Wednesday, March 28, 2012


The one word that swiftly fell out of the mouth of my surgeon when Christos asked him how he felt about my surgery and recovery.

Christos took the day off and we traveled down to Mayo for my surgical follow-up with Dr. Dearani. I wish he'd let me call him Joe. Maybe he would if I asked him. He did argue back when I riled him about not wearing purple today and admitted that he was wearing purple on the day of surgery. He does not lack bedside manner or a sense of humor, this brilliant man.

Let me back up. The drive down was pretty. Much prettier than it was for my trips in October and in February. The rolling farm hills of Minnesota were starting to green and the farmers were out cleaning their crops. One of these days we'll take CT with us so he can see all the tractors along the way.

At lunch Christos spotted two of my ICU nurses and after his insistence I followed him over to their table to say hi. Their sweet faces were so familiar, but my time there is still such a blur. Their names are Ann and Jody, just so we don't forget.

I had a sundae for lunch. Because I'm a big girl and I can. And because I had a nervous tummy and nothing else sounded good.

Before my appointment we strolled the halls of unit 5 and peeked in my room. We didn't recognize any of the nursing staff but it was surreal to be back there and to see the ward how everyone else sees it. Sure I saw it while I was out on my daily walks but it was different this time. It was a reminder that the last time I walked that hall it was at a much slower pace and that I've come a long way in a short amount of time.

Dearani was his usual calm and confident self. We hit him with countless questions and he answered each one professionally and with ease. He seemed very proud of himself for the success of my surgery, and we made sure to show our appreciation for his passion and commitment to Ebstein's patients.
Things to note:
  • My X-ray showed that my sternum is healed and the size of my heart is "normal". You read that right. Pre-surgery my heart was moderate-to-severely enlarged.
  • He's happy with how my incision has healed and reminded me to keep it covered for at least the first year.
  • He explained that in order to keep the incision low they had to stretch the higher part of my chest skin up to get easier access to the bone. Which clarified why I've been experiencing some discomfort in that area. It is scar tissue under the skin.
  • He said I could be jogging now if I want. My rehab nurse is working on this and is putting me on the elliptical machine on Friday.
  • I'm still on weight restrictions until at least week 6.
  • I'm cleared to drive and I even made a brief trip to Target by myself yesterday. I drove the Honda. It's a manual. Driving wasn't painful nor uncomfortable, however the motion of turning the wheel and shifting gears was strange and I can completely understand now why that limitation is necessary.
  • When I asked him if he was teaching his surgical technique to anyone, he explained that EA is unlike any other congenital heart defect because the defect is specific to each individual and in some cases is hard to diagnose because of this. Whereas other congenital heart defects are more identifiable. So until a surgeon opens up a patient and sees what they are dealing with, they don't know exactly how it will be repaired. I understood this answer as though repairing the tricuspid valve is an art that can't be taught. One more reason that I'm thankful he was my surgeon. He admitted that he's passionate about the tricuspid valve.
When we parted ways we thanked him for fixing me up and after graciously accepting our appreciation he threw in a comment about me being "the poster child."

In in order of importance my response was "Awesome!" with a cheerleader clap followed by blushing cheeks.

It was a really good day and I'm relieved the outcome and his response to the surgery and my recovery was positive. I told him that I hope to never see him again.

Friday, March 23, 2012

Memorializing Xander

Wednesday evening was lovely. Our families came over to help us memorialize Xander and we started a few traditions that we intend to carry out every year.

First we wrote notes with the intention of attaching them to a balloon, but the notes weighed the balloon down so instead they'll be buried with the Forget-Me-Nots from his memorial.

Despite it being overcast, we were able to watch the balloon soar to the northwest for a very long time. It eventually made it to the clouds and disappeared.

As we were finishing up with cake the sun started to set in the same location as the balloon and this is what we saw from our front step.

After a cool overcast day, we couldn't believe it so we got a closer look and this is what we saw to the northwest.

Wednesday, March 21, 2012

A year of healing

One year ago I was laboring in a hospital bed knowing that my baby no longer had a heartbeat and there was nothing I could do to reverse what was happening to me. I was in labor 34 hours with Xander. 34 hours of heartache and gut wrenching sorrow.

Today I sit in my recliner recovering from open-heart surgery reading the kind notes that family and friends have sent me. My heart is full knowing that people acknowledge him and our loss. That is all I ever wanted for him. I'm not sad. I suspect I'm numb. Or perhaps I've grown so much that my strength has turned me into a different person. I no longer weep for what was or what should have been. Instead I shed tears for the legacy he left. Xander gave me more in his short 16 weeks than I think some people get in a lifetime.

I thought today would come and I would need to make a big deal about the anniversary of his death and birth. But today is just like any other day. I miss him the same regardless of what day it is. I will likely think of him and that day a bit more but it is good opportunity to reflect on that time and remind myself how little control I have in life and that moving forward from that tragic time doesn't mean that I'll ever forget him.

There are still many unknowns for us in this life. What I do know is that we wish he were here and we believe he is watching over us and we will see him again someday. My heart will never be the same, nor will my spirit.

Since Xander will never get a birthday celebration, tonight we plan to have cake, release a balloon, light his candle and thank him for reminding us that our hearts are full of more love, strength and compassion than we ever imagined.

Monday, March 19, 2012

Day 25

After talking with various people over the past few weeks it has dawned on me that while everyone knows the surgery was a success, it's not exactly clear how and why it was successful.

As I mentioned prior to surgery, the goal was to repair my tricuspid valve. It was displaced and no longer functioning well at all. There was also suspicion that I had a small Atrial Septal Defect (ASD), which is a hole (or holes) between the top two chambers of my heart. This was discovered when I was one day old via cardiac catheterization in my groin. It was believed that the holes had closed up as I grew up. Since that part of the defect is not viewable by an echocardiogram, we (meaning me and my cardiac team) went into surgery not really knowing for sure. After such a long description you'd think it was a big deal, but Dr. Dearani made light of it and brushed it off as a small task. It turns out that I did have an ASD and it was repaired during surgery.

The major goal was of course to repair my tricuspid valve. During pre-op I inquired about how it would be done and Dr. Dearani explained that they would use my existing tissue (because while it didn't properly form while I was in utero, I did have enough tissue to use) along with a synthetic annuloplasty ring to form the valve. The ring is used to hold the tissue in place and to form a functioning valve. While the annuloplasty ring is foreign to my body, there is no need for me to worry about rejection and I don't have to take any anti-rejection meds for it. Isn't that amazing?

And this is essentially what occurred.

I will be taking Beta Blockers, aka blood pressure meds, for the next few months and other than Tylenol that is it. Prior to surgery I hadn't thought much about what my regimen post-op would be but I definitely didn't think it would be this minimal.

What else are you curious about that I haven't shared?

Our weekend was lovely. We spent a ton of time outside playing baseball and visiting with neighbors. CT got a new ball and "gub" (glove) for filling up his potty chart.

And finally, some purdy pictures for your viewing pleasure of my stay in the hospital and a few from when I first returned home.

In front of St. Mary's hospital on the morning of surgery. It is a stunning building. Of course we were rocking the purple. My medical staff did too. In fact my PA, Lucinda, wore purple every day I was there.

My onsite MBoA's. AKA the 'rents'

Post-op in the ICU. For the life of me I don't recall requesting to have my picture taken, but it doesn't surprise me because a) I'm a blogger. b) I wanted to document the journey. Check out all the gadgetry helping keep me alive and stable.

With my heart pillow which has barely left my side since. It's used for helping clear out my lungs when coughing and more recently when sneezing, which is quite painful.

I believe this was taken Saturday, recovery day 1, and it was my first time getting out of bed and sitting up. My lovely nurse was combing my hair.

Still completely doped up but looking pretty darn good for recovery day 2 in the ICU.

Recovery day 3 - Out for one of six required walks with my Dad and Doreen. Notice my awesome socks.

Moving slowly with my nurse Nathan and Doreen.

I pretty much wore my hair in braids around the clock the first couple of weeks.

Mostly likely Facebooking.

Snuggles with CT upon returning home.

All tucked in for bed. This is how I've slept every night since.

Friday, March 16, 2012

3 Weeks Post-Op

The first week is a blur. The second week moved at a steady pace. And the third week has flown by.

I keep hearing how surprised people are to see me out and about and how great I look. And to be honest, I'm also surprised. I continue to feel well and am recovering at a steady pace. I know I'm not back to 100% and that I likely feel well because most of my day is spent relaxing and on the days when I don't get as much relaxation in I can feel the fatigue.

People have been asking me if I notice a difference. At this stage, I believe I can feel a difference. Before surgery I was functioning at 78% oxygen and I was overcompensating and pushing myself to reach 91% output. Being out of breath after walking up the steps was normal for me. I had never thought anything of it. And now when I walk up the steps I'm not out of breath. I may be fatigued but that's because I'm in recovery mode and I anticipate that once I'm fully recovered I'll really notice a difference and I won't be so tired from overcompensating what my heart couldn't do on it's own before.

When we met with the surgeon, Dr. Dearani, last fall he asked me to grade how I felt energy wise. I gave myself a B- knowing that I wasn't functioning as well as I had in the past or as well as other people with healthy hearts. He said he would do his best to make me function at at least a grade better than that but since I was already functioning at 91% output that I may not notice the difference. At 3 weeks post-op, I'm pretty sure I can already notice the difference.

The weather has been outstanding this week and it has been refreshing to get outside with the pups and CT nearly every day.

Christos bought us a bird feeder for Christmas. Since there wasn't snow and the ground was hardly frozen, we put it up the following week. We've been waiting and waiting for the birds to discover the feeder and just this week they have. It's right outside the window about five feet from where I spend a lot of my day. It's been nice listening to them sing. Spring is near but I won't be surprised if we get another cold front before May hits.

Rehab is going well. My speed and mets are increased each session as long as I am comfortable with it. Which so far I have. I've cut back significantly on my pain meds this week and I've started to feel some new things. The PA (Lucinda) who assists my surgeon and oversaw my care in the hospital called to check in on me today and reassured a few concerns I had. One being a pinching and tugging high on the left side of my chest. For records sake, she said it is likely scar tissue that is forming and the discomfort could last for weeks or even months but can be managed with Ibuprofen. Which I haven't been allowed to take due to risks of bleeding post-op. It was nice to get a follow-up call since I had just been reminiscing about my hospital stay after receiving an explanation of charges from Mayo in the mail today. Yikes.

The pictures from my hospital stay have made it off of my camera. Please hold me accountable to get them posted here. They aren't anything exciting, but I'm sure those from afar are curious.

I'm off to enjoy this gorgeous weather.

Wednesday, March 14, 2012

Day 20

I definitely haven't held up my promise to myself and to my readers of posting regular updates of my recovery. The truth is that there isn't really anything exciting worth sharing. My recovery has been smooth. Easier than I anticipated with no unexpected setbacks.

I'm a few days shy of three weeks post-op and I'm able to do most things myself now with the exception of my weight limitations and driving restrictions. My pain could be better categorized as discomfort. I weaned off the prescription pain meds over the weekend which I'm glad for. They caused mood swings that became more obvious during the detox process. I can still feel my sternum trying to heal. I notice it most when trying to reach behind me and while getting dressed. I attempted to sleep in bed last night after a successful nap in the afternoon but I couldn't find a comfortable spot. Laying nearly flat caused a lot of pressure on my chest and it felt suffocating so finally at midnight I resumed my spot on the recliner and discovered how much more comfortable it really is at this point.

When I left the hospital my incision was 75% healed and for the last week and a half it has been 95% healed. There are just a few stubborn spots that are taking their time. Kind of similar to a newborn umbilical cord. It's become more of a nuisance than anything.

I started cardiac rehab last week and it's more basic than I expected but I see the benefit of it. If not for getting my butt back in to exercising then simply for the fact that my recovery is being followed by a medical professional on a regular basis. So far my rehab routine consists of walking on the treadmill at a slow pace for 20 minutes and riding a stationary bike for 15 minutes. While I'm there the time goes quickly and the exercise seems fairly simple but when I return home I'm usually pretty exhausted. It's a reminder of how much my body and heart have endured over the past few weeks.

I have been overwhelmed by the amount of support and well wishes that I've received and continue to receive. I hardly know where to start to express my gratitude. I have gotten cards and texts and emails from all over and from people I haven't seen in years. And for those who have stopped by to visit and bring us food and love...well it all all has been so heartwarming and as an act of appreciation I promise to pay it forward when the opportunity arises.

Sunday, March 11, 2012

The joys of motherhood

Yesterday my heart was full of fear and pride all at the same time.

If it looks to you like he didn't have a choice in the matter, you are wrong. After seeing one classmate willingly jump off the diving board he was quick to be next in line. I didn't know whether to scream or cry.

Wednesday, March 7, 2012

Day 13

Today didn't go quite as I expected. After having many good days in a row, I woke up on the wrong side of the recliner this morning. At my check-up yesterday I got the pneumonia vaccine, because going forward as an open-heart patient I will now be in the vulnerable category. Aside from turning into bed at an early hour last night, I was feeling pretty good. I woke up to an extremely sore arm from the shot site, so sore that I can't lift it above my head and it was accompanied by flu like symptoms.

So I didn't do much today. Maggie came to spend the day with me. I managed to get a shower in but it left me so exhausted that I decided to not go to my first day of cardiac rehab.Hopefully the chills and aches will pass by tomorrow so I can muster up some energy for rehab on Friday.

The good thing is that I don't need the vaccine again until I'm 65.

Tuesday, March 6, 2012

Day 12

I want to take a few sentences to give an enormous virtual hug to everyone who participated in the Wear Purple for Mandy event on the 24th and the days following,  and also to those who sent cards and texts with encouragement and support. Going into surgery I had brief moments where I thought it may all seem so silly in the end, but I can say with 100% certainty that the support and love I've received over the past few weeks has guided me to a really good place in my recovery.

I also can't deny credit to my sister who has taken on many different roles throughout this process and she's done so with worry in her heart but a smile on her face and I am eternally grateful for her, As a stay-at-home mom who works a part time job, she took on these tasks as though they were a full time job and she did them outstandingly well. Cory and the boys get some credit here too since they helped keep CT entertained and on schedule during the days were we away.

To my parents and Christos' parents who stayed by our side starting with dinner the night before surgery and through the weekend. Thank you for holding our hands through this and for guiding us during a time our marriage where for better or worse was challenged.

Which leads me into my heartfelt tribute to Christos. My heart explodes with love and gratitude for this man. So much more than I ever thought possible. We have been in the depths of sorrow, the highest of happiness and now I can say that we've trudged through some really difficult times together and we moved on from it a stronger couple than I ever thought possible. Christos' commitment to my care and recovery has exceeded all my expectations (I didn't have many doubts). From what I hear, he didn't leave my side while I was in the ICU. He was there to catch me when I fainted in the shower at the hospital and since returning home he has been waiting on me hand and foot. Literally. He tucks me into my recliner at night and lays an extra quilt over my cold feet and tucks me in until I can't move. I know he is exhausted, and his marathon training has taken a back seat, and as soon as I can start picking up some of my own slack I will make sure that his outlets and passions get back on track.

Where am I today?

Many parents at daycare were surprised to see me at drop-off and pick-up today. I had my initial cardiac rehab appointment and check-up this morning, so my mom and I dropped CT off at school. After an afternoon siesta, I was ready to feel the 50 degree sunshine again so I ventured out with Christos to pick up CT. It felt good to be out. Other than watching CT"s swimming lessons last Saturday morning, I haven't left the house since returning home last Wednesday.

When I was discharged from the hospital I had a slight collapsed right lung which was uncomfortable. They were still working through my beta blockers (blood pressure meds) so that my BP wouldn't drop so low that I'd end up on the floor of the hospital bathroom again. I'm still sporting a bruise from that fiasco. The echocardiogram showed 'trivial' leakage of my tricuspid valve which both my surgeon and cardiogologist were thrilled with. It's quite amazing to think that for 34 years my heart was working overtime to pump blood and now it can finally function as it should.

I don't recall much about being in the ICU and that of which I do it is not pleasant. I applaud the drugs they use that help erase the memory of that time.  My pain has been manageable. It never went above a 5 while in the hospital and only one day since returning home was I uncomfortable but I quickly learned my lesson with skipping a dose of pain reliever. All of my discomfort is from the sternum trying to heal. My incision and drain site are almost completely healed. Which is so much faster than I expected.

Tomorrow I'll started cardiac rehab 3 days a week for at least 4 weeks. I'm fully expecting to be working out with people twice my age. From the 10 minutes that I did on the treadmill today, I know it will be hard, but I'm ready to get the show on the road. (We've added these appointments to the Care Calendar so if you are available to take me, I'd love your company.)

There is so much more that I've wanted to write about but for now I'll stick with these basics. Hopefully I'll get around to going through some of the pictures we've taken so I can share them here.

Thank you to everyone who has prayed, sent your well wishes and encouragement. I have been overwhelmed by the support and it has inspired me in so many ways.