Food Nightmare

While most things that Wes has struggled with are improving with time (heart rate, lung function, development, hearing, vision, etc.) feeding is the one thing that just keeps getting worse.  He started off in the NICU on IV TPN (total pediatric nutrition).  Once his lung function improved, they gradually started feeding him breast milk through a feeding tube and then through a bottle.  At first he surprised everyone with how well he was doing.  He was up to full feedings within a couple of days and was tolerating everything great.  He was doing great and we were starting to think we'd get to take him home soon.

Then the vomiting started.  Now I know most babies spit-up some but this was shooting across the room projectile vomit.  They did abdominal ultrasounds and x-rays to look for an explanation but everything came back normal (great that he doesn't have a bad malformation but frustrating that there are no answers).  They put him back on IV for a day and then tried gradually increasing his feedings again but still he projectile vomited.  They put him on breast milk mixed with a special formula that is normally just for premature infants so they could make his feedings higher calorie to hopefully get him to gain weight.  At this point he was still significantly below his birth weight.  Nothing was working so finally they decided to do a barium swallow upper GI study to see exactly what happens when he eats and swallows (essentially he swallows contrast material and they take continuous x-rays to see where it goes).  He vomited so quickly and forcefully that the radiologist was really concerned about him.  To make matters worse, he aspirated (inhaled liquid into his lungs) when he vomited.  This is really dangerous because he could very easily get pneumonia with so much liquid in his already damaged lungs.  The doctors called over to Children's Hospital for a GI and pediatric surgery consult.  The GI doc came early in the day and talked a lot about his liver function (which has since all resolved).  The surgeon came by that evening and instead of consulting, went ahead and performed a Nissen fundoplycation (to stop the vomiting), g-tube, and liver biopsy (which came back normal).  Wesley was in the hospital for about another week after the surgery and was eating well and only vomited once or twice.  

One he came home things have gotten progressively worse.  He stared vomiting again and became increasingly fussy.  We almost never used his g-tube for feeding when he was in the hospital but after we got home we kept having to use it to get him enough food.  We've tried 4 different formulas mixed with breast milk and 2 different formulas on their own, had me totally eliminate milk protein from my diet, had 3 more contrast studies, and gave him 3 different stomach medications.  He has stopped vomiting for the most part but often screams so much he stops breathing and starts turning blue.  We now have him on a feeding pump at night that continuously pumps a small amount of food into his stomach so he is getting more calories and is gaining weight better, although not nearly as fast as the docs want him to.  In a desperate attempt to getting him eating better we switched a bunch of things all at once: started feeding him in a seat instead of while held, started taking him to a chiropractor, changed him to Prevacid from Zantac, and put him exclusively on an amino acid based formula.  He was finally starting to eat better as long as I was painfully patient in feeding him.  So we started changing things back to see what really was causing the change.  I tried feeding him in my arms again a couple of times and he cried and cried again so he's back in his car seat for now (until I find a reclining high chair).  We switched him back to breast milk mixed with the amino acid formula and he has started screaming again.  But at the same time, he's so inconsistent that it's hard to really know what's going on.  I tried to feed him a bottle of breast milk mixed with formula today and he wouldn't take anything so I tried to breast feed him and he ate great for almost 5 minutes before he started screaming.  But after 4 1/2 months of  pumping and taking care of a sick baby, I'm no longer producing enough milk to try just breast feeding him to see if that works.

So it seems like a simple enough solution, right?  Keep feeding him in his seat and keep him on the amino acid formula.  Well besides the disappointment that I will never be able to breast feed my baby again, the formula costs $400 a month and so far insurance says they won't cover it.  We just switched insurances as Colby went to training but so far TriCare isn't agreeing to pay for it either.  Eating is a medical necessity and if this is the only way he can eat, it seems like insurance should cover it especially since this formula can only be obtained with a doctor's prescription.  On top of all that, he was somewhat better with the formula, but still very difficult to feed.  So all this trouble and fight with insurance companies to get him so he is only difficult to feed rather than miserable to feed, woohoo...