Where to begin...

So much has happened this past week that I'm almost at a loss for where to begin! I'm tempted to jump right to our exciting Friday, but I guess I'll start at the beginning.

Monday was a very hard day. After 14 weeks at home with Miss Charley, it was time for me to go back to work. For those of you that don't know, right before my maternity leave started I accepted a new job with South Dakota State University. I will be considered a 50/50 employee and will be based out of the Avera Cancer Institute. Part of my time will be as a pharmacist in the clinic setting and part will be precepting pharmacy students on their 4th year clinical rotations and giving oncology related lectures to 3rd year students. Its a brand new position, so I'm excited to "build" it into a functioning practice site. A part of me was excited...ready to start my new job and to get back to being around adults, I was super sad to have to send Charley to daycare. Not only sad, but quite anxious as well. Monday and Tuesday were probably the hardest, but like everyone had told me, it got easier day by day. I'm proud to say that I only cried on Monday...haha...I was pretty impressed with myself! Everyone loves her there and we know that she is getting wonderful care.

Starting my new job, a majority of my first week was orientation. Unfortunately this meant daily trips to Brookings (about an hour away) and by Friday I was ready to not have to make the drive. Also, Friday marked a big day in our house. Charley was scheduled for a follow-up appointment with Dr. Sami and to have an echo. We haven't had an echo since we brought her home 2 months ago and as the day approached I got more and more anxious. We know that sooner or later she is going to grow out of her current shunt and have to go back for more surgery, but the thought of it ties my stomach in knots.

Dr. Sami's office has always been a very emotional place for me. The first time we went for a fetal echo I was terrified of what they were going to tell me about our little girls heart. It was only a day after we found out that something might be wrong, so we were still operating in shock mode. Since that first visit, every time we've had an echo I've left the office in tears. I wanted them to see a perfect beating heart. I wanted everything to be fixed and that was never the case. I cried again on Friday afternoon...but my tears were different this time. They were happy tears.

Before Charley had her first surgery, Matt and I had a long discussion with her surgeon where we were given a decision to make--

1. We could opt for the traditional surgical route where they would, over the course of a few years, bypass the whole right side of her heart.

2. We could take a little more "upfront risk" with a procedure to try and stimulate the right side of her heart to grow. This is a new school of thought in the management of these heart kiddos and is definitely accompanied with some risks. I think that both of us knew that we wanted to go with #2, after all, a whole heart is better than a 1/2 of one, but it was still an agonizing decision to make. No one likes to hear "increased, upfront risk" or that it could lower the odds of us getting to bring her home with us. In the end we chose this route and Charley tolerated surgery better than we ever could have expected!

This brings us back to Friday...

Charley's exam was pretty uneventful. She looks healthy, her blood pressure was right on target, she finally made it onto the growth chart in the 3rd percentile for weight and her O2 sats are still holding steady in the mid to upper 80's. Then it was echo time. This process takes a good hour to get all of the views of the heart that they need, most of which Charley sleeps through. I usually spend the first 10 minutes trying to figure out what we are seeing on the monitor before I just give up and wait for the explanation afterwards! Here is what we heard...

1. There appears to some growth of her right ventricle. Its still markedly smaller than the left side, but we knew that this would be a very gradual process if we were to even grow at all. We were thrilled to hear this. THRILLED.

2. During her 2nd surgery they put a patch where her pulmonary valve is supposed to be. This would let blood flow passively in and out of the right ventricle, encouraging it to stretch. On Friday's echo Dr. Sami saw that the ventricle was beginning to actively pump a small amount of blood. This is a good thing as it shows that she might not be 100% dependent on her shunt. Its still very little blood flow, but its progress and a step in the right direction.

Dr. Sami said that he didn't want to get ahead of himself, but that what he saw Friday afternoon was encouraging. He is going to share our echo results with our surgeon for feedback on how he would like to proceed. For now the plan is to hold course. We will continue to monitor her O2 sats and will repeat an echo in 2 months. Its hard not to get overly excited about this news as we know that there is still a long road ahead. For now we're celebrating the good news and praying that God continues to strengthen her heart day by day. WHAT A GREAT WAY TO START THE WEEKEND.

As for the rest of the weekend, Charley's "Aunt" Jessy came to visit! While she was here we had an official 10 pound party for Charley complete with gifts and cupcakes. I think that between the two of us we probably gained about 10 pounds in honor of our little peanut finally hitting the same mark!

A special gift from Aunt Jessy

Hehe...her new shoes are too adorable!

What an exhausting weekend!

Every Heart Has a Story

For those of you who know us or have followed our story from the beginning, this post may be "old news." However, there is another blog, When Life Hands You a Broken Heart, that is taking steps to connect heart families and give them the opportunity to share their stories. Through our heart journey thus far I have found it extremely helpful to find others who have exeperienced similar heartache, fear, successes, etc. I hope that by re-telling our story for this site, I might become a source of information for others...maybe become a friend, maybe be a virtual shoulder to cry on, maybe just a sounding board for questions. I guess I really just want to be a story of hope for others who, like myself, are simply learning as we wade through the scary heart journey with our children.

I will never forget the day that my husband Matt first told me "I think we should have a baby." He was on his way back to Sioux Falls after spending the weekend with some of his friends and their families back in Nebraska. I had been not so discretely planting the "baby bug" in his ear for some time, and I think that seeing his friends with their children was just the trick! I was in my car in the Hy-Vee parking lot and being the total sap that I am, my eyes immediately filled up with tears. To say that I was excited is an understatement! Just two short months later I was pregnant.

The first half of my pregnancy was pretty uneventful. I never had to deal with morning sickness, and other than feeling tired all of the time, I was my normal self. On January 19, 2010, Matt and I went to my 20 week ultrasound hoping to find out the sex of our little one and come away with some good pictures. Little did we know that our lives would totally change that day. Shortly after we found that we were having a little girl, we also learned that there was potentially something wrong with her heart. Our fears were confirmed the following day after a fetal echo showed that our innocent little lady has pulmonary atresia and hypoplastic right heart syndrome. She would need surgery shortly after birth in order to survive. Matt and I floated through the next few days in a total cloud. We camped out in the in the living room, forced ourselves to eat and avoided phone calls from people who we knew were just concerned about us. Those were the hardest days of my life, but in hindsight, I'm glad that we found out that day. It gave us the opportunity to "deal" and to prepare ourselves (as much as possible) for what we were up against. To this day I read stories about people who's children go undiagnosed until after birth-- I can't imagine having to deal with all of those emotions on the spot like that.

The second half of my pregnancy was emotionally draining at times. We tried to keep things as normal as possible...getting the nursery ready...having my baby shower...but there was always a looming fear of the unknown. I would get gifts but couldn't bring myself to take the tags off, just in case. I was determined to stay positive, but couldn't help but wonder how I would survive if I didn't get to bring a baby home with me. Never did I think that something like this could happen to ME. What had I done wrong? It felt unfair and at times I felt cheated, but mostly I was scared for our little girl and her future.

On May 14, 2010 (3 weeks early), Charlotte Delene Ritchie was delivered by c-section. She came out pink and screaming, nothing like the blue baby that we were anticipating. We spent the first month of her life at Children's Hospital in Omaha. During that time, Charlotte had 2 heart caths and 2 open heart surgeries. They placed a BT shunt, tied off many coronary fistulas or "sinusoids" and also put a patch in to open up the place that her pulmonary valve was supposed to be. Charlotte amazed us every single day. These kiddos are so small and vulnerable and dependent on us for care, but at the same time they are so amazingly strong.

So that brings us to the here and now. Charlotte is now 3 months old and has been home since June 10th. We're taking life one day at a time and enjoying our time at home before she needs her next surgery. Sure, we've had our battles along the way, but for the most part you wouldn't even guess there was anything wrong with her. She is growing and getting stronger day by day and continues to amaze us. As for Matt and I, yes, our routine is a little more labor intensive than parents with healthy newborns, but medications, O2 monitoring and endless appointments have become our "normal" and I can't imagine it any differently.

Matt gave me a card through this whole ordeal and I repeat a line from it to myself almost daily....

"I would do it all again, and I wouldn't change a thing."

Sure, I would give anything for Charlotte to have a healthy heart, but I can't change that. What I can do is love her and learn from her. Through all of this, she has made Matt and me better people. She has taught us to appreciate every minute of every day, even the ones you wish you could start over. She has strengthened our relationships with God, our families and our friends. Not only that, but she opened our eyes to the world of congenital heart defects that we otherwise would have been blind to. Its sad really...the fact that I didn't know that any of this existed until it was our reality...but its true.

Charlotte is a fighter. A CHD warrior. The bravest and strongest little girl we have ever known. We are so blessed to have her in our lives.

"I would do it all again, and I wouldn't change a thing."

Look at me!

I don't know why we didn't think of this sooner! Little Charley LOVES her new view of the world and mommy LOVES having her arms free. She was all smiles the whole time.

Where has time gone?

My precious little Charlotte,

Ugh, today is a very hard day for your mommy as we have officially come to the end of my maternity leave. After getting to spend the past 14 weeks with you, I sadly have to go back to work on Monday morning. I knew that it would be hard, but I don't think that I ever realized just how hard! It makes me wonder how your dad has been doing it this whole time!

Together we spent the first month of your life at Children's Hospital in Omaha. The hospital was our life. It was all that you had been given the opportunity to know. I sat by your side every day while you were there. When I couldn't hold you, I made due with sitting and staring at you for hours on end. Even when I could hold you, I found myself staring, memorizing ever feature and detail of your face, hands, little feet...I was totally taken aback by how beautiful you were and by the strength that you showed on a daily basis. I would come at 9 AM for rounds and leave around 10 PM after reading you bedtime stories and saying our prayers. Once I got back to Grandma Debbie's house at night, I could hardly wait until I could see you again in the morning!

After 4 long weeks, I got to take you home! Daddy was so excited to have us all under one roof. At home we could finally have a "normal" life. I won't lie, it was exhausting, but we were home. Home where we could hold you whenever we wanted. Home where we could lay with you on the couch and snuggle. Home here we could be a family.

So now its been 10 weeks since we came home. I look back and am so proud and amazed at how far you have come. You have moved beyond the "eat, sleep and poop" phase, and now I get to see that little personality of yours emerging day by day. I think thats what makes it so hard. You are becoming so expressive and observant; changing every single day...and now I have to go back to work!

I can't imagine how hard it is going to be dropping you off at daycare on Monday morning (or that I'll be very productive at work), but I know that you will be in good hands. Silly me, I'm already really excited to pick you up at the end of the day and see that perfect little grin of yours!

I love you Charley Bear. With all my heart.

Love,

Mommy

Tummy Troubles: A Follow-Up

Preliminary report from the barium enema shows that all is well in Miss Charlotte's intestines. They were basically looking for any masses, perforations, etc. that could be contributing to her bloody stools. She definitely wasn't thrilled with the whole process and seems to have a little bit of an upset tummy/lack of appetite, but I guess I would probably feel the same! Hopefully after a good nap she will be back to her happy, hungry self.

Today marks 1 1/2 days of our strictly EleCare diet. No blood thus far so we're hoping that we have the answer. We will follow-up with Dr. Nanton next Thursday to make sure that everything is going as it should be.

Tummy Troubles

A few weeks back, we started to introduce formula into Charlotte's diet, knowing that my freezer stock of breastmilk would only last so long. We started with a bottle a day, just to give her a taste for what her future held! Well, I started to notice that after her formula bottles, she was really squirmy and it was really hard to feed her for the rest of the day. Remember that terrible day we had on her 2 month birthday??? Thats about the time that we started formula. Now, we haven't had more of those days, but its been obvious that she's uncomfortable.

Well, last week I started to notice some small "specks" of blood in her diapers. We're talking specks--but they were there and that was enough to get me a little anxious, especially considering the fact that she is on both a blood thinner and aspirin. I called Dr. Sami's office and he suggested that we make an appointment with Dr. Nanton, a pediatric gastroenterologist (just what we needed, another doctor!) Long story short, he thinks that Charlotte has a milk/soy protein intolerance, despite the fact that she had been tolerating breastmilk. She's now drinking a special formula called Elecare (in addition to breastmilk) that is already broken down into amino acids so that it is more tolerable for her.

Fast forward to today....

We've been doing breastmilk + Elecare since Monday afternoon and all of a sudden there is blood in her first 4 diapers of the day. Not just "specks," but noticeable blood. They had told me that the blood could hang around for a week or so, but that it should improve. This was definitely NOT an improvement! I called Dr. Nanton's office and their suggestion is to cut out all breastmilk to see if that helps. We're also going in for a barium enema tomorrow morning at 8 just to make sure that there isn't anything going on in that belly of hers. Hopefully a diet of straight Elecare will be the answer, but we agree that its best to rule out any possibilities!

Big prayers our direction...

Heart Buddy

I was planning on typing an update on another busy weekend...but the past two days a little baby that I know has decided that napping is for the birds. I finally got her to fall asleep in my arms so now I'm typing this one handed.

Our update will have to come later, but I did want to write quick with a little prayer request! Charlotte's little heart buddy Talia is going in for surgery Wednesday morning. Talia is just a little over a year older than Charlotte and has a very similar heart condition. She will be at Children's tomorrow morning for surgery with Dr. Hammel, the same surgeon that Charlotte sees. Please keep little Miss Talia and her parents in your thoughts and prayers tomorrow. Sounds like its going to be a long day :(

Heart hugs and prayers coming your way, Talia! Charlotte can't wait to get to see you again!