livingwithevan.com | Grandparents, testing, and someone’s not eating…

Grandparents, testing, and someone’s not eating…

Posted on October 7, 2011 by William 5 Comments

My parents have lived in Florida for the last 12 years. For some reason I can’t begin to understand they prefer the warmth, beautiful weather, and year-round beaches to the ever changing weather, overcast skies, and snow of Michigan. Well all of that is behind them now as they made the 1200+ mile drive with a 26 ft truck, 12 ft trailer, a pickup, cats, and my nephew to Kalamazoo at the end of September. We are very grateful that my parents are willing and able to make such a life change to help with Evan. Instead of a daycare, my parents will watch Evan during the day while mom and dad are at work. Thanks Nana and Papa! Thanks to all my wonderful friends that helped get them settled into their new apartment just a few miles down the road. And if any of those people are reading this…. there’s plenty of work left to do in my garage and basement with the things that wouldn’t fit in their apartment. I’ll supply food and beer.

We transmitted our first set of pacemaker data to U of M with our fancy little gizmo. How fancy? Well when it dials its circa 1995 AOL beeping and clicking let’s you know it’s working. It worked just fine and the response we got back the next day from U of M was that everything looks good.

Let’s talk about eating, or lack thereof. Evan has gained…. nothing since we left the hospital? Shocked? We were too. Feeding continues to be something that we battle. Between Evan not taking enough food, being visibly uncomfortable when he does, and throwing up afterwards it’s been an uphill battle that we’re not making any progress on. Evan had a swallow study and an upper GI study to make sure that his anatomy is correct and to check for reflux. Both tests showed that his anatomy is normal and he’s not swallowing into his lungs.

The GI study was inconclusive about reflux, but we didn’t need a study to tell us whether or not he has it, it’s pretty obvious if you spend some time feeding him. Both studies involve Evan drinking a bottle of a barium mixture and then watching him swallow on a live x-ray. The barium looks like liquid chalk and doesn’t make for easy diaper cleanup. When Evan eats it’s a roll of the dice whether or not it will stay down… sometimes he’ll take a huge bottle and not throw up, sometimes he’ll take 1 ounce and throw up, sometimes he’ll even throw up 2 hours after he ate. He’s on Zantac to reduce the acidity of anything he refluxes so it does not irritate his throat and he’s on Reglan to help promote digestion. Baby boy… you’ve got to eat and you’ve got to keep it down.

Other than feeding he’s really good. We’re still going to the doctor constantly, generally 2-3 times per week. This week we were at the cardiologist and they are doing the normal routine, EKG, listen to his heart, check his sats… in the 60s! Oh S!@%. They should be in the 80s. What’s going on? She listens to his heart and then we go to another room for an ultrasound, everything looks good. They check his sats again, and they’re back in the 80s. What changed? Well the room where the ultrasound machine is… 15° warmer. That’s right folks, he was cold. Cold makes the veins constrict and less blood gets to the extremities.Another cause of low sats? Dehydration…BAH! It all revolves around feeding.

Last week we started fortifying Sarah’s breast milk with formula to raise it from 23 cal per ounce to 27 cal per ounce. That didn’t help… Evan just will not take enough milk. So we had to do it… we had to put the feeding tube back in. We didn’t want to do it and we’re concerned about Evan developing an oral aversion because of the irritation but we don’t have a choice, we’ve been home for 5 weeks and he has not gained 1 single ounce. 😥 We’ll get there it’s just going to take more time. The cardiologist mentioned the G-tube again… I’m beginning to think that it might be the best option. Not yet… I want to give it some more time, but maybe it is the right thing for him. The success of the second surgery and his recovery is more important than him having a tube coming out of his stomach for a little while and the risks that come with it. We’ll see how things go….

I love to sit and watch him watch things. He absolutely loves the television, the bright light and the moving pictures. It has become more frequent now, so it’s got to be more than a coincidence but when he doesn’t want to eat and you put the bottle in his mouth he’ll actually swat it away with his hand. If he’s swaddled he’ll push it out with his tongue or keep his mouth open wide until the milk drips into his throat, he starts to choke, and you remove the bottle, then he’ll close his mouth. He’s no dummy, and boy does he have our number. He also likes to look at himself in the mirror, there is one in his crib and another in his swing that he just stares at. He’s holding his neck up really well, kicks his feet out and stretches his whole body out when he’s mad.