9.19.2017

My baby's rare medical condition and what's next


I shared on my very first blog post that my youngest was born with a rare medical condition. At our 20 week ultrasound we found out he had a mass growing near his left arm. After many test we learned he had a lymphatic malformation forming that had to be watched throughout my entire pregnancy. This is not easy to share and I will never share pictures of the malformation to protect his privacy but, sharing this is also therapeutic. I never told many people what was going on when I was pregnant and that was tough. I held it all in because we really didn't know what would happen. Till this day I'm not one to run and share his progress with even my closets friends and family. It takes me some time to process the information the doctors give us, deal with the news in my own way and then find the courage to share. I recently read a blog post of a grieving mother who said that when grief creeps up on her she goes quiet and right in that moment I realized that, that's exactly what I do. I am not in anyway comparing myself to a grieving mother but, that's what I tend to do as well. I get really quiet. My mind kind of shuts off and anxiety takes over me. I don't feel creative and it starts to feel like nothing else really matters. After my initial feelings settle down I try to focus on how I can turn the information I've been given into knowledge. Knowledge that I can use to help my baby and knowledge that I can share with other parents who have to walk this path or one similar to it. So that is my main reason for sharing. I want to help other parents who may feel alone or just overwhelmed. You are not alone.

Reed has been through two rounds of sclerotherapy already. Sclerotherapy is used to try to reduce the size of the cysts that make up the lymphatic malformation. Unfortunately, in Reed's case although the treatments made a difference he will still need debulking surgery. Although I am overwhelmed with the idea of my one year old needing surgery I feel lucky that one day he won't remember it but also that he can get the medical attention he needs. So, I am sorry that I have been M.I.A. a bit on here but I am still learning to deal with the news that we 100% need surgery.

Feel free to share this with any parent who might need someone they can relate to or if you are a parent who is dealing with something similar and have questions please do not hesitate to reach out to me. I do not claim to know it all but I have done my fair share of research on lymphatic malformations and have experienced two rounds of sclerotherapy as a parent.

My hope in sharing my story is that it helps at least one person. Please remember to be kind to others because you never know what someone might be dealing with in private.

4 comments:

  1. Love your transparent heart. You are so much braver than you think! You are a great momma and those babies are so lucky to have you! Thank you for sharing with us. Xoxo

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  2. Love you and you baby boys!!❤️❤️

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  3. You are such a great Mama Bear, Meli! I love that I can come to your blog and get updates on you and the family. Miss you!! Kiss that sweet boy for me <3

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