Kaleb Prinz: A Bump in the Road

Okay, so I think we can all agree I'm a terrible blogger! I have the best intentions, I promise. Things happen at least a few times a week, and I say out loud, "I'm going to put that in the blog tonight," and then I don't. What can I say? Life gets in the way. But December 19th being the last post is really really bad!

So much has happened in the world of Kaleb in these months I hardly know where to start. First of all, cardiac-wise he's doing GREAT. They have taken him off diuretics entirely, and hopefully by his next appointment with Dr. Nugent, we'll get a 6 month clearance. Fingers crossed. We'll see. His Sats are between 78-82, which is well within his expected range...and further proof that this kid is incredible since he NEVER stops moving. ;)

He's been getting regular Speech(feeding), Physical, and Occupational therapy, and he's made some amazing progress. If you've been watching us on Facebook, you know Kaleb can WALK. It's absolutely amazing to watch, and I don't think I'll ever grow tired of it. When he's 10, I'll probably still be an enormously proud Mama--all right, I promise I won't embarass him like that. I think at least part of what makes it so amazing is when he takes off walking the long stretches, he pauses and looks at us with the biggest smile on his face, and then keeps going. He knows how impressive he is!

Unfortunately, he has developed terrible torticollis(terrible inflexibility of the neck muscles that leads to his head tilt to the right) that will require intense stretching and strengthening of those muscles over a relatively long period of time.  We think his modified crawl that we affectionately refer to as his "gorilla baby" move has reinforced this over time.   We've switched to PT services with Baylor Our Children's House in Dallas, and we're excited that he finally starts next week.

Back in March, Kaleb finally got into Baylor Our Children's House day patient feeding program. We had been waiting for quite some time, and had high hopes that he would leave the program eating at least a couple of day feedings by mouth. It started out well, and he seemed to be making progress. Unfortunately, the discovery of the advanced torticollis and his ability to vomit between 5 and 10 times per day(normal if you know Kaleb, but really freaked them out) contributed to them suspending our participation in the program. I won't lie. I was devastated.

To make matters seem that much worse, everyone we trust with Kaleb's feeding and GI issues was telling us we needed to convert Kaleb's G-button to a GJ tube. What this means is that the tube going into Kaleb's stomach to feed him would be changed to a tube that bypasses the stomach and empties in the intestine.  Since the food bypasses the stomach entirely, in theory, he shouldn't throw up anymore. From what we've learned so far, the only major negative to this change is that Kaleb will have to go back to continuous feeds all the time.

After much research, and many weeks waiting for details to be worked out between our private practice GI and Children's GI team, Kaleb is scheduled to have this procedure and an Endoscope performed on Monday. I'm trying to be positive about this, but it's really hard. Our sweet boy has just started walking, and now he has to be connected to his feeding pump for 20 hours a day.  It might sound silly, but this feels like such a huge step backward for him.  How did we get so far away from Kaleb being able to take enough by mouth that we could cut back on his pump feeds? It makes me sad.

Thank goodness, there's an incredible network of parents of tube-fed kids, and a few moms have created some amazing products to make the lives of our kids easier. Kaleb already has several belly belts and G tube pads, and now he can add a feeding pump "backpack" to his arsenal. It's a really cute sock monkey pattern, and holds his feeding pump with the bag of formula so that he doesn't have to be attached to the pole that usually holds it. We've been having him wear it with the pump inside so that he can adjust his balance for the extra weight.

I remember often, back before his heart surgery, in several of our gazillion talks with Dr. Nugent, he addressed the difficulty of feeding issues and cardiac kids. I remember clearly when he told us that we would spend more time overcoming Kaleb's feeding problems than we ever spent on the cardiac issues. Well....of course, I thought that was ridiculous! I truly believed that after his heart was mostly corrected and we could really focus on feeding, Kaleb would be eating by his 2nd birthday. But as with just about everything else so far, Dr. Nugent is probably going to be right. Everyone's best estimate of how long Kaleb might need his tube in the GJ position is 1-2 years. When the dietician at Baylor first said it, I started crying. Dr. Barth, the GI doing Kaleb's surgery on Monday said that he sees kids with Kaleb's severity of feeding problems(as in total lack of oral intake) eating pretty well by 8 years old. I was so stunned that time there were no tears.

I've spent so many hours thinking about whether this is the right path for Kaleb, and imagining that having to wear the backpack will hold him back, I've lost sight of the fact that I am not in control here. As hard as it is, I never have been. Kaleb is a precious gift from God, and this is all part of His plan.  It wasn't so long ago that I was praying for Kaleb to have a chance at life, recovery from life-threatening complications, and to be able to enjoy life at home like so many other babies. We've been incredibly blessed to celebrate his first 20 months of milestones, and each one is better than the last. Where is my faith that eating is part of the plan?

Watching him play wearing his backpack-try to walk and fall down, but get right up is such a major lesson for me. I have to try harder not to project my fears onto this little guy who is so happy, loving every bit of life he can squeeze out, and absolutely fearless.  Today is Mother's Day, and like every other day, I thank God for this funny, smart, adorable, loving, miracle that holds my heart. Please pray that Monday's surgery goes smoothly, and that Kaleb is stable enough to go home that day.  Please also pray that the adjustment to his feeding tube will finally stop the vomiting, so that he can feel better, start growing, and maybe even start to eat. Thank you so much for praying for and loving our family.

One day, one hour, one minute at a time,
Jenifer