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It has been a couple of weeks since I last posted and I wanted to give you an update about what has been going on with our family.
As I wrote here a few weeks ago, our baby daughter Elizabeth has struggled with swallowing difficulties, projectile vomiting, choking, gagging, and aspirating from birth.
After countless specialist appointments and assessments, Elizabeth has been diagnosed with Tracheomalacia and Laryngomalacia.
Tracheomalacia in a newborn occurs when the cartilage in the windpipe (trachea) has not developed properly. Instead of being rigid, the walls of the trachea are floppy. Because the windpipe is the main airway, breathing difficulties begin soon after birth. It is congenital, meaning it is a birth defect.
Tracheomalacia can also affect the larynx (the voice box), which is called Laryngomalacia. This also is congenital.
Both conditions are rare and may present other complications, such as congenital heart defects, developmental delays, and gastroesophageal reflux (GERD). Aspiration and pneumonia can also occur from inhaling food.
Tracheomalacia presents in Elizabeth in the following ways:
Breathing noises, breathing problems that worsen with coughing crying and feeding, high-pitched breathing, and rattling or noisy breaths.
Laryngomalacia presents in Elizabeth in the following ways:
Poor weight gain, difficulty with feedings, vomiting, choking on food, and severe gastroesophageal reflux (GERD).
Additionally, Elizabeth is hypotonic, meaning she has low muscle tone in her mouth, face and neck area, which makes it difficult for her to suck on a bottle and swallow her food.
Based on all this information, Elizabeth’s gastroenterologist sent us to the children’s hospital in Macon where she is being given a nasogastric feeding tube (a small tube that goes through the nose into the stomach) to see how she does on it for a couple of days and to give her a break from all the choking, gagging, and vomiting. Prior to this procedure, they are hoping to do an MRI, to gain a better understanding of what is going on internally in Elizabeth.
This Thursday they will do an endoscopy. A procedure that inserts a camera down her throat in a tube that would show them what is going on internally as well. This procedure requires general anesthesia.
Depending on the results of everything will determine what will happen for here. If they decide to do a permanent tube we may seek a second opinion. Please pray for wisdom and guidance for all the decisions we have to make.