Wednesday, February 11, 2015

Feeding Tube Awareness Week

This week is Feeding Tube Awareness Week! Although we haven't been on this journey for long I felt compelled to share with y'all some common myths about feeding tubes.

Myth #1: Parents didn't try hard enough to make their child eat (I personally dislike this one!)

Fact: All parents try to feed their children, a feeding tube is usually the last resort. There are countless medical reasons a child cannot eat and those must be explored.

Myth #2:  You must use formula to tube feed

Fact: You can put milk, breastmilk, formula, or even pureed foods in the tube. Claiborne is mostly formula fed but does get 1 feeding of breastmilk per day (at least until it runs out)

Myth #3: The child's activities must be limited due to the tube.

Fact: Most tube kids can participate in any normal activities that other kids their age do. 

We had to learn that our lives didn't have to stop just because Claiborne had a feeding tube, we can go out and do any activities we want to, we just have more stuff when we do. 

Please take a moment this week and check out the Feeding Tube Awareness website and learn more about feeding tubes.

This website has been an amazing resource for Mack and I and our family! We have used it as tool to figure out what questions to ask and how to prepare for outings and surgery. 

T minus 2 days until the NG tube comes out and the G tube goes in!

Monday, February 2, 2015

Plan of Action Thus Far

We are counting down the days until Claiborne's G Tube surgery on February 13th! Are we nervous, yes, but we are so ready for our princess to hopefully start feeling better and to get that awful tape off her face.

Let me back up....after our last appointment with our GI he suggested we make an appointment with a pediatric surgeon to go over our g tube and nissen options. A GI doctor can perform the g tube surgery but since we were considering adding another procedure that is done by a surgeon he wanted us to talk to them first. So we made an appointment and really started to do our research on our options.

Option 1: Only have the g tube placed
Option 2: g tube placed and Nissen fundoplication

What is a Nissen Fundoplication you ask, it is a procedure where the top part of the stomach is wrapped around the lower part of the esophagus so that when the stomach contracts the esophagus remains closed and doesn't allow acid to come out of the stomach, therefore reducing reflux and GERD.

I met with the surgeon and set a date for surgery, we were still unsure about doing the Nissen because it does have complications, isn't reversible, and makes vomiting either impossible or painful from here on out.

While Mack and were weighing our options C really had a rough week, she pulled her tube out 6 times in a week, was refluxing nonstop, and screaming throughout the night.  We went to her ENT appointment and when they scoped her we could see just how much the acid is affecting her. That pretty much made our decision for us. So she will get the g tube and have the nissen performed at the same time, she will be in the hospital for 3-4 days post surgery.  I cannot tell you how relieved I am that we might actually make our girl more comfortable. We have also moved back to her rock n play to sleep because we have discovered that when flat on her back she is aspirating her saliva (yes we have a wedge but she moves off of it during the night). This has seemed to help, not sure what we will do when she is too big for it.

We've also been going to our weekly feeding clinic appointments which have gone so so. She is doing really well with her foods and not aspirating too badly.  The bottle is a different story, we first tried using a level 1 nipple (with thickened formula) and she go drink for about 2 minutes before showing signs of aspiration. With the level 2 nipple she couldn't drink at all without aspirating, side-note, she was drinking her bottle with the same "noises" as when I had been feeding which is extremely scary after everything I know now!

This last week she could no longer drink from the level 1 nipple and we moved to the ultra preemie nipple. Let me tell you, the poor thing sucked for a good 5 minutes and only was able to get about 2 grams out of the bottle! She still aspirated but mainly due to fatigue from having to work so hard to get the formula out. We will continue to work with her daily to keep up her oral skills, it is not about volume at this point so we do not care how much she eats or drinks.

We had some good news today!!! Yay! I had really forgotten what good news felt like. When C was 1st in the hospital back in November she was diagnosed with hydronephrosis or reflux of the kidney, she had it in both kidneys.  Today while not totally gone she has improved tenfold and we do not have to contemplate any other procedures at this point!!! Praise the Lord! They will keep watching her but gosh am I happy to cross one thing off of our "list" for the moment.

3 months into Claiborne's journey and I am still in awe of how wonderfully she has coped with everything. Hudson has proven to be the most amazing big brother and is super protective of her. We are so grateful for all of the prayers, they are felt and are working!

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