Hope

Back in the day, like when I was younger and even up until I had Kaleb, I didn't mind going to see the Doctor. Over the past three years, that "like" has turned into an absolute hate. I hate 99.9% Doctors with a passion, I hate hospitals, and the sterile hospital buildings and offices. Although, I am grateful and can appreciate what Doctors are capable of doing for those in need, as well as, for the sterile and clean environments that they work in, I still HATE EVERYTHING ABOUT THEM!!! It is amazing how life's trials and twists and turns can change our opinions, our mindset, our sensitivity to things and make us tough and callused. I feel this way. Even though I feel that I am still an incredibly sensitive person and strive to recognize and tend to the feelings of others and be there for others, I also feel so hard and callused at the same time. I don't like feeling like this and I don't know how to change it. In some ways, I feel like I have lost "hope" even though I still continue to have it.

Today, I took Karmindy to her 3-year well check up. Before Karmindy was born, I celebrated every well check up with Kaleb. I loved seeing from month to month and year to year the progress my little boy was making. When Karmindy came along, it wasn't that I didn't celebrate but things took on a whole new meaning. I was happy and celebrated but felt hollow and empty inside too. Each visit I try to find the good. Today's visit I found out Karmindy has perfect 20/20 vision. Our Doctors nurse was happy to report that she has never in all her years of working been able to record that a 3 year old has perfect vision. Yay, for Karmindy!! However, even though I celebrate that wonderful and miraculous thing like vision, I dread to talk about my daughters heart condition. The heart is also a wonderful and miraculous thing. After Karmindy's Angioplasty in June, my heart has been so, so heavy because the condition that Karmindy now has. It is rare. The Doctors haven't seen it before. No one has really seen an aorta fold the way that Karmindy's has been doing above a coarc surgery site.  Before the surgery, I could do research and scour the internet to find outcomes of coarc patients but now I cannot scour the internet to find "Hope" for what Karmindy has. How can I have "Hope" if I cannot find percentages or facts that will tell me that my daughter will be ok or help give my mind a little rest? I know that I need to have  more Faith but how can I have more, when after watching my daughter go through this for three years,? My bucket of faith is wavering on empty. I don't' feel like I have any more faith or strength to give. It is hard to explain to friends and family and even though they offer support and love, and I appreciate all they do, it is hard because they don't quite feel the anguish I feel. There is nothing more painful then watching your child suffer or go through something that could potentially be life threatening and feeling like you have absolutely NO POWER to help them. I want to make this go away for Karmindy. I want to have my little girl with me always... 

Why do we have to continue to go through this hard stuff. It seems like it never ends. What am I supposed to be learning from this? Maybe the faster I learn the faster it would go away?

Today,I had a long talk with my wonderful pediatrition and we cried together over Karmindy's latest surgery and prognosis. I have the most remarkable Doctor for my kids. She is a mother as well, and knows where I am coming from. It helps to have a Dr. who has knowledge and empathy. These are qualities that are almost never found these days among health care providers.

I feel blessed to Have Dr. Val.

After talking about "Heart Patches" and stints among other fun Heart Stuff  with my dear and patient Doctor and me asking for "hope" on how Karmindy might weather over the next few years of life, I left feeling so helpless. I sobbed all the way home. 

I have tried to be strong over the past 3 years and have celebrated those wonderful milestones and have continually been given some hope from doctors. Now our last options with Karmindy are waiting and seeing how her body will fair. If  it does not fair well, then we will Have open heart surgery in store for our Daughters Future. Open Heart is not something I feel like I can mentally and emotionally handle...again. We have already gone through this. This condition that Karmindy has, will  it ever be fixed? I feel as if its not an if anymore but a when. It feels like time is ticking...and I am not for sure what to expect. I found out today that a patched aorta isn't an end all fix but one that may need to be patched again and again. 

If they can't fix my daughters heart, who is going to fix or patch mine if she doesn't make it. Why do trials have to be so hard and almost suffocating?

All I want is to Have Hope that all will be ok for my special little princess, my little girl. 

Karmindy's Angioplasty

This past Friday, Karmindy was scheduled to have an angioplasty on her narrowing aorta. We arrived at Primary Children's Hospital around 1:30 pm to check in. After weighing her in and checking her vitals, we headed back into a room so a iv team could come in and place her iv for the surgery. After her iv was placed we got her dressed into her hospital clothes and were sent into a waiting room. The cath lab was running behind and so we had to wait until 4 pm before they could preform the surgery. It was really hard on us, as well as, Karmindy who hadn't eaten anything since the day before. She was a trooper for not having eaten anything and was so brave.

At 4 pm. they came and got us and took us back into the cath lab to preform her surgery. The reason we scheduled this surgery was to help balloon open what they thought was a narrowing aorta. The Surgery went smoothly and only took 1 hour. They had scheduled it for 3 just in case. After the surgery we were paged to go back and see Karmindy. Before we could see her though, we met with her Surgeon, Dr. Collin Cowley for her prognosis and update. The Surgeon learned that her aorta and the site that they fixed when she was a baby was not narrowing but that a piece of tissue is "kinking" the area and restricting the blood flow which is located above the original surgery site. (Think of a hose that is kinked and the hose in between is restricting the flow. The Dr. also compared it to an inverted belly button. You can push it in but it will pop right out.)  This is what the tissue is doing. They can balloon it and stretch it but it will go back to its original form.The Surgeon used 2 different balloons #8 and #10 and neither one would even balloon open the area. The Surgeon said The area would balloon out with each balloon but it would then fall back on top of each other. The surgery was an EPIC FAIL unless you consider finding out that the original surgery site was fine and it was actually additional tissue that was blocking the blood flow. The Surgeon told us that putting in a stent would not be an option like we had originally thought and so we would have to prepare to have open heart surgery again to fix this condition. Putting a stent in this place would potentially cause blood clots that would travel to Karmindy's brain and cause strokes. We were heart broken when he told us this. It is so hard to go through this time after time. It is also extremely hard on our little girl. For the time being we and the Surgeons decided that we will continue to monitor her progress and then if we have to do open heart surgery we will. The Surgeons were confident though that if we do open heart that she will potentially be fine for the rest of her life. They said we had that on our side. The other option is to monitor her blood pressure and hope this extra tissue will grow with her. We would prefer this option and hope and pray that this is the way that it grows.

This is so heartbreaking to go through and is still one of the hardest things that Mark, myself and Karmindy face. We know that we are continually sent miracles and marvel at Karmindy's determination and strength through each of these surgeries and procedures. Karmindy continues to defy the odds and press through this trial. Karmindy handles obstacle with grace. During this particular visit, she had several nurses in tears (along with her mom) because after they would continue to poke and prod, she would tell them thank you time after time. She seems  to have somewhat of an understanding of what is taking place and as her mom and those Dr.s, Surgeons and nurses that continue to work on her are blown away by her strength and strong spirit. We only spent the night on the recovery floor and she was allowed to go home early the next morning at 9am.

Karmindy getting ready to go home. She loved being able to watch TV on her very own TV and order anything she wanted to eat while she was recovering. She loved having all the chocolate milk, chicken nuggets, french fries and teddy grahams she could eat.

 I hope that Karmindy will always remember and know that she has great strength and has a great spirit to go through this very hard trial. She definitely has gone through more than most people go through in an entire lifetime. I am so proud to be her mother and she is a constant example to me, her dad, brother and those around her. We Love you Sweet Girl.