This is Nolan. He has Congenital Heart Disease and Microtia. He is 8 months. He is in the 25th percentile for weight and the 80th percentile for height.
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We have been told by countless doctors, cardiologists and even cardiac surgeons that he is one of the biggest heart babies they have seen. That a child with his size hole shouldn’t be able to gain weight like he has.
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Has his weight gain been easy? No.. absolutely not (how many other ways can you say no?). Nolan has extremely low muscle tone from pre heart surgery and it working hard to gain muscle post surgery. His low muscle tone and oral aversion also mean his suck is very weak.
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We have invested over $800 in bottles. We have cried because he refused a bottle. We have worked hard to make feeding time “fun” but most of all we never gave up.
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Every bottle we found has been a fix for season but not an ideal solution. Our mission was to avoid a feeding tube and we have been able to. Not once during out heart journey did he have to have a tube and for that we are thankful! (there is NOTHING wrong with a tube we just tried hard to keep him on a bottle and luckily were successful)
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Recently I dove into bottle research on a mission to find one more bottle we could try. We had been using an expensive specialty feeder ($30 a bottle) that allowed us to help squeeze the nipple of the bottle to help him drink faster and more efficiently.
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I came across a newer bottle called ComoTomo - The bottle is an all silicone bottle that “mimics” breastfeeding and allows the parents to squeeze the entire bottle to adjust the flow similar to a mothers milk letdown.
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THIS IS LITERALLY A BOTTLE MEANT TO HELP YOU SQUEEZE MORE MILK INTO YOUR BABYS MOUTH! (I am positive is was not created to fit the need we have, but guess what, it works)
We have been using Comotomo bottles for about a week and Joel and I no longer dread bottle time. He is drinking faster, more efficiently, and most importantly he is enjoying it.
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It you are a heart mom run (don’t walk) to any retailers that sell these bottles. In the last week Nolan’s feeding times have drastically changed and his oral aversion has gotten so much better.
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We are thrilled to find a permanent bottle fix!