3:00 pm – Emma is doing well. She started eating again yesterday at noon, and was up to 2 ounces every three hours (previous level) by 6 pm Tuesday and doing fine.
Today she ate 1.5 ounces from the bottle with no gagging problems! Definately an improvement. The plan is to feed her from the bottle every other feeding for as much as she’ll take, and then finish it off with her tube.
Miriam and Emma are both coming home tomorrow! Her mom and a friend are planning on picking her up at 9:30 am.
We already have four more appointments set up in Little Rock so far, so we’ll still be heading down regularly, but at least we can all be at home together in between, which will be very nice. I think the next one is in December, so that’s not too bad.
Miriam should have a chance to catch up on all the email when she gets back. I haven’t had time to answer it all, but I’m sure she’s looking forward to replying to all your kind messages. Thank you for your prayers as we wait on all these test results.
9:30 pm – Surgery went well yesterday. Emma hasn’t eaten anything today, so she’ll probably lose a bit of her newly-gained weight and energy by tomorrow when she’s supposed to start eating again.
We’ve had a second geneticist tell us he suspects a chromosome problem. The one mentioned is Chromosome 22. We really don’t know more than that, and won’t for another several weeks probably. We also don’t know if that’s in conjunction with a mitochondria disease. Today’s spinal tap should show some light on that in a week or so.
One doctor said that Emma’s on more calories per ounce than he’s seen, but she’s still not gaining weight the way he would expect. So we’re all thinking that there’s something going on with her ability to process the nutrients.
For now we’re just waiting and praying, and being there for Emma day to day. We don’t know what the future holds, but God does, and we trust in His plan for us all.
11:00 pm – Surgery is tomorrow – not quite sure what time. We’ve heard from many friends coming to visit over the next few days. THANK YOU!! Miriam is very grateful for the time you’re taking to come to be with her. Still planning on coming home Wednesday/Thursday, so maybe she and Emma can hitch a ride back with one of the vistors, which would be a big help.
Another doctor has been very impressed with Emma’s activity today. She’s definetely gaining a lot of energy now that she’s getting the calories. Really whipping her hands, feet and head around, looking at her mobile and the nurses. Smiling a lot too, both at the fish mobile and at us.
She’s also doing great off oxygen! Hasn’t needed it since Friday morning. We found out that a rolled cloth under her shoulders helps her breath much better too.
I just placed some pictures above from Elise’s visit yesterday. And here’s a couple more from this evening of Emma. I tried to get her big smiles, but I just got the edge of them.
10:30 am – Miriam tells me that Emma was wide awake last night until midnight, looking at her fish mobile. She would follow each fish around with her eyes and smile, then look at the next one and follow it around. And then as soon as it would stop she would cry until Miriam started it up again. Not good for Miriam’s sleep, but it’s encouraging to her.
Emma also ate very well this morning from the bottle. And the new resident doctor who came in was very impressed with her. She told Miriam that based on Emma’s chart and what she had been told, she did not expect to see such an active, healthy-looking baby. She also told Miriam that much of brain development is up to the parents. They have released premature babies rated very low in brain development who have done just fine because their parents made sure to interact with them.
Looks like they’re trying to schedule the surgery on Tuesday. Another geneticist is coming on Monday, so they want to make sure they can do all the tests requested all at the same time while she’s under for the surgery. So far she has blood draws, an MRI, a spinal tap, and two minor surgeries (tightening the stomach sphincter and inserting the g-tube) set up for Tuesday.
Elise should be arriving soon, so we’ll be headed off to the zoo.
Miriam wanted me to mention that she’ll welcome visitors, especially on Wednesday and Thursday next week while I’m gone.
9:30 pm – Emma’s surgery has been switched to Monday afternoon because they had a cancelation. So we hope to be able to all be home by Wednesday evening! I’ll stay through the surgery on Monday, and return that night.
Emma is still doing fine. Elise had a great time at the zoo, and we were very happy to see her and spend time with her.
12:30 pm – I’m headed back to Little Rock. Miriam just called and asked me to come back as soon as possible. Emma hasn’t been doing too well with food, so she’s on the feeding tube, but it sounds like there may be some other problems in other areas.
Please pray for all of us at this time. I wil update this page again when I can. Continue reading
12:30 pm – Emma gained two ounces yesterday! The feeding tube is helping.
Even better news is that they did the swallow study this morning, and thickened her formula. In her last feeding, she ate all 2 ounces on her own! The tube will stay in for a while until she proves she’s continuing to do well.
The neurologist is a little concerned about her muscle tone – it’s quite possibly related to her not gaining weight, but he wants to make sure. So he’s going to schedule a MRI or CAT scan for her. We’re not sure when that will be.