Mommy Sad

Kierra is incredible.  I say it all the time but she really is. She sat completely still during the entire echocardiogram  (20 minutes +) she didn’t complain or try to get up. She happily watched her favorite movie, Trolls, and allowed a stranger to probe her chest, andomen and neck. Keep in mind Kierra has a chest deformity and it’s sensitive where it protrudes.  I think Christopher and I were shocked. We held her hands, stroked her hair and sang Trolls songs. She was awesome.  

Unfortunately the results of her echo were less awesome.  😢 Her aortic root has increased another 4mm. Doesn’t seem like a lot but it is. It measures at 35mm now. So within a year, it has increased almost a full centimeter which is considered rapid growth and can be a marker for surgery. Now you may ask yourself,  why is surgery so upsetting? It will fix her, right? Yes, there is miraculous technology that can replace or fix Kierra’s aortic root. That is a wonderful thing. The problem is Kierra is so young. She’ll probably have multiple surgeries(valve replacement or repair) over the course of her life. Think of scar tissue build up, her body’s aversion to heal quickly, it’s not so simple. Her cardiologist will be speaking with the marfan specialist in Baltimore and will get back with us. We will probably be doing a medication change and doing echocardiograms every 3 months as opposed to 6. 

On our way home, I let the rush of tears I’d been holding back, spill over. I keep it together long enough to fully understand everything the doctor is telling me and coherently ask questions.  I let go when we’re done and in the car. I sat in the back with Kierra and she reached for my hand, signed “Mommy sad” and did not let go of my hand the whole way home.  She was reassuring me. Kierra is fighting terrible scoliosis and a flawed heart and she’s the one comforting me. A true gift she is.  

Christopher and I discussed a lot of things yesterday.  We will likely take Kierra to John Hopkins in Baltimore when she’s ready for surgery.  They are most adept at caring for marfan patients. Hopefully the new medication will make a difference but if her aorta keeps increasing in size at the same rate, we’re looking at surgery in a year’s time. We also have to consider her spine as it will likely need surgery very soon if the curvature does not stop progressing. It’s so much. It weighs so heavy on us. I can’t tell you how many times a day I wish I could take her place. Kierra is so beautiful and perfect,  I hate for her body to be so defective.  An ugly word to have to use. 

God has given us an incredible blessing in Kierra and we just have a tough journey being her parents. Her beauty, her mind, her smile, her laugh, her hugs and kisses,  make it all worth it. 

Please pray for us. Pray for Kierra’s healing of course but pray for our faith to remain intact even if healing is not in her future.  I think it’s important for Chris and I to face these battles with strength, not of ourselves, but of Christ.

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3 thoughts on “Mommy Sad

  1. Kierra is perfect! She lights up everywhere. Her laugh at dinner, her smile at lunch. Her voice when were in the pool, her love for animals. She hugs Dakota, she loves the cat that came with our new home. I love her in a way I never even knew possible. A whole new area of my heart opened the day I saw her being born.
    I love the way Grandpa laughs around her, Grammy smiles from ear to ear. She brings joy to Papas heart when she grabs his hand. The way she sits on aunties lap when doing make up. She is a gift from God. Perfect. Her heart is big yes but it’s because she’s so full of Jesus. He’s got a plan! I pray for every Marfan. I never even knew that word before Kierra. It has opened a whole new world for us. Veronica God has used you so many times to comfort so many people on the Marfan page. You and Christopher are just so amazing. You give your all and that’s what counts. I’m so proud of you both. I love my family and will do anything for you all.

    Liked by 1 person

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