Differences of Opinion and Employment Concerns

I keep meaning to write a blog, but there never seems like enough time in the day. Anyway, there has been a lot going on here. Jill’s eating has been up and down. She had a great week increasing her weekly intake by 315ml. Then her next two weeks she ate less; she decreased her intake by 420 ml then 210 ml. But now this past week we are back up again, and she increased her intake by 245ml. Really the bottom line is how much is she gaining and trying to decide if she needs to be on a feeding tube or not. The pediatrician has been extremely worried about her so we met again with the gastroenterologist specialist last Friday. The specialist actually thinks that Jill is doing okay. In his opinion, she is close enough to the 3rd percentile in weight gain (i.e. she is maintaining her growth curve) that we really don’t need to have her on a feeding tube. And in Jill’s case, he feels that there are more risks than potential benefits in doing the fundoplication surgery to stop her acid reflux problems at least at this point. I met with the pediatrician today. She seems to disagree with the specialist. I think her reasoning is more because she sees how trying to get Jill to eat consumes all of my time and energy every day. For the past week or two, Jill pretty much will only take a bottle if she is sleeping or partially asleep. Plus, if I’m trying to get her to eat during the daytime hours I generally have to give her Tylenol so she will want to swallow. The eating thing is really tricky. Basically, I have to hold her until she falls asleep or wait until she falls asleep in her bed then try to pick her up without waking her and give her the bottle. Occasionally, she will eat a small amount while she is awake. If I’m lucky, she will eat a third of a jar of baby food. But she never opens her mouth for the food. I have to wait until she is going to put a toy or spoon in her mouth then try to sneak a bite in. As you can see the whole feeding thing is really challenging, but I guess the good news is she is still gaining weight. Today she had one of her best weight increases so far. She weighed 14 pounds, 1 ounce (gaining 6 ounces in 8 days).



So at least for right now, we aren’t going to do the surgery or have Jill get the feeding tube. We did have her take a blood test on Friday to determine what food allergies she has. We won’t find out the results for a while. The specialist is going to think about possibly doing testing on her esophagus to try to determine how bad the acid reflux problem is and if there is anything else that is causing her pain while eating. Of course, he had to tell us the possible problems that can occur during this test…bleeding, puncturing a hole in the esophagus or stomach that would require surgery, etc. It seems like this whole experience has taught us there are no easy answers. You just take one day at a time. And enjoy Jillian’s laughter and smiles and celebrate every victory she has. On Saturday, she rolled from her back to her stomach for the first time. I’m probably a little more excited than the average mom at every milestone.


Another huge concern for us right now is Bryan’s job. You hear so much about the economic state of the world right now on the news, and yes, we too are one of the thousands of families affected by a slow economy and worried about losing employment and probably most importantly, health insurance. Just this week, Bryan found out that most of the employees in his office will have to reduce their hours from 40 hours a week to 32 hours a week. We are definitely hoping that more engineering work pours into his company. Our biggest concern is health insurance to cover Jill’s weekly doctor appointments, special formula ($500 per month), RSV monthly vaccinations (Nov.-May that cost $1000 per shot), medication, and other medical expenses. Right now everything is covered until the end of the year, but starting in January we will have a lot of medical expenses until our out-of-pocket maximum is met for the year. We were anticipating these medical expenses, but weren’t anticipating Bryan’s reduction in pay. If we are careful with our finances we should be okay…it is just a little stressful. Bryan’s company is also talking about switching insurance providers in the spring. To the average family, it probably wouldn’t be that big of a deal, but for us it is definitely concerning. We don’t know all of the details yet, but it looks like the costs for medical coverage will be significantly higher.