challenge. I am all about convenience. Trader Joe's to the rescue! In the produce section you can buy a blend of onion, garlic and shallots already perfectly chopped for you. Not only a time saver, but this way I can use just a tablespoon or so to add flavor while avoiding a gas attack from my gal. 

So a little olive oil in the pan, a glob of Earth Balance buttery spread, spoonful of easy onions, mushrooms (pre sliced!), squash and zucchini (the only thing I had to cut myself) and some pre cooked chicken from Monday night's meal. Cook it up. Again, not rocket science. Served over green linguine and call it a meal. 

My plate was BEGGING for parmesan cheese. 

It filled me up, and the gal did not seem to be upset by my culinary endeavor. But I can do better! I have the other half of both my yellow squash and zucchini as well as a half a pint of mushrooms. Not to mention my easy onion mix. What should I make? It seems to lend itself to more of the same... only this time I will serve it over quinoa instead of linguine and leave out the chicken. 

With all of that (mindless dribble) said... Amelia is content with a happy tummy. And that is all that matters! 

Thursday, August 18, 2011

I'm an addict

On days that I take Noah to preschool my little gal pal and I head to one of my favorite coffee shops for a morning treat. What, doing it 3 days makes it a tradition, right? I sip my soy latte while Amelia shares her thoughts on the current debt ceiling crisis. Or maybe she sleeps in her car seat. Either way it is riveting.

Today I stood in line and had an inner struggle on weather or not to indulge in a piece of blueberry poundcake. You should have heard the conversation going on in my head. It was like an angel who was carrying a carton of almond milk and a devil who was basting a hunk of cheese in clarified butter were having an epic battle. 

I bought a slice. But the day old one that was like half off. Because when it sits for over 24 hours the milk proteins magically float away.

I got back in my car with my buttery treat still wrapped. I did not end up eating it; I threw it away when I went to clean my car later that morning (so I am glad I bought the day old, half of slice of milky goodness). And that is when I realized...

I have an unhealthy addiction to buttery, milky treats. 

Tuesday, August 16, 2011

Amelia vs. Icecream

I had a feeling it was coming. I went through it with Noah and therefore knew the signs.

She has a milk protein allergy. 

Her first week of life I just avoided any large doses of dairy, like a glass of milk (we drink almond milk anyway) or cheese. I was still using cream in my coffee and was not reading labels to see if any dairy or dairy bi-product was listed. She seemed fine. Bullet dodged. 

Then last week I took Noah to Chick-fil-a to celebrate his first day of preschool. They were handing out free samples of their new peach milkshake. Ya'll, I am only human. 

Then one day I was running late for Noah's drop off and did not have time to make coffee at home. I got a latte. 

And by the end of last week it was clear; full blown milk protein allergy in effect, as evidenced by the content of her diaper. If you have ever dealt with an infant who is in gassy pain, you understand. When in the thralls you will do anything to make your child comfortable (read: stop screaming). I should say that Amelia rarely ever cries to the point where she can not be settled with a snuggle. She really is a very easy baby. And even when I was poisoning her with milk, she was a happy girl. But when her tummy started rumbling, man... she pouted that bottom lip out and told me what for. Heart breaking.

So I am off the dairy. 

Have you ever tried to plan a weeks worth of meals that are dairy free and bland? Oh, I forgot to mention she has an aversion to anything spicy or garlicky, really anything with flavor. And dairy is in stinking everything. Go look at a label. Even if you think there shouldn't be dairy, there will be. It may try to sneak by with a code name like 'whey', but I am on to you (jerk whey, in stinking everything). 

This week I am going to try and cook at home as much as possible with the goodies I got from Trader Joe's (which, by the way, is AWESOME for those with dietary restrictions but who don't want to spend your kids college savings and the OTHER organic grocer). We'll see how this goes. I have not been able to find the time to shower (or pee more than 3 times a day) much less cook. Stay tuned for some fun, bland, dairy free, breastfeeding friendly recipes:-) 

Saturday, August 13, 2011

Noah's first week at preschool

On Friday the Director (who is also the speech therapist) shared her initial thoughts in regards to Noah's evaluation. She DOES NOT feel that he is showing signs of autism, but rather a motor speech delay, specifically apraxia. You can read about apraxia here. 

Again, it felt so good to hear a professional's opinion who had spent more than 2 hours with him. And she did say she would have no problem saying she felt like the diagnosis of autism was right if that was the case. Really I don't care about what the label is, I just want him to receive the appropriate care. 

Anyway, I feel like the 'evaluation' process is finally OVER and we can move on to the next step in the process. Progress! 

I am nothing but confident that with a little speech therapy Noah is going to be talking circles around all of us. In fact, just the other day he came up to me with one of his flash cards and said 'purple plum'. Who the heck taught him the word plum?! 

(for the record, I think plums are gross and I don't think we have had a plum in the house in his two and a half years of life)

Wednesday, August 10, 2011

Evidently Amelia can read. And Noah loves fake bacon.

Amelia is really good at being a baby. It's like she has a magical connection with Dr. Sears and all the other baby genius Doctors. I have not had time to worry about her 'schedule' or if every stinking thing she does is normal or not. And guess what? She just does it all on her own, perfect. She has been breast feeding on demand, with a relatively dependable schedule. She will sleep for 3-4 hour stretches at night, waking to eat and then drifting off to sleep without a fuss. I have been hesitant to put all this in writing and jinx myself, but seriously... she is the easiest baby. And so happy. And pretty. 

As I mentioned before, Noah had his first day at his new preschool on Monday. I thought it was going to take an act of god to get us three out the door without tears being involved. But my children surpassed my expectations, yet again. Of course I explained to Noah ad nauseum what we were doing that day. He was excited. He mainly thought it was cool to take his breakfast in the car. Have I mentioned that he is a picky eater? The one thing that this child can live off of are any of the Morning Star Farms products. It is the only way he will eat a veggie. On this particular morning he was allowed to indulge in the fake bacon, which actually does not have a veggie exchange. 

Yumm, fake bacon and a bagel. Who wouldn't be ready to conquer the day?

Drop off was pretty tearful. I cried. He cried. I called an hour later and the Director assured me that he calmed right down and even went over to another little boy that was upset and told him 'It's OK'. 

Then Amelia and I went to Trader Joe's (to stock up on fake breakfast meats). She slept the entire time. She must have read that in her baby manual. 

When I went to pick up Noah it was reported that he had a fantastic day, participating in all the activities. And apparently told the teacher when he had to go to the potty. I have so been slacking on the potty training. He has been ready for a while, but I just do not think I have it in me yet. 

After pick up we had to go to the pediatrician to check Amelia's weight gain. She had lost a little by the time we left the hospital, so just to be safe they have you come in and make sure everything is working right. And of course, she has gained a steady ounce per day. Exactly what they recommend. She read that somewhere. 

We were lucky enough to see the Doc that USUALLY sees Noah, but who we have not seen since being back in the States. This guy is awesome, and Noah loves him. After confirming that Amelia is, indeed, perfect, he says 'Now let's talk about Noah.'

He said he read the State's evaluation and thought they were talking about a different kid. I won't go into the details, but he said that if a kid is having an 'off' day or does not fit inside a little box that the State will label them as Autistic. He feels that Noah could benefit from some speech therapy, but as far as this 'diagnosis' is concerned, that we are wise to be weary of it. 

It was so good to have a Doc who KNOWS my Noah agree with what Jeff and I have been saying all along. 

So yesterday, my kids knocked my expectations for them out of the ballpark. 

I think all thanks go to the fake bacon. 

Saturday, August 6, 2011

The first week in review

I have two sleeping children in the house right now and about 10 minutes before my eyelids shut in protest from the lack of closed time they have been seeing this past week. This will be brief, and probably not as witty as my usual self (I know, you are thinking 'what wit?').

Amelia is an amazing baby. I know every mother says that. But really. She is. She is so very calm and easy going. She cries when she is hungry and I have waited too long to feed her and she cries when she is cold. That's about it. 

Noah loves his sister. He does not like when she cries and asks me to fix her. He asks for her to sit with him and follow him wherever he is going. I can already picture the dynamics that will take place in their relationship as big brother/little sister and it is amazing. And he DOES use gentle love love hands.

It is possible to recover from a c-section without ever taking a narcotic. I fear the barf and narcotics make me barf. So I was hardcore and would only take advil. Anyone can do it, I am not super hero, you just have to pick your battles. 

It was subtly suggested by my cardiologist and OB that this be my last pregnancy. And it will be, I had my tubes tied. I had to make the decision without thinking of how it might bum me out down the road, because I know it is what is best for me and my health. And after this week with my TWO children I think I am at peace with the decision. Our family feels complete. This little girl has finished our family, and we are so lucky to have her in our lives. 

Jeff and I make stinking cute babies. 

That pretty much summarizes my thoughts after our first week as a family of four. Next week is when the fun begins. I was lucky enough to have my Mom stay with me to help me out. She has to go back to work next week, which happens to be when Noah starts preschool. I don't know how I am going to have all three of us ready to walk out the door by 8am. I have a feeling the other parents are going to get very used to seeing me in my PJ's at drop off... with a baby attached to my boob. 

And now, I am overwhelmed... with love and happiness... but mainly sleepiness. Good night.