Developmental Specialist & GI Appointments

After the last update, we had a couple of back-to-back appointments that werent' very uplifting. We saw the developmental specialist at Children's. We saw two specialists in the clinic, but didn't end up seeing Dr. El-Dib (the one that was there when Lucas was born). He ended up pulling an all-nighter and couldn't make our appointment. He sent well wishes to us through the other doctor and said he was disappointed not to get to see Lucas. Most of the visit was for them to assess where he is developmentally. The first doctor put different toys in front of him, looking to see if he has gained the skill yet, etc. Some of them he passed with flying colors, but it was also disappointing to notice "tests" that he clearly isn't doing yet. I'm so sick of talking about what he's not doing!! Its very interesting, all the "experts" tell you to drop any attention to developmental timelines, not to get discouraged when things take longer, that "preemies have their own path, on their own time." But, all of these specialists make it incredibly hard to try to put blinders when they are constantly assessing him!

Dr. Glass then joined in at the end (she is known for having a lot of feeding opinions and advice). It just so happened that the week we went in for this appointment, Lucas started averting eating in a big way. I don't know why, but he would eat a couple of bites, then shove the spoon away. His intake probably dropped in half. I mentioned this to Dr. Glass, so she proceeded to diagnose and advise for about 30 minutes straight about what we shouldn't do... what we should try... what we may have done to cause the aversion. As it turns out...the VERY advice I followed from the OT that we let go in the fall in trying to push him to get to the next level of textures, she thinks has caused the aversion. Fantastic. Its interesting because I didn't agree with our OT then, but she really made me feel that I wasn't doing the right things, and I who am I to question the person that is supposed to help kids "catch up". She even referenced that if we didn't push him, he would have "feeding issues for life." Note: at that time in the fall, I didn't even think Lucas had any feeding issues, he was actually eating quite well. She just took it on herself to "assess" him and started telling me what I needed to change. She wanted us to push him to table foods, and now that is why Dr. Glass thinks he's averting. In hindsight, he was delayed in his ability to move foods around and chew, but I don't believe he had "feeding issues". So guess what -- NOW we need a feeding specialist to un-do some of this and stop the aversion. I was so upset that day, sometimes I get so tired of all of these therapies and their contradictions. I truly believe in my heart of hearts, that I just need to do what is instictive sometimes, rather than listening to everyone that wants to weigh in.

So we go from there to GI, where he was officially weighed. If you rememember from our December appointment, she said he had until the next appointment to gain a minimum of two pounds. He had lost a couple pounds due to all the shunt surgeries in the fall, so she was willing to give him another 4-6 weeks to catch up. He actually did catch up around the beginning of January, he hit 20 pounds. Now, four weeks later (thanks to the aversion and the repetitive ear infections), He weighed just over 19 lbs. More weight loss! One pound may not sound like a big deal, but babies should never lose weight. He basically weighs the same amount as he did in August 08. This is really bad. So frustrating, I know so many preemies that struggle with this and I know we're not alone in this challenge, but I can't even explain how difficult it is when you know how critical it is to eat, but they just won't.

The GI doctor brought up the NG tube again, he literally has ONE more chance, and if he doesn't bring this up, Bran and I will find ourselves in training for inserting a @#%# NG tube down his throat for night feedings. She was willing to give him one more chance due to all the issues with his tonsils and ear infections, and since his surgery was scheduled the following week. She said if this wasn't already on the books, she'd be putting him on NG right now. She knows how opposed I am to it, and we've been able to pull his weight up from the danger zone before, so she said we could give it another month post-surgery. She also suggested we add back in another dose of Prevacid for reflux, and feels that with his tonsils and struggle to breathe at night could be causing more silent reflux. This could also be contributing to the aversion.

I felt pretty defeated after those appointments, sometimes that is also why I don't get things written on the blog right away. If I wrote in my frame of mind on those days, it would be depressing and would probably be filled with a lot of profanity. Ha. But, typically if I wait a day or two, the discouragement passes and I get re-focused on what we need to do to overcome whatever obstacle is in the way.