Polycose & Neocate

Well, we had to go back to the Neocate formula. The Vivonex that we tried over the weekend did not help at all. So we are now mixing the Neocate as a regular strength formula (.67Kcal/mL). He is doing much better on this. The retching has stopped and he is no longer complaining through his feeds which is so much better for everyone! He is still losing weight though and is down to 7lbs 3oz. So our new plan is to very slowly try concentrating his formula with Polycose, which is basically glucose to add calories. Hopefully this will be easier for him to digest. Today we will increase to .70Kcal/mL and over the next few weeks, hopefully work our way up to 1.0Kcal/mL if he tolerates it (which was the concentration he was slowly gaining on with the breastmilk).
We have decided to put the Barium x-ray on hold as things have improved so we likely wouldn't find anything. We have a trip planned to BC to visit my sister and her family next week, so thankfully things are settling down and we should be able to go! We will have to drag the scale along, and any adjustments we have to make we can do over the phone. We are very much looking forward to getting away for awhile!

Feeding Clinic Appt

We went to see Dr Rempel on Friday to discuss a new plan for Noah. He seems to be over his virus, but the retching continues through his tube feeds. As far as the lack of growth, the doctor didn't have anything else to offer. Since Noah is getting plenty more calories than he should need and it still hasn't helped, and he is so uncomfortable through his feeds, it looks like he just may not be capable of growing. We decided that having him happy and comfortable is most important to us at this point. So to address all the retching, we are trialing a new formula over the weekend called Vivonex. It is also an elemental amino acid formula, but it is meat based (it is actual baby veal ground up with a multivitamin added, and it smells as lovely as it sounds!). Unfortunately all it is doing is giving Noah diarrhea and the retching is still just as bad. So if no improvement by tomorrow, we will go back to the Neocate. However, we will mix it as a regular .67 kcal formula rather than the concentrated 1.03 kcal we were mixing it to before. Hopefully this will be better tolerated. Unfortunately, of course, he will then be getting less calories than he does now, but it looks like our only option for now. If no formula changes work, we will look at changing his reflux meds and see if that helps.
We also decided it might be helpful to see Endocrinology to have them follow his growth and keep an eye on his hormone levels. And we will have another barium xray done soon to make sure that all looks okay with Noah's fundo as sometimes they can slip causing problems. It's all a puzzle right now and a lot of trial and error but hopefully we can figure out how to make feeding more pleasant for everyone.

Discouraging Week

Things haven't been going so well for Noah the past couple of weeks. He has not been well with some type of virus and went down to 7lbs 4oz when his fever was the highest. Thankfully he is gaining some back and is now 7lbs 9oz. His pediatrician visit on Tuesday was discouraging though. Seems that Noah's growth is falling even further off the growth charts. He has only grown 1/2 inch in length and head circumference in the past 2 months, not to mention his weight gain has been even slower. His average of 10 grams/day gain that he had been doing since he got over his surgeries has now dropped to about 3 grams/day (normal gain is 20-30 grams/day). The gagging and retching has continued to get worse and Noah moans and complains throughout most of his feeds. So it seems we may be at the limit as to how much more calories we can try to force into him. Our pediatrician is very concerned, but is out of suggestions. We are going to see our feeding specialist tomorrow to see if we have any other options. I guess only time will tell what the future holds for our little guy.

But those who wait on the Lord shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint.

ISAIAH 40:31