Cardiology Update

Anna Grace had a scheduled cardiology appointment this morning. Thank you all for praying for her... and for me.

Anna Grace didn't really want to cooperate during her echo today. It is impossible to reason with an 11 month old and despite my best efforts to distract and entertain her she insisted on crying pretty violently during the whole thing. She just has so much anxiety around doctors. I can certainly understand it and it is heartbreaking to know she is so scared and there is not really anything I can do to help her or soothe her. Sigh.... Once the echo was done she calmed right down again and started playing with the bag of toys I brought. She also did the same thing when the nurse tried to check her O2 sats.... cry... cry, cry AND during her weight check.... cry, cry, cry AND during her blood pressure check.... cry, cry, cry. The doctor WANTED to get a blood pressure in the right arm and right leg. We were only successful in obtaining a blood presure from her right leg and as you can imagine it was through the roof with all her screaming and turning blue. Sigh.... My little girl does NOT like the doctor! I don't think we have ever been able to get an accurate blood pressure reading on Anna Grace - which is really kind of scary because we don't really know what it is.

Anyway... after the doctor reviewed the results of the echo he determined that things looked the same as they did last time. Which in my opinion is a good thing. She still has the slight mitral valve leak so he is continuing the keep her on Lasix because of that. He is hoping that she will cooperate a little better during her next echo so he can get a really good look, if not then we'll have to talk about a sedated echo. I really, really don't want to have to do that if we can avoid it.

At the end of our appointment I was asking about her Patent Foreman Ovale which the doctor said that he would not call it that - he said that hole is bigger than what would be determined Patent Foreman Ovale and that he would call it an Atrial Septal Defect. As a heart mom, I am learning it is important to ALWAYS ask questions about your heart baby's diagnosis. Things can change and if you don't ask then your doctor might assume that you know. So.... I was thinking that hole in her atrium was Patent Foreman Ovale, but it is an Atrial Septal Defect instead. Whew... it is a lot to keep up with.

I also want to stop a minute here and say that I really, really, really like Anna Grace's cardiologist. Despite all the crying and screaming he is always playful and understanding with her. Even though it is sometimes difficult to have a conversation with the doctor with Anna Grace crying he never tries to rush through (as tempting as I'm sure it might be). As a matter of fact, it is usually me trying to rush through to just get her out the door to calm her down (which explains my Pantent Foreman Ovale / Atrial Septal Defect confusion)! He also is a doctor that eers on the side of caution which I really like about him. Doctors.... just like regular people have different personalities and working styles and Dr. R is just right for us and I am thankful for him.

We also briefly discussed her next surgery, the Fontan. That surgery will occur - ideally - when she is 33 pounds. Anna Grace weighed 21 pounds at today's appointment so maybe another year or 18 months before that next surgery I would think.

I also shared with him about the Heart Mom's Night Out I was planning and he was really excited about that and even had a few people that he knew that might be interested in attending that I didn't know of. I told him that I would get him a flyer of info about it that he could share with anyone he thought would like to come.

So, all in all - other than Anna Grace being so upset during the entire morning - I thought the appointment went well. We don't go back again unil March. That's 3 months from now. That is the longest we have ever been between cardiology visits and it is exciting and a little scary all at the same time. What a jounrey.....

Offical diagnosis: Hypolplastic Right Heart Syndrome: Tricuspid Atresia, Transposition of the Great Arteries, Aortic CoArctation, Artial Septal Defect, Ventricular Septal Defect, Pulmonary Stenosis.

Walking the Log

Photo taken back this summer at Hatcher Gardens.

The Butterflys....

The butterflys are starting to come - they start fluttering in my stomach usually a few days before a cardiology appointment. We have a cardiology appointment coming up on Tuesday. Now, I don't have any specific reason to think that anything will be unusal about her echo - but with congenital heart defects sometimes looks can be deceiving. For example - most people who see Anna Grace say to me "she looks so healthy" - they really have no idea how fragile she really is. They have no idea how a cardiology appointment can turn your world upside down in an instant. How one day your planning on moving into your new house in a few weeks and the next instant you can be throwing things in a suitcase and heading to MUSC for a heart cath. It really is our reality.

With that being said - after I have all these thoughts run through my head I have to stop.... pray and give my worries to the Lord. It is a constant battle sometimes. You would think after doing this for a year now it would have gotten eaier, and maybe it will someday, but it hasn't gotten easier yet. At least not for me. Sometimes it's several times a day I have to do this: worry, stop, pray, lay it down. Seriously.

It doesn't make sense but as hard as it is to live in a state of worry it can also be HARD to lay those worries where they need to be - at the foot of the CROSS and then place my TRUST in the Lord. No matter the outcome of Anna Grace's doctor appointment the Lord will take care of us.

Of course I am praying that Anna Grace's heart will look great - that her echo will show that her heart is exactly as it should be in this stage of our journey. I really don't have any reason to believe that it won't look great. Please be praying for her on Tuseday and I will keep you posted on the results.

This heart journey is ongoing and I am still learning how to be a Heart Mom.

I have a friend...

I have a friend named Michelle. I am so thankful for her. She is not a heart mom, however she is a mom and we have been friends for about 5 years or so. She is such a blessing to me - she was a blessing before I became a heart mom, but even more since I have become a heart mom. She has walked this journey with me. I can see why many heart moms blog about their friendships falling away once they became heart moms. I am sure there are lots of reasons why that happens. Specifically for me, since I have become a heart mom, my relationship with Michelle has become very one sided. It's always me calling her needing to talk, vent, cry, etc and her listening - offering advice and comfort. Any time of the day or night. It used to not be this way - I actually used to have conversations with her and ask about her and her family (like a "normal" friendship) - but for the last year most of our conversations have focused on me - or Anna Grace or some medical decision or procedure and I have just needed to talk... and talk. Again, I can totally see why so many friendships and family relationships fall apart during the heart journey. I hope it will not always be this way.... since things have started to settle for us a little bit I am hoping to find my way back to "normaL" in this area of my life. It is hard fnding my way back to "normal" - in lots of areas, this included. But of course, I am changed now by this journey. So perhaps "normal" is hard to find because my "new normal" won't look like my "old normal". Does that make any sense? Nevertheless, I have a friend.... her name is Michelle.... and I am thankful for her.

Heart Moms Night Out

So throughout this last year I have met some pretty amazing Heart Moms who live here in the Upstate. I am going to plan a Heart Moms Night Out one evening in January for us all to get toegether and just meet face to face (since many of us became friends through our BLOGS). For those of you that I have a phone number for I will call with the details, but if I don't have your number and you want to come please leave me a comment here on the BLOG and I will get in touch with you about the details. Can't Wait! Also... I'm thinking at some point of organizing a screening of "Hearts of Hope The Movie". Maybe that can be one of our Heart moms Night Out activities???? Let me know if you're interested.

Doctors Appointments and Hearts of Hope

Sorry for the lack of blogging recently. We are fine, just busy with trying to get the house finshed up.... yes, we are still working on renovating the house we bought back in July. We are hoping to be moved in by Christmas or at least the first of the year. I'll keep you posted. It has been quite the project!

We also have some doctors appointment coming up. Synagis, round two, for Anna Grace on Thursday and a cardiology appointment for Anna Grace on Tuesday next week. Please be praying with us about her upcoming cardiology appointment. It has been two months since our last appointment and that one wasn't great... not bad necessarily.... but not glowing either. I am trying not to be anxious about it, but if I have to be honest my stomach is a little knotted up. I will be sure to post the results here next week.

I also wanted to share that I stumbeled across a movie called "Hearts of Hope the Movie". I haven't watched it yet, but you can bet that in my spare time (when I get some) I am going to check it out. I hope you do too. Click here to see the trailer.

Amazing Video

Please watch this amazing video and PASS IT ON to anyone and everyone you know. Please help play a part in spreading awareness about congential heart defects.

Click here to watch.

Thank you.