Kingly News

Moving our blog

2005-11-24T21:55:00.000-05:00

Dear Friends,

Although much has happened with our family, we haven't updated this blog since March. Things have been rather busy. Since there has been such a break, we've decided to take care of a couple of things at once. We want to get caught up, and we want to move our blog onto our own site and start using "better" blog software. It's not that Blogger was unkind to us, or hard to use, or anything, but rather that WordPress (which powers our new blog) is so much easier to use, and is less prone to blog spam, etc.

For those who find this place: we're glad you did, and we'll leave it up for those who have already linked to particular posts (and we really don't want to have to try to reload all the photos, etc.). But if you'd like to genuinely keep up with us, change any bookmarks you may have to: http://kinglynews.donnellking.com/. If you have subscribed through RSS, please change the feed pointer to: http://donnellking.com/kinglynews/?feed=rss2.

When you go there, you'll see a slightly different version of this same post to provide some bridging. Thank you!

Not excited

2005-03-13T23:02:00.000-05:00

Hannah was on the radio for the first time, but she didn't seem too impressed by it.

Hannah on the radio

2005-03-13T23:01:00.000-05:00

The three of us were on Star 102.1 with Kim during their Radiothon. Hannah didn't have much to say, and neither did Janet. This was on March 3, the day before Hannah went into the hospital again.

Home from hospital

2005-03-07T14:10:00.000-05:00

We're home. Janet is still sick, but Hannah is doing much better. More later, including photos, I hope.

Hannah better, Janet sick, another fun-filled Spring Break

2005-03-06T20:57:00.000-05:00

We're very glad that Hannah seems to be getting better. One of the doctors said that if Hannah continues to improve, she might go home tomorrow (Monday). However, Janet went home with a fever today. Seems like every time there is a break at work, somebody is sick or has a crisis. [sigh] I am technically on Spring Break, but it is like very other break in the last couple of years--no discernible actual break.

Good news and bad news

2005-03-04T15:43:00.000-05:00

First, the good news.

I had really meant to update before this, but it has been a rather hectic month. More details on this later, but I wanted to mention that we were on the radio yesterday to help raise money for East Tennessee Children's Hospital. Star 102.1 does a radiothon every year, and the Children's Home Health folks asked us to be one of the families interviewed. Hannah didn't have much to say, so I did most of the talking (I got Janet to say three words, I think).

We'll have some pictures to post here as well. Because there will be several of them, and because some of our readers are on dial-ups, we will disable the e-mail feature of the blog site before posting them. We'll just send out a brief e-mail to that list when the new pictures are up.

In fact, we'll probably just start sending a brief e-mail (along with a link) to the subscriber list to alert you to new content. That way you can come look when you want to without having to download the message before your e-mail client moves on.

Now for the bad news: Janet just called and is on the way to the hospital with Hannah. She went for her synagis shot, and while she was there they checked her oxygen and it was down to 85. She gets another trip in an ambulance; we'll see how long the hospital stay is this time. I think this is number 14.

I'll have the laptop with me, so I'll post something when we have some news.

Finally home!

2005-02-05T09:42:00.000-05:00

We finally made it home! It took a day longer than we anticipated because, of course, just as we were getting ready to leave they took vitals on Hannah and she had a slight fever. Because we didn't want to have to take her home and bring her right back, they did a blood test and a urinalysis. The lab got something screwed up, so the results didn't come back until late Thursday night. So we didn't get to go home until Friday--could have been Friday morning, but Friday is now my heaviest scheduled workday, so I had to go to the college.

Hannah slept really well last night. I can hear her snuffling in there right now, just waking up, so I need to go see about her. We're just glad to be home--and I think she is too. She spent quite some time playing with her musical keyboard in her crib.

Still here

2005-02-03T10:58:00.000-05:00

Hannah is still in the hospital, but she has had (it seems to me) a tremendous improvement over yesterday. Her respiratory stuff, which is what brought her in, has been doing pretty well, but other issues kept us from taking her home. For days her pulse rate has stayed high, and she's been antsy. That usually means her fever is up or she's constipated or she's in pain somewhere. But although her fever was up slightly (99.4), it wasn't high enough to cause this kind of reaction. And rounds of acetaminophen and ibuprofen didn't change it, so it's not likely either fever or pain (although neither of them brought the fever down). And prune juice had it's desired effect, but her pulse stayed up, even after the low-grade fever went down on its own.

Finally yesterday they had the neurologist take a look, and he decided a small regular dose of Valium would be good for a few days. It had an almost immediate positive effect. Everything went to normal. Her oxygen dropped initially, but she went all through the night without oxygen (slept the whole night, too, first time since she's been here this time), and it was at 100% this morning. Even her secretions seem more normal (Dr. Gammeltoft, the neurologist, said that was quite possible, since the Valium also lessened the amount of neck arching she was doing).

They may want to keep her through tonight just to make sure we've got the new patterns under control, but I think it's likely we'll go home today or tomorrow.

Latest update

2005-01-29T10:07:00.000-05:00

Hannah is still in the hospital after a restless night. Those of you reading this in our immediate area know that a "wintry mix" was coming into East Tennessee last night. I came home because of a presentation I was to do this morning, and because Zach was to be in a bowling tournament. Both our activities got canceled, so I am doing a little grading before heading back to the hospital.

Actual road conditions are not too bad here--activities were canceled because of the forecast, which was probably wise in light of potential liability. We're hearing from surrounding areas that the wintry mix turned very bad in some places. (The church's Youth director is stuck in Atlanta with several teachers. Restaurants are all closed, and the hotel manager is trying to find someone who will bring food in for them so they don't go hungry.)

Janet stayed at the hospital, and said Hannah was awake a lot--no real indication of why, either. I'll take the laptop with me and update more about Hannah from there. I've talked to Janet twice on the phone, but once a nurse was there, and another time Hannah's oxygen alarm went off, and Janet had to go, so I don't know much at this point. (For those who don't know, oxygen alarm 99% of the time is not a major problem, so don't worry.)

What we do know: Hannah has RSV again. Last year when she got it, she was hospitalized for 11 days. We hope for a shorter stay this time for two reasons:

She's been getting those expensive Synagis shots. Synagis doesn't totally prevent RSV, but rather boosts the body's ability to fight RSV, so she is not hit as hard.
She's a year older. Next year she probably won't even get the Synagis shots, because older children can fight it off on their own.

We shall see.

How did she wind up at the hospital? Ironically enough, she went to the pediatrician for a Synagis shot. She's been a little snottier than usual the last few days (so has Zach, but that's different), and they pretty routinely stick a pulse-ox meter on her anyway, which they did. Her oxygen was running in the mid-80s. So she had another ambulance ride. This is annoying, because I had her on a pulse-ox on Wednesday night, and she ran 97 to 100 the entire night, and after they got her to the hospital she came back up to that level on room air and has stayed there. She had been doing so well we didn't even put the oxygen tank in the trunk. I guess we will learn to just put the dang thing in there any time we go to the doctor's office.

So I don't think this one will be really hard on Hannah--harder, really, on everyone else because of the time disruption and the expense.

More later.

Gone again

2005-01-28T14:02:00.000-05:00

Got behind again. Latest news: Janet is at the hospital at this moment with Hannah again. I'll update when I know something.

Janet's mom came home from the hospital last week, and Janet's aunt came home from rehab a couple of days ago. We don't know yet when they'll head back to Florida.

Keep us in your thoughts.

Just one big hacky family

2005-01-08T22:03:00.000-05:00

Well, the fun just never stops. Now Janet's mom, Jo, is in the hospital—same one Marianna is in, Blount Memorial Hospital. They're treating her for pneumonia, and it sounds like they expect to keep her until at least Monday. More updates later—I guess it's at least good news that, for once, it's not Hannah in the hospital.

Late news: Hannah home

2005-01-08T11:41:00.000-05:00

I'm tardy posting this, because we've been playing catchup. But Hannah is home from the hospital--came home on Wednesday, in fact, late in the afternoon. Thursday and Friday were spent catching up on what had to be taken care of at home, and that pattern continues into today.

Janet's aunt is still at Blount Memorial, but in a regular room now instead of the CCU. She seems to be getting better, but still needs special care. The airline (US Airways) folks at McGhee Tyson were extremely helpful in taking care of changing the tickets so that Jo and Marianna can return home after the medical stuff is taken care of. We are now concerned about Jo getting her stuff in Florida taken care of--there is a deadline for FEMA stuff following the hurricanes.

Faculty report back to the college on Monday. Fortunately, I am not far behind because I was able to take a laptop to the hospital with Hannah and keep working. It takes much longer, though, because of having to jump up every few minutes and, for instance, suction Hannah's lungs. But at least it is possible to get it done, as long as I don't mind giving up little things like sleeping. :) Seriously, compared to earlier hospital stays, keeping up with work hasn't been too bad. My online classes are almost completely ready to go, and the editing on the book has moved along quite a bit as well.

Hannah feels well enough to be mad. I can hear her through the monitor squealing right now--better go get her next feedbag going.

Hannah comes through bronchoscopy fine

2005-01-03T09:50:00.000-05:00

The schedule changed. We learned about 7:30 this morning that Hannah could get her bronchoscopy done earlier than planned, which was good for us, but it meant there wasn't enough time for Janet to get back to the hospital. (She went home last night to try to finally get a little rest and take care of her mother.)

Hannah went in with Dr. John Rogers for her bronchoscopy about 8:30. Dr. Rogers came out and talked with me about 9:30 to show me pictures from deep inside Hannah's lungs (we'll probably post some later, after we get a chance to scan). The gist: she has a lot of saliva down in her lungs, not just mucus.

This is good news/bad news. Although no doubt the saliva carries germs down, the main effect seems to be irritation of the lung membranes (they're designed for mucus, not saliva). Dr. Rogers suctioned out as much as possible, and we can treat it by adding a medication along with the scopolamine patch to reduce her saliva output more and by giving her the Vital-Stim treatment we're already planning to help her learn to protect her airway.

As Dr. Rogers said, by this afternoon she could have a lungful of saliva again, because she's not protecting her airway, but we know what direction to go.

We're also still seeing some laryngomalacia in the form of some floppiness to her airway, but my impression is that it isn't as bad as it was, so she may be growing out of it. On balance, it's a very minor impact on what's happening with her now.

Hannah will go down later for her VUCG (or is it VCUG?), after she has fully awakened from her anesthetic. I'll post another update then.

Update on Auntie Marianna

2005-01-02T18:02:00.000-05:00

Janet's aunt had a massive coronary this afternoon while they were doing a test connected with the small heart attack she had earlier in the day. She is stable at the moment, but is in serious condition in the cardiac care unit at Blount Memorial Hospital. We think she is responsive, but it's hard to say for sure. Please keep her, Jo, and us in your prayers.

Tomorrow the doctors will do a renal ultrasound, a VCUG, and a bronchoscopy on Hannah at East Tennessee Children's Hospital.

Keeping America's hospitals working

2005-01-02T09:19:00.000-05:00

I can't remember if we posted earlier about having Janet's mom and aunt with us over Christmas and New Year's. (I'm writing this offline for later posting to reduce the amount of time I tie up the phone at the hospital.) If not, well, we have Janet's mom (Jo) and aunt (Marianna) with us over Christmas and New Year's. :)

Janet went home last night to be able to spend a little time with them. As it turns out, it was a good thing, because they had to take her aunt to the emergency room at 4:30 this morning. [sigh] She may have had a small heart attack; she has congestive heart failure, and was overstressed, so her breathing was difficult; and she may have aspiration pneumonia. Did I mention she is diabetic?

So Marianna is in the cardiac unit at Blount Memorial, while Hannah continues in East Tennessee Children's Hospital. As I write this, Hannah is in the treatment room getting a new IV put in. Her previous one worked its way out somehow.

Janet is exhausted. After all, she went home to get some rest, and wound up spending half the night at a different hospital. She is here now; I hope we can find a way to get her some relief.

Update on Hannah: Still in hospital, but better

2005-01-01T16:52:00.000-05:00

Thanks for your e-mails. We just wanted to let interested folks know that Hannah remains in the hospital, but she is doing much better. She coughed up a huge mucus plug yesterday, and her oxygen immediately shot up and her pulse dropped--both very good things. She continues to produce a lot of , well, I suppose the technical term is "snot." But it's no longer the color of something you would expect to see on Nickelodeon.

Today she pooped her diaper, and needed a wheelbarrow to finish. I'm afraid it caused her quite some pain, but when she finished she conked out and slept for an hour and a half--quite a relief, evidently. Her pulse dropped yet again, so I think she solved another problem she was having that we didn't even know about. The nurse, who saw it and said, "Oh... my... God," just brought in some Benefiber to add to her formula to try to keep that from happening again. Bless her little narrow hiney, it was like passing an entire raw potato. No warning, either, because she's been having dirty diapers all along. We don't know where this one came from, unless she's been sneaking out and going to Krystal or something.

We expect her to be in the hospital until at least Monday, at which point she will have some urinary tract exams and possibly a bronchoscopy if she has not cleared up by tomorrow on some of her lung stuff.

Hannah hospitalized again

2004-12-31T13:35:00.000-05:00

Hannah is back in the hospital again. In fact, I am writing this on a laptop from the hospital hooked up to a phone line, so I will make it brief (no one can call in while I am doing this).

On Wednesday she was having breathing challenges, lots of phlegm, a low-grade fever, and lethargy. Janet took her to the pediatrician, who told her to take Hannah to the ER at Children's Hospital. She has another urinary tract infection and something going on with her lungs, but she is responding to treatment (two IV antibiotics). She will be here at least until Monday, Jan. 3, at which time some urinary tract tests (such as an ultrasound to look at her kidneys) will be run.

She is doing much better today. We will be spending New Year's in the hospital.

Fortunately, we are in the new part of the hospital. Much more room, much nicer facilities--we even have a shower! Joy! It's funny how important the little things become.

I'll post updates as I have a chance.

2004-12-03T10:03:00.000-05:00

Here's Hannah's first Santa picture. They really seemed to connect. Notice how they're gazing at each other. Unlike our other kids, Hannah had no fear of the Big Guy at all.

2004-11-28T15:38:00.000-05:00

I don't think we posted this back in August when it was taken. Here's Caty and Hannah examining a toy together.

Of blogs and browsers

2004-11-22T22:00:00.000-05:00

Learned a little more about the blog today, and browser compatibility.

I've been a fan of Mozilla and later Firefox for awhile now, but usually if a site will work well in only one browser, it will work in Internet Explorer. Consequently, I didn't realize until today that our sidebar wasn't loading properly in IE, when I happened to be on a friend's computer and saw it that way for the first time.

I thought something was wrong with the template, but got the same result with each one. Everything looked fine in Firefox and Mozilla, but messed up in IE.

I finally figured out it is because under our old template (which had a wider message area) there was room for the photographs as we laid them out using tables. Those same tables are wider than the message area in the newer templates, though, and that messes up the display in IE.

As it happens, those tables were designed to hold the photos that got lost when the computer crashed anyway, so I will probably just take those messages out altogether and repost the pictures later using newer software that is designed to ease the posting of photos to blogs.

Anyway, I thought it might be useful to those of you who view the site in a browser to know what's going on. If you're one of the 94% of computer users who use Internet Explorer, your viewing experience has been less than ideal since, probably, June. I have now fixed it so that IE views the site as well as Mozilla or Firefox--or, at least, I've fixed the main page and a couple of archives. For the rest of the archives, it's just too much work right now. I'll try to fix them as I have time, but in the meantime perhaps you'll understand why the formatting is not perfect.

And I apologize if you get this more than once--I may have inadvertently let it get out in e-mail earlier than it should have.

By the way, I would encourage you to try out Firefox and/or Mozilla. Both are free, both outperform IE (in my opinion), and both are more secure than IE (in my opinion). You don't have to uninstall IE (you can't!), and you can choose which one to have as your default browser, even if you install all three.

2004-11-22T17:44:00.000-05:00

A little bit of news about Hannah. We took her for what we thought was going to be just an evaluation at the UT Speech and Hearing Center today, and she wound up getting fitted for a special "hearing aid"! It's not the kind of hearing aid you and I might think about--you know, amplifiers. This is an FM sender/receiver combination. The hearing aid has the receiver, and mom and I will have the sender/microphone, so that she hears us without being confused by the background noise.

More about this later. But we're encouraged!

2004-11-13T13:26:00.000-05:00

By the way, if you haven't noticed directly on the blog, there are a couple of things you might find useful.

We have the newsfeed working. If you're getting this via email, you may want to investigate RSS software and subscribe that way--but only if you get several other newsletters that way also. You can look on the blog site for an earlier post about what's involved, and an even earlier one.
We have enabled comments on the blog as well. So if you would like to have a conversation with us and with other readers, you are welcome to do so. Just click on the "X Comments" (where X is the number of comments posted) at the bottom to read the existing ones and find a link you can click to add your own.

Again, thank you for your interest in our family, and especially in Hannah.

2004-11-13T13:04:00.000-05:00

Haven't had a chance to update for awhile. Does this sound familiar? :) It probably won't change for awhile, but we'll update when we can. We're really grateful for your interest.

Here are several bits of news since the last real news post about Hannah:

Hannah has had another swallow study. If you don't know about these, the first one kicked off the entire sequence of events connected with her g-tube and digestive challenges. The first one, done January 2004, showed she was aspirating most of what went in her mouth. We had hoped the followup in September would show improvement. Instead, it actually looked worse. Almost everything that went into her mouth went in her lungs. So she will continue on the g-tube indefinitely.
She's been put on several different high-dollar drugs. After the swallow study, she developed respiratory problems that almost went into pneumonia. Tests showed the presence of pseudomonus, a bug typical of children with cystic fibrosis. She doesn't have CF, but she has a lot of the pulmonary issues that CF kids have. Lots of snot, for instance. That makes a fertile environment for pseudomonus to grow, which irritates the lungs, which causes more snot, which gets a vicious cycle going. They put her on TOBI, an inhaled antibiotic that cost nearly $3,000 for a month's supply. Each application (two a day) took about 15 minutes, and she hated every minute of it. Next, they've put her on colistin, an antibiotic originally intended for intramuscular injection, but that they're having us put in her nebulizer for inhaling. Also nearly $3,000 for the three weeks she is supposed to be on it, also twice a day, but it only takes about five minutes to give (it smells like sour cream, too, which is odd).
I think she's gotten her own wheelchair since we last posted. Well, I know she has gotten her own wheelchair, it's just the timing I'm not sure about. It has made a huge difference in being able to take care of her and take her places, because it has a head rest and padding and support mechanisms that hold her in the perfect way for her to be able to sit up and look around. She experiences more of the world because of it, and that is good for her.
Hannah has been evaluated by ETTAC. That stands for East Tennessee Technology Access Center. They do a lot of things, but the practical and immediate thing is that they modify toys so that by pressing a switch, the toy will do what it is designed to do when a non-challenged child plays with it. It's not just nice for Hannah. It helps her to learn cause-effect relationships ("when I press this, it does that"), which is an important part of learning. The evaluation itself gave us a lot of hope, because this trained observer noted that when you asked things like, "Where's the ball?" Hannah looked at the ball, even though she couldn't pick it up. They also saw that she pressed the button on some of their test toys--not at random, either, but on purpose. It's a very important milestone. And, she pressed buttons on a gadget that can be recorded with words that will thus, in essence, speak for her. The observer believes that Hannah used the machine to ask for a hug, for instance. I can't tell you how much that means to us, and they are going to be working with us to get such a machine for Hannah.
Hannah is going to get evaluated as a candidate for a machine to help her hearing. I'm not completely sure what it is, but her Ear, Nose, and Throat specialist thinks she might benefit from it (it's not just a hearing aid, but that's all I know right now), and she will get evaluated at UT Hearing and Speech on Nov. 22.

I'll post more later. Let's just say that, for the most part, we have had a lot of good news, although the challenges certainly continue.

2004-11-01T16:55:00.000-05:00

Believe it or not, we've already decided on a format. Those of you who get the Blog in email may want to get a newsreader, add our feed to it, and then unsubscribe from the email version.

You can get the feed details by clicking on the "XML" logo that should now appear over on the right-hand side of the page. If you have any trouble seeing it, the feed address is:

http://feeds.feedburner.com/KinglyNews

It matters, by the way, that the K and the N are capitalized.

By going with Feedburner.com, we are able to have versions that work with older RSS-only newsreaders as well as newer ones that are either Atom-only or both.

Thanks!

2004-11-01T16:09:00.000-05:00

We're going to experiment with a publishing innovation to see if it will be preferable to some of our friends who like to keep up with what is happening with us. Right now, you see our new posts in one of two ways:

Going to the Blog and reading it when you think to check, in which case there may or may not be any new information.
Getting a copy of the latest post in email. Those of you who have followed us for awhile know that we've had ongoing trouble getting the email tie-in to work properly, i.e., sometimes it wouldn't send a copy of the post, and sometimes it would send the latest post and the next-to-latest post that you had already seen. Annoying. But at least you got to see it as soon as it was posted.

An innovation in Web publishing involves news feeds. Some are tied to Web sites, and some are tied to Blogs, but they all use a format called XML and they all can be read by newsreaders. It is a technology that is new enough to lead to format wars (remember Betamax vs. VHS? DVD+RW vs DVD-RW?), so which format we should use is not clear yet. It also takes either a separate reader (there are a lot of free ones out there) or an email program that is feed-enabled (either RSS, the older format, or Atom, the newer-but-open-source format that is likely to take over, the way VHS did and the way the PC platform did (not because they were better necessarily, but because the standards were allowed to develop)).

We are going to try to add the XML format to our site. If you know what that means, great. If you don't, you'll learn along the way (it is, after all, new). It doesn't involve any extra work for us, but it probably will require us to decide on a format at some point, or else work with a service that outputs our Blog in both formats. We'll keep you posted. Just watch for the addition of a button that will tell you the Web address of the newsfeed. With that address, you can add our feed to your newsreader account. Since every newsreader does this differently, I won't even try to tell you how to do it. But we'll list some links to some of the free readers after we've learned a little more about it ourselves.

It's worth mentioning that the major advantage of the newsreader is that it will check for new content on several sites all at once. If you were only going to use it for our Blog, it probably wouldn't be worthwhile. But more and more online newsletters are going to the format, since it's totally opt in and it isn't subject to Spam at all. And more and more Web sites are going to the format, since it gives you instant updates. So it's likely that you will find several of your favorite Web sites and email newsletters are available in the format, which will make it all worthwhile.

2004-10-12T19:45:00.000-04:00

I can't believe it's been since June since we posted! There have been several things that have affected the blog, some of which friends have noticed.

1) Right after we posted the mid-June pictures, the server on which we housed them crashed. The text for the blog is on one server, and the pictures are on another (our main server). When the main server crashed, it took the pictures with it, leaving the text behind. Our server had to be restored from a backup a couple of days old--prior to our posting of the pictures, of course. We didn't think it would be a problem, because we could just restore the pictures from the hard drive of my personal computer. But then,

2) My personal computer died. The CPU fan went out, which caused the CPU to blow out, which blew the power supply and fried some other components. Of course, that's the computer the pictures were on. We have stayed so busy since that we haven't had time to even pull the hard drives out to see if they survived. So I don't know if we still have those pictures or not. When we get a chance, we'll check, and if they're still there, we'll put them on the server again. If they're not, the raw originals with the creative names like M04980478q.jpg are still on Janet's computer. We just have to dig them out of the hundreds of other photos, crop them, resize them, and fix the contrast, then name them to the same name that is already buried in the code on the blog and post them. I can do that during a commercial, of course. [sigh]

Seriously, we'll try to get some real news up here. A lot has happened with Hannah since June.

2004-06-09T22:34:00.000-04:00

We are back home again, after another stay at the hospital. We took Hannah to the doctor for a followup to her visits last week, and a routine check of her oxygen levels showed her running dangerously low (around 89). Dr. Fox put her on oxygen and sent her to East Tennessee Children's Hospital in an ambulance, with the lights and sirens running.

To make a long story short, they decided she has asthma-like symptoms (nobody has actually called it asthma yet), and sure enough, she has responded well to such treatment. She's now on scopolamine, which reduces her secretions, and she breathes fairly quietly for the first time in months! The noise reduction is secondary, of course; the main thing is that it indicates an improvement in her breathing. She's also getting pulmicort twice a day, Xoponex as needed, a four-day round of oral steroids, and Singulair once a day. New medicines to get used to, but she seems to be doing well with them.

2004-06-06T17:53:00.000-04:00

OK, I thought I'd post something here.

As Donn mentioned, we went to Middle Tennessee for Zach's Dad's memorial. The trip was hard in so many ways. Craig's death was sudden and unexpected. He was older than me so I knew, in a way, that he would probably die before me, but I never expected it this early. I'm just very glad that he went relatively quickly. I know it would have been awful on him and Zach and all of us for that matter, if he had lingered on and on.

The memorial went well. I think I heard someone say that almost all of the other residents of the group home he lived in were there. (For those that don't know, Craig was in an accident in '90 that left him with brain damage and made it impossible for him to live without assistance. He had been in this group home for quite a while.) Craig's cousins were there. It was great to see them again. It had been a few years since we had seen Pat and Tom (we had met them for lunch on a quick trip to Massachusetts a few years ago) but we hadn't seen Peter and Chris in ages--probably 10 years! I just wish that Hannah hadn't needed the trip to the emergency room so that Peter and Chris could have met her. They had their daughter (whom I had not met yet) with them but the boys stayed back in Michigan.

We had dinner after the memorial with the family, Joanie (co-owner of the group home and Craig's first speech therapist after the accident), and our minister, Victoria Lafser, who had come over to do the service for us. She had never met Craig but she has known Zach and me for about 6 or 7 or so years. After dinner I left Zach with Pat and Tom and headed to Vanderbilt Children's Hospital to check on Hannah and Donn.

Since then we have had Hannah to the doctor several times. This past week we didn't like the way she was sounding, and after talking to the nurse on the phone Donn took her in. They sent them to the hospital for a chest X-ray and it was clear, so the pneumonia is all gone.

Thursday evening she was having some problems breathing and we started to take her to the hospital but managed to get a bunch of stuff suctioned out of her and she didn't seem as much in distress. We called the doctor's office on Friday morning and took her in then. We now have a nebulizer and are giving her breathing treatments four times a day. We have had to back off the size of her feedings too. She seems to be getting overly full but the doctor said that could be because of the breathing difficulties. So she is now only getting 6 ounces at a time.

As always, the insurance company has been wonderful. They bought us the suction machine and the nebulizer.

Today Donn headed over to Asheville to attend Jon's high school graduation. I would have loved to have been there too, but we thought it best that Hannah not make the trip. We are looking forward to having Caty come over for a visit this summer and spend some time with her sister and step-brother. Jon also plans to visit--but not at the same time! :) It's that sibling thing.

Here are some pics... [most removed until pictures can be recovered]

OK, this one is just cute.

2004-05-24T10:38:00.000-04:00

We'll learn something with this post. Our software has changed so that, perhaps, the problem we were having where subscribers received in email the most recent post AND the one before that (even though they had already received it once) may have gone away.

Mainly: Here's the brief version: we went to Gallatin over the weekend for a memorial service for Zach's dad, and Hannah wound up in Vanderbilt Hospital.

Unrelated info, but an opportune time to mention it: Hannah turned one year old on May 6. We "celebrated" very quietly at home. She is not old enough to recognize any hoopla, certainly not to realize it has to do with her, so we will wait until next year to have a fancy birthday cake for her to muck around it (one of the rites of passage of American childhood).

Here's the longer version: Thursday we drove to Gallatin to get ready for the memorial service on Friday. It's about a three-hour trip, so we weren't surprised that Hannah was a bit lethargic when we arrived. She also had a fever--but she often gets those when she's stressed, and it clears up quickly. She was coughing more than usual, but again, not unusual after being confined to her car seat for so long.

We had picked up a new suction machine on the way out of town on the recommendation of our physical therapist and our doctor, so we used that quite a bit Thursday night.

Friday morning Hannah had an even higher fever (got to over 103 degrees at one point), so after a phone consultation with Dr. Fox we took her to Sumner Regional Medical Center, the hospital in Gallatin. They took good care of us, but they obviously weren't really set up to handle little folks. They took chest X-rays, along with blood tests, and confirmed that Hannah had pneumonia. It was relatively little, involving a relatively small part of a lung, so we had "caught" it early. They gave her some antibiotic through an IV (she's already had more IVs than Dad has had his whole life), and called an ambulance to take her to Vanderbilt Children's Hospital (because they're a teaching hospital that specializes in children, and therefore more likely to be familiar with chromosome disorders). So she has had her first ambulance ride (something neither of her parents has ever done as the guest of honor).

The Vanderbilt folks were just wonderful. She went straight into a well-furnished and well-supplied ER room with lots of attention from two nurses and two doctors. She was transferred upstairs to a beautiful private room that was more like an apartment than a hospital room. The new children's hospital has only been open since January, and compared to the physical setting we were used to at East Tennessee Children's Hospital, it was luxurious. (ETCH is going through a renovation and expansion, and we hope it turns out similar to Vandy's.)

The quality of care rivaled ETCH's also, so we feel fortunate that Hannah has had excellent care at two children's hospitals. The doctors and nurses took great care of Hannah, and equally great care of Dad, who stayed with Hannah, making sure he was kept up to date, and that his food and personal care needs were taken care of. (Since we went to ER at Sumner and then straight to Vandy, Dad had no chance to go to the motel room and get his overnight stuff.)

Janet went with Zach to his dad's memorial service, which was stressful on both of them, but it sounds like Craig had a beautiful service, and Zach did well. Despite the circumstances, it was good to visit with Craig's cousin Pat and her husband Tom as we cemented one of those odd relationships that characterize 21st century families. When we got home, we planted a tree in Craig's honor. Janet will tell you a bit more about that.

Anyway, Hannah got several doses of IV antibiotic, and then on Saturday they told us that she was stable enough that she could go home and us continue treatment with oral antibiotics.

The trip home was a bit hard on her, but she did well, and is getting several days of at-home pampering. As I write this, she is sleeping. When she sleeps, she breathes so comfortably and quietly. When she wakes, she coughs up a lot of stuff that we suction out--nasty sounding, but actually progress because she is getting the "stuff" out of her lungs.

Taking care of her has taken almost every waking minute since Thursday, but overall she has been so sweet about it. Of course, the antibiotics cause diarrhea, so just the "normal" care is taking a lot more time. But she continues to progress despite all this. For instance, on the way home she grabbed the tube that comes from her feeding bag several times (no danger of pulling it out--it was the end that comes out of the bag) and tugged around on it like it was a little balloon. She was obviously doing it on purpose, and looking at the bag as she jerked it around. Her "piano playing" continues to get more purposive also, as she pushes the button on her little five-button keyboard that hangs in her crib. With good support from our "team" and her own resiliency, Hannah is overcoming her challenges, and we are very grateful for all of it.

Easter pictures

2004-04-30T20:14:00.000-04:00

It's a measure of how hectic things have been that we haven't even gotten any new pictures up lately. Well, here's some! These are from Easter.

Before I get to them, though, an update on Hannah. She is up to 17 pounds, 6 ounces! Yay! We have also started using a medication someone in one of our online support groups suggested for granulation tissue. It's called diprosone. It's amazing stuff! Some of you have looked at the earlier picture of granulation tissue. We'll soon post a new picture that shows what diprosone can do. It is obviously much better for Hannah. She doesn't squirm now when we put her feeding tube in, and she doesn't struggle when we clean the stoma, so that tells me that she can feel what is happening with that granulation tissue, even though the medical folks say they can't.

Anyhow, here are the pictures.

When the going gets tough, the tough take a nap.

Look out, Easter Bunny. There's a new kid in town, ready to take over.

2004-04-06T00:05:00.000-04:00

We got word just a few minutes ago that Zach's dad passed away today.

For those of you who don't know, Zach's dad has lived in a group home for about 13 years because of brain damage he sustained in a helicopter crash.

I didn't know him very well. I came into their family some years after the accident. I visited with him a few times, sometimes when Zach would go visit.

But I know this much about him. In his own way, he was a quiet hero.

You see, he was piloting the helicopter that crashed. Craig loved being a pilot. He faced several challenges in order to achieve that dream--like, for instance, he was unable to serve in the military, and so didn't get the advantage that many pilots of his generation received in terms of flight training. He did it on his own, paying out lots and lots of his own money. When he needed eye surgery, he had to get a special waiver from the FAA to be able to continue flying. He did whatever he had to for that waiver so he could continue flying.

The helicopter service he flew for has operated taking tourists for aerial tours over the Great Smoky Mountains for 20+ years with only two accidents. His was one of them, through no fault of his own. Let's just say there were maintenance issues that surfaced later. Regardless, while conducting a tour with passengers on board, the rear rotor stopped working.

If you know anything about basic physics, you know a helicopter has a rotor on the rear because the torque of the main blade tends to make the helicopter body spin in the opposite direction. The rear rotor counterbalances that. Without a rear rotor, a helicopter will spin out of control. It will crash. A pilot can either bail out and save his own life or fight the controls to lessen the effects of impact as much as possible.

Craig stayed at the controls. He brought that helicopter down with as much skill as any human could have managed. His passengers walked away without a scratch. Craig died on the way to the hospital, two or three times, and came back each time. He lived, but with serious brain injuries. His flying days were over.

Craig lived quietly in a group home in middle Tennessee, convinced that he could still fly a helicopter if they would only release him. He kept his impossible dream alive, and although those who loved him told him that he could no longer fly, no one had the heart to convince him too thoroughly.

Today, the day after his only son's 15th birthday, Craig suddenly passed away. Yesterday he was fine. Today he had trouble breathing. They took him to the hospital, where they said he had viral pneumonia. This afternoon, he took flight once again, no longer bound by physical limitations.

Please keep Zachary, and Janet, and all of us in your prayers.

2004-03-31T14:07:00.000-05:00

I've been trying to get time to update about what is happening with Hannah, as well as the rest of the family, and haven't had much luck. I am copying a couple of paragraphs from an email I sent to one of our friends and posting here just to get a brief update--read between the lines to see what must have happened in the meantime. A little later I hope to post something about the rest of the family. Copy from email follows:

Sorry for the delayed reply. Hannah was sick yesterday and we spent the whole day at the doctor's office. Once again threw our schedule off--like it wasn't screwed up enough already. :)

Hannah is gaining a good bit (she is up to 15 lbs., 13 oz.!). We're getting used to the effects on our time and schedules. Her current challenge is a urinary tract infection probably resulting from diarrhea induced by the antibiotic with which we were treating her respiratory infection (which she still has). But the treatment yesterday seems to have made a great deal of difference already, and she seems to be doing better. Janet will take her back to the doctor this afternoon for an update.

2004-03-21T15:37:00.000-05:00

Hannah continues to make strides (metaphorically speaking). From March 8 to March 15, she gained 14 ounces! On March 19, she had lost 2 ounces, but that's still a net gain of 12 ounces for the period. We'll see tomorrow what she's doing right now. You can see her cheeks filling out a little bit, and her ribs aren't quite so prominent.

Dr. Schindel, her surgeon, thinks she's doing great, and that she might grow enough to have her button replaced in about two months. Meanwhile, he treated the granulation tissue with silver nitrate (which basically burns it away) and showed us how to use it so we can treat at home.

Janet had a necklace made to represent the family members. Here is a picture of it. You can see the stones; you might like to know it's on a 20-inch chain. You might also like to know you can click on the picture to go to the Web site of its maker.

2004-03-12T22:17:00.000-05:00


Miss Hannah out for her constitutional.	After a nice ride, one needs one's hair taken care of.

	Miss Hannah seems quite comfortable, despite the fact that she is resting in Janet's desk drawer.
	Let me get a closer look!


Do we have to do this picture thing?	OK, maybe it is funny after all

Zach seems displeased with his heart, doesn't he? Hannah lovingly gave this to him, made with her very own spit.

If you really want to see what granulation tissue looks like, click on the thumbnail at the left. Don't look unless you really, really want to see it, though. It's a very large image, and will take awhile to download, especially on a dial-up, so be forewarned.

2004-03-01T21:42:00.000-05:00

We finally noticed something strange today. We've told dozens of people about Hannah going from 13 pounds 6 ounces to 14 pounds 1 ounce, and have exulted over the "7-ounce gain!" It's even in the last post. I thought about just editing it, but it's too fun to tell this story on ourselves. Did anyone happen to notice that the difference between 13 pounds 6 ounces and 14 pounds 1 ounce is more than 7 ounces? Janet felt a little foolish, but then, nobody else seems to have caught it either. I certainly didn't, and I'm supposed to be a copy editor. What it means is that Hannah didn't gain 7 ounces from Monday to Friday last week. She gained 11 ounces! Whoa!

(Janet here... I have always been somewhat measurement challenged. I can m"measure" with my eye but numbers? Forget it! I think I was thinking in feet... 12 inches to a foot = 12 ounces to a pound! Hey! If it's not in 10's... )

When we realized that, we decided that this could possibly be too fast, and that if she has that rate of gain when we go to the doctor for her nine-month checkup tomorrow we're going to talk to the doctor about possibly backing off on her calories.

On the other hand, when they weighed her last Friday she was just starting to dirty her diaper. Maybe it was quite a load she was waiting to get rid of!

2004-02-28T09:18:00.000-05:00

Haven't had time to update in a couple of weeks, but we've generally had good news!

Hannah is adapting well to her new gastric tube. We went to the surgeon a week or so back, and he was very "impressed" with the way she was healing. We, in turn, are impressed with Dr. Schindel, who took the time to talk with us and draw diagrams and let us know everything about what is happening with her from his viewpoint.

We have moved Hannah from continuous feed to "modified" bolus feeds. True bolus involves giving her the target amount in a half hour. As we work up to that, we are giving her a target amount in an hour. Basically, four ounces in an hour every three hours. That gives her two hours out of every three free of the tube, and also gives her an apparently satisfying full feeling (she gets still and relaxed). She still get the continuous feed overnight.

As a result she's getting around 24 to 25 ounces every day—anywhere from four to nine ounces a day more than what she was getting. That has also resulted in a weight gain! Yay! Yesterday, she weighed 14 pounds, 1 ounce. That's a gain of 7 ounces since Monday! This is a record weight for her. More importantly, her ribs don't show so much, and she's getting just a little healthy bit of pudge under her chin. Everyone in the doctor's office celebrated. (The pharmaaceutical rep that was there probably thought we were all nuts but then he doesn't know her history.) Our actual doctor was not in the office, and the nurse who usually helps us said she was going to call her at home to tell the doctor the news. That's how closely they're following this little girl.

She is also starting to follow and respond more to voices. We are changing her therapy a bit so that her PT and OT are co-treating on Fridays. Her OT thinks the current arrangment might be overstimulating her a bit, and since they are working a lot of similar things she thought it might be a good idea. So she will have one and a half hours of PT, OT and Speech on Mondays and then one hour of PT/OT and Speech on Fridays.

2004-02-10T20:54:00.000-05:00

Here's something new for our friends and family. Those of you reading the Blog, obviously, know that it's here, but it can be frustrating to check it every so often--sometimes there's a lot of news, and sometimes there's no news. You're welcome to check like that, of course, but we have added an option so that when we post something new, you can get a copy in email. It uses a mailing list program we have that is intended for listserv-type operations, but can be used to distribute a subscription, i.e., where no one can post to the list except the publisher. We have set it up that way, and have the Blog site as the publisher.

If you find it annoying after you have subscribed (maybe you prefer just reading it when you feel like it), you can unsubscribe--it won't hurt our feelings. But if you would like to not think about it at all, and just let the software send you news when it's available (and not have to depend on us to remember to notify you), then try the subscription. The list is protected from view by anyone except the two of us, so that you won't have to worry about your address becoming available to Unsolicited Commercial Emailers.

There is a new link in the lefthand navigation bar, but just in case it doesn't show up for a little while, you can subscribe by going to http://mail.soapboxorations.com/mailman/listinfo/kinglynews_soapboxorations.com.

2004-02-10T18:31:00.000-05:00

Today was an early and long day (and it ain't done yet!). I'll try and catch up here.

We survived another 11 days in the hospital. (We figured out that Hannah has spent 28 days in the hospital since birth.) Hannah came home on Wednesday and then promptly got sick. We took her to the pediatrician on Thursday and she tested positive for a viral infection. We had stopped her continuous feeds and her Reglan when she started acting sick. We also came home from the hospital with a feeding pump. Hannah is now getting fed pretty much continuously. With next to no energy being used to eat now, she should start gaining weight again.

Yesterday (Monday) we resumed PT, OT and Speech. They were all glad to see her, but she really whined at them all pretty much the whole time. I think she had thought "Good, I've gotten rid of these people who torture me" when we hadn't been going. Surprise, Hannah! We're back!!! Then we went to the pediatrician for a weight check. 13 pounds even. Up 5 OUNCES!!!!! Everyone was thrilled. And they have now ordered "thumb gloves" for her to try to get her to keep her hands open more. These are tiny neoprene "gloves" that just wrap around the palm and have holes for the thumbs. They make the thumb stick out so she can't wrap it up inside her other fingers like she tends to do.

Back to the Reglan... We came home from the hospital last week with a prescription for Reglan. They had taken her off the Zantac after the surgery and put her on Reglan. We took it to the pharmacy to get it filled. Simple, right? Not necessarily! When I went in to pick it up they had trouble finding it. That was because they had it set aside on the counter. There was a question on what part of the prescription said, and they wanted to make sure that we knew how it was to be taken. The pharmacist showed me the prescription. It said 2.5 cc PO and then there was the part that the pharmacist couldn't read. Well, I couldn't read it either! The bottle reads 1/2 teaspoon by mouth 4 times a day. I mentioned that Hannah is not getting ANYTHING by mouth and we surmised that the "by mouth" was what we were working towards. WE knew that it wasn't to be given by mouth. When we went to the pediatrician on Thursday (because of the viral infection) we mentioned the Reglan to the Dr. (not Hannah's regular doctor but still very good and we like her too). She seemed a bit surprised by the dosage. So when we got home Donn went online and started looking for the pediatric dosage for Reglan. He found a reference to it listing .6 cc (based on her weight)!! BIG difference! He called a pharmacy and also called Children's Hospital, talking to one of the nurses who took care of Hannah while she was there and they both verified the .6 cc amount for her weight. Donn also called the surgeon's office and talked directly to him. He didn't have the prescription right in front of him, but verified that it would be reasonable to give Hannah 2.5 cc divided into 4 doses over the course of a day. (Note: this is NOT the usual way of writing a prescription.) So the pharmacist, unable to correctly read the prescription, had dispensed it with instructions for giving her 4 TIMES the correct dosage 4 TIMES a day! You don't give ANYONE that! Especially someone who weighs less than 13 pounds! From what a friend of ours who is a neonatal nurse told us, that could have been lethal. Donn went to the pharmacy yesterday to get a copy of the prescription and he was told that they did try and call the doctor's office but didn't reach anyone. Is that a reason to just guess? I feel that when I came to pick it up they should have just told me there was a question on the prescription and I would have to wait until they could reach the doctor. I wouldn't have had any problem with that. I have a BIG problem with them giving my daughter a major overdose of the medication!

[stepping down off soapbox]

We headed to the hospital for the larangoscopy and bronchoscopy early this morning. We had to have Hannah there by 7:30 a.m. I had forgotten that the doctor was going to also look at her esophagus if the GI doc didn't want to do another procedure that would cover that part. We got Hannah checked in. (Another soapbox thing. When they went to weigh her I asked if they wanted her clothes off and he said it was up to me. Wrong answer!!! If you are going to put my 13 pound daughter under anesthesia you get an accurate weight! And that doesn't include a diaper and warm (and heavier) clothes! I made him wait while I took her clothes off.)

We got Hannah checked in and then took her up to the surgical floor. They took her from us and we went to the surgical waiting room. Next thing we knew the doctor was at the door looking for us. He took us aside to a little room and asked when they did the Nissen fundoplication. We told him that it was done when the G-tube was put in and that they were supposed to let him know. They had him on the consult list from what we were told but he was never consulted. Not even a courtesy consult to let him know she was in the hospital. (Although he did know she was there because he spoke briefly to Donn when he came in to see Hannah's roommate prior to Hannah's surgery. Ethically he couldn't really look at her without the consult. We told him that they were supposed to be contacting him but looks like they never did.) Because of the fundo he wanted us to know that he could not do the esophageal part of the scoping that he was going to do.

The doctor came back to the waiting room after the procedure and brought us pictures (the pink dots attached here) of his trip down Hannah's throat. He said she did fine and that he saw no major scarring in her lungs, and it's nice and pink. Man, is it PINK!

Like Fantastic Voyage, heading down into the lungs. Upper left, just above the larynx (esophagus is visible below it). Upper right, a closer view of the larynx with vocal cords clearly visible. Lower left, just below the vocal cords. With children who have laryngomalacia, this area is often swollen; it is normal in Hannah. Lower right, on down into the "windpipe"; you can see the cartilage rings from the inside that you can feel on the outside a little bit.

These are the various major pathways inside Hannah's lungs, where the lobes branch off. There is some mucus from the viral infection, but no indication of bacterial infection or scarring.

We are now home and she is whining up a storm. She wants to be held constantly, something we are trying to avoid. We don't want her used to that and definintely don't want her thinking that all she has to do is whine a little to get picked up. Unfortunately this means having to listen to the whining.

2004-02-04T16:55:00.000-05:00

Hannah is home from the hospital. She is a little fussy, but all in all doing well. I promised an update last Friday, and haven't had time to post one, and today I'm going to just post this quick one so people will know we're home. More tomorrow, maybe. :)

2004-01-30T21:43:00.000-05:00

This has been a very busy week. I'll post some quick details, and update it later.

We took Hannah to the emergency room Sunday afternoon after she threw up and choked following a feeding, and then was very lethargic. Her lungs are OK, and it turned out she had a urinary tract infection, which was causing the throwing up/lethargy.

She had the NG (feeding) tube back in because a swallow study done last week showed that she was aspirating food into her lungs when she eats. She can have nothing else by mouth unless and until she grows out of that (along with laryngomalacia, she has a floppy airway, which could strengthen as she grows). They were going to put a G tube directly into her abdomen for feeding; since she was in the hospital for this other anyway, they decided to go ahead and place the G tube and Nissen fundoplication (which prevents acid reflux from backwashing and getting into her lungs).

Hannah made it into the operating room about 1 p.m. Thursday, and came through the surgery with flying colors--no need for oxygen afterwards, or any special breathing help (they sort of thought that they might have to intubate her again because of her history). She spent the night in Pediatric Intensive Care Thursday night just as a precaution (again, because of her history), which gave us a chance to come home and get a night's rest. They moved her to the second floor late this afternoon, and they'll probably keep her another four or five days while she heals and we learn how to deal with the new feeding system. Janet and I will continue alternating spending nights at the hospital, and pretty much alternating days going into our respective offices to get work covered. (I'm still pretty much just covering my Web classes in the little bit of time I have--unfortunately, other things are going by the wayside for now, including paperwork-type things.)

More later.

2004-01-24T22:23:00.000-05:00

We went to the Pediatrician yesterday for Hannah's weight check. She had actually gained 2 ounces. We weren't all that surprised as she has had the tube in for several days and is expending NO energy eating anymore. She now weighs 13 pounds and 4 ounces again, one ounce shy of her highest weight.

We talked with the doctor about the results of the swallow test and some concerns we had about tube placement and, since we were meeting with the GI doctor later in the afternoon, she wrote an order for us to have some x-rays at Children's Hospital, right across the street.

We met with the GI doctor and she decided that she doesn't need to do any scope procedures on the 10th but that a "Gastric Emptying Test" needs to be done and that Hannah needs the G-tube and Nissen. We do the test on the 5th and meet with the Pediatric Surgeon on the 6th. All this on top of her therapy and weight checks!

We also had the x-rays and we are hoping that since we didn't hear from the doctor that everything was within "normal" perimeters, whatever those might be.

Hannah seems to be tolerating the tube pretty well. The Home Health folks got us some longer tubes so when we have to change this one we can use one of the new ones and have some extra "leash" to work with. It can be a challenge to feed her when he head is moving around when you only have about 6 inches that isn't taped to her face! The longer tube will also alow us to tape it to her back and maybe thread it through her clothes, making it harder for her to get to. And the tube makes it a heck of a lot easier to get her full dose on Zantac into her! The liquid version of that stuff is VILE!

Zach has had a good weekend. He bowls on a YABA bowling team and had a great game today. He ended his first game with FOUR STRIKES IN A ROW and scored a 186, beating his previous high score by a whopping 13 pins!!! YEA ZACH!!! His average starting out today was also up a few pins to 125. The second and third games weren't quite as good, 111 and 108, but hopefully his average will go up a few more pins next week. It's something he is good at and really, really enjoys!

2004-01-20T18:11:00.000-05:00

We're still dealing with the latest news on Hannah. She went to East Tennessee Children's Hospital today for a "swallow study." Basically they fed her barium in various consistencies to watch on X-ray how she swallowed stuff. More details will come from the study, but the preliminary results show that she is not protecting her airway. That means when she eats, or when she has reflux, stuff can easily go in her lungs. This can lead to pneumonia or suffocation.

I had assumed that if the malacia was bad enough, they might have to do surgery to correct it. I was wrong, because it's not JUST extra tissue. It's also a "floppy airway." It will be up to the specialist we'll see on Friday, but our pediatrician has said the likeliest course of action will be to put in a gastric tube (which means they'll put a tube directly into her stomach) and then a Nissen tie (which will tie off her esophagus so that nothing can go back up her esophagus). In other words, they'll tie off her stomach so that she can't choke from either end, and the result will be that she will have to get all her nourishment through the tube.

Needless to say, we're a bit distraught over this. We have to immediately put the nasogastric tube back in and feed her that way until they decide. She will go in the hospital on Feb. 10 to have a laryngoscopy and bronchoscopy (they'll look more deeply into her lungs), which will require anesthetic. While she's under for that, they'll likely do the other surgery at the same time.

Hannah needs serious prayers. We all do.

2004-01-12T17:04:00.000-05:00

It's been a while since either of us posted... I think things are settling down now after the holidays. We tried to take it easy and not get caught up in the commercialization. I think it worked. We put up a tree and some outdoor decorations, but I didn't make Donn climb up on the roof to hang the icicle lights this year. Hopefully next year. Or maybe over the Summer...

Hannah has been continuing her twice a week therapy. Her speech therapist suggested a swallow study. This had been mentioned before, but at the time Hannah was in the hospital and they couldn't really do it and expect to get accurate results. The doctor has ordered one, and we are currently waiting for the hospital to call us and set it up. And her speech therapist will be starting to work with Hannah on solid foods to see if we can get her to eat again. She hasn't eaten solids since before the hospital visit for the RSV in November!

Hannah has also been continuing the twice a week weight checks, but no gains lately. She weighed 13 pounds and 5 ounces on January 2nd, 5th AND 9th and today was 13 pounds and 4 ounces. :( The doctor said that if we can't get at least 18 ounces a day in her we'll have to put the tube back in. So far today she is up to 13 ounces and it's only about 4:45 pm. She will be getting her next RSV shot on Friday and at the same time get her second flu shot. We are so glad that the insurance company approved the RSV shots!

Therapy-wise she is doing well. She seems to be starting to try and "grab" things but, unfortunately, she does it with a closed fist. :) She will start with her hand open, arm out to her side, but by the time the hand gets to the front the fingers are all curled up! But she is trying! And paying more attention to things like that!

We were supposed to have Hannah's baby blessing and our house blessing this past Saturday. Unfortunately, Hannah's "Distinguished Angels" (Godparents) got sick and we had to postpone. In the confusion we managed to forget to let a couple of friends know and, because of that, we were blessed with a wonderful afternoon of chatting that we wouldn't have had otherwise.

I guess that is all for now... I'll get Donn to post a recent picture or two.

2003-12-30T13:14:00.000-05:00

OK, couldn't resist. Here are some more recent pictures.

You know, it has occurred to me that if we could somehow get a patent on "cute baby," we could really clean up. How does she manage to look like this in every single picture? Somewhere between wonder and surprise, as if she's never seen a camera before.

"OK, honey, now look like a kewpie doll. Good, good!" Doesn't combing her hair a different way make a big difference?

They make a good team. We're trying to teach both of them to smile. Hannah doesn't know how yet, and Zach doesn't see a reason to—at least, not at the moment. Wait until the hormones settle out a bit.

Here we go! Santa and helper ready to deliver presents (figure out which is which). Hannah was obviously surprised by yet another papparazzi. (This was before she pulled the tube out.)

Getting ready to try out for the Rockettes, Hannah is obviously suspicious about this whole process. Who is that person with the camera, anyway? Does she have authorization to be in this dressing room?

2003-12-29T21:23:00.000-05:00

By the way, we have new pictures. Hundreds of them, actually, but here are just a couple of them.

	Hannah likes to ride around on someone's shoulder—probably second or third favorite position. At left, you can see her enjoying a ride. Below, she's working hard at keeping a grip on two things at once—already has more coordination than her old man! Her cheeks have really gotten chapped in the recent weather, but lots of lotion is making it better.

2003-12-29T17:10:00.000-05:00

We had a relatively relaxing Christmas break. Friends came over on Christmas Eve, but otherwise we have just "stayed home" and taken it easy--no partying, very little running around shopping.

We had hoped by this time to have Caty visiting with us, but she postponed it from last Saturday to today for us to pick her up, and in the meantime had a relapse of the flu, so for now she is not coming. I am disappointed, but we understand. She hopes she can come down the weekend of Martin Luther King Birthday, since it will be a long weekend.

Hannah pulled her feeding tube out again on Dec. 21, but we really hadn't given her anything by tube except her Zantac since Dec. 13, so the doctor decided we could leave it out until she had one of those 13-ounce days. So far, she's kept up her "production" at 17 ounces or higher.

We've started sticking with the scheduling thing (which we all temperatmentally resist, but which appears to actually be needed by Hannah)—we offer Hannah six ounces, of which she typically takes five or five and a half within 20 minutes or so, and then we don't feed her again for three to three and a half hours, ensuring that she is hungry enough to eat fast enough to fill up before she tires out.

But she has stopped gaining again. The doctor says that if she doesn't gain by Friday, the tube has to go back in AND we will start giving her as much as she'll take in ten minutes and then give her the rest of it by tube, to get her used to taking as much as possible in ten minutes. And we will also have to get up in the middle of the night to give her a complete feeding by tube, in order to get the day's total up to 24.

We really hope she gains, because Janet and I are both already exhausted, and don't need to have to get up in the middle of the night (a complete tube feeding would take at least a half hour, and more like an hour).

2003-12-19T18:41:00.000-05:00

Well... it's been a busy week. Hannah pulled her feeding tube out on Wednesday morning while we were getting ready to head to therapy. All it took was Donn looking down to tape the diaper... that was enough time for her little fingers to hook the tube and pull it all the way out! Since Home Health was already scheduled to come out on Thursday to teach Donn how to put the tubes in we just clipped it at either side of the tape and let it go like that for the day. She has been doing pretty good about taking formula by mouth for the past few days so figured it would be ok.

Thursday Donn learned how to "re-install" so now we are pretty much on our own if she does that again. We have started putting those little mittens they use to keep babies from scratching themselves on her at night so her fingers are less likely to snag the tube during the night.

Today we had a weight check and, although the news wasn't great, it was positive. Hannah gained one whole ounce! The important word there is GAINED! So far today she has taked 17 ounces and all by bottle. We should be able to hit 19 or 20 by bedtime. We'll see if we can keep that up this weekend and if it makes a difference.

Tomorrow is the YABA Christmas Bowling Tournament. It's a Youth/Adult match so Donn and Zach will be bowling as a team. It should be fun to watch. Zach's average has gone up for the past couple weeks and with last weeks scores it should go up a few pins this week too! He's really doing well with it.

2003-12-15T17:32:00.000-05:00

Bad news! Hannah lost weight over the weekend, down to 13 pounds, 1 ounce. Fortunately, the doctor didn't seem too concerned--she's looking for overall pattern, so as long as the trend is upward, and averages between a half pound and two-thirds pound weigh gain per day, she'll be OK. I am so hoping we can get the tube out, though. Friday night Hannah managed to pull it all the way out. We found her with it flopping around Saturday morning, still taped to the side of her head. The home health folks had to come out and put it back in again (and this time they taped it more securely, with different stuff so her constant drooling doesn't make the tape come loose), and made arrangements to come back out on Thursday and teach me how to put it back in next time. Turns out the insurance company won't pay for them to come out and put it in again, so we have to learn to do it ourselves. And since Janet just can't hack something like that, it means I'm the one in the barrel on this one.

But she's eating a lot today, thank God.

Janet had her cataract surgery last Thursday and it went well. She had the patch taken off Friday afternoon and got to see Hannnah clearly for the very first time. (She took Hannah back with her when they removed the patch so Hannah would be the first thing she saw.) She is thrilled to NOT be seeing the little halos of light around headlights and street lights at night and can be heard giggling for what seems like no reason as she looks around when we drive at night. She goes back this Friday for another check up and will get new glasses in a couple more weeks. (The doctor said everything looked fine on Friday and there is no sign of a cataract in the other eye which supports the theory that this one was injury induced.)

2003-12-12T11:26:00.000-05:00

Good news! Hannah went for her Synagis shot this morning, and while there, she got weighed. She is up to 13 pounds, 6 ounces! Half a pound gained since Monday! All right!!!!

2003-12-10T23:30:00.000-05:00

Last Friday, they put the NG tube in Hannah, as Janet wrote about earlier. It was traumatic, but probably more so for Mom and Dad than for Hannah. Not that she liked it, of course, but the tube itself doesn't seem to bother her. I have to admit, though, that I am pleased that she continues to take most of her food from a bottle rather than from the tube. We usually only put four or five ounces a day through the tube, but we hope it's enough to tip her over into gaining weight. We've noticed that when she averages 18 ounces a day, she gains, and when she average 16 ounces a day, she loses, so that seems to be the critical point.

I almost froze to death in Asheville. It didn't seem all that cold to begin with, but we wound up sitting on the sidewalk in 35 degree weather for 90 minutes or so, and the cold just kind of seeped in. It was well worth it--I had a really good visit with Caty, got to catch up on my ex-wife's medical challenges (if that sounds sarcastic, it's not; I really wanted to know), and got to see Jon march. He is so tall! He sports a beard now, too. As he marched by with his drum corps, he looked so serious and tough. I couldn't resist looming out of the crowd and shouting, "Go, Jon!" He tried not to, but he grinned. After the parade, he walked back down to where we were and hugged me. I was so impressed! When I was his age, I'm not sure I was confident enough to hug my dad in public. I wish I had been, and I'm glad he is that self-possessed. Caty is just so full of energy, and Amanda is so in charge of her own life down in Columbia. They've all turned out so well!

Back home, Zach impressed me with taking on the Christmas decorations. Here at the end of the semester, I'm so overcommitted that I just couldn't even think about the tree until after we turn in grades (next Friday), so Zach put the tree together and decorated it on his own. It's wonderful! And without being asked, he put away the dishes. He's really taking on responsibility.

Janet will have her cataract surgery tomorrow. That's what's been causing her the vision problems. They think it probably resulted from an injury she received over 30 years ago! The prognosis is good, because, as the doctor said several times, she's so young. I'll post an update about that, since she doesn't write a whole lot about herself.

2003-12-05T14:15:00.000-05:00

We have had an awful lot going on lately. We got together with TEIS (The early intervention program) for program planning this morning and that is now in place. there is even a provision to help pay travel to and from therapy! THANK YOU, GOD!

Hannah starts Speech Therapy on Monday and will go twice a week, Mondays and Wednesdays. She will do PT the same days. (The regular Speech gal just went on maternity leave and they are short handed for a few weeks. When they have it covered we'll go back to Monday/Friday.) Hannah also has an Occupational Therapy evaluation next week. Then we'll fit that in the schedule somewhere too.

We did PT this morning and then went to the doctor's office for a weight check. The news there wasn't good. Hannah, who we thought had started finally gaining weight (She had gained 5 ounces at the last weight check,) had lost an ounce. So we are having to have the NG tube put back in. :((( The doctor's office is having Children's Home Health call us to set up when to come out. They will insert the tube and teach us what we need to do with/for it. She said they will also come out, probably once a week, to replace the tube. Hopefully this is a temporary measure.

Children's Home Health just called. They are leaving there now so should be here in 45 minutes to do the tube. I'm not really dealing with this well. I want what's best for her but at the same time I'm sure that the tube is uncomfortable and I don't want Hannah to be uncomfortable. I'm also concerned that we be able to care for it correctly. Donn probably won't be here when it's done so I hope that I pass on all the info correctly to him.

I keep thinking about the tag line one of the moms in a support group we're in uses... It's attributed to Mother Teresa... "I know God will not give me anything I can't handle. I just wish that He didn't trust me so much."

I think I know how she felt. But at the same time, if it meant we didn't have Hannah, I wouldn't change a thing.

Donn is going over to Black Mountain tomorrow to see Jon march in a Christmas Parade. It is also Caty's 12th birthday so he will get to spend some time with her for that. They are calling for it to start snowing tonight so I hope it's not too bad and the roads don't get too slick/icy. Because of the weather and the chance of her getting sick we decided that he'd go alone and we'd not take Hannah over and subject her to the cold. Hannah still needs to meet her biggest sister, Amanda, but hopefully she will be able to do that sometime over the holidays. Amanda is hoping to come over for a visit.

2003-11-23T21:20:00.000-05:00

WE'RE HOME!!!! We brought Hannah home from the hospital today. She went to Children's Hospital on Nov. 13. There are a lot of details we could put in, of course, blow-by-blow descriptions and such, but here's the gist of it, since she is already home.

On Nov. 12 she had been cranky and clingy all day. On the morning of Nov. 13 we couldn't get her to completely wake up (she even fell back asleep while having her diaper changed) and so couldn't get her to eat anything. She had a temperature of 99.6. After I took Janet to the eye doctor (and, by the way, Janet has a cataract, for which she will have surgery Dec. 11), I took her to work, and then brought Hannah back to Maryville to our pediatrician, who turned around and sent us back to Knoxville to Children's Hospital Emergency Room--ostensibly for tests to make sure Hannah did not have pneumonia.

They did all kinds of tests on her, including a spinal tap to check for meningitis (which came back negative). To make that long story short, the only positive they got back was for RSV.

I'd never heard of it. Apparently, they've figured out about it since my next youngest got too old to get it badly (while older people can still get it, it just causes a bad cold; it's much more serious for infants). It stands for Respiratory Syncytial Virus, "the most common cause of lower respiratory tract infections in children worldwide," according to the RSV Info Center. They say that virtually all children contract it by the age of three, and call it "the leading cause of pneumonia and bronchiolitis in infants." The nurses tell me it's probably always been around, but they've only been able to identify it in the last 10 years or so.

Getting this on top of Hannah's existing low weight gain problems made it particularly dangerous.

So she went from the ER into the hospital.

Because she hadn't been eating, they put an IV in her head. Evidently she had gotten seriously dehydrated, since her weight went from 12 lbs. 2 oz. at check-in to 12 lbs. 12 oz. that night. She continued not eating (the first thing they do when they have trouble breathing is quit eating), so they put a nasogastric tube into her to give her formula whether she wanted it or not.

We had learned from our previous hospital stay (the Ph Probe in October) that someone had to stay with her 24 hours a day. Both of us were there most of the time. We would leave to do what we had to work-wise and then come back.

We had the room to ourselves until about 2:30 in the morning on the 15th, when they had to move another patient in. His name was Darrell and we joked that it was now the "celebrity suite" as they even had the names on the door in the correct order to read "Darrell Hannah." When they moved Darrell in, Donn moved to the fold-out chair/bed and Janet slept in the crib with Hannah. Darrell was only there that night, so Saturday night we again had the room to ourselves and were able to spread out a bit. Sunday evening they told us that we could either get a roommate then or wait and maybe get one in the middle of the night. We opted to let them move one in then. Suffice it to say it was an eye-opening experience. Our last roommate was only there overnight and was probably the best of the bunch. On the last few days we gave in and swapped nights at the hospital.

The worst time was 5:30 Tuesday morning. She had to go back down to the ER for a doctor there to check her out, because she was having trouble breathing. They started her on breathing treatments every four hours and they seemed to really make a difference. They also put her on oxygen for awhile, first trying the cute little "bunny nose" mask, then going to the more traditional nose piece when the "bunny" kept hopping around her face from her moving around. Tape can only do so much! Pretty soon she was feeling good enough to fuss at the nurses when they took her blood pressure and temperature.


	(Clockwise from top right) The celebrity suite. We thought Hannah's tape jobs made her look like she had a hair ribbon (that was for her IV) and also like she was getting a granny wax job for her upper lip. The "bunny nose" oxygen mask is probably a hit with older kids, but it just bored Hannah (or ticked her off. Plus they had it on upside down here!) With her IV out and the oxygen removed, she has more moments of peaceful repose (only the feeding tube is still in for this picture). She had lots of help from lots of machines.

She is home now, and almost back to normal. We did win the battle of the microlipids, so they started her on those, adding them to her formula while she was in the hospital. We feared they would leave the NG tube in because of her weight issues, but they decided that the weight issues were really separate from the RSV, and that we had been wrestling with that anyway, so they removed it so that our pediatrician could try some other stuff. They can always put it back in if they need to--and we very much hope they don't need to. She had reached a high of 12 pounds, 12 ounces in the hospital (a lot of which was fluid) but was only 12 pounds, 8 ounces when discharged.

Hannah will go see the pediatrician on Monday or Tuesday so we can pick up where we left off. We hope she will also start back to PT on Friday. Meanwhile, Janet and I will struggle with making up for having lost 10 days out of our generally hectic life. For some reason, the rest of the world still expected us to do things like pay bills and get things graded.

2003-11-10T21:35:00.000-05:00

Last Friday we took Hannah back to the pediatrician for another weight check. She had gained 5 ounces and was up to 12 pounds and 6 ounces. At that point the doctor was still going back and forth with the insurance company.

Today she had lost an ounce and is 12 pounds, 5 ounces. Dr. Fox talked directly to one of the insurance company's doctors today (one that was on the panel that rejected the original appeal) and, although he had to deny it again, he agrees that it is a "medical necessity" for Hannah.

Unfortunately, what is holding it back is NOT the insurance company, it's their contract with the state, and that contract specifically excludes paying for "nutritional supplements." Next step is Donn calling the insurance companies case manager for Hannah and finding out where he can appeal it to. (He can appeal it to the state but we have to find out where he needs to call.) If that doesn't work, and Hannah doesn't respond to the higher calorie formula mix we have just started giving her, the next step according to Dr. Fox is a GI tube for feeding. I hope it doesn't have to go that route!

We are trying to give Hannah food whenever she wants. Her "dinners" are four courses... cereal, fruit, veggies and pudding. Then we wash it down with formula if she has any room left. :) Hopefully that will make a difference. Another weight check on Friday!

On the PT front she is doing great! She can hold her head up so much better now. I will admit that today it got to me. I never dreamed I'd have to help her learn simple things like this! Or have to take her to someone else to teach her! Mr. Tom is so gentle and patient with her. She is lucky to have him as a PT.

Oh... and here is the little pea pod on Halloween. And her brother's school pic. Good looking guy, huh?

2003-11-06T08:59:00.000-05:00

On Friday, the 31st, we took Hannah to the pediatrician for another weight check. She had LOST 6 ounces! :((( THe doctor asked us to bring her in again on Monday for another check. On Monday they found that she had lost another ounce over the weekend. Dr. Fox wrote a prescription for Microlipids to be added to her formula. We took the prescription to the pharmacy but they didn't have it in stock. They said they would order it and have it by 9 am Tuesday. Tuesday morning they still didn't have it. Tuesday evening they had it but they also told us that the insurance wouldn't pay for it. What they had gotten was in a case of 48 bottles at a cost of $130+ and they weren't willing to open the case. Yesterday we talked to the insurance company and the reason they won't cover it is because it's a "nutritional supplement" and they don't cover that. The doctor's office set up some sort of review to appeal it with the insurance company and I even heard from a case manager from the insurance company to make sure we knew what was going on. She had also talked to the doctor too. This morning we got a call from the case manager telling us that it had been denied. Next step (and I think this is what the doctor is going to do from the conversation I had with her nurse yesterday) is a peer-to-peer review where the doctor appeals directly to one of the insurance companies doctors. Hopefully we will hear back on this sometime today. There is another step if this doesn't work, Donn could appeal direct to the state, but I hope the doctor is sucessful. I don't see how we would have more pull than she would.

So in the meantime, we are getting as much into Hannah as we can. We go for another weight check tomorrow.

2003-10-30T17:35:00.000-05:00

We have heard from the geneticist. The news is not bad, but rather uncertain.

Here's the technicalities. Hannah has an extra chromosome on half her cells, as Janet mentioned earlier. There are two factors in Hannah's situation: which chromosome has the extra pair, and the fact that it's not on all cells.

Human chromosomes come in pairs. There are 23 pairs, yielding a normal 46 chromosomes. Down Syndrome, for instance, results from having an extra chromosome on pair 21. So it's important to know that Hannah has an extra chromosome (actually, a part of a chromosome--not even a whole extra one, which is really unusual) on pair 14. This is called trisomy 14. Since she has it only on part of her cells, it's also called mosaicism. So the complete condition is trisomy 14 mosaicism.

Had she had trisomy 14 on all cells, she could have suffered from facial abnormalities or hydrocephaly (water on the brain). With the mosaicism, the effect is lessened, and perhaps even absent.

Just to complicate things, there is this: the sample was a blood sample, of course, and with mosaicism there is no way to know if the same percentage holds with the rest of her body. It is quite possible for her to have no abnormal cells in her brain whatsoever, and that's what the geneticist is really wondering about at this point, because that's what could cause developmental challenges. If they are there, we may not be able to identify them until she is one or two years old--or even five years old.

So this is like waiting for the other shoe to fall, and (we hope) it may not fall at all.

Also making it difficult or impossible to come up with a prognosis: they've never seen this before. Our doctors knew of no record of a baby being born with trisomy 14 mosaicism. (The literature identifies some who were detected prenatally, but they either did not survive or the trisomy 14 did not show up in the baby--only in amniotic fluid or the placenta.) In subsequent searches, we have found a few references (such as a two-year-old girl), but they are very rare.

We'll go talk with them in more detail on Nov. 10.

2003-10-29T22:58:00.000-05:00

More pictures to show. Hannah goes for physical therapy twice a week, which we call "going to play with Mr. Tom."


Hannah doesn't much like it when Mr. Tom makes her exercise--I think she'd rather join her couch potato brother (nickname: Spud) watching TV. However, Mr. Tom is gentle and insistent in his "playing," and he says Hannah is making wonderful progress. She fusses at him, but does what she is supposed to.

Later, we made an excursion to the library.


Her majesty peeks at the spectators as her bearer takes her to the library.		Holding audience at the library. Doesn't she look regal?

2003-10-28T10:17:00.000-05:00

Janet here... Between my surgery on Thursday and the ENT moving his office from one floor to another on Friday we were finally able to touch base with them yesterday afternoon and get the results of Hannah's PH Probe testing (the testing done at Children's Hospital) The test results came back "abnormal." She has both esophegeal and pharyngeal reflux. (Please, forgive any medical mispellings!) Where I heard that as two different kinds, Donn says they are actually two different LEVELS in the body, one higher than the other. Treatment is Liquid Zantac twice a day so Hannah now has her first "official" prescription.

We have her preliminary results from the chromosome testing. Of the 50 cell sample they tested, 24 cells had an extra chromosome. We don't know yet which pair of chromosomes has the extra one, so we are waiting to hear from the geneticist on that. They should also have more results from where they look closely at the ends of the chromosomes for frayed edges. The good news in this is that whatever it is, the effects will be lessened because there is an extra chromosome on only about half the cells and not all of them. Thank you, God!!

Hannah continues to do well with PT. Her therapist, Mr. Tom, seems to enjoy working with her and she doesn't really seem to mind his prodding. I know I tend to incorporate her "exercises" in my play time with her so she gets some "therapy" every day. We've shown Zach some things he can do so he is helping too. I have some pictures I'll have Donn add this evening.

We had Hannah to the pediatrician on Friday for a weight check. The doctor was thrilled as she had gained 8 OUNCES since we had been there the previous Friday!!! YEA, HANNAH!!! MUCH better than the 2 ounces in 10 days that she had registered the previous visit. We are continuing the enhanced formula with the additive per Dr. Fox's instructions. Hannah goes back for another weight check Friday and then again in a few weeks for her 6-month check up (a few weeks late due to having to reschedule because of PT conflict) when she will get her first flu shot. At her age they divide the flu shot into two doses so she will have to go back again a month later for the second dose.

My neck is doing fine according to the doctor. We made an unexpected trip to his office yesterday after PT as my neck had swollen and it was not draining at all like the doctor said it would (he had said not to wear anything good because it would drain for 2-3-maybe 4 days). He looked at it and said it was great and not to worry abiout the lack of drainage. He also mentioned that the swelling could take 3 MONTHS to go down!!! :(((( It is still quite sore, but the soreness in my throat from the tubing from surgery is gone now. The entire left side of my neck under my chin down to the incision is numb. We hope the feeling will come back soon. It sure feels odd now! The bruising is pretty localized and it is starting to turn greenish. I guess I should be grateful it's almost Halloween! :) I don't have to dress up!!!

As if dealing with doctors isn't enough... Sunday we noticed that there was a leak under the hood of the car. We filled the radiator with water before leaving a friend's house after working on her computer. We lost the little tool we used to open the radiator (it's a very strange radiator cap!) on the way home as it was left on the roof and we didn't realize it until it flew off on the interstate. Yesterday on the way to PT the car started overheating badly and Donn had to walk maybe a mile round trip to Kroger to get another jar opener to use to open the radiator. In the rain.

Mr. Tom told us about a good mechanic and we took the car there to talk to them about it. Donn was pretty impressed with them just from talking to the guy so Donn is there with the car right now. He just called to tell me that it has turned out to be that the heater core is blown. What caused this is a leaking head gasket. Can you say $$$$??? I don't know how at this point but we'll have to get it dealt with.

Surprisingly, the car and the doctors aren't what has me stressed at the moment. I brought home the newsletter to work on over the weekend (figuring that I could work at the computer sitting and it wouldn't bother my neck) and I'm working on it here BUT I have a different version of the program I use at home than I do at the office and I'm scared to death that even though I am saving it as an earlier version it won't pull it up OK at the office and I'll have to re-do everything from the ground up. And I had planned for it to be ready to be proofed this afternoon! :((( It is due to be run off tomorrow and put in the folding/mailing process on Thursday. WHAAAAAAAAA...

2003-10-27T17:43:00.000-05:00

We're still waiting to hear the results on all the tests for Hannah, but we got at least some test results back, enough to share an update. Plus, I can offer an update on Janet's surgery.

Janet first. She came through the surgery well--no complications, no difficulties. I could tell she was all right because she gave me one of those looks when I came in the recovery room--the one that says I am less than pleasing to her at the moment. :) She's been very sore, of course, but seems to be doing well. She was a little iffy about the surgery, especially following an exchange with the doctor just before the surgery.

He came in and said, "Good morning!"

As anyone who knows her knows, her only possible response was, "What's good about it?"

He said, "Any morning I can cut is a good morning."

To say the least, this made Janet even more nervous. However, it appears he knew what he was doing. We're still waiting to hear the biopsy report, but he is real sure it was a benign tumor on a salivary gland--nothing to worry about.

We have to run to the drug store to get some medicine for Hannah, so I'll post again in a little bit to tell more and update about Hannah.

2003-10-21T21:12:00.000-04:00

Hannah came home from the hospital this morning. All things considered, she did well. She slept most of the day Monday, which concerned Janet (both that something might be wrong, and that Hannah might not sleep Monday night). It seems that it was simply Hannah's reaction to stress. The problem turned out to be that Hannah would sleep, but only when Janet was holding her (she would sleep for about 10 minutes in the hospital crib, then wake up whining--don't know if the tube bothered her or if the unfamiliar bed bothered her, but she slept fine while Janet held her). Of course, that meant that Janet got NO sleep.

We will hear back from the test on Wednesday, maybe Thursday, plus another couple of weeks before we hear back from the genetics testing. Janet goes for her own surgery on Thursday.

2003-10-18T15:42:00.000-04:00

We're doing exercises with Hannah at home to supplement the PT. Just some things the therapist showed us, but Hannah already seems to be responding to them. She seems to be getting the idea that she's supposed to hold her head up when she sits up, for instance, and most of the time tries to do so. Sometimes she's real successful, and sometimes she's not.

We heard from Jon and Caty today. Jon is very active in his high school band, and they are going to band competitions just about every weekend in Oct. His band took first place a couple of weeks ago! They placed fifth last week in a competition at Western Carolina University that involved bunches of bands, so that's a great one too. This week, they're off for another one.

I'm also so proud of Caty, because she worked through making a decision that was a bit fearful. She will go on a school trip next week that will be a lot of fun for her, and useful as well!

2003-10-17T16:49:00.000-04:00

Hannah is now 23 weeks and 3 days old. We took her to the ENT last week and he has agreed that her noisy breathing and feeding could be something called laryngomalacia. He is doing a fiber optic exam of her throat next Monday and then sending us to Children's Hospital for a PH probe, which will measure the acid reflux. He says that if she does have reflux they can treat that and it sometimes helps babies outgrow the laryngomalacia faster. She will be there overnight.

The next day we went to the geneticist. She saw everthing we and the doctor are seeing, plus a couple other things. She ordered blood work for chromosome studies. Those will take about 3 weeks for the results to come back, so it will still be a while before we find out anything there.

We took Hannah for her first physical therapy appointment this morning. The therapist evaluated her, and she is definitely delayed in some areas. We are now scheduled for ongoing PT appointments on Mondays and Fridays. They also told us about an Early Intervention program here in Tennessee that will help to cover the PT costs (what our insurance won't pay) and will cover it 100% when the visit max of the insurance is met. THANK YOU GOD!!! They have already sent in a referral for us, and now we just wait to be contacted for the home visit and program set-up. Once she is in, it will cover her until she is 3 years old.

Since Hannah will be in the hospital Monday and Tuesday we took her to her pediatrician for her weight check today. We were pleasantly surprised to actually get to see the doctor. (We thought that they would just weigh her and that would be it.) Dr. Lana weighed her, and there has only been a 2-ounce weight gain in the past 10 days. :( So she prescribed an additive that will boost the caloric value of her formula from 24 calories per ounce to 27. (Don't we wish there was something good that WE could eat that only has 27 calories per ounce???) We take her back again from another weight check next Friday.

Next week is a busy one. Hannah has the first end of the week with the ENT and hospital stay, then I have the end of the week with surgery on my neck on Thursday and going back to have the drain taken out Friday. Fun, fun, fun!

Please keep us in your thoughts and prayers. Oh... and also Zach's godfather. He had nasal surgery for severe sleep apnea problems today. Surgery went well but it's going to be a couple weeks before he can go back to work.

2003-10-06T18:07:00.000-04:00

Hannah is 5 months old today!!! And we "celebrated" with weight check day at the doctor's office. Only a 9-ounce increase in almost a month, so they are enriching her formula so it is more caloric. We take her back in a couple weeks just for them to weigh her and see if the change is doing any good.

The doctor also looked at some other things like the noises she makes while feeding and the lack of control she has over her neck. We now have several other doctors to see to help (hopefully!) with those issues. We start off with an ENT this Wednesday for her feeding/breathing. She still isn't smiling and talking like most babies her age, so Thursday is a geneticist to rule out anything that might not have been caught pre-natally that would cause these delays. And next Monday is a physical therapist to help with the muscle control in her neck.

Just look at her... wouldn't it be nice to not have to worry about things like this???

2003-09-28T17:43:00.000-04:00

Now that Hannah is starting to eat real food (she added squash to her diet this week! yum!), she's going to have to learn to cook, of course. To help this along, we teamed her up with her experienced chef brother, who will soon be having her serve as his sous chef.

She seems somewhat alarmed by the prospect, doesn't she?

2003-09-12T15:34:00.000-04:00

I meant to write something here LAST doctor's visit but I didn't (obviously!)

Hannah had her 4-month check up and next set of shots. She is now 11 pounds and 5 ounces and 24 inches long. Up 1 pound and 2 ounces and 2 inches longer than last visit. A full TWO FEET "tall" now!!! Weight-wise the doctor said she should be gaining more. We don't know what is happening because she eats like a piglet. It seems like we are always feeding her. She is now getting cereal, so maybe that will make a differnce. Rice cereal first, then adding others. Then she can have orange veggies and then green veggies and finally fruit. We take her back to the doctor for a weight check the first week of October.

The doctor is also concerned a little about how Hannah doesn't support her own neck when you pull her from a laying down to sitting position. She holds her head up fine when in a sitting position and raises it up on her own when on her tummy, she just lets it lag back when pulling her up. Hopefully she will strengthen those muscles a bit before the next visit. [Note added by Donn: I've noticed that if you pull her to a sitting position, then just leave her there for a minute, she will go ahead and pull her head up. So I figure she doesn't know she's supposed to pull her head up when she sits up, because we've always done it for her.]

She did beautifully with her shots. Last visit (while Grandma was visiting) she got 4 shots and she didn't make a sound, amazing the nurse. (Daddy took the shots worse than Hannah!) This visit there were 4 more shots and, again, she didn't make a sound. She was drinking from her bottle and you could tell it hurt because she winced a bit but she never stopped eating and didn't cry. She will get 2 more at her 6-month check up in November.

We fed her her first "official" cereal that afternoon and she seemed to really like it. Judge for yourself. Of course now she thinks that if we eat she eats too!


Hannah takes her first bite of "real food."	She obviously has to work a bit on her technique. Some did wind up inside!

What else has been going on... We caught the Smokies last home game of the season. Hannah did well, watching quite a bit of the game. She even has her own hat. They made the playoffs but that was it. Maybe next year...


	At left, Hannah models the cap she will soon grow into. I think she thinks it's eating her. Above, Zach and Hannah pose with Slugger, one of the Smokies mascots. He wasn't as pretty as them, though, so we cut him out.

And we took a road trip to Virginia to see Zach's Godparents. They hadn't seen Hannah up close and personal yet. It was really good to see them. We don't get to often enough. We had a great time and I think they liked her.

And Hannah has become a real party animal. A couple weekends ago she had a 50th wedding anniversary party, a wedding rehearsal and dinner, and a wedding all in one weekend. I think it tired us out more than her! Here she is dressed up for the wedding.

	At left, Her Majesty surveys all the hoo-rah obviously being thrown in her honor (two people also got married) while her primary vassal looks on. Below, a detail showing her unbearable preciousness; she seems almost pleased.

Donn has an article out. Check it out at http://www.babyzone.com/features/content/display.asp?contentid=1157. It's on High Risk Pregnancies.

2003-08-16T13:47:00.000-04:00

Caty got to visit with us the latter part of July, and really connected with her new sister. Hannah also took some advantage of her, I fear; she loved sitting in Caty's lap any time she could, but she thought she would be able to sneak a little food while Caty wasn't looking. Here's what happened at supper one night, after Hannah had already had her own bottle and the rest of us were then enjoying some lasagna. In the last picture, note not only the adult hand coming in from the side, but the little tiny hand grasping the plate at the top.

2003-07-15T00:11:00.000-04:00

Here's a picture we just have to share. We were driving somewhere (can't remember where already), and it started raining heavily. I mean, the kind of rain that would have made Noah nervous. In the back seat are Hannah on the right in her rocket seat, Zach in the middle, and me on the left-hand side. Zach and I happened to look at her and see this look on her face, and as luck would have it, we had the camera with us. We took this shot, started giggling hysterically, and Janet in the driver's seat says, "What are you two up to?" Which just set us off, of course, and all the while Hannah ignore us and continues to look like this. I guess it can be kinda scary when you really hear rain for the first time.

Ready?

Stephen King couldn't get a better reaction. :)

2003-06-15T22:44:00.000-04:00

More pictures. I mean, how can we help but share them? This kid just gets cuter every day.

	Hannah sleeping peacefully with Mama. Janet is wearing Donn's great-grandmother's wedding ring, so this picture really spans the generations.
	Here's Hannah all dressed up for Father's Day. You can tell she's thrilled.

Of course, on the way home she turned into a sour formula fountain, totally ruining her outfit and even filling up her car seat. That's just the way it works.

2003-06-14T16:01:00.000-04:00

As I began typing this I was sitting very uncomfortably in my desk chair. Hannah has been cling-y this afternoon and was lying on my chest. This meant I had to scoot my butt way to the front edge of the chair. But she was comfortable and sleeping. Sleeping so soundly, in fact, that I was able to move her to my lap. Her ear is about 8 inches from the keyboard as I type.

Yesterday was Hannah's "one-month" appointment. She did pretty good. She squalled the most when she was lying naked on the scale. Not sure if it was the naked part or the scale that got her going. After that she was fine, even sleeping through her second Hepititus B shot. She barely whimpered as it was being given and I'd say that might have had something to do with the way they had to hold/handle her little leg. I think Daddy had more of a problem with the shot. Anyway, she weighs 8 pounds and 13 ounces now and is 21 inches long. Next visit she will get 4 shots. Ouch! I fully expect her to be a bit more vocal then.

2003-06-07T12:36:00.000-04:00

My husband is NUTS! Now, mind you, I already knew that. I knew it before we got married. But every once in a while he does something that just reinforces that knowledge wonderfully.

Well, he just did something. Hannah's room is one half of the "office." I was in the "office" half working here on the computer and Donn had Hannah over on her side of the room on the changing table. He had just changed what we have come to call a "fat" diaper. At this point now she wants to be fed. He started talking to her, saying something like what was being served today was a vintage formula, soy based. As he left to get the bottle he turned back and made a short step back to the changing table and addressed her again saying, "My name is Daddy and I'll be your server today."

At that point I cracked up. Donn may have thought I was laughing at him but I was really just reveling in the wonderfully bizzare sense of humor he has. One of the things I love about him.

(Before anyone rides me about leaving a baby unattended on a changing table... it has high sides and I am one step away.)

He came back with a bottle. He was holding Hannah in his arms, still talking to her as her personal wait staff, trying to get her to turn her head to take the nipple, commenting that the management requires that it be put in her mouth. She made her own comment, grunting to let him know that the brand new, clean, dry diaper was no longer clean and most likely not dry either. Donn made a choice remark and rolled his eyes at the ceiling. Hannah is now back on the changing table finishing her "comments" and Donn is waiting. Patiently.

2003-06-02T11:40:00.000-04:00

This past weekend we took Hannah over to meet her Grandma King. We surprised her with the visit. We hadn't let her know we were coming as it was a fairly spontaneous trip (as spontaneous as you can get traveling with a baby!) I think she likes her.

Hopefully Grandma Greene will get to see her soon too. Unfortunately she isn't as close so we can't make a weekend trip like this.

2003-05-27T13:43:00.000-04:00

Hannah and Zach are definitely related... Here are their hospital "portraits"...

Since they were both born on a Tuesday and discharged on a Friday they are both 3 days old in the pictures. I'm sure you can figure out who is who... but if not, here is a hint... Hannah is the baby in pink. :)))

2003-05-20T19:00:00.000-04:00

Janet here... Hannah is two weeks old today. Hard to believe. I can't imagine her not being here. I could just sit and hold and watch her for hours... days... weeks... She will grow up way too fast. I went back to work today (hey... it's a small, quiet office and I only work three days a week) and I took Hannah with me. She was very good. Victoria commented that the crying she did when Donn changed her after we got there was really the first she had heard her do that other than (I believe) in the hospital. Donn went to do some computer work after dropping us off and then came back to keep Hannah company. They looked cute sleeping next to each other... Hannah in her bassinett and Donn in the chair next to her. :))) I stepped on the scale here at home yesterday. I had last been on it a day or two before Hannah was born. It's a "high-tech" scale that has memory and calculates how much you have lost or gained since the last time you had the courage to put both feet on its surface at once. I was very pleasantly surprised... According to its infallible memory I have lost 25 pounds since Hannah was born. Not bad, huh?
Look! Laundry baskets are very versatile!
This past weekend we went down to Chattanooga to the Toastmaster's conference where Donn was a contestant in the International Speech Competition. (No... Although he came in second last year he didn't place this year. The competition was really stiff and any of the six could have taken first place. I'm glad I wasn't a judge. It must have been real close.) Hannah was a doll! We sat through two contests and, even with the applause, she was great! I'm sure there were people in the room who didn't even realize there was a baby there.

2003-05-15T10:10:00.000-04:00

Hannah's schedule for today:

Sleep
Poop
Wake up
Get diaper changed
Immediately get another diaper changed
Eat
Sleep
Poop
Repeat randomly
Get weighed sometime

There are no time entries because she doesn't tell time yet. Except for getting weighed, this is pretty much her schedule every day.

2003-05-14T19:46:00.000-04:00

Ain't she cute????

Things have been a bit different here lately. Hannah is getting used to us and we are getting used to her. Someday soon we hope to all be on the same schedule but at only 8 days old I guess we can overlook her sense of time.

I am greatly pleased and proud of the way Zach has adapted to Hannah's arrival. (Although he HATES the word "adapt".) He has been a great help and is very good at holding her (even volunteering to hold her so we can do something else that needs doing) and making bottles. He even spent the first night at the hospital with me and helped several times during the night. He has yet to change a diaper but then we haven't asked him to do that yet, either. He comes in to talk to her and play with her and he even comes in to kiss her goodnight in the evening before he goes to bed. His comment to us was that we "done good." From the looks of it, wouldn't you say that he kinda likes her, huh?

Tomorrow we take Hannah to the doctor's office for a weight check. It will be interesting to see what she weighs now. She was at the doctor's office on Saturday morning, the day after we left the hospital, for her first immunization. They weighed her then and she was 6 pounds and 8 ounces.

I'm feeling pretty yucky. Had the staples removed on Monday but I'm still hurting. My fits of coughing really cause a lot of pain, making me feel like I'm being ripped open. Donn has been a big help with getting me in and out of bed (the darn thing is at such an odd level now) but it still hurts to walk and stand, etc. My feet, ankles and calves are still swelling quite a bit on a regular basis. Sometimes my feet are so swollen they hurt. It's a very odd sensation when your toes don't touch the ground! But at least now, with the staples removed, I can sleep on my side again.

2003-05-07T08:24:00.000-04:00

I've put a few pictures up on a free site, rather than burden everyone's e-mail with images. Take a look at our new girl at http://www.geocities.com/daking27/ I'm sorry for the Geocities ads, but they're not too bad, and a good popup killer will get rid of them altogether.

2003-05-06T15:35:00.000-04:00

Hannah Emily King was born at 8:53 a.m. this morning. She weighted 7 pounds, 1.6 ounces, and measured 18.5 inches in length. She had all her fingers and toes and also apparently attitude. A good one. A strong one. She cried to exercise her lungs, but mostly has been looking around at her near surroundings with the puzzled look you get when you wake up someplace you don't expect to. That "wow, it must have been some party" look. The "I know I should recognize this, but I don't" look.

We had intended for me to come home tonight, but plans have changed. Janet decided (and rightly so) that I should stay there tonight in case she needs help with the baby in the middle of the night. I have hastily come home to take care of some errands and grab some overnight stuff. In my haste, I forgot to bring the camera to download pictures, but I'll get them up within the next 24 hours or so. Keep watching here.

The main thing: Hannah is healthy, Janet seems to have come through fine, Zach is thrilled, and I am stunned--happily so.

2003-05-05T11:04:00.000-04:00

Less than 24 hours now. We'll go to the hospital in a bit for preliminary blood work and paperwork. The power went off last night for several hours, and I was hoping Janet would not go into labor because of the added difficulty of getting ready to go in the dark. There was a tornado in Jackson, Tennessee, last night that swept through town within miles of where my Mom lives. Apparently the staff tried to wake up everyone and herd them down to the ground floor for safety, but Mom slept right through it. The tornado went through downtown instead and hit the Justice Center that houses the police department and fire department, among other things. Death toll stands at 10, but Mom is OK.

Zach is coming to terms with having to get up at 4:30 in the morning. We are to check into the hospital at 6 a.m., with surgery scheduled for 8. I have a list of people to call and another list of people to e-mail, and will also post information here--including photos, as soon as I can get them. I don't know how to download photos from the digital camera, but we'll get them ASAP.

2003-04-28T20:22:00.000-04:00

Getting closer to the delivery date. Looks pretty definite at this point: Hannah will join us on May 6, soon after 8 a.m., unless she decides to come sooner on her own. Otherwise, the doctor will take things into our own hands, so to speak.

The latest update involves Janet more than the rest of us. The simplest way to update is probably to cut and paste some from my journal.

25 April 2003

With Janet at Dr. Slater's office. She has suffered intensely from a toothache for two days. Up all night with the pain, plus I had incredible abdominal pain from 4 a.m. until now. We are both exhausted. But she has seen Dr. Spencer this morning, gotten some painkiller and antibiotic, and now Dr. Slater is considering whether to do the extraction while Janet is in for the C-section. It would be good, and the fastest way to get her tooth taken care of, but it will also change the anesthesia picture at the hospital.

Hannah is moving around. She has moved over to Janet's left side. It makes her look lopsided, like one of those Wal-Mart carts that have been hit in the parking lot a few times.

Janet is in a bad way. When she sits up to lessen the tooth pain, her feet swell. When she lays down to prop up her feet, her tooth hurts more. Classic damned if you do or don't scenario.

Meanwhile, the last speech round is supposed to start today, and I'm nervous as to whether I will make it to class on time. It is now 11:10 a.m.; I have to be at work by 12:30 if I am to make the speech round.

Update: they're going to do an emergency extraction on Janet. I've called to get someone to put up a sign on the door of my classroom....

Still, this is going to be best for Janet and the baby—will get her out of pain with the least risk to the baby. It is 11:48 a.m.

12:37 p.m. I'm sitting in the dentist's office conference room. Janet wanted me in there with her, but Dr. Slater, understandably, doesn't want anyone else in there except his staff and the patient. I'll bet if he didn't there would be more fainting, etc., than in a delivery room. Sights, sounds, smells, all designed to raise the hackles and the breakfast. Although selfishly I am just as glad to be in here, I don't want Janet to be alone in there. I know from experience that Dr. Slater takes good care of his patients—I don't worry about what will happen with me not there, as if I am somehow the Dental Protector. Rather, I'm aware of how scared she is, and I know my presence makes that somehow marginally better, even though I feel helpless. I'd rather be in there for her sake.

I tried to call Zachary, but the cell phone doesn't work inside the office, and since they know where I am and can come get me if they need something, I don't want to leave. I hate leaving Zach in the dark, but he'll just have to wait.

A nurse just came in and said Janet was perfectly comfortable, calm, appeared to be doing just fine. I'm glad she's not scared. Maybe they've given her something that just won't let her be.

3:50 p.m. With Janet at the hospital for a non-stress test. She came through the extraction fine, although she still doesn't like to talk. Hannah isn't moving well, and we've learned that giving Janet juice wakes Hannah up and gets her moving around. Janet can't use a straw, though, because of the dental work, so she is currently spooning ice and juice into her mouth. They asked her what flavor, and she didn't want to talk, so she just pointed (Janet's most common backup mode of communication). We figured out she was pointing to the nurse's purple smock, which meant she wanted grape. It's frightening sometimes how much we can understand each other.

It seems to have done the trick, though; I can hear Hannah's heart rate shoot up from time to time, and see a mark or two where Janet has indicated that Hannah is moving. The march to B-day continues.

2003-04-13T21:16:00.000-04:00

Today we were putting some of Hannah's stuff away. They had a shower for Janet at church last week, and many people were generous--we're very grateful for our friends and spiritual family. Zach, of course, being Zach, found a secondary use for some of the material.


Is he breathing, or is he practicing kissing? And why are his ears cold?		He seems proud, doesn't he? (If you can't tell, those things on his ears are some of Hannah's socks that have fish on them. At least she hasn't worn them yet.)

I would imagine that Amanda, Jon and Caty are glad that I'm hardly ever around them with a camera. :)

2003-04-09T21:56:00.000-04:00

I saw my new daughter's face today.

The first time I saw any of my children, it was always an inexpressibly moving moment. I didn't really expect this today, though--thought I wouldn't experience this until she was born.

But we had another ultrasound today. I've seen her face in ultrasounds before, of course, but she has gotten so big that the sound waves bouncing back to the electronic receiver picked up amazing detail from her face. It was the first time that her face didn't just look like a skull in x-rays (the print we have is not as clear as what you can see on the TV when we play the videotape). She had her arm up in front of her face, but that didn't block ultrasound, of course. The operator paused for several seconds on Hannah's face, and that's when we saw it.

Her lips were moving. They were making sucking motions, or "blowing kisses," as Janet said. But they were clearly moving.

In fact, as the ultrasound went on, she moved a lot! Squirming, kicking, waving her hands. Her feet are, of course, up around her ears. But she stretched several times, and continued the tap dance we have noticed in recent weeks.

Zach didn't get to go--he was at a friend's house. But Janet said he did wonderfully at the siblings class last night, taking it all very seriously and doing well at the skills they taught them about helping dress and bathe the new one. If they go with the cesarean they seem to be planning for May 5 or 6, Hannah will come out into the world in less than four weeks.

2003-04-08T15:19:00.000-04:00

Has it been that long since we posted? Gosh! Time flies when you're having fun. :)

We're spending a lot of time at the hospital these days. Two non-stress tests a week, see the doctor once a week, have an ultrasound once a month. It's gotten to the point that Janet is having to go by herself fairly often, since my work schedule is a bit tight these days (waning days of a semester AND advising students for summer and fall terms).

Latest personal news: I won the Area 23 International Speaking Contest in Toastmasters. Toastmasters organizational levels run like this: club, area, division, district, region, international. Last year in this same competition I won the club, area, and division, and then placed second in the district. You never know how things will go, but there are a lot of good speakers in this area, and I feel pleased and fortunate to have won the area. The division contest is on May 3.

Zach is going to a "sibling's class" tonight. They said he is one of the oldest they've ever had (he turned 14 last Friday). I guess most people don't space their kids out this far, huh?

2003-03-25T12:24:00.000-05:00

OK, first off: there's a reason I haven't posted a new ultrasound. The reason is that as I look at the most recent ones (that is, the printouts we have of it) they're not as clear as earlier ones. I think it must have to do with the printer on the ultrasound machine rather than the ultrasound itself, which seemed to me as clear as the other ones. Regardless of the reason, I don't think they're worth posting--they'll just be black blotches on a monitor. So we'll wait for the next set.

Janet is "enjoying" even more tests now than just the ultrasounds. Now, twice a week we go for "non-stress tests." For something called "non-stress," the first one sure was stressful. It was supposed to last for 30 to 45 minutes, but wound up lasting nearly three hours!

For those not familiar with them, non-stress tests (NSTs) are designed to check whether the baby's heart rate goes up when she moves (that's what it's supposed to do). They put an external fetal heart monitor on Janet, and have her like flat on her back and push a button every time she feels Hannah move. The button puts a mark on the printout, and they'll just look to see if the marks match up with heart rate increases. It complicates things just a little that Janet doesn't feel Hannah move every time she actually moves (based on me being able to place a hand on her stomach and feel movement when Janet doesn't).

The real complication the first time came because Janet was experiencing contractions, and didn't realize that's what they were ("I don't remember what they feel like--it's been 13 years!"). She thought they were just the baby rolling. Contractions show up through this monitoring process along with the heart rate. The nurses came in and said, "Don't you feel that?" And Janet said, "Yes, but it doesn't hurt." (I guess she thought contractions had to hurt.) They seemed to think something should hurt, so they gave her a shot of brethine (which has a side effect of stopping premature labor). Eventually they let her go home, but gave her a set of restrictions that, shall we say, do not sit well.

We had the first NST on March 21. We then went out of town for me to speak in Blairsville, GA, and had another test when we got back late afternoon on March 24. This time Janet got to go into one of the birthing rooms, because the triage unit where they usually do the test was full. This time the test only lasted about an hour, and they came in and said, "You passed!" So I guess that means the premature labor didn't restart, and that Hannah's heart rate is going what it's supposed to when she moves. We get to do this every Monday and Friday now until Hannah arrives (or they change their minds), along with separate visits for ultrasounds every four weeks and checks by the doctor every two weeks (I think). I know that we're getting on a first name basis with all of them, and the doctor is going to be able to get that new boat after all!

All worthwhile, of course, when it leads to getting Hannah here as safely and happily as possible.

It all really makes me think about the births of my own three kids. Amanda has heard the story until she is sick of it of how I took her from the doctors and carried her from the delivery room to the nursery. I think she likes the story, even though she has heard it too much. There is a special bond there because of it, though. When Jon was born, it was through cesarean, and at a hospital that still considered fathers to be extraneous material. Still, I can't describe the wonderful feeling the first time I saw him. He was working his tongue very hard, like it tasted bad and he was trying to get it out of his mouth. He made me laugh, and he still has the most amazing sense of humor. Caty also came into the world via cesarean, and I was there for the whole operation that time. What an amazing little life, and what amazing people they have grown up to be!

Amanda is now 20 (newly so), Jon is 17, and Caty is 11. Yet it seems like only days since their births. Now a new one is joining them. I can't comprehend it.

2003-03-13T16:43:00.000-05:00

The ultrasound yesteday went fine. She checked everything, including listening to the bloodflow in the umbilical cord! Hannah still seems to be growing right on schedule. All measurements averaged out to 31 weeks 1 day. And yesterday was... 31 weeks, 1 day! She is really filling out and we're told she weighs about 3 pounds and 15 ounces now. She is already turned head down but there is no guarantee that she will stay that way. She may still flip a few times between now and her birthday. We go back to the doctor next Monday and have another (and what might be the last) ultrasound scheduled for the 7th of April. I've scanned the ultrasound picture and will have Donn post it this evening.

Hannah is real active and sometimes makes me feel like I swallowed a dryer with all the tumbling going on in there. She tends to poke at me a lot and poke back at Donn and Zach but she was very still during the ultrasound. I was amazed! But she made up for it on the way home. Zach and Donn are going to help put the crib and changing table together this weekend so we can start getting things set up for her.

2003-03-07T16:39:00.000-05:00

30 weeks now! The doctor's appointment on Monday went well. I weigh 3 pounds less now than I did when I got pregnant. A rather interesting diet, to say the least! I had to start taking iron suppliments. I'm not too thrilled about that but...

Monday night all three of us went to the hospital for a tour of the birthing center. It's really impressive. And Zach is now leaning towards being there with us. I think seeing the actual room made a difference since he knows that there will be places he can get away to. He still has to take the sibling class on April 8th. That is a requirement for him to be there and a requirement from mom even if he decides not to be! :))) We will be taking a Childbirth refresher class on April 23. I'm sure things have changed some.

Another Ultrasound is scheduled for next Wednesday so we'll have a new pic then. We are now on 2 week visits so go back to the doctor on the 24th. Hannah is moving around a lot now. The guys still think it's funny to poke at her and watch her poke back. Doesn't seem to matter that she isn't poking THEM! ;)

Did some baby shopping and got a monitor for her room. Still have a ways to go though. Sure wish I had saved more from Zach but after 13 years... :)) How was I to know?

2003-02-17T16:44:00.000-05:00

Janet here: I passed the Glucose Tolerance test this morning. I'm sure glad that is over! It wasn't as bad as everyone said and I only had to do the short (one-hour) test but I still don't want to have to do it again.

The afternoon doctor's appointment went well also. We are 28 weeks as of tomorrow. We'll be seeing the doctor every two weeks now and have another Ultrasound scheduled March 12 with another one to be done 4 weeks after that one. My iron level is a bit low so I need to start remembering those darn vitamins.

2003-02-09T19:43:00.000-05:00

We haven't thought to update folks on Zachary! He's thrilled by the coming of Hannah, of course, but we never lose sight of the fact that he is a neat, special individual. As you can see below.


Many do not realize that Zachary grew up to be a businessman on the space station Deep Space Nine.		Back down to earth, Zach enjoys his Legos^®.

2003-02-09T19:28:00.000-05:00

OK, here are the latest Hannah pictures. The first one doesn't look all that different from some previous ones, but it's another shot of her face--more evidence that she's continuing to grow and develop as she should. The second one shows she has a spine, although Janet says it makes her look like a fish. :)


"I'm ready for my closeup."	For those curious enough to want to know, the tailbone part is to the left.

2003-02-07T19:49:00.000-05:00

Today we saw the Perinatologist. They did a thorough ultrasound and checked everything over again. Hannah's vital organs are looking fine. Counted fingers and toes and we even saw her brain! The umbilical cord is indeed just two strands but since she is growing "on schedule" and moving around fine this doesn't have to be a problem, especially in light of the fact that there were no other abnormalities or defects found. Granted, this is no guarantee but it looks good at this point for a healthy little girl in about 13-14 weeks. They WILL however keep an eye on her growth which means that Janet will be haing another ultrasound at about 32 weeks.

We added to our Hannah video and got a couple more pictures. Will post one as soon as we get the scanner working at home.

2003-01-31T08:51:00.000-05:00

The ultrasounds were pretty clear on Tuesday's visit. In fact, we have two to share today.

It may be a little hard to see, but this little girl is tumbling, and she has her knees next to her nose and her feet way back over her head! Can you imagine being that limber?

We turned this one to make it easier to tell what's happening. She's facing the "camera" and has her left hand up like she's waving at us.

We're hoping the perinatal specialist will have an ultrasound machine that has a higher resolution that will show three strands to the cord. Hannah's growth and size and activity and everything would seem to suggest that she's doing OK, but we will worry until we find out.

2003-01-30T17:31:00.000-05:00

Went to the doctor yesterday, and got some new "pitchers," which I'll post soon. But when we went back to get an update on Janet's bloodpressure, they said that we need to see a perinatal specialist. Seems Hannah's umbilical cord only has two strands, when it should have three. We'll post updates on that situation as we know about it.

2003-01-23T12:25:00.000-05:00

It has taken me a few days to get the new picture up (we started a new semester at the college where I teach), but here's the latest one. Isn't she purty? Everything seems to be there.

2003-01-03T21:26:00.000-05:00

It's been over a month since I last posted, but it's been a very busy month. We finally got the last of the stuff out of the old house on Wednesday. We figure it will take about six months to get everything arranged now. It's like living in a warehouse.

Good news, though. We went to the doctor today for that ultrasound, and we're almost certain that the baby will be a girl! So we've settled on Hannah Emily King for her name. The ultrasound looks good--everything looks normal and healthy, and she's exactly the size she's supposed to be for this stage (21 weeks, 3 days). I have a scan of the ultrasound that shows her face--I'll post a picture here before long.

Wondering who of our friends are actually seeing this. Drop me or Janet an e-mail to let us know. No e-mail address posting here, though, since the spammers are in full rut, it seems.

2002-12-01T12:21:00.000-05:00

Can't believe everything that has happened in the last two weeks--and no time to catch it all up. Just some brief notes:

Mom moved back to Trenton, stayed less than a week, and then moved again back to Jackson Meadows. We still haven't heard from her by telephone--I got the news via a letter from her, and then a phone call from my cousin. I suppose she will get a telephone in sometime soon. We hope she finds some place she can feel settled that she can afford.

We're making arrangements to help Janet's mom with her move from Massachusetts to Florida.

The cable has been up and down (mostly down, as far as the modem was concerned), but they finally got it buried on Friday, and now it's working great. Also got the networking challenges solved.

I'm writing this during a work break on Sunday morning. I skipped choir practice and church (and I rarely miss church) to catch up on some deadlines. Have to get a textbook review to the publisher by tomorrow (a deadline that has already been moved once), have to sort videotapes for the Web class by tomorrow to verify with students what I've received, have to view the tapes by Friday. Was supposed to also finish packing up the last of the stuff at the old house so that I can use a borrowed truck tomorrow and Tuesday, but I'm now going to call the folks who are getting the old house to ask if I can please have a few more days (and explain why). Ironically, it could wind up costing us exactly what the textbook review will bring in.

Janet and I went to her doctor last week and heard the baby's heartbeat again. Everything is on track, everything looks good. We'll go back on Dec. 30 for a doctor's visit and for an ultrasound on Jan. 3--at which point we might be able to tell the gender! That will help immensely with planning.

2002-11-18T22:09:00.000-05:00

Life goes on. Neat thing: all the power is on. Notice the "all" part. When they got the power connected last Friday, we discovered we had power to only half the house. So we ran heavy-duty extension cords from the side that worked over to the side that did not so at least have lamps over there. Fortunately, the half with power was the half with the heat pump and the hot water heater, so it was liveable over the weekend. Today they came out and found where the problem was. We now not only have full power everywhere, we have cable modem service--it's as fast at home as it was at work! Joy! I can now accomplish enough work at home that I can be here much more.

The movers are coming Thursday evening, apparently, to take Mom back to Trenton. To say the least, very mixed feelings. At least the house is itself becoming liveable.

With power and the TVs working, got to watch the video from the last ultrasound. The baby is quite active, moving around enough to make it difficult to get an accurate heartbeat. Things seem to be progressing nicely. The proper number of arms and legs are there. The next ultrasound will be in five or six weeks. What an amazing change just since the last one!

2002-11-15T11:52:00.000-05:00

Haven't updated for awhile. That's because we are still embroiled in the move through hell (if not the move FROM hell). Put it this way: I've been in a Family Inns motel room with my 80-year-old mother and my pregnant wife for over two weeks now. Not only is the motel expense killing us--the cost of the years of therapy that will result from this will be overwhelming.

To make what could be a very long and sorry story short, the bureaucrats have had trouble getting all the little yellow pieces of paper lined up in the right order, and we have yet to get the power turned on (although we've had water for a week and a half now). Finally, today, they are digging up our yard preparatory to connecting the house to the grid.

Alas, it comes too late in some ways. Mom somehow decided that it is like this in our lives all the time (as opposed to being extraordinary circumstances) and is bailing on us. She is moving back to West Tennessee, specifically to the Harlan-Morris Retirement Home in Trenton, leaving behind broken dreams of finally getting to spend time in relationship building and learning about my family history. I can't think of any other way to say it. I am crushed and exhausted. The upside is that at least we are in a house that is much nicer and much more appropriate for a family our size. The downside is that our financial burden has more than doubled, even with some financial support from Mom because she recognizes we wouldn't have made this move into this size house in the first place except for her.

2002-10-31T14:03:00.000-05:00

We have Mom here now. Things are still very much up in the air, though, which is particularly unnerving for her. She and Dad lived in the same house from 1949 until 1997, and then have moved a dozen times (though sometimes just from one apartment to another in the same building) since then. Still, almost all those moves were from one rented retirement facility apartment to another, so all this stuff about putting up a new house from the ground up and all the associated business about getting a septic tank in, hooking up a brand new electrical service, running wires for telephones, etc., are very new to her. She is going to be staying at a motel for a few days while they finish with the house, although all her furniture and other worldly goods are already in the house. This weekend friends will help us move the rest of our incredible accumulation.

We sometimes feel like the Murphy's Law Poster Children. Example: there are over 100 lots in our subdivision, and we were lucky enough to get the one that somehow managed to not already have utility services run up to the box. Heck, there isn't even a box. I don't understand exactly how it happened, but apparently the property lines were shifted from the original plat. Suffice it to say that the guy from the utility company came Tuesday to set the meter and hook it into the system, and found that there was no place for him to hook into. They're going to have to bore a tunnel underneath our neighbor's driveway. So we're delayed with our move.

2002-10-25T22:59:00.000-04:00

Whew! What a day! Surviving so far, though. The graduate class was great--refreshingly so, considering how tired I was going into it.

We're really looking forward to getting in the house. Zach was an amazingly good worker today--no whining or complaining, took only two break, both of reasonable length, and went back to work without complaining. He didn't get angry a single time that I could remember (neither did I). He wants to get into his new, bigger room, and he wants to get it arranged just right so that he can keep it looking nice, like it does now.

We're also greatly pleased to have my mom coming down. There will be a lot of adjustments, but I think it will be good for her and good for us, too. I wish we had Dad with us too, but that's not the way it worked out (for those who know us but don't know that development, he passed away on August 26).

2002-10-25T00:02:00.000-04:00

Lots of things happening with us right now, obviously. Turning in another direction, though, what lies ahead this weekend is both overwhelming and exciting. On Friday I'll drag as much stuff of ours as I can manage (along with Zach's help) from our old house to the new one. On Friday night, I'll sit in a graduate class. On Saturday (all day), the same graduate class. On Sunday we'll drive to Jackson, Tennessee, and on Monday we'll drag Mom's stuff from there to the new house. I don't notice a whole lot of what passes for normal life in there, and it will be Tuesday before I can even start to think about catching up again.

Nevertheless, we are very excited about the new house. There is a lot of work ahead of us, but we really hope that it will be key to life becoming refreshingly boring. Pray for us.

2002-10-24T22:19:00.000-04:00

As you may have seen below, we had a crisis over the weekend. Janet went to the doctor this morning (Oct. 15) and everything is fine! Whew! Still want to take it easy, but as the doctor said, "It just looks like to me you're going to have to have this baby [wink, wink]." (Originally posted 15 Oct. 2002.)

2002-10-24T22:17:00.000-04:00

We had a scare last weekend. I went to the Ashland Annual Teaching/Learning Conference and did a presentation on Saturday morning (along with Anita Maddox, for those who know her). The presentation went fabulously. But the conference was rough. I went to the 8 a.m. general session and the 10 a.m. concurrent session on Friday morning (Oct. 11) and went back to the hotel room just to see how Janet and Zach were doing. Janet had been throwing up violently all morning, and was bleeding. Since we lost a baby to a miscarriage in March, we were very worried about both Janet and the baby.

We went to the Ashland hospital emergency room (Janet said at one point she wished the hospital ("King's Daughter") had another name.) We spent about six hours there. To make a long story shorter, Janet is OK, and the baby is OK, but Janet is now on modified bed rest. They don't know where the bleeding was coming from or what was causing it. She has an appointment with her own doctor at 8:45 on Oct. 15 for followup. Originally posted 14 Oct. 2002.