November 11, 2005:

1:00 am – I think Emma just gets home-sick for the Children’s Hospital. She didn’t do as well today, more coughing and labored breathing. Then this evening she had a period of struggling with getting enough oxygen, labored, fast breathing, etc.

So she just took off in the helicoptor down to Little Rock. The local hospital just doesn’t have the facilities to care for her near as well as the specialized hospital down there. The coptor doctor did a thorough exam before loading her up, and he told us that he doesn’t think this has anything to do with her heart – his best guess is some sort of virual infection in her lungs, pneumonia, something like that. Obviously they’ll be doing a lot more examining and testing once she gets down there.

To sum it up, for a bit there it was a bit more of a scary situation than others have been, but it’s probably more a “normal” problem, compounded by her weakened state from all these surgeries, lack of nutrition, etc. So please pray for her, but as far as we can tell, she’s not in any immediate danger. I personally feel much more relieved now that the Children’s Hospital has her.

Miriam will try to grab some sleep, and then head off down to Little Rock around 5 or 6 am with her mom. I’ll stay here to wrap some things up for the morning, and then head down in the afternoon.

10:00 am – Miriam arrived in Little Rock, and she just called to say that Emma is doing fine. She’s looking better than yesterday, and breathing much easier. The hospital may give her some blood this afternoon (not sure why), but at this point she is stable and they’re just monitoring her. I’ll update later when I have more info. I’ll be heading down this afternoon and probably staying through the weekend. We don’t know how long she’ll be down there, but we’ll keep the site updated.

3:30 pm – Emma’s blood levels went back up, so the blood transfusion was canceled. Nobody seems to be quite sure why she is having these problems, but I’m sure we’ll learn more as we go. Emma is seeming to be much more comfortable, and is sleeping peacefully for longer stretches. She has all of a sudden become very attached to her pacifier. I am heading down to Little Rock now.

11:55 pm – She’s looking good. Other than a little faster than normal breathing rate, Emma is definately doing better than she was yesterday. No labored breathing or grunting, very little coughing, and content. She likes her new stuffed helicoptor toy too 🙂

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November 10, 2005:

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:

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:

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:

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:

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November 3, 2005:

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.

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