January - Esophageal Atresia Awareness Month πŸ’ž

With it being my daughter's awareness month for her condition called EA/TEF, I want to celebrate Faith's 1st time eating Chinese food πŸ˜πŸ’“ and her singing while eating was just the sweetest πŸ₯°

Ever since her most recent dilation surgery on Jan 7th she has been able to all foods without much trouble πŸ™ she was scared to try the foods she knew couldn't go down before and she is doing great ❣️

I never thought I would be able to move past the feelings of sadness, guilt and anger associated with the loss of having a "healthy child" and this reminds me of the night I was speaking with an older nurse in the NICU. She could see that I was visibly withdrawn from Faith and hurting inside and started to get me talking about my feelings... After some much needed crying, I agreed to do skin to skin even though the feelings would break me everytime I tried... This time with her loving support and talking me through it, I let go of feelings of being a failure to her, combined with sadness that pieced my heart with such pain... I couldn't provide my sweet angel with the breast. You see, I breastfed my son and it was truly a special bond that I dreamed of having with my second child. For me, not feeding her on the breast caused me to feel like a complete failure... Here was my absolutely innocent, beautiful little baby born into such pain and struggles and I couldn't do the one thing I knew would ease her pain... The magic of the breast πŸ’“ If your a mom that has breastfed you will completely understand how beautiful and bonding it is to feed a child from your body.

Faith had her g-tube surgically put into her stomach on her second day of life and they continued to feed high volumes of food to stretch her stomach in preparation for her Esophagus attachment surgery. I understood why the doctors did this to her, but it would cause her heart to dip down to scary levels and produced tons of saliva. This would fill up her tiny esophagus pouch and caused severe wretching. Faith would turn purple until the nurses sucked it out. This happened all day and all evening. Each breath in and out she sounded like she was drowning, this is referred to as a strider and laboured breathing. Faith spent a total of 3 months in the NICU and 4 months on the respiratory unit. She heeded to have weekly surgeries to keep her esophagus from closing completely and then it moved to every two weeks then months and so forth. She has had a total of 17 dilation surgeries in 3 years and undergone 4 heart surgeries under two years old. Her heart is stable for now and her esophagus is finally making bigger progress than before. It also helps that she is learning how to chew much better in order to try and avoid food getting stuck into her esophagus. This was happening about 15-25 times per day and now not a single one πŸ’“πŸ™πŸ’“ I can't not express how happy I am for her and I hope in sharing her story that it can help raise awareness on this condition.

The stats are as follows associated with EA/TEF

Surveillance program In Alberta, Canada
Total births 404,595
EA with TEF 66
EA without TEF 13 (this is where Faith fits in) and is much harder to treat.

Please help me share this so more people can find out about it. Thank you πŸ™πŸ’ž


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