The Battle Against Reflux

We are still in the hospital as of Monday. I had thought we'd be discharged with NG tubes and go home trying to convince the boys to eat the nasty Elecare but Evan has thrown up every feed since the Endoscopy and Erythromicin on Thursday. His body is not digesting the Elecare and the Specialists have no idea why. We are doubling is Erythromicin and adding feeds every three hours and have added an IV to hydrate him because his urine output dipped quite low this weekend. Cameron is also having similar issues but not to the same dire degree as his brother and so doesn't have the IV. We just got back from xray to see if the NG tubes are placed correctly and are waiting on the formula room to mix a 30 calorie Similac formula, even though the GI docs think that there is a milk protein allergy. The boys do not demonstrate any of the symptoms of milk protein allergy but even on the continuous pumped 30 calorie Elecare they have reflux and aren't gaining weight. The only reason I was able to get them to give us something other than Elecare (trust me, I've begged, pleaded and threatened) was that the Dietitian also agrees with me and has backed me up on my plea to try other formulas. I have requested Neocate but they don't carry it at this hospital and will order it if we can't get them to eat the Similac and don't grow on the Similac bolas feedings. This means we will be here for a couple more days at least.

We are still of the mind set that we can get these kids to eat by mouth if only they'd find a formula that doesn't taste like the bottom of a sixth grader's gym locker with orange and vanilla powdered flavoring. We know that if we take them home on NG tubes this time will be limited, maybe only three to six weeks before the boys experience too much damage and then we will have to go to the G tube. But first we have to get them to eat by mouth, second we have to get them to stop vomiting. Everyone agrees they are suffering from severe reflux,and in all other ways and instances they are very happy babies who don't look sick. Yet. It's a matter of time until they do start to look sick and I don't want to wait until they are so sick that they are in serious danger.

Evan is just 12lbs and is now losing weight, and Cameron is under 14lbs and holding steady at 10 months old.

We are all exhausted. The internet is spotty at best and just to log on to make this post took me half an hour of trying. We wash and re-wash our clothes and borrow toy after toy from Child Life Services as the kids get bored and fussy easily. But they are sleeping through the night, with the exception of the during-continuous pump feeding vomit sessions. Evan vomits every four hours at the end of the feed or just before the end, and Cameron vomits after feedings. It means that Drew and I sleep light as feathers on the narrow hard drafty benches so we can hear them when they start to gag and cough in their sleep. Also the feeding pumps are always beeping with errors and that requires a trip to the nurses station. Our room stinks of vomit and Elecare. Yum!

And on another sad note, there are babies in rooms all around us that don't have parents to stay with them. Little teeny tiny babies that still sound like kittens mewing for love and attention. I was told 90% of the babies on our floor are left alone here during the day because their parents can't take leave. It just breaks my heart to hear them crying all day and all night. I know I can't, but I keep wishing that while my guys are sleeping that I could just go and pick one up to make it feel a little loved. I thank all the powers that be and my wonderful husband that I am able to be here with my boys 24/7. Even my husband can't bear to leave. So sad.

I will post more when I can. Thanks ladies!