CDSW Day 4 - Livy Lou

Meet this sweet little nugget Livia...

You can find her mom on Instagram @apeeamlin

Livia's mom (and bestie..hehe) April, was kind enough to share her sweet little lady here with us for CDSW. Livia is 8 months old and literally makes my heart swell every single time I see her face pop up in my feed. I had the pleasure of meeting this little love once when she was 3 months old. I swear I wanted to grab her and run - and I may or may not have told April and Jack that - LOL!!! #nobutseriously

Since I've met little Liv, she has had open heart surgery and is on the road to recovery. Having walked that path with Hazel we were all too familiar with what this family was going through. Turns out Liv is a total rock star and crushed her surgery and recovery time. She is continuing to grow, thrive and meet her milestones. Such incredible strength!!! Welcome to the Heart Warrior Club Liv!!! 

A message from April...
 

I had a very normal pregnancy to begin with, nothing out of the ordinary. We opted out of the IPS screening as we knew it wouldn't change our decision on our baby's future (best decision we could have made in hind site for our family, we would have experienced unnecessary stress and fear, it was so much better to find out with a beautiful baby in our arms). When I was 30 weeks I was measuring small, after many ultrasounds it was decided that she was growth restricted and therefore they would keep a close eye on her (movement, fluid, heart rate, etc) and possibly induce me early. They could not be certain what the cause of the intrauterine growth restriction was until she was born. She came at 34 weeks but the size of a 30 week baby, 3lbs, 4oz.

The best day of our lives by far, she was breathtaking. We learnt about her heart defect the day after she was born. Dr. Adie did a bedside Echo, because of a murmur he had heard. They originally were not going to send genetic testing, since they did not see any signs for DS on physical exam, and assumed growth restriction was a random occurrence, but because of her newly diagnosed heart defect (AVSD), which is so common with DS, they sent the test.

We received our diagnosis from Dr. Nweasi, he is the biggest sweetheart in the NICU. he reminded us that DS didn't change a thing about her. thAt it was just one part of who she is, but it does not define her. He reminded us that she was still our little princess, and a princess she is!

We were initially filled with mixed emotions, fear, sadness, 'why her', mixed with the overwhelming new love for our new baby girl. We had so much support from our family and friends and decided together that really nothing else mattered but the love we all felt for her. As long as she is loved, all else would fall into place. I started reading some blogs of other moms with children with DS which helped tremendously! I also read the book about the various health concerns with children with DS and found it very educational, but extremely overwhelming (could you imagine if every new parent got a book of all the potential health concerns any baby 'could' get, scares the crap out of you)? It was important for us to remember to focus on what health concerns she DID have that needed to be dealt with and not what she COULD have (there are many things in that book she never ended up having).

We didn't know any children close to us who had DS so our ignorance was what brought on the fear. Once I was able to educate myself, I felt so much better about her future. Now I look back and realize that I wish I knew what I know now. She is literally the best baby, I might be biased but many others agree with me, hehe. We consider ourselves so lucky, and definitely don't consider us a family you should feel bad for or pity. She has taught me that love is what's important and real in this life and she is so easy to love. We can't decide what our children will do or accomplish in the future, we can only guide them and provide them with the tools to succeed, our children with DS are the same, nothing has changed.

Things that have really helped me is reading blogs (Chasing Hazel, Happy Soul Project) or following various DS families on Instagram and seeing real life with children with DS. Through Liv's diagnosis I have been able to meet so many amazing, resilient families, they have all taught me so much about my own life and forced me to look at the world through more compassionate eyes, and the cutest lil' almond eyes ever 😀.
❤️ April, Jack and Livia Larmond

P.S. Liv's heart has been patched up and she rocked out open heart surgery, in and out of the hospital in 6 days! She rocks a proud zip-line scar and is doing great!

I am so happy to hear the April and Jack had a great birth diagnosis. What a wonderful doctor you had!!! If you want to follow along with this little love you can find her mom on Instagram @apeeamlin :)