Saturday, March 5, 2011

Ok, this time I mean it...

I am no longer going to slack off on this blog. Seriously. So here we go...

Made a trip to Home Depot today to buy plantation blinds for 21 windows and doors in our new house. Lee has now installed one and is moving on to number two - this is going to be a long night, friends. But we're so glad to have a weekend to actually start tackling the projects we've known we wanted to do... since we moved in December 3rd, things have been NUTS. We were gone most of December, and then starting in January, we've either traveled or had houseguests almost every weekend. This weekend, we domesticate.

I have also found out about two people - one a good friend, and one a friend of a friend - who are going through some pregnancy scares. It always amazes me how strong people are during these scary times...but then I think back to when we were going through it, and people probably thought the same of us. It's not necessarily strength - or it wasn't for us - but more just that "peace that surpasses understanding." Scary times and whenever I'm introduced to a new story, my heart breaks and I remember all over again. But I'm glad I can give some empathy, hopefully some comfort - especially in looking at how amazing Annalee is doing now. Feisty, smart, precocious three year old... that doesn't have to go back to the cardiologist until NEXT spring. Ahhh... we are more than blessed.

Ok, I will leave you now - we ask for your prayers for our friends (old and new) and for us as we install millions of blinds this evening. ;) I'll be back soon!!

Tuesday, October 5, 2010

Heartbroken But Hopeful

It saddens me to no end to have to type this - but Baby Ewan (whom I mentioned in my previous post) lost his battle and went to be with God. His mother is so incredibly brave in sharing her story and her thoughts and feelings - I became attached to their little family over the course of a few weeks, and my heart just breaks for them. Please keep them in your prayers.

As heartbroken as I am for Ewan, I am cheering and have great hope for Baby Jordan. He is at Egleston now awaiting the first of his three surgeries. He will have the same surgeon as Annalee, and their family has been on my heart and mind so much. Please also keep them in your thoughts and prayers.

I am humbled by these families and their willingness to share their stories and their fears, hopes and hurt. I have been holding Annalee a little tighter lately having become reacquainted with the heart baby world. We are so incredibly lucky to have our miracle baby, and although I've never taken that for granted... I am thankful to be reminded to count our blessings.

Wednesday, September 29, 2010

Sending up prayers...

It took me a while to be able to follow other heart babies' stories... it was just a little too close to home. But soon after Annalee was almost a year old, I began to delve back in - one eye closed - to the world of heart babies and their precious, fearful, hopeful parents who dare to share their stories online.

Part of following these babies' stories is therapeutic - it makes me realize how much we have to be thankful for and how far Annalee has come. Another part of me wants to follow these stories because I almost have to... why should I be done with "that world" just because Annalee is healthy? Things could have gone down a completely different path, and I feel a real need to stay connected to that world. Almost a calling to pray for these tiny babies and their little broken hearts.

Right now I have two special heart babies on my mind - one is Baby Ewan. Little Ewan is barely a week old and has already had surgery, several cath lab visits and is such an inspiration. His parents are scared to death - as you can imagine - but their faith is amazing. The other little one I have on my heart and brain is Baby Jordan. Jordan is due in about six days - there is a lot of fear and anxiety about his heart as well... he has been diagnosed with HLHS (Annalee's original diagnosis), and I know it's such a scary time for his family. Please keep both of these amazingly brave families in your prayers... I have been where they are, and it's a dark and lonely place. Prayers can make all the difference in the world.

I'm going to leave it at that for now... nothing I can say after talking about these little ones seems very important. Just keep them in mind and send good vibes. Heart families are a special breed of people and heart babies are such fighters. I have my little fiery 3 year old heart baby to prove it. :)

Friday, September 24, 2010

New Beginnings...

It has been almost a year and a half since I updated this Blog... sinful :) But I was inspired by two very special heart mommies to start writing again, and here we are.

A lot has changed - we are now in Greenville, South Carolina... Annalee is three years old... we are joining a new church and navigating this new state and home town - it's not where I thought I'd be a year ago, but I'm learning that it can be good.

So here we go... a new beginning brought about by empathy and concern for families who went through what we went through. What a special and confusing cycle...

Wednesday, February 25, 2009

Praying for Emma Kate...

I have been following the progress and journey of little Emma Kate Keisler - she is an HLHS baby whose parents I connected to through little Sammy's mom, Erika.

She had surgery this morning and is stable and doing well - continue to think about this precious little girl, her parents and her sister. She has the same surgeon (super man) that Annalee had - Dr. Paul Kirshbom. He is a miracle worker, and I am hoping EK will be good to go after today.

You can follow Emma Kate's mommy's blog here.

She is a precious little girl...I know they can all use everyone's support.



Friday, February 20, 2009

Two Years Ago Today...

This is probably going to be a little tough for me to write - and I thought about NOT acknowledging this day, but something is making me want to do this. To put it on "paper." To remember and be thankful. So, here goes nothing...

Two years ago today - February 20, 2007 - Lee and I were on our way to see Dr. Edwards in Savannah for my 20-week ultrasound. We had so much going on - Lee was actually planning to leave straight from the appointment to go to Tifton...he had interviewed, gotten and accepted a job (the job he has now), and was starting that very day. He was going to be staying with my parents in Tifton until we sold our house in Savannah and we were able to buy something there...which I found kind of hilarious. I mean, who wants to live with their in-laws?? But he was totally fine with it, and (this really is true) my parents are the I was happy about the arrangement.

Anyway, our appointment was at 8:50 that Tuesday morning - it was cold, foggy, and just kind of miserable outside. We took separate cars so that Lee could get on the road after the appointment and I could drive on to work. I was nervous, but that was to be expected. I was mostly just excited - and I was POSITIVE that we were going to find out that we were having a little boy. I just knew it. And Lee was just as positive that we were having a little girl... so we had a little friendly competition going on.

We made our way into the ultrasound room with our tech, Angie. She asked us if we wanted to know the sex of the baby - a resounding "YES!" to that question. Then she got me all settled, gell'd me up and got to work. We found out within seconds that we were having a little girl (Lee won), and she was showing us the head, arms, feet, toes, etc. etc. Then, Angie got really quiet. Too quiet. I immediately panicked and asked what was going on. That was the moment that changed our lives forever.

"Guys, I hate to tell you this...but something's not right with her heart."

To be honest, I don't remember too much after that. It's extremely blurry and comes in bits and pieces. I completely lost it - I do remember that - and Angie mentioned some things to Lee (I did catch something about "left side not developing" - that piece of information stuck), and then she shuffled us out the building and into the back door of my ob's office. This, I figured out later, was to keep us from upsetting the other patients. I get that - I do - no one who is pregnant wants to see another pregnant woman bawling about something she just saw on an ultrasound. You're talking contagious panic - coupled with hormones; that can't happen at an ob/gyn's office.

So, there we were, in tears, sitting in one of Dr. Edwards' patient rooms listening to him tell us that he "...wishes he could tell us it would be ok. blah blah blah blah..." It was excruciating. And I wanted to know what to do next. He called over to the Savannah Perinatologists' office to try to get us an appointment. No dice. He told us it might be a few days before they could see us. A few days?! How are you supposed to deal with that kind of information - which basically is NO information - for a few days? But, we had no choice.

Lee called his new boss and briefly explained the situation. I got into my car - called my mother first. One of the hardest phrases I've ever uttered was, "Mama, there's something wrong with her heart..." Then I fell apart. I was just so helpless. I called my best friend, Beth, next - said the same thing to her...fell apart again.

Lee and I both drove to our house in Savannah - we were panicked. I have never truly understood the meaning of having someone pull the rug out from under you until that moment. I was a wreck. I didn't have the strength to call work, so I sent an email. I just couldn't bear talking to them, even though many of them were close friends. Lee and I talked - trying to piece together what we could remember from the nightmare at Dr. Edwards' office...I thought I remembered the word "syndrome" - Lee was devastated at that because it meant the problem was probably not isolated. His devastation threw me into a deeper was a truly terrible few hours.

We called Dr. Edwards again - trying to clarify if we indeed heard "syndrome," trying to get more information, trying - in vain - to get some peace of mind. All we got was more confusion - and Dr. Edwards told me that whatever I did, do NOT get on the Internet and start searching for things. He said I would only make myself crazy. Yeah, right. Like I didn't jump right into that brier patch.

Our appointment with the perinatologist was not until about 3 days later - we could not just sit there. It was truly torture. So I decided that we should both go to Tifton - Lee could go ahead and start work the next day, and we could still be together, and I could get a little added support from my parents. It was a wonderful decision. I have never needed family so much in my life.

The next few days were pure, unadulterated Hell. The "why us" - the "what did I do wrong?" - the "what could I have done differently?"...the questions you ask yourself over and over and over that can never truly be answered.

Heading back to Savannah was tough. It was like going back to the belly of the beast and asking for more. My mom came back with us so that she could stay with me in Savannah when Lee had to go back to Tifton. The doctor's appointment was more stressful than anything I could have ever imagined - so many people told us (before that appointment and afterward) about similar experiences that just "fixed themselves" - it was so tempting to hope for an outcome like that...but so dangerous to lull yourself into that false place.

Anyway, the fetal echo cardiogram did show underdevelopment on the left side of the heart. When we went in to talk to the doctor about the "diagnosis," he brought up Hypoplastic Left Heart Syndrome. I already knew. I had been on the computer constantly - unbeknownst to Lee - digging into every heart defect website I could find. That was the "syndrome" that I found that dealt with the left side of the heart...and it was, apparently, the most serious heart defect that an infant can have. It requires 3 surgeries - all open heart and all extremely complicated and dangerous. I even knew the year of the first successful three surgeries (1978)...I knew more than I should have known. And more than I wanted to know.

I spent a lot of time by myself those first few months - Lee was in Tifton working, and even though my parents tried to share time with me in Savannah, that was not an easy arrangement. I am not sure how I got through...I found strength I didn't know I had. I found something called "Heart Mommies" online, and I read voraciously about their plights and their ups and downs. I educated myself - prepared myself for the worst - prayed, cried, watched American Idol, went to work, ate, cried some was a painful and frightening time.

We officially moved to Tifton on April 2nd, 2007. I had somewhat come to peace with our situation at that point...not totally, but I was trying. We moved into our new house, we ordered our crib and baby furniture; we did things that were very, very hard to do without knowing what lay ahead. But we did it - and that point in time made us a stronger couple (and family). On April 25, 2007, Lee, myself and my parents headed up to Atlanta for our first appointment with the doctors at Sibley Heart Center with the Children's Healthcare of Atlanta.

That was a very long day - we had several appointments. Met with the pediatric cardiologist, Dr. Nanci Stauffer, met with our perinatologist at Northside Hospital (where I gave birth), and my brand new OB, Dr. Richard Robbins.

To bring this chapter of our very long story to an end, we found out that day that our diagnosis was no longer had been officially changed to Coarctation of the Aorta. You would have thought someone gave us a winning Lotto ticket. By this point, I had read about every CHD there was, and I knew the significant difference between HLHS and CoA - and it was huge. There would still be surgery - that was almost guaranteed - but our little one was probably going to be ok.

Man, I could go on forever - and this is the first time I've actually written about all of this...wasn't sure how it would go or how much I had forgotten. Not much, apparently. How could I, really? Anyway, we are a very, very lucky family - with an amazing, beautiful, smart, healthy little girl. I will follow this entry up with her birth and surgery when the spirit moves me, but for now I will look back on this day - exactly two years ago - and be thankful for what I have and what we have been through.


Wednesday, February 4, 2009


It's a chilly morning here in South Georgia...and that is rare. It must be why I really like cold weather so much - for the simple fact that we don't get much!! It is supposed to be 19 degrees tonight - and that, my friends, is frigid. And I love it.

We had a good weekend - Friday night we left Annalee with my parents and hung out with friends at their house...I vowed that we would be home by 11, but we somehow pushed that until 1am. It was well worth it, though. They have two little ones, and I think the older we get, and the more responsibility we all have, the more we enjoy just having some wine and talking with other adults. It was great fun. And it was cold that night, too...heaven.

Saturday night was the LOLA event - Love of the Love Affair. Now the Love Affair is an arts festival that's held the first weekend of May in Tifton - has been going on as long as I remember. After moving back to Tifton, I was recruited to be on the Arts Council which is in charge of the dear old festival. Let me tell you, all of those years I attended it...I never, ever realized what kind of work goes into putting it on. It's incredible. So Saturday night we had a dinner and silent auction to help raise money - as everyone knows, the economy right now is not condusive to fundraising, but we did ok. And the event was lots of fun for everyone involved. It's just amazing to me that I never realized what a big production the Love Affair was...I will never take any sort of hometown event for granted ever again!

Beth is coming to visit this weekend - I am beyond excited. I haven't seen her in months which is rare for us...I am in desperate need of some good Beth Time - it's just what the doctor ordered.

Alright, back to work...and to secretly enjoying being chilly...