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I fought the LAW, and the LAW won...

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Friday, April 15, 2011

I fought the LAW, and the LAW won...

That song keeps playing over and over in my head. Because I gave up today. Alexander is now on night feeds. I fought the pump, and the pump won. BLAH. BLAH. If you want… you can read a happier post here. If you want to understand the ins-and-outs of feeding issues … you can follow along.
·        Birth – Alexander given feeding tube. We are instructed to feed him some during the day and over night feeds.
·        June – we meet other WHS moms. Realize Alexander takes more orally than most of the kids did at that age. We decide to go all oral during the day.
·        July – We go to Salt Lake City. We realize Alexander is doing very well and take a leap of faith – we get rid of night feeds.  Everything goes well. Eating. Begin to eat solids. WE were going to be the family that didn’t need it…. WE were going to make it.
·        November – Alexander is not gaining as much weight as hoped. We start trying different things to boost calories.  We try MCT oil. We try fortifying the milk (He doesn’t like that).
·        Christmas break – I stop pumping and Alexander refuses frozen milk. (Thanks a lot buddy!)
·        We now learn that Alexander can outlast us.  You see.. he can go an entire day with only 30 ml.  For those of you who have never had to count in ML’s – that is 1 oz. We try one day … thinking - he will cave. He does not cave.  By ½ way through the second day – we pick up our old feeding supplies, dust them off, and begin to tube feed him.
·        February – We decide to go with Pediasure. With our Pediatrician’s blessing – but against the nutritionist's advice, we add Duocal (a calorie booster) to his food. Alexander likes Pediasure – we are back to oral feeds.  Everyone is happy. We celebrate.  (Pediasure is good because it is 30 calories an oz as opposed to milk that is 20-23. Pediasure is bad because it has a high osmoality: concentration – so his body has to work hard to break it down).
·        February…. Seizure that lands us in Hershey. We also receive our first shipment of “insurance covered Pediasure” … which Alexander does not like.  We try to convince him to like it – no go. We get a new and improved shipment of Pediasure that Alexander still doesn’t like. We buy store brand Pediasure …. Guess what? Alexander doesn’t like that either.
·        Since about March – Alexander has been a combination of Oral / tube during the day. He takes orally what he can and gets the rest by tube.
·        April – We get a can of EllaCare as a last ditch effort to get him to eat high calorie food. (Oh…. Since his last round at Hershey, he doesn’t really want to eat solids right now either.)  Guess what? Yup! He hates EllaCare….. *sigh*  (EllaCare was great because it is 30 cals/oz and much easier for Alexander to digest.) When I say he hates it… he will take 5 ml of EllaCare. This is 1 tsp.  Yes… I said teaspoon. That is it. Clamps his mouth shut. Tube feed. 

So what do we do? Continue with Pediasure (hard to digest and very difficult to tube because he will eat it sometimes)? OR … go with Ellacare (easier to digest and tube) and give up oral feeds? You really shouldn’t do a combination (trust me on this) – otherwise you get bouts of constipation and diarrhea.

Tonight the tube won. We are switching Alexander’s days and nights.  He will be fed by tube during the night to get the bulk of his nutrition. The plan is to give him the EllaCare by tube using the pump at night. Then we can enjoy feeding during the day.  We can work with his oral motor skills using some juice.

Don’t tell me it is for the best. I know that.  Don’t tell me he needs the nutrition. I know that. Don’t tell me I will be happy we did this. I know that. .. It is just – I don’t give up. EVER. And I just did. (I know… I know… it will be better.) But just let me have this moment. I feel like a failure because I had to fall back on our last resort. Because I couldn’t help him any other way. Tomorrow…. Our family will function a little better because we don’t have to worry about his tube screaming feeds so much. But tonight, I’m going to bed a quitter. And it STINKS.

He doesn't hang out in the clothes basket now.... this picture was from when he was sick and needed elevated.

Thanks for letting me rant. I feel better already. Tomorrow… I will take some awesome pictures of the kids. I am going to work on changing the look of my blog, and I will post as many uplifting blessings as I can think of.  Any suggestions?


At April 15, 2011 at 11:04 PM , Blogger Hilary said...

I'm sending love your way.

At April 15, 2011 at 11:08 PM , Blogger Kisses4Kaylee said...

We spoke at our last get-together, and at that time, Kaylee was eating 16+ ounces of Pediasure a day. The last week has been HELL for us because she has gotten MAYBE half of that...and I am a mess of stress and have been regretting not getting the tube put in. When she gets like this, I cannot help but feel like it would be a blessing to have the tube as a back-up for night feeding-- just to make sure that she gets what she needs. From what you wrote, it sounds like you will do just that-- feed him orally by day and use the tube at night. Am I correct? I know that you are disappointed and feel like a quitter...I think you are quite amazing and a fighter. I wish I could be as strong.

At April 15, 2011 at 11:38 PM , Blogger Wildtree To You With Erin said...

Kristen, prayers!

At April 16, 2011 at 8:09 AM , Blogger Kristen said...

Laurie... that is not quite how we are doing it. Alexander could sleep through the night without eating. Because he ate all day. Now he will eat all night and could potentially go all day with out eating. He will eat.... but it wouldn't be necessary. The bulk of his nutrition will be given to him at night.

At April 16, 2011 at 8:23 AM , Anonymous Anonymous said...

Well, that does suck! You know I always have you guys in my thoughts and I was reading about Alexander liking this drink one day and not the next day, the one thing I kept thinking was typical kid..;)

At April 16, 2011 at 4:06 PM , Blogger The Dortenzos said...

Prayers heading your way!!!!!


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