Thursday night

I'm in Thomas' room laying on my favorite couch, which has been my home for the last two nights, and feels oh so inviting for this evening as well. Thomas is asleep, which hopefully will continue through the evening, minus the nurse visits to prod and poke. Last night he did fairly well, the night before not so much. I'm pretty tired, which has made it difficult to generate the energy to give an update. As such, I'm not going to format this entry and place the pictures judiciously within context.

Basically, all we are waiting on now is for Thomas to drink some formula, something he is absolutely not interested in. he's moving around good, sitting up, kicking, eating baby food. Just no liquids. He's on an IV, so that may be working against him. Never the less, he can't go until he does. Its fairly frustrating for all of us. As much as I love seeing Rebecca for an hour or so a day and sleeping on a piece of furniture that can be wiped down, we're ready to go home. Thomas is ready to go home, but he's stubborn as well and he knows what he wants and what he doesn't and there's no reasoning with him.

The last 2 days have steadily gotten better. Rebecca and her mom are doing the day shift, when Thomas is awake. Since he's bed-ridden, its up to them to keep him entertained, which is very draining. He's actually becoming somewhat demanding. He'll drop tears on you in a second if he doesn't have exactly what he wants in his hand. Hopefully this is temporary and he'll go back to his sedate self when we get back home.

I drew the night shift. The first night was very rough. Thomas was still in pain and despite being very tired, couldn't sleep. The slightest noise would make him stir and then subsequently cry. there was an hour stretch where he would dose off, get a body spasm, jerk back awake and cry, over and over. Finally, we decided to give him some drugs and he settled down. Last night was much better, he pretty much slept constantly between nurses visits, as did I. Its very disconcerting waking up and there's a nurse already in the room checking vitals.

Neither shift is good, and its been a little tough passing each other at night and in the morning. Fortunately, Rebecca and I went out to dinner while her mom stayed with Thomas last night and tonight. Two nights in a row of just the 2 of us eating at the same time in the same room is very rare. I could get used to it though.

Its late, so I'm going to grab some sleep while I can.

Video Update from Thomas

Well its 10:30 at night and Thomas woke up and wanted to address his public. The quality isn't great, but if you watch all the way through, he has some important words.

9 p.m. update

I'm sitting in Thomas' room listening to him talk and complain and occasionally cry a little. He's a little grouchy and not crazy about having a board taped to each hand. They ran an IV in each just in case and so in addition to having to lay flat on his back, he doesn't have full use of his hands. So yes, he's got lots to say.

All signs are good so far. We expect to be in the hospital for a few days, but he may be sitting up as soon as tomorrow. The doctor said that babies are much more resilient than adults and that what will take Thomas a couple days to bounce back from would take an adult weeks. Not to mention that, unlike adults, when a baby feels pain, they stop doing whatever movement causes that pain.



Rebecca's mom came in to town, which is of great benefit. We're working a bit of a rotation so that we can get out a bit and get things done. Thomas' primary nurse and guardian angel from the NICU, Tina came by this evening to make sure Thomas is on the right track and being properly looked after.




Thomas has fallen asleep, so I think that's my cue to sign off. I'm a little tired myself, so I might try to rest before the next nurse intervention. Every 3 hours all night. Woo hoo...

11am Update - The Consultation Room

Exactly an hour later and the nurse walks up and I was expecting her to hand me the phone again, but she said that it was time to go the consultation room to meet with the doctor. So we quickly gathered up all of our electronics and various bags, as we are loathe to travel lightly anywhere. We rushed into the consultation room and waited for the Doctor. He said everything went well. One large incision, 2 small pieces of bone (one at the base of the spine and one where the cyst is). The doctor found the cyst to be odd, but not threatening upon examination. He couldn't remove it because it was too close to the spine and has sent a sample to be tested in the lab. So hopefully that will be ok. He said when he cut the fat at the base, the spine sprang up a little, which was a good indication to him.

We're back in the waiting room, waiting (ironic). We were fortunate to get our original seat back (the music is still playing from the video game. There's no way to turn it off). Thomas is getting moved to recovery and then later today he'll be admitted to the hospital.

more to come

10am update

We're still in the waiting room. They give us an hourly update from the O.R., which I just got. A nurse actually calls us from inside. Basically all is well. They are still operating. Couple things that we weren't aware of before this morning. They have to remove some bone from the spine to get at it. In the future, it may need to be fused, but he didn't think so and that Thomas should be able to play sports. There is a possibility that the spine could become tethered again, so we'll have to watch out for that. I'll give you another update when there is something to say.

Things that I hate

I hate that surgery has to be so early in the morning that I have to wake Thomas up.
I hate that he is so trusting and happy that he doesn't fight getting into his car seat and doesn't get anxious by the familiar smells and florescents of the hospital. (My dog Charlie freaks out about any building with a linoleum floor because it means the vet, a bath or boarding, maybe one day Thomas will too).
I hate the look of shock and confusion on Thomas' face when
I'm holding him and someone sticks him with a needle to draw blood.
I hate all of the possibilities that the doctor has to disclose that could go wrong right before he takes Thomas away.

I hate the waiting room.
I hate this waiting room with a broken tv.
I really hate the Nintendo Mario Kart game that keeps playing the same song over and over and over.
I hate these chairs.
I don't hate the food in the cafeteria, but I'm not calling
Zagat's.

I hate that we have to put our lives on hold again.

I hate that we're so used to this routine that sometimes the magnitude of the situation is lost on me.
I love you Thomas. I love you Rebecca.

Et Tu Brute?

I still owe and plan to make good on the surgery clean up from a couple weeks ago. There is much to be said about that. But in less than 12 hours, Thomas goes under the knife again, and hopefully for the last time for the foreseeable future. This one makes us all a little nervous, especially Rebecca (she's a mom, so she says its ok).

I think I've mentioned that Thomas has a tethered spinal cord (if not, I just did and we'll move on). A tethered spinal cord is not as bad as it might seem I guess. Basically babies' spinal cords are not fully developed. At the end of the cord are a bunch of nerve endings floating free in a sack of fluid. That sack of fluid can sometimes adhere itself to something else down there. As it happens, this is fairly common with Preemies (I swear, we really should have gotten one of them regular babies). If nothing is done about it, as a baby grows, the spinal cord gets stretched and, needless to say, nothing good comes of it. So the thing to do is go in and untether it.

This procedure is obviously dealing with the spinal cord, so a neurosurgeon performs it. Now the good thing is, as far as procedures a neurosurgeon performs, this is a relatively minor procedure. There is a cyst on the cord that he wants to check out, but all in all, we should expect about 4 hours in the OR, where they will stab him in the back (hence the clever title). From there he/we will spend 2 to 3 days in the hospital recovering. Then he should be completely back to normal. I know Rebecca would appreciate any prayers and well wishes that you can throw Thomas' way tonight and tomorrow. I will update things tomorrow, and maybe get caught up on other blog items.

Mike

Of Vanity and other deadly sins

So, some of you may have noticed that Thomas is wearing some sort of apparatus on his head, but have been too polite to mention it. Is he planning to play hockey? Does he fall alot? Is he hoping to be cast in the next Tron movie? (Yes, I know this one is for a very select segment, but it was a great movie. Look it up)











Well all are really poor guesses, so shame on all of you. I must admit, prior to being a parent and remotely caring about other people's children (I still really only care about Thomas, no offense to other children who may be reading this. By the way, good for you for reading!), I saw babies wearing helmets and had no idea what was going on. My best internal guess (because I never bothered to ask) was that the helmet was protecting a soft spot or something else that wasn't fully developed. Little did I know that I'd come face to face with the very helmet that I rarely gave a second thought to (probably not as ironic as I'm implying).


Turns out, the helmet is used to shape a child's head, to make it nice and round for that day in the future when Thomas decides to shave his hair either on a bet or in tribute to Michael Jordan. Thomas spent 5 and a half months, mostly on his back, which gave him a rather flat head in the back. The nurses did a great job of rotating him to minimize the effect, but you can only do so much. You basically have 2 options; Option 1, sit back and let nature take its course, hoping that the head will work itself out or that Thomas develops a talent in baseball or bull riding (where a hat is required), or option 2, shape the head with this contraption. This is completely cosmetic and he's not in any danger health-wise. We're just trying to bump Thomas up a notch more on the cuteness scale.


We debated about this greatly. We were concerned about whether this was a good investment, whether the helmet would hurt Thomas, whether we wanted to pile one more thing on Thomas' plate. There were many arguments in favor of not doing anything:
1. He could use his head as a coaster (what a great party trick!)
2. The flatness of his head would make him extremely aerodynamic in the tuck position when riding a bike.

Actually those were the only 2 real positives I could come up with, so we went with the helmet. We're such good parents.


Thomas wears the helmet 23 hours a day and he will probably wear it for 2 to 3 months. It just depends on how quickly he grows. The helmet is designed to encourage growth and we go in once a week or two and get adjustments. They measure the head and shave away the Styrofoam on the inside. He's already making good progress, so hopefully we won't have to wear it too long. It doesn't seem to bother him too much, but he does like to bang it with his hand.

Its Wednesday, so let' start cutting...

Five a.m. It probably doesn’t have much significance, or isn’t a big deal to most people, but in the Elliot household, it’s not a time of day that we see much of. We’re more night owls and thoroughly uninterested in getting up before the sun does. Even Thomas has adjusted and is more than happy to ease into the morning at his own pace. There is very little that would alter that for us; Haley’s Comet seems appropriate or a World Cup soccer match. The other reason is surgery. They always seem to schedule surgery early in the day. Such is the case today. Thomas is currently in surgery for various procedures on his private areas. In the interest of discression and modesty, I won’t get too specific, but he is getting circumcised and having 2 other procedures in the same area. I really hate that I haven’t kept you all up to speed, because there is a bunch that needs to be revealed. Just seems that every time there is something to write, I’m left without time or energy or both.

Oh well, no use crying over spilled blogs. This is a day surgery, so we’re only supposed to be here for 6 or 7 hours. Plenty of time to whip this puppy out. Today we’re at Medical City Dallas, which brings us to hospital #4 on Thomas’ bucket list of hospitals that he just has to visit. We checked in at 6 and scooted upstairs to get vitals and slip into a sexy smock (Thomas got one too). Then down to pre-op, which was (Still is I guess) a large room with about 10 beds separated by curtains. Every bed had a child of varying age waiting to meet with their doctors and get rolled into surgery. I can’t imagine how much tougher it is to deal with your child’s surgery if your child knows that something is up. With Thomas, we have a wild child who is blissfully happy at all times and almost immediately bounces back from anything traumatic. The other kids had fear and trepidation that you could see in their eyes. The doctors and nurses are obviously well acquainted with this, so they do their best to become their friends and make them laugh. It was a lot like watching a standup comedian warm up an audience, but there were 10 stages, so I could hear all of the routines.

We ran into one of Thomas’ NICU surgeons, Dr. Hermann, who had been a favorite of ours. He had performed the hernia surgery and when we saw him today, he remembered the exact bed that Thomas was in when Thomas was his patient close to a year ago. Great parlor trick. Then it was time to wheel Thomas out and scoot us to the waiting room. Medical City has a cool feature. They have monitors all around, similar to at airports that give you an update of the progress of the patient, procedure under way, procedure closing, finished. The nurse gave us a sheet explaining the monitor and said that she would write down a code so we would know which one is Thomas and still protect his identity. The tricky code is: ELL__T, T. Very hush, hush and complicated. Reminded me of the Navajo who were used to transmit messages during World War 2, inpenetratable. Wait…no…they just hid the vowels. Now Rebecca and I are sitting in the cafeteria, passing time til Thomas goes to recovery.

After this, Thomas has one more surgery, the tethered spinal cord. I’ll update you after Thomas gets out.

Merry Christmas

Its Saturday night, the day after Christmas and things have calmed enough to try and update this darned thing that calls to me and make fun of me when I can't get to it, much like...well, just about everything that has needed to get done over the past 6 months. I'm bailing just enough to keep the boat afloat, but that's really not a great approach, because I'm afraid that eventually I may get tired and not bail as fast as I need to. Such is the life of a parent. Which always makes me wonder how a single parent pulls this off, how a parent with twins possibly pulls this off, how anyone voluntarily goes through this. But I digress.

As usual, Thomas is still the cutest, most well adjusted, happiest baby ever. Despite anything life throws at him, he just rolls with the punches.

You'll have to forgive the pictures that I choose. There are many, many cute ones to choose from, but I really like the funny ones better.

Christmas was just one big love fest, as we spent it in Shreveport with Rebecca's family and relative after relative swooped in to gain Thomas' favor. Its really nice for us, because we can just sit back and monitor hand washings, but otherwise stay hands free for the most part. Which is a very good thing, because at almost 15 pounds, he's really getting heavy. Everything was really wonderful, Thomas got more toys than he will probably be able to play with before next Christmas, Mom and I got to relax a little and Aunt Leigh got her nephew fix before she headed back to South Carolina.

My only complaint was that somehow, of all of the potential places we could have been, Shreveport, Cincinnati, Washington DC or Dallas, we managed to pick the one place that didn't get a White Christmas. There was a chance, and I spent most of Christmas Eve watching weather maps and reading forecasts in the hope that the snow would reach us, but to no avail. I love snow, get very child-like about it (which I probably do about alot of stuff come to think about it), and get my hopes up any time I'm somewhere where the temperature dips and the clouds are still around. For some reason, I always manage to be in the wrong place when it occurs. I was in Belton last year when it snowed in Dallas and missed it again. Oh well. I'm not going to pout about it (anymore).

I took some videos of Thomas' first Christmas, you can find them here.

http://www.youtube.com/watch?v=5vw1kaXkRTk

http://www.youtube.com/watch?v=xgMxwQj4fqQ

Let's see, what can I catch you up on? Development-wise, Thomas is moving along. He's desperately trying to figure out a way to be mobile on his own, because we're not keeping up with him. Thomas is big on moving, especially if we try to just sit and try to take a break. That's when he starts jumping. Up and down, his legs are much stronger than his balance is ready for, so it becomes quite a workout for all parties involved. Thomas talks up a storm, although nothing truly profound or coherent yet. He's also able to show you that he's one, by extending his index finger. He also extends his thumb, so one could argue that he's brandishing a gun. But in these kinder, gentler times, we'll just say he's very excited about his upcoming birthday, which is in 7 days for those who may have forgotten.

Not to be disjointed, but I'm kind of going stream of thought here and I would be remiss not to step back and realize that it has been almost a year since Thomas demanded I start writing about him (he's quite pushy). This day last year, Rebecca was on bed rest in her parents house, although technically, she spent most of it on the couch in the living room. I'm not good on historically perspective, but I think its probably an understatement to say it doesn't feel like a year. There are aspects that seem like years ago, but at the same time, weeks disappear like days. Once again, thank you to all of you who helped us through this journey. There have been times when each of us were unsure whether we had the strength to go forward and there are many of you who have nudged us along. So thanks again and now back to Thomas and how awesome he is.

As I mentioned before, Thomas is so good natured. Rarely does he cry, and if he does, its probably for a good reason. The only occasions that he does are if he gets stuck in the car seat too long (which would be about a minute and a half for me), if he gets scared, which is tough to scare him (I keep trying, although the whole wolfman costume I keep using may end up scarring him), or if he has a nightmare, which is about the saddest thing I've ever seen. Simply holding him and calming him down is all it takes though. So, basically, if it wasn't for the whole prematurity thing and all that came along with it, we'd have the child that every other parent would envy and hate.

You may have noticed that Thomas has glasses in some pictures, but for the most part, he doesn't wear them. Simple explanation, they're reading glasses. Took us a few weeks to realize that he can't read and that he was mostly just looking at the pictures. Actually, Thomas is wearing contacts now. I know...isn't that just the nuttiest thing you've ever heard? We did alot of research on this. Some doctors are more in favor it than others. Basically the pro is, unlike glasses, with the contacts, you can quickly adjust the strength of the lenses to accurately reflect what a baby Thomas' age should be seeing, which is really about 5 feet away. The glasses just fully correct his vision based on Thomas' near sightedness. The theory is that the eyes can strengthen a little better with the contacts and stave off the near sightedness longer. Of course there is a challenge that arises and is probably obvious to everyone, what color lenses do you get to accentuate his boyish good looks?

There's also a secondary issue, how to get a baby to lay still and allow his eye lids to be pried open and a large finger apply a foreign object onto his eyeball. Surprisingly, its fairly difficult. It takes 2 people, alot of patience, some delicate leverage and...well its just really hard. He also doesn't know that he's not supposed to rub his eyes once they are in.

There's much more to write, but I'm saving it for other posts. So if you're still out there, check back.