About two weeks ago, Annabelle and her sissy decided that they would like to throw an unwanted and unnecessary curve ball into life. They both ate a penny. Really girls? Really? Nice.
The penny has .. umm..... made it's great escape. Annabelle however, isn't feeling too hot. Like I mentioned before, her energy and appetite is slowly beginning to fade, but her pain is also increasing.
We met with our GI and Nutritionist last week and it was very informative for both the good and bad.The Good
Annabelle has gained all the weight she lost at the last appointment!! This is such exciting news that I cannot put into simple words. We're so very proud of her! :)
That being said though, the weight she's gained can also be explained by the 2x day prednisone she is taking (water weight) and also increased feeds. The loss of appetite has affected her weight over the last week or two, but overall we are still in the positive for as much as she's gained since April. For those numbers, we are grateful. When you see numbers on the scale increasing the way we have, it brings comfort that other systems are also being nourished. If Annabelle still were not gaining weight or continuing to lose, than we would have concerns about the rest of her little systems getting the support/nutrition it needs to thrive - your body puts all else before actually gaining weight, if she's putting on pounds then we know she's actually being nourished as well as we can expect considering the circumstances.
She's grown in height! Not only are the numbers on the scale an improvement, her height has followed!
The Bad
She's coughing and choking constantly. I can no longer lay her down to sleep without her sounding like she's drowning. There is a good chance that when she passed the penny, it tore her Nissen and opened. This isn't an easy fix and will require a new full surgery, not just a procedure or anything outpatient. We really don't want to go that route again, especially knowing how long it will take her to recover and during that time, she won't be allowed any foods/liquids at ALL. If we all find it necessary to re-do this surgery, we might as well kiss those numbers on the scale goodbye for a while. It's a huge risk, but so is the damage being done by the torn nissen. Our doctors increased her PPI (compounded acid blocker) and we will continue to ensure she's sleeping propped high in the bed. We can no longer bolus feed her as anything faster than an ounce or two at a time will make her choke - therefore, we're back to ONLY using the feeding pump, at extremely slow rates, nearly around the clock to ensure she's meeting all the daily requirements.
Tubey Update!!
A person triumph for Annabelle - her tubey looks WONDERFUL! It's never looked as well as it does right now and we owe every ounce of our thanks to the amazing Benik Belt Tubey Cover that Belle has been wearing non-stop. Champions 4 the Children is an incredible, non-profit organization whom has reached out to sweet Annabelle and wanted to do something to help her, provide her some comfort / relief / more smiles in any way they could. I mentioned that one of the biggest things on our wish list is for a tubey belt to help protect her tubey from injury.. and they delivered :) We had a belt ordered and she's worn it everywhere from naptime, in the pool, playing around the house and jumping on furniture. I am amazed at the difference in healing and protection her g-tube has shown and I couldn't be more grateful and humbly blessed for this gift for Annabelle. I know, without a doubt, Belle is equally happy for her newest tubey accessory.
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