"A Nursing Story" : distal and proximal esophageal atresia

"In 1990, as an essentially single 21 yr old and 3000 miles away from my family, I gave birth to my beautiful daughter, Nirvana. She was 5 and a half pounds and had distal and proximal esophageal atresia. because there was so little esophagus, she had to wait until she was 20 pounds or 1 yr old to be reconstructed. In the interim she was to be fed via g-tube and the doc brought the tiny upper portion out the side of her neck for secretion control and mock feedings. 

For that year i nursed her on demand with milk squirting out of her neck, and pumped and g-tube fed her every three hours. I diapered both ends, had tons of laundry, my bed was ruined and my entire life consisted of taking care of my babe. At one year old, she weighed a teeny 12 pounds and the surgeon opted to reconstruct. He took part of her stomach and made an esophagus. I am convinced that the healing properties of my milk healed her surgery sites quickly and her g-tube was removed within 6 weeks. She was so accustomed to nursing for comfort that she quickly transitioned to nursing for nutrition. Many, many years later I found that so many of these babes that have this type of surgery take years to get rid of the g-tube feedings, some never. And in fact they rarely do this type of surgery and instead chose to put the esophagus in traction and stretch it in order to get the oral feedings established more quickly. The choices I made were purely from the heart with very little guidance, I feel so blessed that this path unfolded before me....." ~ Leigh 

(  Leigh says that the above picture is"... one on line that is an excellent representation....the only thing that isn't clear is how super red and meaty the esophagostomy looked....i even had a wic person seriously offend me by saying, "my, that's a deep gash" i was so pissed and maybe still am.... read my file, dumbass....")

       So many of us see a different side of nursing than that which is advertised in the media. The songs about nursing our babes, and books we read depict minor problems which are easily overcome... this has not been my reality. Nursing ( for this blogger and the woman whose story is above) is a long hard won journey, where often the reward is not the warm and fuzzy glow of motherhood, but the knowledge that despite everything you did it.. your child is stronger and healthier because of the sacrifice. So I will post these stories of triumph over the seemingly impossible, so that others might know that even in special circumstances.. it can be done. With respect to those who choose another path (perhaps for some at least) knowing that someone else was able to persevere, might help them do so as well.


AOB