Thursday, April 8, 2010


{This picture tugs at my heart EVERY time I look at it. I walked away while feeding Bubba one day and came back to this. My sweet, sweet baby girl was feeding her big Bubba and taking care of him.}
{this is what Collin eats on an average day.}

Food has always been an issue with Bubba. From the day he was born we have fought to get enough calories in his little body. When he was newborn the fight was to get him to nurse BUT he wouldn’t. So, I pumped for FIVE months. I know… crazy right?? I think back now and wonder how in the world I managed to do it. I had to pump every two hours to produce enough milk, clean the bottles, and then feed him every two hours. My milk dried up when Collin was going in for his first surgery at five months of age. I think it was the stress. My body just told me ENOUGH.

Then the fight went from constant bottle feedings to trying to get him to eat pureed food. We would have to force feed him. I mean hold his mouth open and shove the food in at times. Do I sound like a bad mom??? Then finally one day it clicked and he liked eating. He is still on a diet of all pureed foods. He can not chew and does not do well with texture. Regan has often told him while holding a cheeseburger “Bubba just take one bite…. And you’ll never eat baby food again.”

I have to feed him every two hours to try to keep his calorie intake up. I have tried so many times and different ways to make my own pureed food BUT it is too inconsistent for him and he will throw it all up. So, we just stick with baby jar food and that is expensive. We average about $75 a week in food just for Bubba….. And I am even a coupon shopper!!

Since Collin was a baby the doctors have talked to us about putting a feeding tube in. We have always fought it. The risk didn’t seem worth the results. Up until this year Collin has been able to keep an incline with height and weight. It might be a tiny incline but he wasn’t dropping. The doctors warned us though that when he continued to grow in height and he couldn’t keep up in weight it would become a “problem”. Well folks, we have a “problem” on our hands.

Now Jason and I have to face reality….. Collin is getting older…. His illness is only getting worse. We have met with his doctors and they all seem to agree. It is time for a feeding tube. I have an appointment with a new GI dr. and assuming I like him then we will piggy back it with another surgery he has to have soon. Collin will have to have several surgeries this year. L We have gotten away with out having one for a while. So, rather than feel bad about it, I will choose to be grateful for all of the surgery free time we have been able to enjoy. Collin is a trooper… he has had ten surgeries and always comes away with a smile.

This will be a new road for us. Since I am his personal nurse I will have to learn how to put it back in his stomach when he rips it out because he will. I will have to learn how to feed him this way and still balance the pureed food he loves to eat. It will be a fine balancing act. We don’t want him to gain to much to fast. He has arthritic bones and they can’t handle it. Oh, boy it all seems overwhelming when I think about it. Luckily I have some beautiful friends who have already traveled this road with their children and I can turn to them for help. We are praying that this will be a very good thing for Bubba and that he doesn't stop wanting to eat by mouth.

{When Collin saw me putting this food up to take a picture he came over to give it kisses... he LOVES his food.}


Kenny said...

I know this wasn't the news you wanted to hear, but perhaps it will be a blessing in the long run. If there is one person who always manages to find the blessings in disguise, then, my friend, YOU are that person. Can't wait to see you when I get back in town!

Rachel said...

Praying for every single detail to fall into place - for every single risk to be handled by the Almighty.

Praying for wisdom and peace in every decision you make - and for the support of the medical staff God has handpicked for you.

Golly - that first picture had me near tears, and the last one was darling!

Gooches said...

i am sorry. spence has a feeding tube right now because he has lost so much weight since his diagnosis and the tube just makes me feel better that i can get those extra calories in. it will be hard at first, but when was the last time your life wasn't hard, but you can do it, and you will be able to sleep a little better at night! good luck. there are tons of kids who put those things in themselves so i know you can do it! prayers for your family!

Mandy said...

If you have ANY questions feel free to ask. I too think it will be a blessing that you will be able to get him the food that he needs. I too pumped for 7 months with the twins, to the point that I was getting blood, so that was it for me. We do what we have to as mothers. I also have some ideas to try and keep him away from the tube. Caleb wears big "jumpers" they are like onesies with shorts, or you can even get big onesies and then I use a "tummy tunnel". Another mother came up with this genius idea. It is basically a patch that you put on the onesie or whatever and then can pull it out to feed him and then put it back in when you are done. Caleb doesn't pull on his--it hurts. But I don't want it getting caught on other things. Anyway, when you get to this point in your journey and need this I can hook you up :) Good luck!

Zurmely family said...

it will be hard. it will be a major adjustment for all of you. and hopefully, it is a blessing. but i know you... and i know collin... and you will make it through this. and if it doesn't work, then, you tried. but you will succeed. you always have. love ya girl!

Kristi said...

That first picture could just be one of the most adorable pictures I have ever seen...truly a treasure! Good luck with the feeding tube. I'm sure you guys will do awesome with it.

Krista Jones said...

We will keep you guys in our prayers. You and your amazing family continue to inspire me :)

Palmyra said...

I love your blog. It makes me laugh, cry, but most importantly, appreciate all that I have. I love that you always seem to see the positive in every situation. Your family is very inspirational. Thank you for sharing.