The visit with Dr. H. went well yesterday. Jimmie has gained 2 ounces since last week. He still is not yet 13 lbs. Dr. H. isn't concerned. After looking at how active Jimmie is and all he is doing physically he feels that Jimmie just burns a lot of calories. Which is why Dr. H. would really like Rachael to fortify her breast milk again. Rachael brought in an alternative formula that she got a Nature's Pantry and showed it to Dr. H. He compared that with the enfamil he wanted to use and said, "yep- go for it, this should be fine!" Rachael was hugely relieved because when she had showed the same stuff to the clinic at Children's Mercy they would hardly look at it much less sign off on it.
Because she is still pumping breast milk for Jimmie, Rachael is working very hard to stay away from dairy, wheat, gluten, soy, sugar, yeast, corn... did I miss anything Rachael? She is so committed to doing everything possible to help Jimmie it blows my mind.
Jimmie is going to see the OT that Dr. H. highly recommends next week on Thursday. They will discuss whether or not to pull the tube again then. Dr. H. is encouraged by what Jimmie is doing even with the tube in his nose and down his throat. His thinking is that if Jimmie will continue to progress with taking more by mouth even with the tube in. That's just a easier and better scenario than taking the tube out and putting it back in over and over.
To keep pushing Jimmie forward Rachael decided to have Jimmie take every other feed by mouth today without supplementing that feed by the tube. So basically 1/2 the time today he was supplemented whatever he did not take by mouth and the other 1/2 of his feeding Rachael did not supplement. So if he only took 30mls- that was it. This is obviously less drastic then what they did last week before he got sick, but still leaves him hungry some of the time if he refuses to eat.
He did take about 130mls total by mouth today as of a few minutes ago. That's an improvement over a week ago, but tonight he was starving and hysterical and refused to take in much. Rachael's not sure what that was about. Maybe it was just a bad case of the evening grumps. Today has been the first day Rachael has not noticed anymore snot running from Jimmie's nose so we are hoping he is over his cold.
Keep praying feeding prayers for Jimmie. He has made good progress, but still has a ways to go.
P.S. Oops- Rachael told me Jimmie's weight wrong. He's actually gained about 12 oz! He weighs 12 lbs 5 oz. (Anyone really paying attention will have noticed I had completely different numbers under the P.S. last night. I guess I heard Rachael wrong on the phone. She just sent me an email. LOL! Hopefully we finally got this right!)