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Our HLHS Journey

At 20 weeks gestation, our daughter was diagnosed with a complex congenital heart defect, Hypoplastic Left Heart Syndrome, in which the left side of the heart is severely[...] read more

Latest journal entry

Posted 2015-09-10T00:48:59Z

July 6th, 2015

-21 weeks-

I wasn't sure how to prepare myself for our first cardiologist appointment. The days before I was doing my "research" on this new doctor that partnered with the well known cardiologist who had just recently retired. Everything I had found online about this "new" doctor were all positive. Of course when I met him, I understood why.

I walked into his office that day not knowing what to expect. Would they mumble as they observed my daughter's heart on the screen? Would they even talk at all? Would they just tell me, "We will call you in a week with results?"

Needless to say, I was completely blown everyone's outstanding compassion. They were so great with Mason too. We were placed in a room while we waited for the doctor. He came in a couple minutes later and acknowledged Mason right away and my purse that was full of cars for him to stay busy during the appointment. He introduced himself and explained what they were going to be looking for that day. We also went through the paperwork I had filled out during my check-in of our family history. We got up and went to the room next door to start the echocardiogram and the nurse also started a movie for Mason.

I laid there for well over an hour while they looked at her heart and blood flow. I caught little things they were discussing here and there. Most of it sounded like a foreign language to me. There was still a part of me that was in disbelief that this was even happening. It all felt like a really bad dream. There were so many things running through my mind as I laid there for over an hour while they examined her heart on the screen.

When the ultrasound was over, we met the doctor back in the room we started in to talk about what he saw. I could tell by the look on his face that the results were something I wasn't going to want to hear. But, he was honest with me anyway. He told me that although he was a Pediatric Cardiologist, our situation needed further examination by a better equipped facility. He also told me that I would more than likely be relocating and to prepare myself for that. He contacted Dr. Lisa Howley at The Children's Hospital in Denver to send her the scans from my appointment that day.

As I was getting ready to leave the room, Dr. Lashus told me he would get in touch with me as soon as he heard back from Dr. Howley in Denver. He assured me that she was usually very prompt. I heard back from him at 8:30 the next morning...

Dr. Howley viewed the scans taken at the ultrasound and agreed with Dr. Lashus on the diagnosis. It wasn't but another two hours and I was scheduled for another echocardiogram in Denver a week later. I was thankful to be able to meet this special team of people that would potentially be saving my daughter's life. But, at the same time, I was just so...upset. I was so angry and confused with the situation. It took me a couple of days to stop being so frustrated and just accept my situation for what it was.

I am blessed. I was able to carry not one, not two, but now THREE children. I have an amazing, supportive family by my side. I have the chance to meet my daughter. She has a fighting chance with today's medical advances and technology. I have way too much to be thankful for. This diagnoses sadly changed my outlook on EVERYTHING very quickly. It shouldn't have taken something like this for me to change to a better outlook on things.

I knew, from the second they discovered her defect, that I was going to fight for her. I don't need to though. She is a fighter. She is proving that to everyone and she's not even physically here yet.

Keep it up, baby girl. I can't wait to see what you will achieve in the journey ahead of us.

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