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.
9:30 pm – Well, Emma didn’t do so well yesterday. What with all the tests taking up her eating time (no food from 7 am – 3 pm) and eating poorly during the night, she lost another 10 oz(!) almost overnight. We feel that this is a blessing in disguise however – now the doctors are looking into more than just her heart.
Looks like she’s having some reflux problems (confirmed during testing this afternoon), and possibly some swallowing problems. Both are VERY easy to fix – a little medicine and thicker formula. She’s on a feeding tube for tonight anyway. She’ll be staying for at least another day or so. The swallow test will be conducted tomorrow, and she’ll be seeing a neurologist to make sure she’s during ok.
So she’s not doing the best at the moment, but it looks like we’re on the road to find out how to get it all fixed. One bit of good news is that the doctor doesn’t think she’ll ever need any more heart surgery – her veins should be fine, and he’s very happy with the healing process so far. Now she just needs to eat!
10:00 pm – I’m back from Little Rock now, and Miriam and Emma are still doing well in the hospital.
Aftera a second echocardiogram (basically an ultrasound of the heart) this morning, the doctor met with us this afternoon. He said that heart seems to be doing fine. There is still some leakage around the patch, but that’s fairly normal for a hole like this. Since it’s stitched on, not glued, there is leakage around the stitches. This should go away with time as the heart walls grow over the patch – possibly in 6 months or so.
The doctor is now saying that there is only one misdirected vein (running from the lungs back to the wrong chamber of the heart in an endless loop) instead of two, and that one of the remaining three is very large, and should be conducting enough blood. The other side (heart to lungs) actually has an extra vein, though small.
The multiple chest x-rays show normally healing lungs, so they’re not worried about that. The local hospital was worried, but the Little Rock cardiologist says that’s because they’re not used to seeing recent open-heart surgery patients, and that everything is normal.
Basically they don’t sound concerned about her recovery in any way, other than helping her to gain weight. To this end, she has stated eating 30-calorie formula instead of the 24 she was on before (nomal is 20), plus they have started her on an additional diaretic prescription on top of the one she already has (this is to prevent buildup of fluid in her previously weakened lungs).
We are very grateful that there are no other surgeries or other intensive medical procedures on the horizon at this time! Continue reading
12:10 am – Miriam called from the hospital. Emma is eating well, but still losing weight. The tests run so far don’t show anything obviously wrong. One doctor thought the two working veins from the lungs to the heart look too small, so they’re going to look further into that on Monday. An x-ray also showed a small spot on the lungs that could be pneumonia, but she doesn’t have any symptoms and they’re thinking it’s probably not that, though a specialist will be looking at it (she’s on anti-biotics just in case).
We’re basically waiting until Monday for more tests. I’ll be driving down there this afternoon (Sunday), hoping to make it back for classes on Tuesday, though Emma and Miriam will probably stay down there. Miriam is staying in the room with Emma there, so I’ll sleep in the waiting room tonight to save on hotels, and then head back Monday evening if everything is going smoothly.