Friday, January 30, 2009

Ask Thomas

Hi, and welcome once again to Ask Thomas, a question and answer column, where I, Thomas, a baby in the NICU, bring my weeks of experience and life knowledge to the table to answer your questions and solve life's problems. OK, well let's get right to it.

Our first question comes from Leigh Ann V. from Alexandria, Va. She asks:

I don't understand the Kangaroo Care thing, can you explain what this is?

Good question Leigh Ann. Kangaroo care is a method employed in the NICU to create a bond between a resident of the NICU (a baby) and the parents. Basically the parent holds the baby on their exposed chest. This provides warmth and a direct connection between the parent and the child. Typically this starts out once a day for an hour, depending on how the baby does. In the future, the length and the number of times will go up. So the parent has to wear a button down shirt or a shirt with a zipper. My dad wore a bike jersey the other night. I thought it looked cool. Here's a video of me being moved from the Isolet to my mom's chest.
http://www.youtube.com/watch?v=Uh-uA63TgDY

Our second question comes from Joe J, who lives north of Dallas (not sure why). He asks:

Hi Thomas. I have trouble with the ladies. Can you help me out?

Joe, first let me say, I hear you brother, women are tough to figure out. I could tell you some stories. But let me suggest one thing, be confident. Women smell desperation. Treat them with respect and be honest. If none of that works, just lie down and act completely helpless. Its working awesome for me, I've got women all over me 24/7. I could have gotten up and walked out of here 2 weeks ago, but I'm milking this gig for as long as I can. Hope that helps.

Finally Winston from Wala Wala, Washington writes:

What's a henweigh?

About 2 pounds.

Until next time, keep those questions coming.
I'm Thomas. Peace out!

Thursday, January 29, 2009

Videos of Thomas Kangaroo Care

Here are the videos I promised last night:

Rebecca and Thomas:
http://www.youtube.com/watch?v=-zB7Q_EMiCg

Mike and Thomas
http://www.youtube.com/watch?v=jz2Ox3tfz48

Close up of Mike and Thomas
http://www.youtube.com/watch?v=R5Wyqz-lxPY

FREEDOM!

Well a late night visit revealed a little boy who was overjoyed to be free of his shackles, as you can see below. Either that or one of the other babies started the wave in the NICU and Thomas just wanted to fit in. They've removed all of the IVs and PAL from his limbs and he is MUCH happier.


















The next thing we learned was that Thomas is not the biggest fan of Kangaroo Care at 11:30 at night. This was my first time to try it, and Thomas' second, and it took most of the hour to really get him comfortable. He spent a great deal of time doing push ups off my chest. On the bright side, I'm pretty sure he can bench at least twice his body weight.


















It was still very cool, but we were both tired. Once Thomas was placed back in his isolet, he'd had enough of being moved around and told the nurse no mas (below). I am uploading the videos, along with the video of Rebecca and Thomas from Monday. I will update this post with the links. A bunch of new photos have been uploaded to the gallery on the left. Its 1:30 am and I'm tired. Say goodnight Gracie.

Tuesday, January 27, 2009

Braving the cold/Doc Talk

Rebecca broke through the polar ice cap this afternoon to visit Thomas and visited with Doctor Quan, who I believe is the lead doctor for Thomas, although he has a team of doctors and nurses that looks a lot like the Verizon team from the commercial, so its a little hard to follow. I guess this was the 3 week, 4 day update that is so common. Anyway, as seems to be typical with many doctors, he was full of mixed messages and contradictions.


First the good news. Thomas' blood tests have been consistently good. They gave him some blood this morning, because they do take so much blood with all these tests. Since they have been consistently good, they will scale back on the tests. He's holding steady on 4 ccs of milk every 3 hours. Once they've given some time to the latest blood transfusion, they may increase the dosage of milk.


Second, because his blood oxygen mix continues to be so good, they may take him off the current method of a tube straight into his lungs and switch to the tubes that sit in the nostrils, which would again be a very big step. This could happen in the next 2 to 3 weeks.

On the other side, Dr. Quan revisited the bowel that is still now protruding from Thomas' stomach. He wanted to let us know that it will take a long time for this to heal, there still may be complications related to it. Just to revisit, the original reason we began down this path back in November was "ecogenic bowel", which is a condition in the womb that shows up on the sonogram as a white spot. In a way, it was a good thing, because the investigation of that led to us finding out about the blood flow issue.

The way it was not so great was the perforations in the lower part of the bowel. In the past, the method for treating this was to remove the part of the bowel with the perforations. This leads to more complications and challenges. The bowel is used to break down and ingest food. The shorter the bowel, the less absorption. The doctors chose to perform a new procedure, which was to pull the bowel up through an incision in the abdomen, and then he goes #2 there (I'm very sorry to be gross here, but I just can't figure out any other way to describe this. Believe me, I've racked my brain). This allows the lower part of the bowel to heal and saves the entire bowel. Dr. Quan wanted to reiterate that this will be a very long healing process.


The other message was that Dr. Quan wants to test for Cystic Fibrosis. The combination of the bowel issues and the congestion in his lungs are both symptoms and so Dr. Quan feels there is a possibility there. This is something that they won't be able to test for until Thomas moves on to the next level of NICU. It involves a sweat test, which Thomas isn't capable of yet. My own educated diagnosis makes me doubtful of the possibility and hopeful. Rebecca had an early test that I believe lowered the possibility of her being a carrier to 2%. I believe I would also have to be a carrier for it to be possible. I may have those probabilities wrong, so Rebecca may have to correct me. But we won't know for a couple months, so let the waiting begin.


Sorry for the down swing, but you know, this is an all news blog, not just good news. So please keep the prayers and well wishes coming.


Also, we do read and enjoy the comments and I'm happy to make this blog interactive, so if anything doesn't make sense or you have additional questions, feel free to post them and I will answer them to the best of my ability.
Mike

Monday, January 26, 2009

Thomas' big day out.


























I think the pictures speak for themselves, but then what use would I be? Rebecca got to hold Thomas today for 2 hours. The only thing to interrupt their first encounter was hunger, by both mom and son. We hope this is the first of many more mom/son moments. There is a video, but I'm in Belton and the idea of teaching Rebecca how to load the video over the phone is not super appealing so you'll just have to settle for the video we took last night. The link is below.
http://www.youtube.com/watch?v=p90PMOC4QOg

AP News Wire Story

Dateline January 25th, 11:41 PM
From the Associated Press
"Amazing growth spurt has College Coaches buzzing"

Dallas, Tx: A newborn infant has turned up on a number of college basketball programs watch lists, which may have fans asking what the heck is going on? It seems that in an effort to get a jump on the competition, scouts are leaving no stone unturned, with some going to the extreme to find the next big man. One potential gem has been found in the NICU at Baylor Medical Center in Dallas. His name is Thomas Alexander Elliot, and upon first site, to the untrained eye, he just looks like a cute, if somewhat undersized baby. Closer examination reveals little more that should draw the frenzy of attention that Thomas and his parents have received in the last week. Thomas has fielded 43 "unofficial" verbal offers from division 1 schools, even though he weighs less than 2 pounds and cannot shoot or dribble, let alone stand.

I caught up with Duke coach Mike Krzyzewski in the lobby of Baylor. Asked why Thomas had peaked his interest, Coach K was cagey. "Well, first I'm not saying I am interested." said Coach K. After a pause, he looked around and added in a hushed tone "OK, here's the deal. My scouts told me that Thomas grew an inch and a half in 3 weeks. Now I know that only makes him 11 and half inches tall, but if we project out, at this growth rate, he'll be 6 feet tall in less than 2 and a half years, 7 feet in 2 and 3/4 years and 8 feet in 3 and a quarter years. I'd be a fool not to go after that kind of raw talent." Asked if he was concerned about Thomas' lack of ball skills, he said "if I can get him into my program when he's 9 feet tall, I'll teach him everything he'll need. He won't be spending alot of time outside of the paint."

Mark Cuban, owner of the Dallas Mavericks, was contacted to comment on this development happening in his backyard, and if he planned to get in on this in case Thomas decided to skip college and go straight to the NBA. He issued a statement: "While the prospect of a 10 foot tall swingman that could clog up the paint is certainly intriguing, I've drafted enough white stiffs to know when to sit one out, and this one seems like that type of situation."

Thomas' parents are remaining guarded about Thomas' plans. His dad was caught on camera pushing a reporter out of his way while yelling "Get a life you idiots, he's 3 weeks old." The mother was a little more pragmatic, "Well you know, if this is what's going to happen, I hope Thomas remembers that I've taken care of him all his life. That ought to be worth a house or one of those big ski boats, or something."

We will continue to follow this story as Thomas develops.

Sunday, January 25, 2009

Family Time

Just got back from riding my bike around on a beautiful, if a little chilly afternoon. Its a great way to clear your head and think of something clever for whatever blog you happen to be authoring at the time. I ride through a neighborhood that has lots of hills (at least for Dallas) and it was just bubbling over family moments. A dad pulling his child in a bike carrier, about 10 dads and their kids playing soccer ( I saw one dad using his size a bit unfairly to head the ball in towards the goal. He might have been losing the spirit of the moment), a mom, dad and 2 girls planting flowers, and on and on it went. Probably no different than the dozens of other times I rode through there, but you notice these things. In a good way.

We got a chance to get out last night and went to a celebration of some friends of ours who got married. John and Misti have a beautiful baby girl and John put together a wedding video that would make lesser men cry (I simply had a piece of dirt in my eye and my allergies were acting up). It documented their journey and not only how much they clearly love each other and are meant to be together, but how their daughter has absolutely turned John into a sucker for her. You can hear it in his voice and see it in the pictures and videos. No boy stands a chance walking up to the door to take Katlyn out on a date. So anyway, it was really neat to see and be happy for them. I think someone asked Rebecca if it was tough seeing that sort of thing, since we don't get to hold Thomas or have him at home. The answer is no. We don't envy them or any of our other friends. It simply makes us look forward to the things to come. Plus, as Rebecca has said a few times, this is our first baby and we don't know any different, so we're cool with it. We will look back on it as an amazing experience I think.

I've buried the lead a bit, very much a journalistic no-no, but since I'm not being graded, you'll have just had to read through my ramblings to get to the meat of the story, which is how fantastically good Thomas is doing today. First, milk, he started Thursday on 1 cc every 6 hours, then it moved to 1 cc every 4 hours, then 2 ccs every 4 hours. Today only 3 days later, he is now on 3 ccs every 3 hours. And he gets mad if he doesn't get it. Starts fussing and crying. So really awesome! Second, they have taken him off the big respirator and put him on a small one. Which is even awesomer! These 2 things lead to the biggest thing. There is a chance that if everything stays stable tomorrow, Rebecca will get to hold Thomas. Which would be the awesomist! (its a word, look it up.) Things may change, but just the thought really sent us both for a loop. We really didn't expect this, we didn't even want to speculate on when this could happen. Video will follow if this does occur.

Friday, January 23, 2009

3 Weeks Young!

Well Thomas hit the big 3 week milestone this afternoon. I believe the appropriate gift for 3 week anniversaries is xbox games. I'll just hold on to them til I deem it appropriate for him to play. First, the really good news. He had his second brain scan and it again came back negative. This was very big news and a great relief for both of us. Prior to this week, we were really in a good frame of mind after the first scan. Then one of the nurses said that alot of times things don't show up til the second scan (Kind of a Debbie Downer moment for me. They just can't let you be blissfully ignorant). So we spent the week being a little anxious and agitated (so did Thomas). Which culminated in last night's visit.




This was the picture last night. Thomas was fairly mummied up and really unhappy about it. On his right hand, you will find a PAL (I assume that stands for something medical, but it could just as easily be Puffy Arm Lasso, prove me wrong.) They use this to constantly check his blood pressure, and can quickly and easily give him a blood transfusion. On his left arm is an IV which they were using to give him some calcium because he was a little low. On his left leg was another IV that they were using to give him something else I forget now. On his right foot is a device that tests his O2 mix. On his left side are a couple EKG patches. In his mouth, the respirator and a feeding tube. In his neck, a catheter. Not visible is his exposed bowel in his abdomen and an abscess (fancy name for a sore) on his right thigh.



As you can imagine, Thomas was kind of pissed and it wasn't really comfortable watching him. So this visual, along with the impending brain scan just left us worn out and a little down.



What a difference 24 hours makes.
We got the test results back, there does not appear to be an infection on that abscess, Thomas seems to be handling the milk pretty good (they're increasing the frequency), the mucus/congestion in his chest is getting a little better, they removed one of the IVs and he just seems a little more settled and comfortable.

They've still got his oxygen kind of high (40- 50% plus), and his blood pressure is a little low, but overall things are really good. Just lots of little bumps in the road. Lots of ups and downs. That's just how its going to be.


Whew. That was alot of information with out much humor. I'll try to think of something clever on a future post. For now, we can all just sit back and know that overall Thomas is progressing and is much more peaceful and cooperative today.
Mike

Thursday, January 22, 2009

He drinks your milkshake. Drinks it up!

I envision a number of question marks hovering over heads around the country based on the title of this post. Its a quote from a movie "There will be blood". Won some Oscars, very artsy, but the quote is appropriate. Today is the first day they are going to try to give Thomas some milk. Big step, hopefully it goes well. Its not the end of the world if it doesn't. He may not be ready yet, but its a good sign that they are giving it a shot.

Tuesday, January 20, 2009

Eyes Wide Open


The little guy to the left is Thomas (just in case anyone forgot). Rebecca caught this shot today and sent it to me to pep me up as I'm once again out of town and neglecting my family. Little known fact, the picture is actual size...

Not really, but a number of people have been having a little trouble getting a perspective on his size. He's basically about the same size as Rebecca's hand, so next time you see her, hold up her hand and gaze at it in wonder. If enough people do it, it will start to creep her out, then we all win.

Everything is good for Thomas. Sadly, a little of his weight gain is attributable to all of the fluids they've been giving him. His sodium is a little low, so their going to back off the fluids, which means he may lose a little of that weight that he'd gained so quickly, but again, everyone is happy with where he is and he seems to be a fan favorite in the NICU.

Monday, January 19, 2009

Casual Conversations

Each day I ponder what's been going on and if there's really any material worth sharing with whoever is out there. I don't want to lose Thomas' audience with a lack of news or force unnatural writing to fill space. Fortunately, this blog seems to write itself at times. Thus brings us to the conversation we had with Tina (Thomas' weekend-night-time primary nurse) when we visited this evening. Tina, and most of the nurses, has a very casual way of describing what would probably be somewhat scary events in a manner that makes me at least, lose the significance of what she tells me until after I already know things are alright. I believe it comes from a lot of things becoming almost routine and therefore almost uneventful to them. So I will describe the conversation, but my bedside manner isn't as good as her's. Just know that it wasn't a big deal and everything is fine.

Thomas has got some liquid and/or mucus in his lungs that they are trying to break up and clear out. Tonight, before we got there, his breathing vital started to decrease and then his heart beat dropped. Basically, because of the stuff on his lungs, they clamped up. Tina described as kind of like a charlie horse in your chest. This means he isn't responding to the respirator and his lungs seize up. So she had to get the assistance of another nurse and while Tina used the manual respirator, the other nurse suctioned the liquid from his lungs. They pulled out a good amount of junk, which is good, and got him settled down. Then he was fine. Tina said that sometimes the manual respirator doesn't work and you have to let them "see the light" before they settle down on their own and the muscles relax. It seems worse reading it than it really was.

The respiratory specialist came by to check on him while we there and said he was doing very well. She did a percussion treatment on him, which basically is a little massaging tool to loosen up the gunk. Thomas responded very well, seemed to like it, which the specialist said most babies don't.

So overall a good visit. He was very peacefully sleeping on his tummy, which he likes more than on his back. Just occasionally opening one eye and checking us out. He looks really healthy, filling out his skin and losing his runway model-like features.

His vital stats for today are as follows:
Height - not sure, he was laying down, but I think he's still 10 inches
Weight - 1 pound 7 ounces! Growing good
O2 mix - Consistently less than 30 %
40 yard dash - 5.6 seconds, but there was a strong head wind in the hallway, his isolet wheels are a little sticky and I have a tight hamstring.

Sunday, January 18, 2009

Maintenance

Nothing terribly exciting today, status quo. Rebecca's sister, fiance' and mom have headed back to Shreveport, so things are a little quiet and Thomas will just have to be happy with us staring at him. Since there's not a lot going on, I wanted to paste in the emails that I had sent prior to setting up this blog, just so that everything is in one place. Its like watching the History channel. Enjoy..

Sent December 29th "Update on Rebecca and the baby"

Hi to everyone,

Sorry for sending out this information in this format, but things have happened rather quickly and so we have not had time to talk to anyone about what is going on. As some of you may know, Rebecca and I found out just before Thanksgiving that the baby was not growing as quickly as they wanted. We saw a specialist and did some tests and thought we were out of the woods. Last Monday we went back to the specialist for a check up and the progress still was not where it needed to be. Not to get into any great detail, but the baby is not getting the necessary blood to support growth. Rebecca was put on bed rest and we came back in today with the strong possibility of her being required to stay in the hospital, which is what has happened.

At this point, the doctors are trying to keep the baby in the womb as long as it's safe and beneficial, which may be a day or may be a week, or more, it's a day by day thing. Because it is still very early in the pregnancy, once they determine the baby needs to be delivered, the baby will go straight into ICU until term. Rebecca is safe and in good spirits. She is in Baylor, can receive visitors, email and phone calls. We are very hopeful and appreciate any prayers and well wishes you can send her way.
Thank you,
Mike and Rebecca Elliot

Sent January 1st "New Year Update on Rebecca"

First I want to thank everyone who has come by, sent flowers, emailed, called, etc. It has been wonderful and overwhelming. We also really appreciate those of you have shared similar experiences that they or loved ones have gone through. Its really surprising and comforting to know that so many people have had to deal with this and come through it stronger and with positive outcomes.

Since Monday when Rebecca was admitted, we've actually gotten mostly positive news. The biggest issue which hastened all of this has actually subsided. Our specialist was actually surprised by this and was certain that Rebecca would have given birth by now, which makes me wonder how special he really is (just kidding, he's reallly, really good). The baby's heart beat has been consistently strong and the baby really active, especially after Rebecca eats something with sugar in it. The doctors are still very cautious and historically its more of a matter of when the issue comes back as opposed to if. But every day we don't have to do anything increases the odds for the baby and tomorrow is 26 weeks, which is a good milestone.

Again, thank you for all of the offers for support and well wishes. I will send another update next time there's something interesting to share.

Mike and Rebecca

Sent January 2nd "Baby Boy Elliot"

Apparently 26 weeks was more of a milestone than we thought. Despite several good days in a row, the issue that was destined to return, did, and the doctor made the decision to go after him this morning. So rather than going to the Cotton Bowl to root on Ole Miss (which he will be reminded of for the rest of his life), Rebecca and I came to grips with a January baby and went down to Labor and Delivery to wait for the proper time. As predicted, it came right as Texas Tech was about to kick off.

Baby Boy Elliot was born at 1:48pm and weighed exactly 1 pound. So whoever had January 2nd in the baby pool can collect their winnings at the hospital. According to the doctor, every thing went textbook. We got to see the baby before they took him up to the NICU. The nurses said he was cute and looked just like a baby, only smaller. So, so far so good.

Rebecca is resting in Recovery right now and will be moved back up to her room (LR311) this evening. She will remain in the hospital til Tuesday.

We're still working on a name, this kinda snuck up on us.
Mike and Rebecca Elliot

Sent January 4th "We have a name"

It is Sunday evening and we'd like to anounce that we have chosen a name. Before the big reveal, I'd like to thank all of the unsolicited contributors, especially those of you humbly offered up your own. We also got many names related to the Cotton Bowl, but I think Jevan-Graham Snead-Harrell “Cotton” RedRebelRaider Elliot is a bit wordy.

So we're going with Thomas Alexander Elliot.

This will also be the last time I will clog your mailboxes with my cleverly worded emails, at least as it relates to Thomas. I've set up a blog for those of you that would like to keep up with Thomas as we go through the next few months. The blog can be found at http://thomaselliot.blogspot.com/.

Rebecca, Thomas and I would like to once again thank all of you. Its been a very surreal and trying time and things will certainly be challenging going forward. All of your well wishes and support have really made a significant difference. We are overwhelmed and indebted to you. I also apologize that we have not been able to answer everyone's email yet. Please continue to send emails to Rebecca if you get a chance, it truly means alot.

Thank you,
Michael, Rebecca and Thomas

Saturday, January 17, 2009

Back Home

Arrived back in Dallas last night and went straight to the hospital for a little father/son bonding. This was the first time I'd visited Thomas by myself. So we played catch, talked about what he wanted to be when he grew up and began sketching out the design for his tattoo sleeve.

First the important stuff, he's still doing good, not particularly cooperating (which bodes well for Rebecca in the years to come). The blood pressure sleeve that turned his toes blue on his left foot, did the same on his right, so they tossed out that plan. It really isn't critical to monitor him constantly anymore, so they are checking it once an hour.

Rebecca's sister, Aunt Leigh, made her triumphant debut, and along with Me Ann and Rebecca, was treated to a bonus as they raised the roof and lowered the isolet so that they could really get close and hang out with Thomas. (Videos will be up shortly) Unlike the unfortunate incident with our rabbit, there were no injuries.

As I mentioned this was the first time I visited alone, and I wasn't crazy about it. Mostly because I didn't have Rebecca there to talk to and comfort(which keeps me busy and doesn't let my mind wander), and since Thomas refused to open up and engage me in a debate on the pros and cons of a college football playoff, all I could do was stand there watching every reading from the monitors and corresponding movement from Thomas. It was a frustrating and helpless feeling. Readings would dip and rise and Thomas has alot of tubes to contend with, so sometimes (especially when he's just not in the mood) he looks less than peaceful. So standing there, I wanted the nurse to be singularly attentive to every dip and alarm. which is stupid and unrealistic, but hey, I'm a parent, I can be stupid and unrealistic. But I kept my thoughts to myself and just screamed inside my head.

I do want to say that the nurses are truly amazing. They work 3 12-hour work days in a row and are responsible for 2 children. They are given immense responsibility and it appears they have significant authority to make decisions. It is clear that they all get very attached to the children they take care of. I can't imagine the burden this is. So I just want to acknowledge that they are awesome in case I ever act otherwise.

Thursday, January 15, 2009

Update from Dallas via Belton

Day 2 of Thomas not having a father figure in his life. I'm concerned that he's making the right life choices without me there, so I'm going back tomorrow. I go back and read this blog a few times a day, just to connect with Thomas and get through the day, and I've got to say, man, the author is clever. Just kidding.

Enough about me, you're probably here to hear about Thomas, sheesh. Last night was a little rough for him. His blood pressure dipped a bit, so they had turn some more knobs and now he's wearing a giant sleeve on his leg so they can check his blood pressure constantly. Basically they had to up his oxygen, which when you do that, constricts the heart a bit. This lowers the blood pressure. They prescribed small amount of dopamine and adjusted the oxygen a bit. They had to increase his oxygen in the first place, because his right lung was partially collapsed, but the treatment has worked and the lung is healing.

So today Rebecca and her mom went up to see Thomas and take a bunch of pics to send to me (which I will post when I get back to Dallas). Thomas was exceedingly active. They had the lid of the isolet up, so mom, Me Ann and Thomas were able to be very close together. He was stretching and kicking and opening his eyes wide. He even seemed to be reacting to the voices of Rebecca and her mom, looking at each person as they spoke. I understand there's some really cool video as well. I will review the cinematography, lighting and editing to determine if its worthy of posting or should be sent straight to Sundance.

Rebecca and her mom are visiting again tonight, so I'll update if anything else exciting happens.

Wednesday, January 14, 2009

Absentee Dad

Had to go back to work today, which happens to be a couple hours south of Dallas. I found it very hard to concentrate and be productive (Mark, please ignore that last statement and substitute it with this: I was like a buzz saw at work, doing the job of of 3 people). Its very difficult to be away. I could have missed the first time he threw a spiral or solved a New York Times crossword puzzle. He's probably just laying there sleeping, but you never know.

So today's update comes second hand from Rebecca and her mom, who graciously drove over from Shreveport to look after Rebecca while I'm gone this week. Thomas is doing very well. He's getting more and more back to his old (relatively speaking, not a huge body of work there) self. He specifically very defiant about being swaddled. They try to do their best about recreating the womb environment, including kind of enclosing him securely. He's really having none of that, doing lots of kicking and stretching his legs out.

We're in healing and growing mode. There are no specific plans to do anything coming up, just wait and see.

Rebecca also got to see his tongue today. I can only assume he was sticking it out because he thought she was about to take a picture.

Tuesday, January 13, 2009

The Day After

Hi everybody, we just got back from seeing Thomas (and picking up semi-healthy seafood from Big Shucks. Its still healthy on the inside even if its breaded and fried, right? ). Thomas is doing extremely well. As you can see from the video above, he's opening his eyes and moving around a bit. Everyone is very pleased with things thus far. His guardian angel is very dilligent. From the start of this pregnancy we've been fortunate several times to find out things and identify issues and get care when it was needed. So for now, thumbs are up and outlook is positive.

I think our next big hope is that he heals from surgery without any complications and that his lungs start to get stronger (which was the goal of the PDA procedure). He will be on the respirator for a while, but other than continued stability, it would be a great bonus to move forward in this area. They are also looking to put some weight on him now, with a goal of 3 pounds, which sounds crazy big, but he's already at 1 pound, 3 ounces. He's being fed intraveneously proteins and electrolytes (basically they've got him training for a triathlon). In a couple weeks, they will start to introduce milk to see if he can handle it.

That's about it. I've added some more videos on youtube. I will leave you with a quote from an unidentified mom. "You know how alot of moms will think their baby is cute even if they really aren't. I'm just glad my baby really is cute."

Monday, January 12, 2009

Deja Vu

So I find myself sitting in the waiting room again on the 7th floor of Baylor with Rebecca. I'll get to why in a sec. Its Monday around 5:30 and we've been here about 3 hours. The chairs are not super comfortable and its a little awkward sitting with other families staring at a tv program that maybe no one in the room wants to watch, but everyone is too polite to assert themselves. Except the Hispanic couple that was watching the Spanish language soap opera when we got in there. I have no idea what was going on, but they are very passionate and emotional. I hope everything turns out ok.
So we got a call this morning that they might try to operate based on the xrays they took. Thomas had an obstruction in his bowel that they wanted to address, and since they were in there, they would go ahead and clamp the PDA in his chest. The surgeon hadn't looked at anything, so we were kind of on a wait-and-see mode. At 2:15, they called and said they were ready, and when I mean ready, they wanted to know how quickly we could get to the hospital without breaking any laws. So I grabbed my sandwich that I had just made and we broke some laws (sorry).

When we got there, we met with the surgeon who gave us a very quick overview of what he saw on the x rays and he planned to do, and then just as we were able to inhale, the anesthesiologist gave us an overview of what he would do and how it would affect Thomas. It was very overwhelming and very much like the end of a drug commercial on tv. These are all of the really terrible things that could possibly happen, God forbid, if we do what we just described and please sign here giving us permission to take that chance.

None of the procedures they wanted to perform were a surprise, but when you hear a doctor describe just how risky it is and point to the end of a pen to describe the artery that he has to go after as being that small, and we'll need to collapse the lung to get to the artery that needs to be clamped, and of course he has no immune system to speak of, it really throws you.

Just to summarize, they were going in at 3 different points: The neck to get to the carotid artery to run a catheter into the heart (this will be the feeding tube for a while). The abdomen to remove the obstruction in the bowel. The chest under his arm to perform the PDA.

Everything turned out ok. The doctor felt we were fortunate to go in when we did. There were some perforations and underdevelopment in the lower part of the bowel, so he exposed the bowel temporarily to provide relief and time to heal to the lower part. The other 2 procedures went very well. He was confident that Thomas would get over this hurdle and be stronger for the next.




Now Thomas will have 3 scars, so that knife fight I had mentioned before was against 5 guys.

Separated at Birth

Sorry for not updating yesterday. We had some internet issues that sucked up most of my evening, but allowed me to spend quality time with people in other countries. I'll make this one long and wordy.


We visited Thomas yesterday with my parents before they had to head back home. Nana and Papa had a wonderful time visiting Thomas, and we had a wonderful time making them do things around the house.

They are still waiting on the surgery. He's having a little trouble with his digestive system, which is very typical for someone his size. They say that it takes a couple weeks to get on track, but they are watching him and may run some tests to make sure things are progressing. So maybe later this week on the surgery.

We saw him yawn yesterday and he very politely reached up and covered his mouth. Then, just to show off, he tied a perfect windsor knot.

Oh, the nurse also said that Thomas weighs 1 pound, 1 ounce. That's great, because typically babies lose weight, which Thomas did, but he appears to be gaining it back. This also breaks the tie with the rocks and feathers.


(Second Entry in the Thomas Elliot joke series follows)


Separated at birth...



Some may have noticed the resemblance between Thomas (on the left) and Benjamin Button (on the right). Judge for yourself, but if I extrapolate scientifically, I'm pretty sure this is irrefutable proof that Thomas will one day look like Brad Pitt.


You can't dispute science.

No truth to the rumor that Angelina approached us about adoption...

Saturday, January 10, 2009

The reality of dropping in unanounced/NICU observations

Another evening visit to the NICU. Thomas is doing very well. We saw the doctor and he's pleased with his progress. They are going to put off surgery for a few more days. He's not showing any significant symptoms right now, so they would prefer not to rush things if its not necessary.

We also got a dose of reality while visiting. Thomas is on a respirator and they are constantly dialing knobs to maintain his vitals. It is a constant battle that we don't see for the most part, but his O2 reading dropped while we were there and the nurse had to use a manual respirator (where you squeeze a bag). It lasted less than a minute and there was no panic by the nurse, but it was one of those things that kind of raised our eyebrows. We just happened to be there. Tina (the nurse) took it in stride and bounced back forth between Thomas and another baby who's O2 reading was all over the place as well. This sort of thing probably happens several times an hour in the NICU.

Random observations:

1. There probably isn't a minute in the NICU that an alarm isn't going off somewhere. No one seems particularly worried. The nurses usually turn a knob and things settle down.

2. The other babies are gargantuan monsters. Its really weird, they just look huge. None of them are full term. I think the one next to Thomas weighs only 3 pounds, but she looks mammoth. I think that's called perspective.

3. The nurses are OCD. They have these containers that dispense a cleansing foam, that looks like mousse. I watched a nurse wash her hands 5 times in less than a minute without touching anything.

Late night update

Its 12:25 and we just got back from visiting Thomas, no change, all is well. So I'm sitting here thinking that one day Thomas might read this and I'd like to give him a chuckle. I hope you will indulge me.

What weighs more? A pound of feathers, a pound of rocks or Thomas?

Please pull out your secret decoder ring to find out the answer.

Friday, January 9, 2009

Thomas update - Friday January 9th

Its easy to take things for granted and get swept up in good news. Its at this point that I find myself. I'm trying to temper my excitement and confidence about things, because I know its still a long fight, and there is still so much that can and will happen in the coming months. For the moment though, I will revel in what has been a pretty darn good week for Thomas.

The biggest thing, the one that I didn't really want to address on the blog, because we just didn't know what to expect was the neural scan which occurred today. With babies being born this young there is a high likelihood for hemmoraging in the brain, especially during birth. There are 4 stages of severity, with the 4th meaning likely mental issues. We had worried about this all week and I'm happy to say that they found no hemmoraging. He's by no means out of the woods and they will continue to test him, but this was a very big milestone.

Second, Thomas' days of fake baking are behind him. He's just savage enough that they have taken off the photo lamps. Which means he's progressing along.

Third, there does not appear to be an infection, but they are waiting a couple days to stabilize his platlets, so perhaps Sunday.

Fourth, Thomas' other grandparents (my mommy and daddy) are here, so he's getting lots of love and attention.

All in all, a good week. There is still alot of development and growth that needs to occur before we can let out the breath we're holding, but we're one week down and going strong.

VIDEOS!

We've finally taken advantage of our Christmas present from Rebecca's parents. We took our new video camera to the NICU this evening. I've added a video bar on the left which should display all of the videos as I upload them to youtube. (hopefully nothing I upload will keep him from running for office in the future) The initial videos include a tour of his little home, Rebecca changing his diaper, a close up of Thomas, Thomas trying on a new hat made by a friend and Thomas opening his eyes.

In one of these videos, you will also find a shocking statement that is neither endorsed or supported by this site. See if you can find it...

UPDATE: The Video widget on the left only shows 4 videos at a time. If you go to www.youtube.com and search for "dragonforce", you'll see a guy playing guitar REALLY fast, but if you search "melliot22" you will find all of the videos I have posted and you can see them larger than on the blog.
Mike

Wednesday, January 7, 2009

Mom Duties

Today Rebecca got to play mommy with Thomas. The nurse let her change his diaper (which was full), take his temperature (under his arm) and clean out his mouth with a swab. This is only the second time she's ever changed a diaper and she did pretty darn well. Sadly I didn't have my camera with me, but she should get some more opportunities to show her prowess.

Everyone(doctors, nurses, etc.) says Thomas is doing very well, he's very feisty, so much so that they have to sedate him at times so he doesn't use up all his energy kicking and swinging his arms. To sum things up, it was a good day.

Doh!

Well we were walking out the door for surgery and the doc called and said no go. Its another one of those things that could be really good, or just par for the course. The doctor was testing him and the results came back that suggests one of two things: he's either got an infection or his white blood cell count is up. The latter is a very good sign, because that means he's producing white blood cells on his own. The former is nothing serious, other than they would prefer not to operate while he has an infection. They've started antibiotics just in case and we'll try again in a couple days.

I'm sitting in the waiting room while mom and mom's mom (I believe she would like Thomas to call her MeAnn) are hanging with him. If anything else changes, I'll let you know.

Tuesday, January 6, 2009

Thomas update - Tuesday January 6th


Its been a fairly good couple of days, in some cases really good as far as Thomas goes. He's been under the photo lamps which helps his skin. He has to wear a mask to protect his eyes, but we found out that last night he opened his eyes for the first time! We were really excited to hear, but a tad dissappointed we didn't get to see it, but today, we not only got to see him open his eyes, but also get his diaper changed. The latter doesn't probably sound that great to you, but any event seems to be magnified in it's significance to a parent. I have added those photos to the slide show. They are all rated G.

The other news, which may initially sound bad, but really isn't is that Thomas will have surgery tomorrow. Basically there is a flap between the heart and the lungs that all babies have. This flap controls blood flow to the lungs and normally closes on its own. With babies Thomas' size, often the flap does not close and restricts the growth of the lungs and left untreated, the lungs can flood. So, tomorrow, they will go in through his rib cage under his left arm and put a clamp on the flap, lickety split. The whole thing takes about 20 minutes and they set up an OR right at his incubator. And he gets his first cool scar! Which in the future will be the result of a knife fight. Its a very common procedure, so other than the normal risks associated with operating on a 26 week old, 1 pound baby, it should hopefully go well and will aid in Thomas getting off the respirator and growing.

Finally, a few people have asked about when Thomas is coming home and if he can be visited in the hospital. More than likely, Thomas will be in the NICU for the rest of what would have been Rebecca's pregnancy. She was due in April, so that's what we expect. As far as visitation, the good news is that we can visit him 22 hours a day, 7 days a week. The bad news is, basically no one else can. Much to my surprise, there is no big window that you walk up to with a room full of bassinets and baby names like in the movies. Its a highly controlled environment, where we have to scrub up before entry. We're only allowed 6 additional viitors, my parents and Rebecca's parents have taken up 4 spots. So I've decided to place the other 2 spots on eBay and they will go to the highest bidder. Good luck and happy bidding!

Going Home



Today was Rebecca's last day in the hospital. We had very mixed emotions about leaving. Although we still live very close to the hospital, the comfort of knowing that we could hop on an elevator and see Thomas was really nice and outweighed being trapped in a room. Leaving the hospital without Thomas is not what we would really want, but we know he's in the best place possible. Now comes the tough part, trying to have a normal life and live it in two different places.


Once again, and I don't think I'll ever be able to do this enough times. Thank you to everyone who has supported us through this adventure, its not over, but the outpouring of support, prayer and well-wishes has been incredible. Some day, we will be telling Thomas how many people had a part in bringing him into this world and willing him to grow and fight. He may not fully understand and appreciate it, but we both do, and we truly cannot thank each one of you enough.
Mike and Rebecca








Sunday, January 4, 2009

Visit to the NICU




After a false start last night due to getting a little light-headed trying to do too much too soon, Rebecca and I went up to the NICU this evening and spent some time with Thomas and got to meet with Tina, Thomas' night-time primary nurse. Tina has been with the NICU for 27 years and taking care of children like Thomas is a life long passion. Tina explained what they are doing with Thomas, trying to keep his blood pressure up and moving forward.


Rebecca also got the opportunity to touch Thomas' hand. It was obviously emotional, but we left for the evening knowing that Thomas is being cared for by the best.

Photos

I've added a slideshow on the left of pics we've taken while Rebecca has been here. We tried to take pictures of everyone that came up, but sometimes we forgot, so if you visited and we missed you, please come back up and get your picture taken. You can click on the slide show and see the pictures larger.

Update Sunday afternoon

Rebecca is resting comfortably. She finally got to take a shower today and is feeling good. Her mom and dad came in Friday and along with her Uncle John (who lives in Dallas) have been a huge help to us. So much so, that I was able to (selfishly) slip out and kick the soccer ball around this morning.

Thomas has had 2 pretty decent days. It is going to be a day to day thing for a long time. We have been warned that there will be good days and bad days. Thomas is very small, but he's under very good care and we've heard many stories of babies with similar stories that have had very good outcomes.

Welcome to Thomas Elliot's Blog


Thomas Alexander Elliot was born January 2, 2009 at 1:48 pm. Thomas was born at exactly 26 weeks, weighed 1 pound and measured 10 inches. Thomas is currently in the care of the doctors and nurses of the NICU at Baylor Hospital in Dallas, TX.