HLHS

It comes in waves

It comes in waves and hits me like a ton of bricks. I'll be fine and the burst into tears. I hear this is just part of the process. It's not that my faith is shaken, it's just that my human heart is hurting. So sometimes I just wrap my tear stained hands around my stomach and hold him the only way I can.

Right now I can't listen to much music or talk for too long without a lump forming in my throat and my eyes filling with tears, so forgive me if I seem short or I don't respond to you right away.

Writing helps. Just getting it off my chest and into words is therapeutic. The funny thing is , I don't really know how I feel.

Today my struggle is my makeup. I want to put it on because it makes me feel good. It's fun. It lifts my spirits. I'm battling with it though because I know the tears will come and I end up looking like a clown with a streaky face. It's humorous to me that this is the thing I worry about right now. Maybe because it's the one thing I can control and comprehend.

It's hard when Matt's at work because I just want all of us to be together right now. I just want to hold his hand and know that no matter what, we were given the strength to handle anything that comes our way. Adelynn knows something is going on so I try my best to keep things normal for her. We play and laugh and sing and for a little while I feel great, but now it's nap time and the tears have returned.

I just keep telling myself that I have to allow myself to feel. I need to let these emotions come because bottling them up doesn't do any of us any good. So for now, I write and I feel.

I know this little man is fighting for his heart to grow and I am fighting with him. The emotions, the tears, and the confusion are all part of the journey and they will only make us stronger.

So to end on a positive note, as scared as I am about our test today, I am so excited to see Caden again and I am beyond thankful that my husband will be there with me. We will lean on God and conquer as a family. I have no doubt that we will receive clean test results and that Caden's story is going to change the world.

Let's fight this my little man <3 Mommy is cheering you on.

The beginning of Caden John's journey

On Thursday, November 5, our little family went for our second trimester ultrasound. I was 19 weeks pregnant and filled with anticipation about seeing our 2nd little miracle and finding out the gender. Even though our pregnancy was completely normal, our OBGYN sends all 2nd trimester ultraounds to a high-risk specialist (we'll call her Dr. W) because she is the best at reading these types of scans. We are so thankful for that! Everything went well in the beginning and we found out we were going to have a sweet little boy! We were thrilled. When the ultrasound technician began the heart scans, she had difficulty getting some of the pictures she needed. We didn't think much of it because we had the same problem with Adelynn. She was stingy and didn't want to show us her heart, but when we went back everything was in great condition! The technician told us the doctor would take a look at the pictures and would either give us the all good or bring us back in to get better pictures.   We left feeling complete and happy, but in the midst of our celebration we got a not-so-fun phone call. Dr. W called and said after looking at the scans she made us an appointment with a cardiologist for Friday (the next day) Of course, I still thought that we just needed more pictures so I asked "This is just for another ultrasound, right, nothing to be concerned about." Her words ripped at my heart strings. She told me she wanted to be upfront and that it was definitely something she was concerned about, but that she wanted us to talk to the cardiologist.

Friday morning, I went to my regular monthly checkup, and then we drove downtown to the cardiologist (Dr. O). We got to see our sweet boy again, and the doctor confirmed what Dr. W was afraid of. Our little man was diagnosed with Hypoplastic Left Heart Syndrome. The next moments are kind of fuzzy as it felt like the room was closing in around us. Dr. O. drew us some pictures and explained a lot of medical terms and my brain felt like mush. I'll break it down really simple for you

HLHS is a condition in which the left side of the heart is underdeveloped or too small. In our case, the doctors are concerned about his left ventricle and aorta. If his heart doesn't miraculously heal itself (and we are big believers in miracles) then our little guy will need at least 3 surgeries and/or a heart transplant. The first surgery will take place in his first week, the second between 6-8 months, and the third when he's around 5 years old.

Dr. O said he will view each appointment as if he's never seen the heart because miracles happen and he's seen hearts heal themselves, so we are believing for the absolute best for sweet little Caden. He is already a miracle and a fighter (he's a Sullivant, it's what we do ;) )

Right now our little guy is safe because my body is doing everything for him. He is safe in my womb and we can continue with as normal of a pregnancy. Dr. O said the healthier and active I am, the better for baby so I will be kicking some serious booty to fight for my little man!  We will be seeing a lot of doctors and doing everything we can to be the best parents for both of our children.

As of right now here is how we are feeling (if I can break it down into a few simple words):

Hopeful - we believe that God will use this situation for good. He has brought us through some incredible things before, this is just another chapter of our journey.

Confused - we don't know much and there is still much to learn. We will be sharing our sweet baby's journey with you so you can pray with us!

Scared - bad news is always scary. As much as we completely believe that God has got this, we are also human and this is a very serious situation

Overwhelmed - there are a lot of decisions ahead and many things to think about, but we will be taking it one step and one day at a time.

Loved - our family has been incredible and we know that you will be believing with us for amazing things!

So for now we just ask for your love, support, and mostly your prayers. Stand with us in faith that God is in control of this situation and that He knew Caden before he was ever formed and has a plan for his life. We are thankful for each of you and can't do this without you. I will be updating about his journey on here and on his facebook page here.

We are filled with hope about the situation and know that the power of prayer is nothing to be taken lightly so just be prayer warriors for Caden, for Adelynn, and for us as their parents. We have quite the journey ahead, and know that there will be some rough patches and bumps, but we also know that it will be filled with love, joy, and life. We may just need your shoulder or your smile and sometimes we may retreat into the quietness of just being a family, but please remember that we are always thankful for the role you each play and for your continuous support.

With much love, Matt, Tori, Adelynn, and baby C

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