Thursday, September 16, 2010

Living on Prayers, Pumpkin Spice coffee and little Patience

Before I had kids, staying up to 3 am with friends after school or work was my idea of an exciting night. I never expected 3 am to become exciting because my child had pulled his feeding tube COMPLETELY out...but alas, that is where I am today.

Now, I'm finding myself dreading 3 am and thinking often of when I will get my next pumpkin spice coffee fix. I am so glad to have Nolen at home, and so thankful for all your faithful prayers and petitions on our behalf. Thank you for your overwhelming support and love for our little family. With that said, little Nolen has certainly kept us on our toes!

The hospital had established an every 3 hour feeding schedule (3,6,9,12, rinse and repeat) , and I really liked the predictablilty of it so I have been trying to stick to it, but feeding Nolen is an ordeal in and of itself.

Feeding Nolen used to be so easy, get him, nurse, change him, go about my day!

Now it's much much much more complicated and can take anywhere from an 1 hr-1hr 45 mins. Here is the process:

Wake Nolen (if he isn't awake)

Weigh Nolen and note weight and time

Go into our room and nurse Nolen (I was letting him eat until he stopped, but the doctors equate an hour of nursing to running a marathon and reccomend from now on I only do 20 mins top of nursing)

Weigh Nolen and note the amount gained

Change Nolen and start to prep him for a feed
       -Check tube placement with PH paper by removing a small amount of stomach fluid through the tube
       -Flush the tube with sterile water
       -Prep his connecting tube with the amount of breastmilk needed to make the appropriate amount
       -Attach the tubes, start his feed.

Leave Nolen's room and go pump for atleast 10 minutes

Store milk, clean up pump supplies and go to Nolen's room

Remove the tubing from Nolen's feeding tube

Flush his NG tube and then flush the tubing that connects the NG tube and syringe with water because apparently breastmilk will build up in the tube and clog it. Insurance only allows one tube and one syringe for feeding per day, so we are having to wash and santize a lot of our items so tha they can be reused.

And then sleep the 1hr-1hr 30mins until the next feed!

I really have to hand it to families with children who require special needs, I had NO IDEA the level of care and work that went into taking care of a child with just one extra need, I can't imagine those who need around the clock care.


welcome to our wonderland said...

oh my gosh girl you must a walking zombie i would be! maybe you can start a iv of coffee! wow that is so involved.

I wish i lived closer i'd so help you out.

is ryan still there? or are you superwomening it all?

your still in my thoughts, my girls thoughts (they were just asking about you guys) and prayers!


Jennifer said...

Listen, I know you don't know me.. but I am not a weirdo.. I told you before I got the link to your blog from a friend of mine that is in MOPS. I am a military spouse stationed at the same base as you but live just offbase. If you are in need of anything.. even just someone to bring a meal to your family so you don't have to cook one, please, please please, let me know. I have my profile on blogger set up so that you can email me and if you get an email notification of my comment, you can hit reply and it will email me back too. I'm serious. In a time like this, military spouses have to stick together and if you need help, please don't feel hesitant to ask people.

Another note- it isn't as fabulous as Starbucks' pumpkin spice latte, but still pretty darn good and satisfied my cravings when I can't get to the 'bucks. Go buy the Coffee Mate pumpkin spice creamer ( Acme usually has it) and brew yourself a pot of breakfast blend coffee ( because it is mild-flavored and not overpowering with the coffee taste) Add the pumpkin spice creamer, a bit if whipped cream on top and a dash of cinnamon and it's pretty darned good!

oleyfriends said...


I wondered if you had heard of the Oley Foundation. We offer free information and peer support to families like yours with a member on home tube or IV feeding.

Check out our web site at For a good overview, click on the "New to Oley" button.

In case it's helpful -- we have an equipment/supply exchange program that may have some of the tubing and syringes you are using available so you could have some extras on hand.

This tells how the program works:

This tells what supplies are available:

Feel free to call/email me if you have any questions or would like to meet another family in a similar situation.

Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
(800) 776-OLEY