Getting Frustrated

One with the tube, one without. Read the post before you get too excited about the tube being out :)

Ahhhhhhh.......starting to get supremely frustrated. Sleepyhead just doesn't care to eat, man I wish I had that problem. He just doesn't care to perk up and eat, and I don't get it. They keep telling us that he'll get it, the lightbulb will go off (but I forgot to ask if that would be prior to kindergarten or not?). Nobody seems worried about this, so I guess that is a good thing. I voiced my concern to just about any nurse or doctor that would listen to me today, and they decided to conduct an experiment. So far the experiment is a disaster. The schedule for feedings is strict at the hospital, he gets fed at 9/12/3/6 (day and night) and must take his two ounces at each feed. Whatever isn't taken orally is pushed through the tube. So in order to mix it up and see what would he would do if we changed that around, they opted to pull the tube and let him take whatever he wanted and on his own schedule (the longest they'll let him go is 4 hours, and then they'll wake him up).

So far he is even less interested in eating than normal, which I didn't expect to be the outcome of that experiment. We did sort of mess with him at the 12 feed, as his tube was out and we had to give him his reflux meds orally.....and he did not like it one bit. After that, he did not trust anyone coming near his mouth with anything. He looked like we fed him a lemon (I am sorry I missed that photo op). I could only coax him into taking half after the medicine debacle. The next feed was even worse, taking a third. I doubt this experiment will continue the 48 hours it was originally intended to go.

I requested a sit down with our primary doctor, nurse, occupational therapist and social worker to drill everyone about the feeding situation. Tuesday we will all sit down to go over everything feeding related as well as what to expect when we go home. I was also informed that yesterday during rounds, they all decided that they should just send Colt home with a monitor. They think that given his lengthy stay on the ventilator in his early days, and his lung condition at birth, that it would just be safe to send him home on one. It is a little portable monitor that he wears all the time, except for bathtime. They said he'd probably have it for three months.

In other completely unrelated news, I have a blog I would like to share with anyone who is also "addicted" to reading blogs. I have had so many people say they are addicted to reading about Colt, I thought I would share one that I am addicted to. This family just had a 24-weeker, 3 weeks ago, the mom has cystic fibrosis and is awaiting a lung transplant and the dad journals their journey at http://www.cfhusband.blogspot.com/. He has a really cool outlook on life, and his current situation. I can completely relate to their NICU ups and downs, but I find great inspiration from his writings about faith and life. I think this was interesting...a post from his blog today:

I envy those people who's faith is most evident in the good times. I totally stink when it comes to having an awesome relationship with God in the good times. I keep asking myself why it takes something like my present situation to really make me believe that God really is who He says he is. I "seem" to do a pretty good job on my own most of the time...it seems to me that it's often a lot easier to trust God when you've nothing left to lose than to trust Him when things are going well. I tend to take the easy road...