The weight roller coaster

Once Ella was released from the NICU she did mostly well.  She had an instance of reflux that was tough for her to experience and us to watch because it caused to arch her back in pain.  In addition her eyes rolled in the back of her head and to be honest it looked as though she was having a seizure. At 4 months old we switched pediatricians and he put her on special milk and placed her on prevacid for her reflux.  This seemed to fix the problem.  For the next several months she gained weight and grew according to her growth curve.  At her 9 month check up she was 21 lbs.  This would be the last time we saw her at this weight until she was 3.5.

At her 12 month check up she was down to 18 lbs. We went back 2 weeks later for a weight check and she was down even more to 17.5 lbs.  This was the beginning of a long battle to determine why she was not growing.  At this point she was now diagnosed with failure to thrive (aka FTT).

We saw specialist after specialist.   Every visit I would cry and just please with them to fix my baby.  She was literally wasting away to nothing before our very eyes.  Some days I felt like a maunchausen by proxy mom.  I have no clue how many times I cried for them to just 'fix my daughter'.  Finally around her second birthday the gastro drs in pittsburgh thought maybe she had an obstruction and that was causing her FTT and weight loss.  They ordered an upper GI and a lower bowel series.  In a typical child the intestines are on the left and the appendix is on the right.  Ella had what is called malrotation of the intestines.  Only her malrotation was quite complex.  In a typical malrotation case the intestines are on the right and the appendix on the left.  With Ella her appendix was on the left, her intestines however were in the middle of her stomach and they were wrapped and twisted around her kidneys and liver not allowing food to pass through therefore not providing her with the nourishment that she so desperately needed.

On November 22, 2010 she had the surgery to repair her intestines.  At that time they did not know that her intestines were twisted.  The surgery that should have taken 2-3 hours took over 6 hours!  The wait was awful!  At the end of it Ella's stomach was fixed.  She spent the next several days in the hospital.  She was on heavy amounts of pain medicine and slept a lot.  By the time it was all over she was eating and the hope was she would gain weight.  And she did...however kids triple and then some their weight between birth and their 2nd birthday.  After they turn 2 their growing slows down dramatically!  When she went in for surgery she was a whopping 13 lbs!  When she left she was a little under 12 lbs.  By the time she went back to Pittsburgh for her post - op appt she was up to 15 lbs.  Slowly she started to gain weight.  Today she weighs approximately 30 lbs....at the age of 5!

This was taken day 4 after her surgery

This was the day she came home from the hospital following her surgery

This was about 6 months post - surgery