'When People Think Things are "Just Fine" because my Kid's Out of the Hospital'

I posted a link to the below article on Facebook the other day. I think it sums up Avery, Tim and I's experience perfectly. Every time I read it I cry.

Click HERE to read the article "When People Think Things are "Just Fine" because my Kid's Out of the Hospital".


Taking care of a preemie is still difficult even when they are out of the hospital. It was exhausting when Avery had to have tube feedings every 3 hours. Mixing the formula, pouring it into the tube feed bag, making sure there was no air in the line, hooking it up to Avery, making sure Avery didn't strangle herself with the tubing while she was hooked up for a half hour, rinsing out the feeding tube bag...by the time that was done, it was time to start it all over again in two hours.

And while the feeding tube is behind us, taking her to all of her appointments is like a full time job.It is exhausting.  This girl sees more doctors than most 80 year olds.
She sees:
-Pulmonary
-ENT
-Plastic Surgery
-Neurology
-Audiologist
-Regular Pediatrics
-Dentistry
-Gastro
-Ophthamology
-Speech with Help Me Grow
-also used to see the NICU follow up doctor but she "graduated" from that this past December and was seeing Physical Therapy every 2 weeks with Help Me Grow but we changed her main service provided by them to Speech since she is so delayed.

Then she has a cleft palate clinic follow up once a year..its basically like trick or treating. Only instead of getting candy at every house, we stop at each Specialists office. This is a very long day for all of us (normally 5 hours of appointments). In addition to most of the specialties listed above, during the cleft palate clinic she also sees Nutrition and Psychology. (not sure why she sees psych since she can't even talk but whatever). She has an appointment with the cleft palate clinic on May 21. I am not looking forward to it but I am excited that we will come up with a plan to finally close the hole in the roof of Avery's mouth.

I am not telling you this to complain so you will feel sorry for us. I am telling you this so you can get a better understanding of not just what we go through but what all parents of preemies go through.

Even though some days are tough, I wouldn't change it for the world. Just look at that smile.