Heart Surgery: Preparing for Round Two

Faith.  It is a word that has settled deep in my mind and my heart these past years.  Faith and Trust for all of the unknown things I am facing in life- questions unanswered, reasons behind the why, and in decisions made that affect others.  As I once again face a crossroads of decisions and questions, I have again clung to my Faith and pray for guidance daily.

This past March, I was sitting in my garage after working out, which as a cardiac patient (whose heart rate was not to exceed 130 max) only consisted of power walking, light elliptical training, strength bands, and recumbent bicycling.  I was talking to my sister telling her I had felt short of breath the last few days similar to how I felt before my open heart surgery last June.  I joked with her about COVID and my shortness of breath since the pandemic had just started to affect our area, even though I knew that wasn't what was causing it, and told her I was going to see if maybe I was just tired from work and if it would go away before messaging my doctor. I gave it about a week and then sent my doctor a message that I had been more tired than usual and experiencing shortness of breath, but hadn't noticed anything else out of the norm.  That was on a Friday and they wanted to see me the following Monday.   

I walked over from my office in the NICU late that afternoon, and he listened to me and looked over at his nurse and asked what the ECHO schedule looked like that day.  I was sent over for an emergent ECHO, which showed that both my mitral and tricuspid valves were severely leaking.  I cried the entire way back to my manager’s office where I broke down in tears over the new unknown future I was facing.  I had an urgent TEE done a few days later (which for those of you who don’t know, a TEE is a transesophageal ECHO which provides better images of the heart than a traditional ECHO.  You are either sedated or asleep during the procedure in which they put a scope down your throat with a camera on it to capture the images).  The TEE actually showed that my valves were not leaking as severely as the images showed on the regular ECHO.  I was elated.  My medication was adjusted, and although I knew I would indeed need surgery again at some point in the future, I was hopeful my body could hold off as long as possible.  My shortness of breath improved some on the higher dose medication and I altered my exercise routines to keep my heartrate lower than 120.   

But then in late June, I was riding home in the car while Stephen was driving and my vision began to tunnel in at the edges.  I put my hand up on my neck to feel my pulse and did not feel anything. I never felt my ICD (implanted defibrillator) pace or shock, but the last time my vision tunneled like that had been over 3 years ago when I was pregnant with Owen and had experienced an episode of Vtach.  I downloaded my device with my remote machine at home and called the clinic the next day.  The download confirmed I’d had a 14 beat episode of Vtach.  From that point, I had labwork done and another ECHO.  The ECHO again showed severe regurgitation of both my mitral and tricuspid valves, and the valve changes were thought to be the cause of my vtach.  Stephen and I met with the interventional cardiologist I see and she gave me a lot of information.  She also wanted to repeat the TEE I’d had done in March.  This would be my 4th TEE in the grand scheme of it all.  The TEE was scheduled for July.   

In late July before my TEE, my husband got COVID.  Before anyone judges, we wash hands, wear masks, use hand sanitizer, socially distance, and ALL the things you are supposed to do.  We were supposed to celebrate my grandmother’s birthday on the upcoming weekend, and on the Wednesday night before, he told me that his chest felt kind of tight, he’d had a headache, and he had gotten winded while walking up a flight of stairs.  I told him that was my norm and I wasn’t worried about it.  He had no cough, no fever, no sore throat, nothing that would point to COVID.  But because we have easy access to testing and were supposed to go see family that weekend, I setup an appointment for him to be tested.  When he went on Friday to be tested, he almost cancelled because he felt fine.  I told him to just to go ahead and do it so he wouldn’t worry about it and also because we were going to go see family.  Well, Saturday morning at 6am he woke me up and told me he was positive.  In a whirlwind, I had him situated and out of our house in just a few hours to go and quarantine for the next 10 days in his parents’ basement.  That Saturday night, he lost his sense of taste and smell but overall his symptoms were extremely mild and besides fatigue, headache, and congestion, he felt better by mid-week.  Meanwhile, I cleaned my ENTIRE house, but it was too late.  On Monday, I woke up with a slightly sore throat and Tuesday I had a low grade fever, body aches, and nausea.  And on that Thursday, I tested positive as well.  I never had a cough, but I did have increased shortness of breath above my norm.  I threw everything I could think of at the virus in regards to supportive care, and I did not have go to the hospital, for which I am so thankful.  Needless to say though, my TEE was delayed until late August.  And for those who may wonder, yes I had all 3 kids at home with me the entire time.  I believe 2 of the 3 did get the virus, but I chose not to have them tested since it would be traumatic to them and would not change their treatment.  One had symptoms that lasted 36 hours and one had symptoms that lasted 24 hours.  We all stayed quarantined at home together until I was cleared to return to work.

Right before COVID happened, I had already started collecting my records and information for a formal second opinion.  When researching my options for surgery last year, I had reached out to Cleveland Clinic and consulted them on my repair surgery.   I knew I would be reaching out to them this time too.  When I knew my valves were leaking again, I started doing my research on what I should do next and where I should go. They are the number #1 heart center in America.  Many people may wonder why I didn’t go there to begin with, but at the time many different factors played a role in my decision to have my surgery done locally.  I received multiple positive opinions on the local surgeon I had chosen and felt “lucky” to be able to have it locally and not travel.  A big part of my decision was also based on the fact that I was experiencing around 300 PVCs an hour then, and I didn't know how my body or my heart would react to such a major surgery, especially with a history of cardiac arrest.  Simply put, I was scared and extremely fearful to travel 10 hours away to a care team who didn’t know me on a personal level, and that, coupled with some other factors, solidified my decision to have surgery locally.   

Knowing what I know now, I don’t know if I would have had surgery locally.  But as a friend of mine who is living with metastatic breast cancer recently told me, she also had to have a “re-do”.   Now multiple surgeries later, she uses her experience to help others.  She told me, “We make the best decision we can at the time with what we know.  When we know better, we do better.”  And she is right.  Her words have helped me move past the what ifs and onto the okay this is what we are doing now. 

Cleveland Clinic reached out to me while I was out with COVID.  The surgeon wanted to try for a re-repair of my valves which brought up a lot of questions.  I setup a formal appointment to meet with their cardiology team in late August.  The lyrics of the song “Trust in You” by Lauren Daigle ran through my mind constantly.  Trust is hard when you don’t know what you are facing, when you don’t have answers, and when you are trying to make plans that will shape decisions for the rest of your life.  I don’t believe many 37 year olds spend their nights not sleeping because they are researching morbidity statistics in relation to mechanical valves, amount of heart surgeries one can have in a lifetime, valve on valve replacement procedures, and ICD extractions and relocations among many other things.  The things I prayed for the hardest prior to my appointment in Cleveland were clear answers and guidance on what to do.  And I got it in a couple of sentences from the doctor there. 

I had my TEE done locally in late August.  They actually put me to sleep for the first time instead of just heavy sedation, and it was the BEST one I’d experienced yet!  The TEE showed moderate to severe leaking of both my mitral and tricuspid valves, and they both appeared myxomatous, which is degeneration of the valve tissue.  I once again was left with more questions than answers though, and Stephen and I flew to Cleveland the next day.  Cleveland Clinic was exactly what I had hoped it would be for my appointment.  The hospital runs like a well oiled machine and you can easily see why patients rate them so highly.  Within minutes of meeting the new cardiologist, I had my answers.  He was very straightforward, definitely did not mince any words, and even though what we discussed was hard to hear, I appreciated the candidness as it was exactly what I had prayed for and needed.  My repair had been done very poorly and nothing was going to fix my heart but another surgery.  He wanted to discuss everything with the surgeon in Cleveland to see if he thought he would be able to re-repair my valve or if I needed to go directly to a replacement.  If a replacement was going to be my best option, then I would potentially want to wait until my valves worsened even more significantly since replacements only last a finite number of years.  Since I am young, we discussed a mechanical replacement as my best option should it need to be replaced.  This would also mean blood thinner medications for the duration of the mechanical valve, which requires diet and lifestyle modifications.  We left Cleveland and waited for the surgeon’s office to get back in touch. 

The following week the surgeon’s office called and they did want to try and do a re-repair of my valve.  So here I am, scheduled for my second open heart surgery on October 13th, exactly 16 months and one day from my June 12th, 2019 surgery.   I am anxious, stressed, and yet hopeful that this surgery, regardless of re-repair or replacement, will provide me with a heart that pumps efficiently for at least the next 20+ years.  I doubt this will be my last open heart surgery, but hopefully it will be the last one for a long time.  I am not sure what all will occur during the surgery.  I know my mitral valve will be re-repaired or replaced and my tricuspid valve potentially repaired.  Also, my current ICD has a lead that runs through my tricuspid valve which is secured into my right ventricle, so it may be extracted and replaced with a device that doesn’t have a lead going through my valve.  All of this will be discussed with my Cleveland team of doctors the week before my surgery and some decisions will not be made until they can physically see my heart.  We will be flying up on Oct 5th to prepare- I will have to have a CT scan, chest xray, labs, cardiac cath, meet with the surgeon, meet with electrophysiology, and get TWO covid tests.  The good news about the covid tests is that they do not do the deep nasal swab test so it shouldn’t be as bad.  I am praying that I will test negative by this time since I’ve read the virus can stay in your body in fragments for 90 days.  If I test positive still from my infection in July, I’m not sure if they will proceed with the surgery or delay it, but they do know I have had it. So, I’m hopeful that the surgery will happen. 

Please keep me and my family in your prayers in the coming weeks.  My daughter is now 10 and understands what is happening.  We have had a few crying sessions over the last few weeks since I set my surgery date.  I know my children will be well taken care of by grandparents while we are in Cleveland for at least 2.5 weeks, but I know it will still be hard on everyone.  When I had surgery last summer, I let my daughter wear my cross necklace that I never take off.  Stephen gave it to me for my birthday the year we got engaged.  I wore it on my wedding day and had it on the night I had cardiac arrest.  She wore it the entire time I was unable to during surgery last year, and she will be wearing it again this time.  I’m hoping it will bring her some comfort.  The boys seem ok, and Matt's understanding is that I am going to get the "doors" in my heart fixed again so they will close correctly.  But I think Owen will have a hard time when I come home and cannot pick him up for awhile again. Pray they all stay healthy while we are gone.  Stephen will be the only person in Ohio with me for the duration of the surgery.  Due to COVID, I can only have one visitor and he cannot stay overnight with me but can visit me the majority of each day.  Thankfully, there is a hotel that connects to the hospital there and that is where he will be staying.  Please pray for him since he will be alone while he waits during the surgery, digests information they tell him regarding my heart and surgery, and especially on the nights he has to leave me at the hospital.  I was told by the Cleveland team that recovery from a second surgery is typically longer, but if all goes well and I progress like an average patient, we should hopefully be flying back home around 10/22.  

Overall, I am ready to be on the other side of this surgery and on the road to recovery again.  I am truly grateful for every day and opportunity given to me.  It’s crazy all the twists and turns life brings, but perhaps I will be able to help someone else one day and that gives me a sense of purpose through all of this.  I am going to remain faithful over fear and trust in the plan that God has for my life, even when it’s hard.  Please keep us in your prayers over the next few weeks!!

 

Lamentations 3:21-24 

But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases, his mercies never come to an end; they are new every morning; great is your faithfulness.  "The Lord is my portion," says my soul, "therefore I will hope in him."

2 Corinthians 4:16-18

"So we do not lose heart.  Though our outer self is wasting away, our inner self is being renewed day by day.  For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal."  

 

 For more information on Mitral Valve surgery, you can visit https://my.clevelandclinic.org/health/treatments/17240-mitral-valve-repair

 

 

A look inside my Life as a Heart Patient

            I always post pictures of my children on Facebook and Instagram and document a few other life events as they occur- mainly because I consider this their virtual baby book/photo album of sorts- but I do not post a lot about my heart problems.  I am an open book if you ever talk to me about it, but I don't tend to post details about it on social media.  I stopped blogging a few years ago- not by choice but because life happened and I spent more time with busy kids, my job, and other activities and less time on my computer at home.  That being said, I thought this would be a better place to share a little bit about my heart journey with others and rather than creating a new blog, I decided to use the one I already had.  I don't know if this means I will ever post regularly again, but I would like to share my story and think this is a pretty good place for it.  For those who don't know it, we will start at the beginning, so I apologize for those who have heard it before!  For those who are medical, this is my interpretation to the best of my ability as a heart patient, and even though I am a nurse, I can still be wrong!  For those who are traveling on their own cardiac journey and may come across this by chance, I hope it gives you hope, answers, and guidance for your own heart journey.  And for my family and friends, thank you for loving me through all of this.  Your support and prayers are felt everyday.  So here is a look inside my life as a heart patient-- it is a long post, but I have never put this down on "paper".

The Beginning

    As an older child/teenager, I always had low exercise tolerance (shortness of breath) and would sometimes feel pounding heartbeats inside my chest, especially walking up a flight of stairs.  To me, this was my "normal" and had always been so- it never bothered me or stopped me from doing what I wanted to do.  I was put on an albuterol inhaler for assumed exercise induced asthma during my soccer years in high school and never thought twice about it. Both of those things may be completely unrelated to now!  But in 2009, I became pregnant with our first baby and began having terrible heart palpitations.  I remember listening to my heartbeat with my stethoscope and having anxiety about how erratic I thought my heart was beating.  If I only knew what was in store for me in the future, I would have known this was nothing in comparison to what was to come!  This is when I first saw my cardiologist.  They did an ECHO while I was pregnant and I was diagnosed with mitral valve prolapse but otherwise, my heart looked good.  I wasn't too concerned since many women (and men) have mitral valve prolapse, including my mom.  I delivered Emily in April 2010 without complications and was started on a small dose of beta blockers when she was a few months old. 
     In 2012, I became pregnant with my 2nd child.  This pregnancy seemed less complicated than the first and I was so thankful- maybe because I had become more used to the irregular beats?!  I was still being followed by cardiology and after I delivered Matt in Feb 2013, I saw my cardiologist and he recommended I see an electrophysiologist.  Stephen accompanied me to my appointment that day and I will never forget the doctor listening to me, stepping back, and telling me "You need a cardiac ablation.  You are in bigeminy right now."  Umm, I'm in what?  That was the first time I had ever heard that term and it means every other heartbeat is a PVC, or abnormal beat (preventricular contraction).  I cried in his office, shocked that this was something I was going to have to have done.  I was terrified and worried about my small children at home.  But when the options were explained to me further, I agreed to the procedure and underwent a cardiac ablation in August of 2013.  After this, I was put on an anti-arrhythmic medication, but I never could tell a major difference in my heart and how I felt on a day to day basis.  I was tired, still having palpitations, and kind of thought it must not really have worked since I didn't feel that much different.  In Jan 2016, I asked both my electrophysiologist and my cardiologist if my heart was ok to have a 3rd baby.  Both immediately responded yes.  After convincing my husband, we became pregnant in Oct 2016 for the 3rd and final time with Owen.

My Cardiac Arrest

      As a side note, I did not have a heart attack.  My heart vessels are perfect, but my electricity that controls my heart rate/rhythm is not and this was the culprit for my cardiac arrest.  On Dec 3, 2016, my daughter and I went on a mommy/daughter shopping trip that we had done the past 3 years at Christmas time.  We did a bunch of Christmas shopping, ate lunch at Olive Garden, and saw the movie Moana.  After the movie, we headed back home.  I called my mom on the way home and told her I had been really tired that day despite sleeping well the previous night.  When we got home, we went through our purchases with Stephen and Matt, and I headed to get a shower while he cooked burgers on the grill.  We were getting ready to watch the ACC Championship game that Clemson was playing in.  I remember getting dressed- I had on grey pajama pants and a green Masters t-shirt.  I remember sitting on the edge of our couch in the den.  And then I remember nothing.
     Stephen came inside to ask me if I wanted cheese on my buger, which was a question he already knew the answer to since we were specifically having Pimento Cheese burgers for dinner.  God must have led him inside to me is what we can figure.  He asked me the question, and I didn't respond so he walked over to me and saw me just laying there, kind of slumped backwards.  He shouted it at me and I still didn't move.  He said my head was tilted back, my eyes were rolled back into my head, and I was not breathing.  He has no medical background and was a professional golfer before he began a career in insurance sales, but he knew to pull me onto the floor, start CPR, and then he called 911.  The 911 operator instructed him on how deep to push my chest, how many breaths to give me, and how fast to push.  They stayed on the phone with Stephen for the 11 minutes of CPR he performed until EMS arrived.  Two EMS teams arrived to my house along with a fire truck.  They took over CPR and had an AED with them.  I had to be shocked 4 times, up to 360 Joules, before my heart returned to a normal rhythm.  At this point, Stephen was in the kids bedroom with them praying.  They came and got him to tell him that they had my pulse back and were taking me to the ER.  A neighbor 2 houses down came and got the kids until my sister could arrive to be with them.  And then our neighbor across the street drove Stephen to the ER, where he was met by a friend of my father and my youth pastor (also the pastor who married us!).  My parents were a few hours away and had called them to make sure that Stephen wasn't alone.  They put him in a small room when he arrived, away from other visitors, and continued questioning him on my potential drug use (none!).  But normal 33 year old women, otherwise healthy and fit, do not just go into cardiac arrest.  While in the local ER, I went back into v-tach had to be shocked again.  I was intubated, had a central line placed, and had a CT scan of my head and chest with contrast, which Stephen had to sign consent for due to my pregnancy.  Stephen requested I be transferred to the hospital where I received all of my care.  I arrived sometime around 3 in the morning via EMS.  They had allowed Stephen to ride with them in the front seat.  Multiple specialists came in to treat me while I was admitted including a high risk OB-GYN doctor.  They scanned my abdomen and found a heartbeat still, but warned Stephen not to expect very much from either the baby or myself as far as recovering.  But within 24 hours, I was alert and extubated.  I had terrible short term memory loss and would ask the same questions over and over again, exactly like the movie 50 First Dates or Dory from Finding Nemo.  I didn't remember I was pregnant or why I was in the hospital, and would have to be told repeatedly.
     I spent about a week in the hospital after receiving an Implanted Cardioverter Defibrillator (ICD), who I refer to as "Debi", my 24/7 ambulance service.  The only things I remember about the hospital is one of the nurses sitting on the foot of my bed before I was discharged, a few of my friends and one of the church pastors visiting, and my mom dressing me in some clothes from Walmart because all of mine had been cut off and I didn't have anything to go home in that day.  Stephen stayed behind at the pharmacy to get all of my new medications for me and my mom drove me home.  When I got to our house, everything looked familiar but I didn't remember where anything was and my mom had to give me a tour of the house.  And then I slept- A LOT.  I probably did more sleeping that I have ever done in my life, but I think this allowed my brain and body to heal.  There are definitely still large gaps in my memory from the days before and after the event, but it is probably a blessing in disguise that I won't get all of it back.  I only had 2 more episodes of V-Tach during my pregnancy- one I came out of on my own and the other I was in the process of blacking out when my ICD sent a "mini-shock" to pace me out of it.  And then on June 24, 2017, I delivered a healthy TINY baby boy who had run out of amniotic fluid and had a true knot in his umbilical cord.  But he is perfect and definitely worth it all.  And who knows, being pregnant with him may have saved my life because apparently at some point, I was probably going to have cardiac arrest and the pregnancy may have helped speed up the process!

The ECHO that Changed it All

     In January of 2018, I went in to have another cardiac ablation, but it was unsuccessful because my PVCs were coming from multiple locations inside my heart, and they said it would be like trying to chase a rabbit down a hole.  But the doctor performed something called an intra-cardiac ECHO which gives you images inside the heart.  This of course confirmed my mitral valve prolapse but it also showed that one of the leaflets of my mitral valve was hitting the inside of my ventricle (which it is not supposed to do) and every time it did this, it cause me to have extra beats.  I was referred to a physician at Emory and had a TEE done (Echo performed like a scope in your esophagus).  This allowed clearer pictures of my mitral valve and the physician there showed me also where I most likely had scare tissue formed from years of my ventricle being "overworked" due to the prolapsing valve.  In a nutshell, I was diagnosed with sometime called "Malignant Mitral Valve Prolapse" and it is the most likely cause of my cardiac arrest.  The treatment is medical management of arrhythmias plus an ICD for life (because you can fix the valve but you can't fix any scar tissue that has formed).   When you look up malignant MVP, it matches me.  I am a female, age 30 to 40, with mitral valve prolapse, and experienced sudden cardiac arrest.  Based on the articles I've read, it is a newer diagnosis and usually diagnosed post-mortem during an autopsy.  I was told by the physician at Emory to limit all exercise, continue my medications, and try to keep my own valve as long as possible but that I would eventually need my mitral valve to be fixed and I would know when the time came and it would either be gradual or rapid.

The Here and Now

     I have lived mostly in bigeminy (every other beat PVC) or trigeminy (every 3rd beat PVC) for the last few years and become very accustomed to the overly strong beats of my heart, the skipping beats, and the ever present fatigue.  My average PVC count in an hour is usually in the high 200 to low 300 range- you can do the math!  Some days are WAY better than others and some are just awful.  I get short of breath very easily and can't walk up more than a few flights of stairs without taking a break.  I have grown to accept that this was going to be my life, but I was ok with that because overall I felt ok and I was here for my family. But in January of this past year, I begin experiencing increased shortness of breath. I brushed it to the side for awhile and figured it was maybe just anxiety or on days with bad palpitations.  But it increasingly got worse and I sped up my yearly ECHO by a few months and had it done in February.  This ECHO showed moderate to severe regurgitation (it had only been mild to moderate in the past), but my ventricles and pressures inside my heart all looked fine.  They recommended I see an interventional cardiologist here to become an established patient in case of future events.  I thought our initial visit was just going to be a "meet and greet" session but she patiently explained to me that my valve was basically wearing out my heart.  When I told her I wasn't symptomatic yet, she explained that younger patients tend to compensate for their symptoms.  And when I thought about it more, I realize she was 100% correct.  I was symptomatic, but I had learned to deal with so many of my symptoms as part of my normal life.  On March 21st, I had a right and left heart cath as well as another TEE procedure.  The heart cath showed that my "plumbing" (my arteries) looked great!  But both the cath and TEE confirmed that my regurgitation, or backflow of blood in my heart, was severe and that the valve was large, billowy, and was in need of repair.  I had been told at Emory that I needed to go to one of the major heart centers like Cleveland or Mayo Clinic to have my valve fixed.  But I agreed to meet with the new surgeon here whose specialized in mitral valves.  He is the first person I have met with on this journey that told me my valve could be repaired and not replaced!!!  I surprisingly really liked him but I followed through and got a second opinion from Cleveland Clinic and was told that due to my history of V-Tach and because of the lead from my ICD that runs through the right side of my heart, I was not a candidate for minimally invasive surgery and would need a full, open chest approach-- but they agreed that my valve was repairable.  After MUCH thought, debate, and prayer, I decided to have my surgery done locally in Augusta near my support system because of my history of cardiac arrest/arrhythmias and being offered the same procedure at both places.  I think being able to have this done locally will increase my chances of a successful recovery from both a physical and mental standpoint and I feel lucky to be given a choice- not many patients have one and last year, I would have been one of those patients.  And one of my greatest fears is having cardiac arrest again or post op complications, and being 10 hours away from home and my physician team here was not my optimal choice. 

Preparing for Open Heart Surgery

     So how does one prepare for open heart surgery?  Well, my mom came and helped me clean my house, I did some therapeutic shopping on Amazon, and I filled out online will forms over the phone with my husband while I watched my daughter at her first tumbling gymnastics class!  My surgery is tomorrow, first thing in the morning.  My heart will be stopped for a period of time while he repairs my valves.  Because I have an ICD lead that goes through my tricuspid valve on the other side of my heart, it is leaking too and will possibly need repair as well. If my mitral valve cannot be repaired, then it will have be replaced, which is not the most optimal for my health, longevity, and my heart, but it would fix it.  If I do require a replacement, I have chosen a tissue valve with the full understanding that they wear out much faster than a mechanical valve.  But I am not ready at this point in my life to be on blood thinners forever, which requires frequent checks and diet changes to stay within an optimal range.  Plus they are loud and your body ticks like a clock- which would drive me nuts if my arrhythmias remain (which they definitely might).  But, my hope and prayer is that my valve can be repaired and I have no post-op complications.  That I can be a "normal" person again who only goes to the doctor a few times a year!  I am nervous to see if fixing my valve will actually correct most of the PVCs I have or if it is a totally separate issue, but we won't know until later.  I am blessed to have a problem that has the potential to be fixed.  And I know I am a walking, talking miracle-- Owen and I are living examples of the power of prayer and the miracles that Jesus can perform.  Let's face it, I shouldn't even be here typing this while watching my almost 2 year old play on the floor with his brother and sister.  I am as ready as I will ever be for tomorrow!  If you would pray for me tomorrow, I would appreciate it!  Please pray for the hands of my surgical team, a calming presence for my family- especially my husband who is going to have to see me on a ventilator again, a successful valve REPAIR, no post-op complications, and dealing with my inability to pick up my baby for 8 weeks while I heal (it is going to be hard on him and therefore hard on me).  I don't know what the future holds for me, but I do know that this surgery tomorrow will be life changing, and regardless of what happens, I am thankful.
  

Sweet Summertime

     Summer has officially arrived and so has the heat!!!  I love this time of the year-- even with the awful heat.  Nothing beats summer produce-- fresh fruits, veggies, salads, YUM!  And I love watching my sweet babies play outside to their heart's content.  Playing outside when it's cold is not much fun but when its hot outside, you can just turn some sprinklers on!  We have a packed summer planned full of swimming, playing, the beach, etc.  Matt just got over a bout of the tummy bug but I'm still praying this summer is filled with less illness, less doctor visits, and more fun times.  We will see-- we will be praying for a fun, safe, and healthy summer for everyone!

Outdoor Pic'Nickin!

Having fun on Chad's bouncy house

Sprinkler Time!

His face says it all

Loving it!

Future golfer?

Sweet Face

Just like Daddy

Love those freckles!

And I love her little crossbite...

Silly Kiddos

Sweetness.

Ice Cream Cones with Miss Erica!

The look I received after haircut in which the lady received a 90% tip and one person walked out right after they walked in...  

Miss Erica captured this sweet scrunchie face!

Ready for shopping day with the girls!

LAKE DAY!

First jet ski ride of the summer

This is Matt's idea of a day at the lake- swinging in the porch shade!

Seriously growing up way too fast.

Clemson hat time!

Mowing the grass.

Sleeping with my blanket that I had when I was a baby...

Too cool for words.

ALL boy.  Seriously.  100%.

CHEEEESEEEE!

Cole and Caroline

     Cole and Caroline made their arrival into this world 9 weeks early on May 4th!  Cole was 2lbs 15oz and Caroline was 3lbs 3oz.  They were born a mere 35 seconds apart at 11:19am-- that is SUPER rare for twins to be born at almost the same time!  Melissa did great and has thankfully had an easy recovery.  I was able to visit the babies in the NICU when they were a week old and take a ton of pictures which I will share below.  They have hit few, if any, bumps in the road during their NICU stay and are hopefully coming home next week!  Now the real fun begins...  ;)  I am so thankful that they are here and have done so well.  Continued prayers please for their first year of life as they continue to grow stronger, get bigger, and give their mom and dad more grey hairs than they can imagine!

Hives from Hades

**This post contains pictures of Matt's Erythema Multiforme rash.  It looks terrible so I felt it deserved a warning!
   
     Matt's immune system remains subpar even though he is doing better than he had been!  Having him at home with our babysitter has made a huge difference but he is undoubtedly going to get cold viruses every now and then.  After having one that we couldn't get to go away, we ended up taking him to the doctor for some issues with his stools, runny nose, cough, etc.  She did a stool culture and then put him on some antibiotics: cefprozil.  He has had hives in the past from augmentin but thankfully not from anything else.  Well, the upper respiratory infection went away, but on day 9 out of 10 of the antibiotics, I noticed he had hives.  I racked my brain thinking what could be the cause of them- he is already on 2 different daily antihistamines!  I didn't think it would be the antibiotic since he had been on it for almost 10 days.  The hives were small and didn't seem to be bothering him at all so I didn't think anything of it.  I gave him some benadryl that night and continued his antibiotic.  The next day, the hives were still there- just more of them.  At this point, I thought it had to be the antibiotic because nothing else had changed, he hadn't eaten anything new, used any new detergents or lotions, etc.  I gave him some more benadryl and figured they would go away completely on their own in a day or two.  I was wrong.  Matt had something called erythema multiforme (EM).  A classic sign of this is a hive that doesn't move around.  For instance, all of his spots stayed in place instead of fading and changing locations.  And not only did they stay in place but they spread and continued to get worse over time.  I took him to the doctor Tuesday morning who suspected he had EM and told me to keep an eye on him.  He gave us a prescription antihistamine to help Matt sleep since that had been impossible the night before.  It just so happened that we had a visit scheduled with his allergy/immunology doctor this week!  What perfect timing since had we not had that visit already scheduled, I may have taken him to the ER on Wednesday with the way his skin looked.  She said he definitely does not need to take cephalosporins ever again.  Lesson learned: antibiotics can cause allergic reactions at any point in the treatment.  Thankfully Matt did not experience any other symptoms that can accompany EM including fever and joint pain.  I was actually very fortunate in that if you didn't know he had hives under his shirt and hair, you probably couldn't tell by the way he acted because they only really bothered him at night.
     As a side note, Matt has also been diagnosed as Failure to Thrive.  This means he isn't growing like he should be for a child his age.  Since last year, he has dropped 3 growth curve percentiles and his weight isn't budging.  I am not sure of what the plan is from this point forward.  The immunologist did some labwork on him and we will see what speech therapy says next week.  We may end up with a consult from a GI doctor when it's all said and done.  I am very proud of him and how much he has been eating lately, but it doesn't seem to be doing the trick.  Prayers please for my stubborn mystery child.  I love him to pieces!

Sunday night- Just a few spots!

Monday morning

Monday morning

Monday night

Monday night

Tuesday night- Thankfully had taken him to the doctor that morning.  You can see the how the areas stay in one place and only get worse in the next progression of pictures.

Wednesday morning :(

Wednesday night.  Thankfully had an appointment schedule with Dr. Wray in the morning or I would have been tempted to take him to the ER.

Wednesday night

Thursday morning.  First sign of improvement thank goodness!!  This meant no steroids needed and it was on its way out of his system!

Such a trooper at the doctor!  And Emily's iPad doesn't hurt to have either ;)

Dancing Princess

     Emily is extremely shy but give her a giant stage and a room full of people and that little girl will dance her heart away.  If you ask her to do it at home, nope-- she prefers a crowd!  She had a GREAT year this past year at Carolina Dance.  Next year she will be doing Tap and Jazz!  She said she wants to dance to something with a beat to it... I love her and I love watching her dance!  Can't wait for next year!

Dance Friends

Sweet girls- second year together dancing!

Lashes for miles and miles!  This was for rehearsal and pictures!

Proud girl with her flowers and candy!

She did SO good!

Tired Dancing Legs