How our struggle began. August 2008-December 2010.


Having Ava at home with us was such an amazing feeling. It was such a relief to have all of my babies sleeping under the same roof. It was however, quite an adjustment. Ava continued to suffer from constipation, reflux, vomiting, slow motility of the gut, a nonexistent appetite, and because of all of these things, very slow growth.

When she first came home she was seeing her pediatrician and a visiting nurse who would come into our home to monitor her weight. However, as time went on and it became clear that she was not simply going to grow out of her issues, an assortment of specialists were added to the list. Over the last two years, Ava has seen an assortment of doctors and had a multitude of testing. The following table outlines these for you:  
Specialist
Reason/Medications/Tests
1. Pediatric GI
Ava has seen two GI specialists. One in Worcester MA and she is currently seeing one at Children’s Hospital Boston. She has had two barium swallows, and a modified barium swallow, a feeding evaluation, xrays of her abdomen, and an assortment of bloodwork. She has been on Zantac for reflux but this quickly stopped working for her, reglan for slow stomach emptying, but was taken off of it because she began developing some ticks which are known side effects of the drug, and neocate infant formula for added nutrition. She is currently on periactin to stimulate her appetite 2x per day, a small clinical dose of erythromyacin to help with her stomach emptying, ½ a solutab of prevacid 2x/day for reflux, ¼ to ½ a capful of miralax/day for constipation, and peptamen jr toddler formula.
2. Geneticist
Ava began seeing a geneticist when we started to suspect that she may have Russell Silver Syndrome. Her geneticist tested her for too many things to list, including doing a complete chromosome study. She also tested Ava genetically for Russell Silver Syndrome but the result was negative. However, only a small percentage of those with RSS test positive so this does not rule it out entirely.
3. Early Intervention
They have been working with Ava since she was an infant. She was a late crawler, walker, and talker. However, she is now doing well. EI still works with her on sensory issues, vocabulary (Ava loses her words when she gets mad), muscle tone issues, among other things.
4. Ear Nose and Throat
Originally Ava began seeing a ENT to have her hearing tested since she was a late talker. However, he now continues to follow her as her adenoids are slightly larger than normal.
5. Opthalmologist
He followed her ROP until it resolved and continues to watch for signs that she is having eyesight issues. Being a preemie, she is at a higher risk.
6. Endocrinologist
She has seen an endocrinologist in Worcester MA and now sees one in Boston. The endocrinologist closely monitors her growth, bone age, and hormone levels among other things. Ava’s height is making progress but her height to weight is terrible. Her bone age was about 3 months behind but currently seems to be accurate according to her chronological age. One of her hormone levels is low but her dr said this may be because of her poor nutrition as opposed to causing it.
7. Dermatologist
Ava has a hemangioma under her right arm. At this time, her dermatologist said we are going to leave it as it is.
8. NICU Follow-up Clinic
Every six months, Ava is evaluated by the NICU follow up clinic. They evaluate her fine motor, gross motor, and speech. They also go over any health issues currently taking place.
9. Growth and Nutrition Clinic
Ava was working with the clinic in Worcester MA but is now going to one at Children’s Hospital Boston. Before going, I have to do a food log for the three days prior to going. They then will calculate her caloric intake vs her needs. They follow her growth and recommend ways to improve upon her eating habits and nutrition.

Currently Ava is doing okay. She is not doing amazing, as her growth seems to have plateaued but her vomiting is infrequent and her new medication, periactin, seems to be improving her appetite. However, because of her terrible height to weight, her doctors think it is time for us to consider the next step-a feeding tube. Her father and I have mixed feelings about this and are trying to decide what to do. We see her GI specialist at the end of February so until then we are doing our best to help her grow, with the hopes that maybe she can avoid a feeding tube.