Aphasia Day Care (with the triplets)

Well, the babies have been home now for six, maybe seven weeks. None of us are getting much sleep. Understandably, I think. Many things have become fuzzy. Like the passage of time.

A reporter came to our house and wrote a wonderful article about the babies, titled "Triplets Born with Rare Condition Defy the Odds". You can find it on Yahoo Buzz on the following link. If you have a yahoo account, please go there and vote (buzz) for it. I'd love to see it move up the popularity list!

http://buzz.yahoo.com/article/1:0b68809b4274cd2fcd3bcdfb7b13f399:5f19093f75e9a2dbfd305c12b7bdf455

If you go this next link, you will see the exact same story, but it has pictures of the boys as well (one at the top of the article, and a closeup of the boys towards the bottom):

http://somd.com/news/headlines/2008/8613.shtml

And, of course, the obligatory picture from home:

There is no lack of love for the babies, but I easily get frustrated with Dave these days. I'm sure the lack of sleep plays into it. I often get only 2-4 hours of sleep each night. Dave routinely gets 7-12, then complains that he feels too tired to do anything. Playing 20 questions with him (because of his aphasia) has not been fun for a very, very long time. He stays up until 7AM before waking me up for my shift with the boys. He thinks of it as doing me a favor - trying to let me sleep more. What he just doesn't get, no matter how many times I try to explain this to him, is that I need two people awake during "normal business hours" so I can try to spend a few hours each day working on the business - making phone calls, paying bills - without attempting to watch four kids at the same time. If I can just get him to stop waking me up every time one of the babies smiles after 8PM, I can sleep earlier in the evening, he can be in bed by 2AM, and we can get everything done that we need to get done....

Oh, and he is back to watching TV while holding a baby in his lap. I lost track of the number of times the baby had a bottle in his mouth, but was not actually eating. Dave calls it his "bonding time" with the kids. I see it as an excuse to watch TV - he isn't really paying attention to the kids. I wish he would do something like feed the kids, and spend the free time washing and folding clothes. Something useful. (He could even do that in front of the TV - but then it would not be fun!)

Unfortunately, I feel like I am back to beating my head against the wall. It has become easier to give him the silent treatment, ignore what he does, then to explain over, and over, and over again why I would like clean underwear, why he needs to go to bed earlier, why the boys need to sleep at least part of the day with the light off and in their own bed. He has asked me why I have stopped telling him that I love him. It is hard to feel that, when I feel I am taking care of 5 kids - a set of newborn triplets, a 3 year old, and a 44 year old stroke patient.

Then, to top everything off, my mom is in the hospital right now for surgery on her ankle. My parents have been living with us since Dave had his stroke, and have pretty much been running the business for me through my pregnancy and these first few months with the boys. With my mom laid up (which she will be for many weeks while she recovers), my dad will be at her side. So, time has suddenly become much tighter, things have become more stressed.

Well, I think I will end this post here. I seem to have run the full gamut of emotions. Gotta save something for next time!

The Boys Are Here!!!!!

For anyone who has been wondering, the triplets have arrived!

ONE of my waters broke on 7/30 (there were three amniotic sacs, only one broke...), but the docs were able to delay delivery for a few more days - it allowed a few injections of steroids to help develop their lungs. After all, they were born at only 29 weeks and 2 days!

Pics are below - Arthur Raymond Titus, 2lb 14oz, 15 1/2"; Brannon Ash Titus, 3lb 5oz, 15 3/4", Charles Ares Titus, 2lb 13.7oz, 15 1/2". These are the birth pics - they are off the ventilators, breathing tubes, and IV's. They are fed milk via feeding tubes (they are still learning to swallow), and are being treated for jaundice and sleep apnea (which is "normal" for preemies). We are allowed to hold them, they seem to recognize our voices, and they track fingers in front of their faces. In general, we are extremely pleased with their progress. Since we live an hour away, we are trying to see them every other day. When I heal up enough (I had a c-section), I hope to get a room at the local Ronald McDonald house so I can spend every day with them!

Dave's Stroke in the Bay Weekly

If anyone is interested - this is an article that was published a year or two ago regarding the Maryland Renaissance Festival. I have been a part of the MD Renfaire (www.rennfest.com) for about 20 years now, in one form or another. I dragged poor Dave into this when we started dating..... And now The Bee Folks (http://www.beefolks.com/) is a major attraction at the festival.

I was approached by a reporter for the Bay Weekly looking for stories of interest from the Renaissance Faire. We initially spoke by phone, and she eventually came to our office to see our operations and to hear more. Some of what she took away that day made it into her article, including a mention of Dave's stroke and the Faire's reaction to it.

The entire article is interesting and is an accurate representation of the Faire, but if you want to skip to Dave's part, look for the section titled "The Spirit of Revel Grove", about half-way down the page.

http://www.bayweekly.com/year06/issuexiv33/leadxiv33_1.html

This summed up my feelings

Just a quick post:

When Dave had his stroke, this was hot on the radio. Every time I had to drive from one hospital to another, or the few times I went home to take a shower, I heard it on the radio. It really summed up my feelings at the time. Made me cry back then every time I heard it, and looking back, I should have pulled over to the side of the road every time I heard it.

Shoot, it still makes me cry when I hear it.

The song is called Broken, by a band called Seether, and the version on the radio featured Amy Lee from Evanescence. I have read that the song was originally written by the lead singer of Seether about his wife and daughter when he had to leave them. To me, it expressed everything I felt about wanting to protect Dave through those troubling times. The first version is the video with Amy Lee, the second is just Seether. Both are links to YouTube.

http://www.youtube.com/watch?v=AKGpZuadMsA

http://www.youtube.com/watch?v=x4XQfDd0iMc&feature=related

Update on the Family

I must admit, Dave is handling everything very well right now.

While we were down in Florida, he spent very little time on the Internet and watching TV. The exact opposite of what he did up here, where he spent the first 2-2.5 years post-stroke watching TV cartoon shows under the pretense that he was "doing homework". While in Florida, his speech skills skyrocketed in a way that I never would have dreamed of, this long post-stroke. All I can figure is that he was forced to interact more directly with the world, and that this new stimulation to his brain jump-started some neural pathways.

Don't get me wrong. He still has lots of issues, and still flubs majorly while under stress or when tired. I still don't see him going back to work, dealing with clients and contracts. But, especially when I am tired from the pregnancy, it is nice to be able to communicate more easily with my own husband.

Now, with me being pregnant, he is still spending much less time on the computer and TV, and actually doing work around the house. YEAH! In my mind, this is helping him as much as me, just based off the Florida experience. I have stopped fretting about Dave trying to sleep in until 2PM, and I spend more time thanking him for washing the dishes, watching our daughter, and making certain that I always have something to drink.

Maybe this sounds kinda selfish. However, a few weeks ago, the babies took a turn for the worse. I went in for one of my "routine" sonograms, to find out that they are in stage two of twin-to-twin transfusion syndrome. If you look up TTTS on google, you can find all you ever wanted to know about it. But, in brief, one baby was hogging a good portion of the blood flow from the placenta, and because of this, another baby wasn't getting enough. At the time, I had 6-7 weeks to go until the babies were viable. Left untreated, all three babies were likely to die in utero, or if they made it to 26 weeks, they would be born with major heart and brain problems and have to be cared for for the rest of their lives.

So, I underwent an orthoscopic laser surgery to correct the problem. I came through the surgery just fine, and the babies seem to be doing well so far. Dave and my parents took turns staying with me in the hospital. That is saying a lot for Dave - he hates hospitals. Between his own stroke and his parent's illnesses, he has only seen pain and suffering at hospitals, and prefers not to go at all. But he was there for me.

Now I am two weeks post-surgery, and back at home on bedrest. Dave has been an angel, keeping house, rubbing my feet, making certain I eat, test my blood sugar, making certain I take my medications, driving me to and from the doctor appointments.... Every now and then we joke that I spent the second half of my last pregnancy taking care of Dave, that it was all about Dave, and now it is Dave's turn to take care of me. Or that he is fobidden to have another stroke (his three-year anniversary is July 4). Or that it sucks that I have gestational diabetes, and can't send him out for Ben and Jerry's at 3AM just on principle.

I am feeling very lucky right now, that Dave is able to help so much. He better not have another stroke.

(Oh, and since I don't think I have mentioned it yet - the docs have decided we are having identical triplet boys. Dave wants to name them Thor, Zeus, and Mars. I'm not certain if he really wants those names, or if he is just saying that to get my dander up! Never a dull moment around here....)

How to double the size of your family overnight!

Just to make life a bit interesting, I am pregnant.

Dave took the news well. We had decided to try for another child. After all, Dave seems stable and more-or-less capable, I'm not getting any younger, and we were going to run out of chances soon. So, it seems that, while at Mardi Gras in New Orleans, I became pregnant.

What Dave didn't take well was the news a few months later. You see, we found out I was pregnant while merchanting at the Florida Renaissance Festival - a two-month show just north of Miami. We learned this after a home pregnancy test after the first weekend of sales. I was very careful at the show - drank lots of water, avoided alcohol and second-hand smoke, ate appropriately, slept a lot, let others do the heavy lifting for me. After the show was over, we went and spent a week at Disneyworld, on the way back home to Maryland. Honestly, I'm glad we did, because I certainly would not have enjoyed Disney so much if I had known what was coming.

We returned home on a Thursday night. Early Friday morning, I found I was bleeding. I called my midwives, and after some discussion, decided I didn't need to go to the hospital, but that I should go for a sonogram THAT DAY. And I did. I take the health of the babies very seriously.

Now, keep in mind, a sonogram SHOULD take about 20 minutes. They look at the kid, look for things like arms and legs, measure anything that can be measured, enter all the stats into an equation, and determine if the kid is growing appropriately.

THIS sonogram took an hour and a half. The tech and I were talking the entire time. "Did anyone come with you to drive you home?" "Is anyone waiting for you in the waiting room?" Such questions got me nervous, but we spoke of other things too, like her kids, the whacky weather, and whether or not I liked the midwives I was using. After a while, she said she was having trouble with some measurements, and needed to take the "alternate route". For you women out there, you know what I mean. For the men out there - the "normal route" is on top of the belly, so use your testosterone-laden minds to determine where an alternate route might lay. If you still can't figure it out, try this: Once the tech had been taking measurements for an extended period via the alternate route, I told her I wanted a lollipop when we were done. When she asked, "Why?", I told her it was because I don't smoke.

So, after an hour and a half, the tech finally looked at me and said that the office policy was to not discuss the results of a sonogram with the patient, and to let the docs and midwives discuss them with the patient. But, after such an extended exam, she felt she could tell me something.

"Would it be a bad thing if you found out you were having triplets?"

Needless to say, my jaw hit the floor. There is no history of multiples in my family or Dave's family. I probably shouldn't have driven home, but I made it, in shock.

Then I had to tell Dave.

I was able to bring some pics with me from the tech's office. I showed Dave one pic, where you could clearly see two babies. "Twins?" he said, clear as day.

"Triplets," I replied handing him another photo.

The last clear words that came out of him for hours was, "We can't do this." Then he went and curled up, fetal position, on our bed. I called one of the managers that work for me, and asked him to take Dave out drinking that night. That seemed to really help.

I didn't really break down until Easter Sunday. I called my sister, and her and her boyfriend were nice enough to have an unexpected Easter dinner with us. She sat with me for probably a few hours in the bedroom, and we spoke on various topics, including the pregnancy. She got me to the point where I could finally go take a shower and eat something. The next day, I saw my chiropractor (who has special training for pregnancies). He adjusted my neck and shoulders, and I have been more-or-less functional ever since.

Dave and I have been asked, on multiple occasions, "Is this congratulations, or condolences?"

Let me put it this way. I like new and different things, and this is certainly a new and different things. The idea of potentially having three little lifes as sweet and charming as our 2-year-old Rowan is definitely thrilling.

On the other hand, the odds of natural, spontaneous triplets is 1:8200 (or about .0122% of all births). Oh, and just this last week, I have learned that there is at least a set of twins in there, and it is quite possible that they are all identical. The odds of identical triplets? Something like 6% of triplets are all identical (which means 1:136,666 of all births), and 66% are identical twins with a fraternal brother (which means 1:12,424 of all births).

So, despite the excitement, I also feel like a freak.

I'm going to leave the story at that for right now, and continue it later. I have a lot of info I need to digest right now (and maybe you do, too). But don't worry - you will be hearing more on this subject later.

The importance of spelling

I have seen things like the below before, and find it incredibly interesting. Course, the next question is whether someone with aphasia can also read this. Or, for that matter, if someone who is dyslexic.....

cdnuolt blveiee taht I cluod aulaclty uesdnatnrd waht I was rdanieg. The phaonmneal pweor of the hmuan mnid, aoccdrnig to a rscheearch at Cmabrigde Uinervtisy, it dseno't mtaetr in waht oerdr the ltteres in a wrod are, the olny iproamtnt tihng is taht the frsit and lsat ltteer be in the rghit pclae.The rset can be a taotl mses and you can sitll raed it whotuit a pboerlm. Tihs is bcuseae the huamn mnid deos not raed ervey lteter by istlef, but the wrod as a wlohe. Azanmig huh? yaeh and I awlyas tghuhot slpeling was ipmorantt! if you can raed tihs rpsoet it.