November 10, 2005:

November 10, 2005 ~ miriamlein

Hi all. I am home for just a few minutes to shower and grab a few things I need. We are staying at least one more day and night in the hospital. Dr. Youmans says if she stays stable today he will discharge her tomorrow morning. We will be going home with the stuff to do the breathing treatments as she will still need those for a few days and then if she gets sick again I will have them on hand rather than have to make another trip to the emergency room.

Emma made 9 lbs! She was 9 lbs both today and yesterday. Dr. Youmans says it is actually good that she didn’t gain because we don’t want to overload her body with fluids at the moment. She is doing great just coughing a bit, which he said is also a good thing.

November 9, 2005:

November 9, 2005 ~ miriamlein

2:30 pm – The second RSV test came back negative today. Emma is doing great. Miriam says she’s happy and relaxed, breathing fine. She’s off oxygen, no IV fluids, basically eating and sleeping as if she was at home. The doctor said her chest x-ray looks the same as before – so sounds like she does still have some lung congestion, but it isn’t too bad, and isn’t getting worse. I haven’t heard much beyond that.

She has apparently decided she doesn’t want to sleep on her back anymore, so she’s rolling onto her side now. That’s a first!

Miriam doesn’t know yet if they’ll be staying tonight in the hospital again, or not. Just have to wait until the doctor’s evening rounds to find out.

10:00 pm – …and the doctor says I’m right… 🙂 Turns out babies don’t breathe through their mouths very well until they are around 6 months old (two more months to go for Emma). Just the way it is.

On another interesting note, Miriam showed the doctor Emma’s one extra-large big toe – the doc says it could actually have two sets of toe bones in it. Only know with an x-ray, but Miriam says looking at it again it looks quite possible. Kind of odd, but not a problem I guess.

She’s still doing good. The doctors didn’t come by tonight, so they’re just going to stay the night. Sounds like they’ll probably be discharged tomorrow morning. Right now all Emma is getting is breathing treatments (I forgot, she’s been getting these this whole time). Basically just have her breathe some gas for a few minutes every so often to help her airways stay clear. We don’t know if they’ll send that home with us, or if she’ll come back to the clinic daily for them…

Anyway, things are still going well. My sore throat is improving too (though tomorrow’s 3 hours of talking in my JBU classes may change that), so hopefully I won’t have to avoid Emma so much

November 8, 2005:

November 8, 2005 ~ miriamlein

4:45 pm – Emma continued to have breathing problems due to congestion last night and this morning, so we decided to take her back in to the local hospital today. The RSV test is negative, so it looks like just a bit of pneumonia.

My opinion on part of Emma’s breathing troubles is that she continuely tries to breathe through her nose, not her mouth, even when her nose is getting clogged up. So then she panics because she thinks she can’t get enough air. She may have a decent amount of congestion in the lungs themselves though too.

The latest thing I’ve heard so far is that the doctor said her lungs are looking much better now (vs. earlier today I guess), so she seems to be doing fine. Miriam will be staying with Emma in the hospital overnight (hospital is 5 minutes from our house, much better than 4 hours away!), and I’m trying to avoid being around her much because I have a bit of a cold too. Elise is back to Grandma’s house for the moment.

She should have her third shot for the pneumonia tomorrow, so hopefully it will start clearing up soon.

November 7, 2005:

November 7, 2005 ~ miriamlein

11:45 am – Emma had a checkup and her tube stitches removed this morning in Siloam Springs. She’s been having some congestion problems lately, and the doctor says she has the first stages of pneumonia. So she has a few shots scheduled for that.

Good news! She is up to 8 pounds 14 ounces!! That’s nearly a pound heavier than she’s ever been, and works out to gaining approximately 2 ounces per day, which is very good.

We’re stopping the bottle feeds for now because of the congestion, but up to now she’s been drinking the entire bottle nearly every time! The hospital recommended using the bottle every other feeding, and then finishing it off with the tube if she doesn’t get it all down, but since we got home she’s been finishing it all up. Better than she was doing before the surgery, so the tightening of the stomach sphincter and slowing down with the bottle seem to be helping a lot.

The local doctor also said he doesn’t think she looks like she has any chromosome problems. We can’t rule anything out until the text results come back though, which will be maybe a week for one test, and a month or so for the other. Still waiting to find out what the brain damage to the Pons will mean too, since the MRI did show damage there.

So we still don’t know what the future holds for Emma’s health, but at least one problem seems to under control – she’s getting the nutrition she needs to grow.

I will try to get some pictures this afternoon.

2:45 pm – Photos! Added some pictures to the entry above. You can see Emma’s feeding tube there. And here’s some photos from yesterday and today below:

November 3, 2005:

November 3, 2005 ~ miriamlein

6:00 pm – Miriam and Emma are home! Emma is looking good, she’s up to 8 pounds 5 ounces, heavier than she’s ever been (by one ounce) and is looking healthy. I’ll see if we can get some pictures up soon.

November 2, 2005:

November 2, 2005 ~ miriamlein

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.

October 31, 2005:

October 31, 2005 ~ miriamlein

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.

October 30, 2005:

October 30, 2005 ~ miriamlein

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.

October 29, 2005:

October 29, 2005 ~ miriamlein

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.

October 28, 2005:

October 28, 2005 ~ miriamlein

A note from Miriam regarding the pictures. If you look really closely at the second one you will see a smile hiding under that pacifier. The two pictures with me in them are actually pictures of me getting a lesson in inserting an NG feeding tube which I proceeded to do. The last one show one of the ways Emma gets her exercise. She loves kicking that leg up into the air.

11:30 pm – Here’s some pictures we just took of Emma. I also updated the page a bit farther up, under October 25th, with some pictures of Emma’s visit with Grandma, Tia, and Deedee Haak.

We met with the neurologist around 3:00 today to discuss the MRI results. It shows some form of injury in the Ponds, part of the brain that attaches the brain to the brainstem. This could be a big part of her eating and muscle tone problems. It can also affect her motor skills as she develops. What we don’t know at this point is if the problem will improve, stay the same, or get worse. There are more tests that they want to run, so we’ll just have to wait and see. Continue reading →

And Then There Was Joy

Emma’s Story