Thursday, December 2, 2010

Bolus and birthday

First birthday cake: Noah's Ark
Noah, you are pretty lucky to have your Auntie Julie-Ann (pastry chef)
make your birthday cakes (and so is your mommy!)

"Happy Birthday to you!" You love your big cousins!

Did you have fun destroying the cake, Noah?

And look, a very special surprise party with your special buddies
and a delicious cake made by Auntie Terri! She knows how much Noah
likes orange and the cake was covered with fun plastic bugs.

Birthday - round two!

Noah had a surprise party thrown by Terri, Heather and his two good buddies. That was super special and really fun! Then my family came over this past Sunday to spoil Noah with lovely gifts and enjoy dinner/cake together. I treasured every moment! Noah covered himself in cake and may have tried a little lick or is always hard to tell with him! His older cousins loved holding him, playing toys, helping him with his bath.

Bolus Feeding

We are now well into our attempts at only giving Noah bolus feeds. He hasn't been on a continuous night feed in over a week and for that, we give thanks. That means we don't have to get up to deal with the pump through the night (wheee!!!). It is hard to comment on Noah's reaction. He is definitely sleeping better through the night (double wheee) but his mornings are tricky. However, he seems to have moved his coughing spells to between 6-7am rather than 4-6am which is good for everyone.

Our new schedule looks like this:
Day feeds:
8am feed 220 ml (one hour)
11am feed 220ml (one hour)
2pm feed 220ml (one hour)
5pm feed 220ml (one hour)

Night feeds:
7pm feed 220ml (one hour)
9pm feed 150ml (one hour)

It took a few days to be organized during the day in order to get the feeds in. We are up one feed in the day and the volumes are up to. Noah is retching intensely but we just stick close to his side and vent as needed. Those retches are terrible but Noah reacts as he always has: he stops what he is doing and then resumes once the episode has passed.

It will be many months of transition, slowly raising his speed and volume of feed but it is a step in the right direction. Four hours a day of feeds is a lot for Noah but he is managing (and so are his parents).

Prayer requests - if you are the praying type, please join us in keeping the following things lifted up in prayer:

1. Grandpa D. and his recovery from surgery. It has already been a painful week and healing takes time. Pray for relief from pain and patience in the recovery process. Please pray for Grandma too as she is the caregiver at home and those of us who've done that kind of "stuff" know the stress it can bring.

2. I've been following a few blogs as of late and both these little people need our prayers:

Little Allie

Sweet Mason

I encourage you to take a look at these blogs to see the journey of other kids with g-tubes (and other complications).

3. Keep our friend Connor in mind in prayer. You can see his story and read his momma's open and honest journal at:

4. With Christmas "stuff" all around us, please remember those who find this a lonely or sad time. I am challenging myself to have my eyes "open" this year to those who might be struggling. Last year, there were many people keeping an "eye" on us in our crisis with both Noah and my health.

5. Pray of thanks that Noah is drinking a few sips of water every day and now wants to have a cookie whenever he sees cookie monster on Sesame Street. Bonus: once in a while, he'll take a little bite or two. Every act of oral eating gives us hope that in the years to come Noah will learn to enjoy food and his body would not react with retches when he tries to eat.


Dar, Jared & Noah


  1. Hi Dar,

    how many calories are in one 220ml feed?

  2. Hi Dar,
    So happy to hear that Noah is off of the night time pump - that's a huge step forward. We too removed Allie off the night time pump (2 months ago) however her vomiting increased because of not being able to handle the higher volumes of milk during the day. Allie now wears her backpack and pump so she can get all of her feeds in during the day. I'm still trying to decide if her backpack and pump is better than the night time feeds - it's almost a toss up. Allie hates both!
    I see you are bolus feeding Noah and it takes an hour. Wow - wondering if he's fed by gravity feed and if so, do you have to hold the syringe or do you have a setup where you can use a bag of some type? I'm just curious because I would like to get Allie off the pump during the day. We run her pump at a rate of 150ml per hour. that is the highest she can handle. She needs to get 225 calories in 4 times a day so her pump runs for about an hour and a half each time. I'm also curious - what rate were you able to run Noah's pump at night? Allie couldn't handle more than 30cc's an hour - if we put it higher than that, she would vomit.
    Noah's cake is awesome!!!! Looks like he had a wonderful birthday. Thanks for sharing Allie's blog on your site - we appreicate all of the prayers. THANK YOU! ~ Jodi