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Our day began before sunrise, with Matthew waking up hungry and James waking up too full and miserable -- his pump once again was not working, and was delivering too much food, too fast. Ugh.

Over the past couple of days, we've been feeling like James's bottle feeding has been getting worse rather than better. He used to drink 60 ml or so at a time, but now 30 ml is more common, and almost every time we try to get him in a feeding position he starts crying. It's stressful for him and for us, and we've been trying everything we can think of with little success. So we called over to UNC to see if we could meet with one of the speech therapists who worked with him in the hospital. They called us back and we have an appointment with them on Monday.

Then our former pediatrician called to let us know that Matthew needed to go in for some blood work (a routine test, but one that had somehow fallen through the cracks earlier). It was nice to talk to her; we hadn't had a chance to speak to her since we switched to the other practice, and we wanted to make sure she knew that it was for the convenience of having a place closer to home and with better hours, rather than anything about her care!

Then I had a phone call with a case manager nurse who is a resource that our insurance company provides for people with high risk conditions (including preemies). She's basically there to give advice about possible ways of solving any problems that might arise (for example, she looked into the possibility of getting a pediatric blood pressure machine, but found out that they cost hundreds of dollars).

When the mail arrived, we realized that our next Early Intervention appointment was actually on Monday, rather than on Wednesday like I thought. So then we had to call them to see if we could push the appointment back so it didn't conflict with the speech therapy appointment.

We had put some silver nitrate on James's g-tube site, but were worried that it had gotten on more of his skin than it should have, so we called our home health nurse and she graciously came to take a look at it even though we didn't have an appointment scheduled for today.

Then (on the advice of the case manager nurse) we called the pediatrician's office to let them know about the feeding issues, and also to ask them about a call we'd gotten from a pharmacy. The doctors recommended that the boys get a medicine to protect against RSV, respiratory syncytial virus. This virus generally causes just a cold for most people, but it can be deadly for preemies (and former preemies). The medicine has to be given once a month, and they recommend doing it from October through March. (We've already missed October, obviously.) Well, the pharmacy called to get our authorization, because the co-pay is $100! (And that's per dose, so $200 a month.) Yikes!! We called the doctor to see if there was any way to reduce that amount, but they said it all depends on our insurance (and apparently without insurance, this drug, Synagis, costs $1000, so I suppose we shouldn't complain. But still! Ouch!)

Then a different person called back from the peds office to discuss the feeding issues and make sure James didn't need to be seen immediately (he's gaining weight and having wet diapers and not acting unusual in other ways, so no). And then our actual pediatrician called back later to discuss things, and she said it sounded like classic reflux behavior. His dose of reflux meds was just increased last week, so she said to give it another week to see if it helps. And when we ran into James's surgeon at the hospital, he'd recommended thickening James's formula with rice cereal, and the pediatrician suggested that as well and gave us the proportions to use. (And she said she would be at the office tomorrow and Sunday in case we needed to come in -- we are SO HAPPY with this new office and doctor!)

And in between those calls, I called two offices at the hospital to see what the progress was on getting James's medical records corrected. (For the first call, I had to leave a voicemail, then someone called back to give me a different number to call for the person in charge, then I left a voicemail for her -- quite a process! For the second office, the person I need to speak to wasn't in, so I have to call back again on Monday.)

And then we called the company that supplies the pump to tell them about the continuing problems. They delivered yet another new pump (excellent customer service), but it seems really odd to me that the same thing would happen twice. The pump is pretty straightforward; it doesn't have a lot of settings or options, and we've looked at the user's manual to try to figure out if we were making a mistake somewhere, but as far as we can tell we're doing it correctly. If this problem persists, I wonder if there's some other brand or model they can switch us to.

As you can see, we're fortunate to have so many resources, but sometimes just managing all of this stuff becomes quite a production! Ah, we remember the days when we just took for granted that we could take a shower every day and eat meals when we were hungry. :)

The little guys are sleeping now, Mike heard James laughing at one of his toys today, and aside from an evening fuss-fest, Matthew was his usual smiling, delightful self. So, it's all good.