Sunday, May 2, 2010

Feeding History

What a weekend it was!

3 years ago Makenzie left the hospital vomiting every feed. We tried everything. Every kind of formula, feeding schedule, and medication. For 9 months this would go on all day and night.

For nine months I searched for answers. I turned over every rock. I looked in every corner. I talked to every doctor, dietitian, and homeopath I could afford. I tried supplements, digestive enzymes, allergy testing, making my own formula, buying really expensive formula, and still puke, puke, and more puke.

Makenzie was not gaining weight. Nothing I did worked. Nothing.

I knew there was such a thing as a J tube (feeding tube which feeds directly into the small intestines) which was discussed.

The FUNDO (tying the esophagus around the stomach so the child can not throw up) was discussed.B

Both of the above required surgery and not to mention both had a list of disadvantages which didn't seem much better then what Makenzie was already going through. I was not ok with either option.

Before ruling out the J tube and the FUNDO I did a bunch of research on our options. I found a message group called Parent-2-Parent. This turned out to be a saving grace in solving Makenzie's feeding problems.

I found out that there was a button called the Mik-Key GJ. There was no surgery, No side effects, and if it didn't help we could just go back to the regular Mik-Key G button.

Makenzie had the GJ tube put into her stoma on Feb 14th 2008. Her stomach has been bi passed and she has been fed directly into her small intestines ever since.

This was not the perfect fix for everything. Makenzie continued to vomit 4-5 times a day. However instead of the vomit being food it was stomach acid.. gross I know but that is just how it was. In the beginning she was fed 20 hours a day. After upping her acid reflux medicine and playing with her feeding schedule over the last 2 years, we were able to get it down to 12 hours at night. Makenzie began to gain weight.

Makenzie continued to wake up during the night and first thing in the morning vomiting. That is, until after our first round of stem cells. Other then being sick Makenzie STOPPED throwing up. After over 2 years of living with constant vomit it just STOPPED!

I have been thinking about switching back to feeding her through her stomach again for a while but I haven't had the guts. Why change what is working right? That is a good question. The answer... there is little hope for Makenzie to eat all of her food by mouth if she is eating through the tube all night long. She will never feel full or hungry. I had to be done... sometime.

Well this weekend God hit me over the head and said one word.... NOW!

So now it was. I feel like all I did this weekend was feed Makenzie. Each day got a bit better. Today I tweaked a couple of her medicines and we had the best day yet.

Makenzie has been eating well by mouth and tolerating 8 oz over an hour really well. Out of 9 feedings we only had 2 small episodes of vomit. She has done some spitting up but really nothing to even talk about. She has had bowl movements every day and is well hydrated.

She has also been less flexed, willing to hang out on her back, rolling from side to back to tummy was more, babbling more, and was quite the ball of giggles today. I almost had to take her out of church this morning because she was laughing at everything. So cute.

There has been no signs of pain. When Makenzie is in pain she cries, flexes, and grinds her teeth. I have seen NONE of that.

This is utterly AMAZING!

As amazing as it is I am tired. I am overwhelmed by having to "redo" our schedule to fit this in. I am worried Makenzie is not getting proper nutrition. This is a huge change but it is a change in the right direction. I keep telling myself to be patient because it will get easier. I will continue to trust God and know He will get me through this too.

"I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them."
(Isaiah 42:16, NIV)


Believe... Prayer Works!


HeatherS said...

Such great news!!!! I guess that 'J' tube knew it was time to give it a try!

Congrats to all of you!

Amy said...

I will continue to keep Makenzie in my prayers. This is amazing. God is so good, and this is encouraging me more about the stem cells. Congratulations.

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