Friday, April 10, 2009

Feeding Frustrations




So our big plan to start weaning Noah from his tube feeds has backfired...
For the last three weeks or so, Noah's oral intake was starting to suffer and is now back down to almost nothing. It has diminished into only taking a bite or two at a meal and often refusing anything. We have no idea what is causing this and can't understand why backing down on tube feeds has not stimulated any sort of increase in appetite. He had a check-up with his pulmonologist this week along with a chest x-ray. I was terrified that the x-ray was going to show reherniation or something that would account for the change in appetite, but thankfully the x-ray actually looked pretty good! The Dr was not happy about his weight and I tried to explain that we were trying to wean the feeds because he was eating so well just a few weeks ago. We have found that every Dr, according to their specialty, has a different opinion when it comes to feeding. His pulmonologist was not in agreement with the wean and actually wanted us to increase his calorie intake by about 400cal per day. We talked to the dietitian up in Ann Arbor that we have been working with and told her of the Dr's concerns, Noah's current weight and length as well as his aversion to food these past few weeks. Needless to say, we are back at square one. Not only are we increasing his nightly feeds, but we are back to trying to bolus him through the G portion 3 times a day along with the water bolus as well. We are going to do this for a few more weeks and try and get some more weight on him, and go from there. I know that this increase in calories is not going to do anything for his appetite, but I also know that it is important for him to have the proper nutrition and fluids. I just wish I could figure out what causes the inconsistency with his appetite. Despite his feeding issues, he is doing great. He is walking everywhere and launching into the terrible two's. His speech and communication skills seem to improve everyday. I am in awe of this little person he is becoming with his own personality and character.
Zane is doing great and had an AWESOME time in Seattle! He really wants to move there now! Thanks to Kelly and Jeff and the boys for showing him the sights in their new home and giving him such a memorable Spring Break! He hasn't stopped talking about it since he got home! I am so glad he got to have that experience. He is now more traveled than I am!
Elliot is doing well and thriving! He is getting to be such a roly poly! He will have his two month check-up and shots this week:( Poor guy! He has developed a dashing smile that melts the heart and will push up on his arms and roll from his tummy to his back. Noah is sure to shower him with kisses and hugs all day long!
A quick "proud Momma" moment...the other day I took all three of them to the post office. I was happy that no one was there when we first walked in, fearing that the boys would be unruly. (I swear they can smell my fear!) Within minutes there were like 15 people in line. I was trying to juggle my items to ship and Elliot's car seat, all the while praying that Noah would behave. I glanced back at Zane and he had Noah sitting quietly by the counter, his arm around Noah to keep him from bolting and each with a sucker in their mouth. Zane said, "I got it Mom, don't worry". I don't think my heart could have gotten any bigger at that moment!
Have a happy and blessed Easter!

7 comments:

Jean ashner said...

What a great big brother and an awesome young man! A true "mommy-moment" for sure! Glad to hear the Bakers are do good. Praying you all can find a good steady weaning plan for Noah but we all know it definitely has to go on "Noah-time". Happy to see he is not turning to the "medical book" as often for his surprises and quirks! Keeping you and your boys in my prayers! Stay strong and don't let them---see your fear!

FaithCDH said...

Aww what a sweet moment! Silly Noah is just playing hard to get with food. I will keep him in our prayers that he starts to take more by mouth. How to get him chunky??? Hmmm...

Thanks for the update, I always love reading them!

Take care,

Amy

Elizabeth said...

They can smell fear! I know it! And that was a special moment indeed.

I wish I had the answers to Noah's feeding issues for you - other than they are all so different and Noah should have his own textbook all about him!

You have amazing boys!

Seth my lil Miracle boy CDH survivor said...

Awww that is too cute

Seth is that way with my friends little ones but glad to hear things are good a for mr.noah my prayers are with him

Weylin and Tori said...

I loved the story! It is so precious! I am so sorry that you are having so many feeding problems with Noah. I swear that Ethan hasn't been talking to him! We'll have to talk soon! Take care!

Jeff Handley said...

Thanks as always for the update Carrie. Tell Zane that we were very happy to have him and we're glad he liked Seattle so much. He is welcome to stay with us anytime!

I'm very proud of Zane for helping you out at the post office -- what a great big brother!

Sorry to hear that Noah is having trouble again, but if it makes you feel any better: we can never figure out why Xander and Xaven have such inconsistent appetites either! Xaven never eats a thing and Xander sometimes only wants a piece of dry toast for breakfast while other times he'll have 2 eggs and 2 pieces of toast, and be begging for more.

Elliot is a doll and the pictures look great!

bikurgurl said...

We had an awesome time with Zane too and would take him again in a minute!! The boys adore him and he is such a great helper!! He is so wonderful and we all love him so much!!

We keep you all in our nightly prayers -- I'm glad to hear that Elliot is getting to be roly-poly and hoping Noah is roly-poly soon too!

I definately know what you mean about the Post Office, and I only have the two boys! I just pack them in the double stroller, bring lots of candy, and hope for the best :) I love the story about Zane; he's such a wonderful big brother!!

We love you and hope to see you soon!

Kelly and the Boys