Hanging in there

Well, we are still here. Friday was slightly better than Thursday, at least in terms of Mommy holding it together. I took a long walk with the girls in the afternoon and that seemed to help. The weekends are always better when Ben is home. It's not so much that they eat better, but I can handle it better with his help.

Here's where we are:

First - We have moved to a three hour schedule. There are several reasons for this. One: they had started eating several feeding of 100mls. They were doing it about every other time in the afternoon and evenings. The alternate feeds they would only eat 60-80mls. It made since, really, sense it had only been an hour since they had finished eating so much. So, we thought if they had more time, they may eat 100ml EACH time. Two: It was wrecking havoc with any attempts to set a napping schedule. There's just no time for them to sleep if they eat every two hours. They were consistently getting over tired. Three: We were losing our minds on the two-hour schedule. It was just so tedious and we'd been doing it for about two months and it was just wearing on us. We just couldn't do it any more.

They haven't really shown much progress on the three hour feeds. Sometimes the eat 100ml - sometimes they don't. But, we like it much better and we feel like we get some breaks. We are also working on a napping schedule and the girls have had several long naps which is good for them.

Second: Doctor update:
Friday, Dr. Malcolm from Duke SICC called me. I guess between a few frantic emails I sent him as well as a call or email or something from Dr. Baker (the ped), he thought he better check in. It was actually quite nice since he's been out on medical leave and wasn't even officially back to work yet. Basically, I told him of our frustrations in feeling like every time we come there they tell us to try something different and it gets worse. In the end, we agreed to schedule the girls for evaluation with GI or pediatric surgery for the g-tubes. We are also going to be seen at Lenox Baker as soon as possible. He also called in a new med for the reflux. We couldn't pick it up in time on Friday, and the pharmacy at Duke isn't open on he weekend so we'll get it Monday. Hopefully it will help and they won't throw it up.

A little later, we had a call from Lenox Baker scheduling evaluations for the girls on Jan 23. Lenox Baker is an out-patient clinic for intensive Occupational (OT) and Speech Therapy (ST). I'm desperately hoping they can help.

Third: Outside help:
A while ago I saw something on a feeding forum I visited about a clinic that would send therapists to your house to help. I posted a request to see if anyone knew what it was and someone responded. It's called Clinic 4 Kidz. The seem to work miracles. www.clinic4kidz.com I've sent an email and will be calling Monday morning to see if they even work with kids as young as Natalie and Abigail. I don't know how much it costs (a lot, I bet) or if insurance would cover it (probably not), but at this point we'd pay anything if it will help them to eat.

I also called Elizabeth, our Durham Country Department of Children's Services caseworker (CDSA), to see if we could get ST and OT in our home.

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So, this is our plan for now. Hopefully next week will go a little better with the 3-hour schedule and scheduled naps. Mommy will try to hold things together for a little longer.