Appointments: One good, one bad

Sit back and relax...this could be a long one!!

We had two appts yesterday. Isaac's was the bad one. As you all know, Isaac has been sick for what seems like forever. He hasn't been 100% healthy since December (when he had his first ear infection). We'd been doing the inhaler 2-3 times a day since last week to try and decrease his coughing, but it wasn't helping at all. He was up all Tuesday night coughing, so I called the clinic to get an appointment. I figured there had to be something else we could do for the poor guy. Of course our doc was off that day, and since he's had this cough for a month I figured it wouldn't be a big deal to wait until Thursday to see him.

Well, Wed night, Isaac woke up screaming at 9:00 and continued screaming until 11:15. Nothing I did would calm him down. I was about to take him to the ER since I couldn't figure out what was wrong with him, but he eventually settled down enough that he'd actually let me sit down with him. (I had flashbacks from when Caleb was a baby and would scream his head off for 4 hours every single night...I am SO glad he wasn't 26 pounds back then!!) Isaac was exhausted, but wouldn't go to sleep for longer than 15 minutes at a time. He spiked a fever around 4 AM so I gave him some more Tylenol and eventually I was able to rock him to sleep around 4:30 AM and we both slept in the rocking chair. I was able to put him in his crib around 6:00 so I could get ready for Caleb's feeding clinic appt. I thought about canceling it and getting an earlier appt for Isaac, but his fever had gone away and he was sleeping pretty soundly (most likely wiped out from all the screaming!)

His Grammie watched him while C and I were gone. She told me he slept almost the whole time and when he wasn't sleeping, he was cuddling on her lap. (Totally not like Isaac...he's usually way too busy to be held). So I then took him to his appointment. His lungs are still wheezy and he has a terrible ear infection!! His doc told me that they rate them from 1-4 with 4 being the worst. Isaac's was a 4+. I couldn't believe it since we were just at the clinic last Thursday for Isaac's well baby appointment and his ears were fine. Then I felt terrible for not taking him to the ER. Poor baby. So, he's on an antibiotic for his ear and a new inhaler for his cough. This time the inhaler contains a steroid, so hopefully it will do the trick. If not, I am going to demand a chest x-ray and better investigating to see what's going on. He already has diarrhea on day 2/10 on the antibiotics. He doesn't want to eat (obviously not like him), but he is drinking a little at least. I am not minding all the cuddle time, but it stinks seeing him so miserable. Hopefully he'll start feeling better soon.

Caleb had a great feeding clinic appointment. (Maybe one reason that it went so great was because our GI doc wasn't there. She was called out of town and had to cancel. I was happy that she wasn't there because I think she's a looney-tooney!) Even though he was on an eating strike for a month, he still managed to gain almost a pound and grew 1.25 inches since October. He weighed 27 pounds, 2 oz (Not completely accurate since they weighed him with his clothes on, but I'll take it!!) and was 35.6 inches tall! He's 95% weight for height, so that means he's proportionate and they are fine with his weight! WHOOO-HOOOO! (They want the percent to be above 90 and when we started, he was in the 80's)

I have to keep a log of what he eats for 3 days before the appointment (and as you know those three days he ate awesome), so they were impressed with the variety of food he's now eating. They know that his diet still mainly consists of noodles, and they were fine with that. But they were happy to hear that he's trying new things. They also know that he's still getting 3 bottles a day, and they were fine with that too. He's finally meeting his fluid goals during the day (he wasn't when he was on night bottles). His speech therapist is a little concerned that he can only take one sip of liquids at a time, and it takes 3-4 swallows to get it down. However, she thinks it's most likely a muscle tone issue and as he grows, it will continue to get easier for him. They acknowledge that feeding him isn't always easy, but they reminded me about where we started. And if you look at it that way, he's doing AMAZING!

I had a bunch of questions for our new dietitian, which she was pretty much unable to answer. A little disappointing, but according to her "charts" he's getting all of the nutrients he needs through his diet and vitamin. I told her that he won't take his vitamin most days and she told me that was okay. I'm not overly convinced this is the case, but I'll keep working on getting him to take it. One of my friends just sent me some powdered vitamins that I am having some success with. (Thanks again, Abby!) Anyway, this dietitian is also leaving, so we'll be assigned another one....

One concern that they still have his the amount of time he's still up at night. He hasn't gotten bottles at night for 2 months now and his body should be adjusted to that and not need to wake up. His speech therapist told me that the brains of kids who were born premature are "wired" differently. Instead of their brain growing and developing in a safe and quiet environment (the womb), their brains had to develop in a loud, confusing, and crazy environment (the NICU). She said that these kids are prone to being hyperactive and hypersensitive. (None of what she said was news to me. I have known all of this for a long time, but hearing one of C's health care professionals actually acknowledge this information for the first time really hit me. I am glad that she's educated herself about the effects of being born so early and so small. And not just dismiss it now that he's 3 and should be "all caught up.")

She told me that they have recently hired a new OT for the feeding team who specializes in sensory issues. (Where in the heck has this woman been for the past 2 years??!) She'd like me to set up an appt with her so she can give us some strategies to help Caleb unwind and relax, and maybe even help him get over some of his "quirky" sensory issues. I agree that his little brain is going a million miles a minute all the time, and maybe that IS the reason that he doesn't sleep well. Who knows, but it won't hurt to see what she has to say.

Anyway, the BEST news is that if Mr Caleb continues to do well with eating and weight gain, our last appointment will be September 17th!! They want to make sure that he does well over the summer and then they'll set us free! It's a bit scary since feeding him is still far from easy and I like that his weight being monitored. But, I guess he's showed me that even though he doesn't eat much, it's enough for him and his little body. I know he's not going to be a big kid, and I just need to get used to the fact that he's not going to be a great eater either.