Monday, December 20, 2010

More changes for little Allie

What a busy day again.  We met Allie's new Dietician (Tammi) this morning at the Marshfield Clinic.  Tammi was very nice and very to the point about Allie and her feeding.  Tammi had previous conversations with Dr. Brown (GI) and Dr. Edmonson (ENT) and they were all in agreement that Allie should be taken off her milk based food and put on a hypoallergenic amino acid based medical food.  We had the option of Neocate Junior or Elecare.  We decided on the Neocate Junior for really no good reason - just had to pick one to try.  Tammi gave us the option of starting the formula right away or waiting until we got the results from her biopsies and allergy patch testing.  After Matt and I discussed it, we decided to start Allie on the new formula right away.  The new formula isn't going to hurt her even if she doesn't have any food allergies. According to Tammi, being on this new formula might actually help improve Allie's GI track no matter what - so we decided to give it a shot.

In addition to completely changing the formula "food" she gets, it was also determined that Allie needs to be put back on the night time pump.  Without the night time pump, we are simply not able to get in all the calories that Allie needs to grow.  Due to her tolerance or volume issue, if we feed her too much formula OR to fast, she vomits it out.  Apparently her stomach is very small and cannot handle anything over 4-5 ounces in a half hour period.  Doctors haven't been able to figure out what's wrong with her stomach either.  Anyway, the new plan is that Allie now needs 1000 - 1100 calories a day.  Our previous goal was 900 calories a day but due to her volume issues and not having enough hours during the day to get the formula into her, she was only getting about 675 calories.  So, this is a huge increase in calorie intake.  Not sure if Allie can handle it but we will give it a try.  Since starting the backpack feeding regime, Allie hasn't gained any weight, she actually lost a couple ounces.  So, we are hoping with pumping more calories into her, Allie can plump up a little bit so we have a tad bit more wiggle room to start on her oral eating skills.  Right now Allie is 31 months old and weighs 24 pounds with cloths.  She is below the 3rd percentile for weight - however at least she is finally on the charts.

Allie's new formula is in powder form so I feel like I'm back to having an infant in the house with having to mix her formula at each feeding.  We were spoiled with having her previous medical food be in liquid form already.  There is a liquid form out there and our Dietician is trying to get us some samples to try.  My biggest concern is that Allie loves her Boost Kid Essentials.  It's basically the only thing she takes orally.  Since that is milk based, she is no longer able to have it.  The Neocate Junior formula doesn't taste anything like Boost and Allie wouldn't even drink it tonight.  We got a sample in tropical flavor and honestly I tasted it and I didn't like it either.  Tammi said that we can also order it in chocolate flavor but I'm thinking that's not going to be the best either.  For any of you tubie mom's out there, does your child drink Neocate Junior orally or do you just tube feed it to him/her. 

We spend an hour and a half with the Dietician and we came up with the following plan:
 - Allie is fed at night with her feeding pump
 - Allie will receive 4 bolus feeds a day with each feed being approximately 5 ounces
 - Allie will receive only Neocate Junior in her tube and will drink it orally

Am I happy with this??????  To be completely honest, NO!!  If anything, I feel like we are taking a huge step backwards.  Allie is now on a less normal formula.  Most people (unless you have a tube fed child) haven't heard of this formula and it's even more expensive than our previous formula.  We are back to counting scoops and mixing powder with water.  We are back to using the night time pump which is another step backwards.  We worked so hard at getting her off the night time pump and it obviously wasn't successful.  I understand we might need to take these steps backwards in order to move forward one day but this wasn't exactly what I was hoping for from this visit with our Dietician.  To be honest, I don't think I would have been happy with whatever the outcome unless the Dietician said, "let's stop all tube feeds and see what happens".  I always have very high expectations for the doctors visits and each time I get disappointed.

So tonight, we had to hook Allie up to her pump and it was a battle.  She didn't want to be hooked up and I don't blame her.  When I told her she had to use her pump at night, her first words were, "I can't get up when I wake up".  She's absolutely right - she is restricted to her bed in the morning until I go and unhook her from the pump.  I tried to reassure her that all she needs to do is say, "mommy I'm awake" and I will be right there to unhook her.  Now we are back to using the monitors because I'm always so scared she is going to get tangled in her cord or start vomiting, etc.  The worries of night time feeds are endless.......

On a positive note.....Allie no longer has to wear her pump and backpack during the day.  I asked her where she wanted to put her backpack since she doesn't have to wear it anymore and she said, "outside".  Chloe said "but it will get cold" and Allie responded with "that's okay".  Allie was very happy to get rid of her backpack.  I'm just praying she handles the bolus feeds okay so we don't have go back, to using the pump and backpack during the day!!!

Allie also started her patch allergy testing this afternoon.  I will update on that tomorrow.  I'm tired and need to get some rest.  I'm sure it's going to be a long night with Allie.  She never sleeps well when she is hooked up to her pump. 

Overall today was a successful day and we are making progress.  I cannot wait to get results from her biopsies and the allergy testing.  We should have answers to those tests by Thursday!

Daddy and his girls counting cars going bye at the Marshfield Clinic.


  1. Jodi, I am praying for you guys. I understand the disappointment in set backs. I know it is worrisome to have to feed overnight. I wonder what will be coming in the next month as we transition to a button and Madison turns One. My prayers are with you guys. I think of Allie every time I hook Madison up for her next pump feed. I pray both our girls discover the joy of eating soon and that someday we will just offer support to others in our shoes! I hope by the end of 2011 we both are wearing NEW shoes ;o)

    Jess and Madie

  2. Wow, what a rough bunch of news. Perhaps whene the allergy testing is done you can find some rice, coconut or hemp based milk she can drink. We found with Naomi that when we do an overnight pump she is much happier if we trun it off at around 5 or 5:30 a.m. Not fun getting up to do it but hse doesn't wake up with a full bloated tummy and we had less night time vomits that way. We've had really good success with the blender diet for Naomi but we know what her food intollerances are. Her vollume tollerance has nearly doubled since goign to BD.

  3. That's a tough blog...I'm praying for you today that you'll have some rest today and that Allie would be more accepting of her tube feeds, especially the night tube.

    Noah has been on Neocate for 6 months (we get the burden of the price, too! There isn't coverage here in Canada for formula, even if we had insurance.) he doesn't take the Neocate orally but he also doesn't take anything orally right now. it does make me vomit when I smell it, but I'm 5 months pregnant and have been ill the whole pregnancy.

    I can understand the frustration of the backpedaling...mixing formula for a toddler is brutal. I find it annoying and Noah is only a year old. I hope that you'll be able to find the liquid form soon. Have you checked their website??

    Drs. make me crazy too. I pray for peace and patience with each visit but in the last months I feel totally dismissed by the medical profession. Basically they are telling us that we are tube feeders, that there is nothing wrong with Noah, give it time.

    Stay strong, girl! Know that with each feed we do, I am thinking and praying for you and your little girl. I appreciate your blog and your heart and encourage you to continue to share. Many are reading and listening to your heart.

    You may certainly link my blog to your page. If I get organized, I'll do the same.