Feeding Tube Awareness

Hello, friends!

Phew.  It's been a busy few days and I'm behind with what I was hoping to share this month and week. I'll be playing catch-up over the next couple of days.  For now...here's my post I meant to share last week!

Did you know that February is Heart month?  💕 February 7-14th is CHD Awareness week?  You've probably noticed that I'm in over-share mode on Facebook and Instagram, eh?  Well, Feeding Tube Awareness week was February 5-9th.  I'm taking a mini break from heart month to focus a little on Feeding Tubes today.

I've gotten quite a few questions about Margaret's feeding tube so I'm going to do the best that I can to answer them in today's post.

Why the tube?

NG Tube

Margaret had her first surgery when she was one week old, however, she was prepped for surgery the night before and that meant she was intubated and "kept comfortable and still" overnight.  She only had barely 6 days to eat by mouth before her surgery.  Unfortunately, those first few days of trying to nurse were not super successful.  She (and I!) finally seemed to start to figure it out around day 5.  Although she was able to nurse, she was not efficient.  It took her a long time to get anything and that exhausted her.  She would nurse for a little while and then fall asleep.  Margaret's heart was working too hard to be able to handle eating the amount that she needed.  Suck/Swallow/Breathing is extremely difficult to coordinate when you're a newborn with a severe congenital heart defect.  
After her surgery, when she was able to start being fed, she did try to use a bottle and we tried nursing.  She still struggled.  At this point, she was "shunt dependent" meaning, her heart was still working extremely hard and didn't have energy to spend on eating.  The shunt would allow us to give her time to grow and also give her pulmonary arteries a chance to grow before the big surgery.

What tube?

PEG Tube

Margaret started out with a nasogastric (NG) tube so we could monitor how much she was getting and make sure she got enough calories.  This tube went in her nose and down her throat straight into her stomach.  She had this for pretty much her entire hospital stay.  She got really good at pulling those out which meant nurses had to replace them -- something I would never want to have to do.  
At one point during her stay, Margaret had a different tube that went even farther down and bypassed her stomach completely.  This tube went into her small intestine and is much harder to place - you have to have an x-ray to make sure placement is correct.  This one ended up coming out on accident and the team agreed she would be fine continuing with the previous NG tube instead.  

Mic-Key button

Before coming home, she had a PEG tube placed which is a feeding tube in her belly.  The tube goes straight into her stomach -- it was pretty exciting to have her sweet little face finally free from the NG tube 

How long will she have the tube?
This question is hard.  We do not have a set deadline for when we could expect to have Margaret's feeding tube removed.  She will have it until she consumes enough daily calories orally and consistently.  Do we wish she didn't have to depend on it for her daily calories and intake?  Of course!  All parents want their child to be able to eat and grow!  But for now we have it and at least we know we can make sure she doesn't get dehydrated and if anything were to come up, we have easy access to give meds and formula. :)

That all being said...
Last weekend we started phase 1 of a wean plan.  We have cardiology, pediatrician and GI approval to move forward with trying to wean Margaret off of her tube feeding so we are taking full advantage of the timing and jumping right in.

We are working with a consultation group created by other moms who have gone through having their children being dependent on feeding tubes and successfully weaned them off of it.  These women have feeding therapy, dietician, social work, and parent coaching, etc. backgrounds so we are confident we are in great hands with them.  Phase 1 includes cutting down the number of feeds we do each day form 7 to 5 --- HELLO, SLEEP!!!  We have officially cut out ALL late night feeds and a certain mighty gal has been sleeping completely through the night!  We have cut her overall tube-fed calories by around 30% and her reflux has completely stopped.  This is super exciting but also makes us a bit angry because we had brought up our concern of Margaret being overfed for months and no one would listen to us.  Everyone freaks parents out and insists these kids need all of these calories so making a cut to them without provider support wasn't an option.  The fact that Margaret was throwing up SO much but yet still growing and maintaining a really good growth curve despite the vomiting was always a red flag for us as parents.  Being first-time parents to a child with a severe congenital heart defect makes things more complicated and we are hesitant to question the "professionals".  Thankfully, we're becoming more comfortable with speaking up and advocating with each appointment.

The next couple of phases for our tube wean include cutting Margaret's tube fed calories down and it's daunting.  We are hoping and praying that she continues to show increased interest in eating and drinking.  She's been doing well with snacking on some foods like goldfish, Kix and nilla wafers but the interest in wet foods has been limited.  She at least is interested in playing with all kinds of foods so that's a great sign!  Her water intake has been amazing lately, too.  She loves her weighted straw sippy cup and will even scream at me if I'm too slow to get it filled in the mornings!  Progress! :)

We plan to take our weaning plan slow, but not too slow.  We want to move her through each step but not push too hard.  We need to continue to teach her that food is safe and she has control.  We have some BIG family plans at the end of March and our goal is to have her eating some meals orally by then.  Hefty goal?  Yep, but we're hopeful!

Let us know if you have any more questions about Margaret's feeding tube!  We are happy to share  and help spread awareness.