Tuesday, June 30, 2009

June 30 update

Week 3 and we're starting to get a little rhythm and alot tired. We're now entering an interesting time in the blog where I have to discuss and share our parenting approach, which I'm sure will open us up to scrutiny and judgement by parents, but at the same time will hopefully provide a guide for those of you who may wish to some day give up sleep, personal freedom and spontaneity. So here's a couple tips we've learned that have helped us.

Tip #1: Night feedings and sleep. This has been a tough one. Thomas needs to eat constantly, but I also need my beauty sleep. So I came up with a simple solution that kills a couple birds with one stone. What I do is put Thomas in the crib and then put a bucket of KFC chicken in the crib with him. This way, when Thomas gets hungry in the night, he can follow the delicious smell of 11 herbs and spices to food and we can sleep through the night. Whatever is left over becomes breakfast for us. Now, right now, because Thomas has no teeth and his hands are small, I usually find him just sucking on a drumstick, but last night he did manage to pull out a breast and use it as a pillow. I call that progress.

Tip #2: Bath time. Thomas isn't crazy about baths. Its cold and traumatic, plus Rebecca always seems to want to do it when there's something on t.v. Again, I came up with a multi-tasking stroke of genius. I smothered Thomas with jelly and then set him down in front of our dog, Charlie. Charlie cleans Thomas, Charlie gets fed, problem solved. If you employ this tactic, be sure to cover your child head to toe, that way you can see if your dog misses a spot.

As we go along, I'll share more parenting tips. Next week, incorporating your child into your work out as a free weight.

This week is multiple doctor visit week. Monday, we took Thomas to see a plastic surgeon to look at his hemangioma on his bottom. The doctor was at Children's Hospital. We'd never been there before, but it was really nice. Lots of warm colors, soft lines, natural light, very un-hospital. It it weren't for all of the kids running around, it would have been great.

We arrived at the scheduled time of 10 am, only to be informed that the doctor was running an hour and a half behind. Rebecca immediately went into calculating mode and realized that we didn't have food to cover an extended visit (and I didn't see a KFC anywhere). The receptionist assured us that we would be out of there by noon. That seemed very odd, given that best case we wouldn't get into an examining room til 11:30. Sure enough, in a blink of an eye (after an hour or so in the waiting room) we were whisked into a room, the doctor swooped in, made a diagnosis based on information we could have given him over the phone or in an email and we were spit out the other end. It was alot like going on a ride at an amusement park. You stand in line for ever for 30 seconds. Doesn't seem worth it.

Oh well, the long and the short of it is that they are going to laser the hemangioma, starting Thursday, which will be doctor visit #3 for the week. #2 will be tomorrow, just the normal check up. The doctor thinks it will take 3 to 4 treatments. Hopefully this will not be too painful for him.

Thomas really seems to enjoy the visits to the outside world. He is always in such a good mood at the doctor's office, no fussiness, just wide eyed and laid back, taking it all in. Once we get home though, he's thrown off for at least a day. He doesn't eat as well or sleep normally and is generally unhappy. The only thing I can figure is that after all of the new sites and interesting new people, he finds Rebecca and me to be a big let down.

Finally, Rebecca took Thomas on his first stroller ride outside today. He's not fond of the bright lights and kept his eyes closed most of the time, but seemed to enjoy himself.

Tuesday, June 23, 2009

Quite a cliff hanger

My sincerest apologies for the delay in an update. Who knew parenting was time consuming? I mean really, how about a little insight?

I've been meaning to update and have stuff to share, time just slips away. My mom reminded me how I had left the last blog entry at the doctor's office without any resolution and that's a little unfair. Thomas is exhibiting the ability to climb walls, shoot a web-like substance from his wrists and has a sixth sense, kind of like a spider. The doctor says that's all pretty normal.

I will sum that one up by saying the appointment was short and sweet. The doctor was pleased with how well the first weekend went. So let me fill you in on the 7 days that have followed.

We're into our second week of self sufficiency, learning the nuances of non-verbal communication, between us and Thomas and each other. Its very important I think to pick up cues that anyone of the 3 of us has reached a melting point. With Rebecca and me, its easier to identify than with Thomas and I think we are doing pretty darned good. We're supporting each other pretty well and doing our best to share all of the responsibilities. Basically, Rebecca takes care of Thomas and I go out drinking with the boys after my shift is over at the factory. Thomas is extremely good natured and doesn't get to fussy that much. When he does, there really are 4 main culprits: hunger, gas, a dirty diaper or most importantly a lost pacifier. He hates that last one and will really let you know quick. Rebecca and I, with the timely help of her mom and my mom, have managed to get a decent system down that allows us to trade off feedings and get semi-short, if not completely restful sleep.

Oh, I guess the vitals are important. Thomas weighs 7 pounds, 2 ounces and is taking about 2 to 3 ounces every 3 to 4 hours. He's doing really well. The ulcer is about the same, we'll be going to a plastic surgeon to see what can be done.

The feedings pretty much rule our lives at the moment. I don't even think about night and day, or normal milestones of the day. Its all about those 3 hour windows and what might happen. Will he sleep, does he want to interact, or will he be fussy? The fussy times are obviously the most challenging. Its tough to get anything done and you just feel awful for him, especially if you can't figure out what's wrong. This too will pass.

Father's Day was great, you know, because I got stuff and who doesn't like another day for gifts. It was obviously a little more meaningful than that. I actually spent Father's day watching soccer and recovering from a race that Rebecca and Thomas allowed me to do in Little Rock, Arkansas the day before. I had planned to do this race, an off road tri, a few months ago thinking that Thomas would have been home long before and things would be somewhat settled. Little did we know that Thomas would show up race week. Training was a little haphazard leading up to the race anyway, between travel and hospital visits, and a week of late hour feedings wasn't optimum either. The toughest thing was skipping out for 2 days and leaving Rebecca and Thomas. Fortunately, Rebecca's mom was there to help. The race was very hot and difficult. It sounds a little corny, but if I started to run out of energy, I would just picture Rebecca holding Thomas and both of them looking at me. It gave me a boost and I was able to keep going, although I will admit on the last leg, the run, it got a little tough to get the image clear in my head (it was really hot).

So we're cruising along. I will do a better job of updating going forward.

Tuesday, June 16, 2009

First Field Trip

Today is Thomas' first check up with the pediatrician. We're sitting in the waiting room for our 2:00 appointment. Its now 2:40, but I'm sure we'll be getting in at any moment. Its been a bit of a reunion, as 2 of Thomas' roommates from the NICU, Jonathan and Victor, have also shown up for their first appointment. They were scheduled for 2:15 and 2:30 (so apparently these appointments will only take 15 minutes...). They had both been discharged as well last week. We all made the rookie mistake of going into the wrong waiting room. The pediatric office has a "sick" waiting room and a "well" waiting room so that babies that aren't sick don't get exposed to the ones that are. The waiting rooms aren't labeled, so I guess you're just supposed to know. Since we're all well, and there were no sick babies, and the well waiting room was packed, they let us stay. Unfortunately, a sick patient showed up, so we all just had to move to the well waiting room. The waiting room appears to have been designed with only preemies in mind. It fits probably 2 to 3 families, semi-comfortably. We have 5 families in here, consisting of 8 adults and 7 children. I'm sitting on the linoleum. Its cold and I can't stretch my legs out. It reminds of going through Fraternity pledging, only not as much fun. Rebecca just went to the bathroom to change Thomas and its bigger than the waiting room. I may move into there. (she also realized she forgot diapers in the diaper bag and we had to bum one off of another mom. Highly embarrassing. I mean, its a diaper bag! Hello! We will review her preparation skills when we get home, but rest assured, she's never going to be in charge of packing for a camping trip.)

Prior to being kicked out of the sick side, we were in there with fraternal twins who I think were a couple years old. The nurse came to get them and you would have thought the boy had seen a ghost or was being led to his impending doom. He clearly recognized the nurse and had no interest in what she had to offer, despite her promise of not having a needle.

Its now 3:00.

When we left the house, we pulled out of the alley and up to the stop light. The car behind us was not paying attention, going fast and nearly ran up on me. Before I knew it, Rebecca was out of the car and letting what I suspect was a startled young girl that we had a new born in the car. I believe I will go invest in a Baby on Board sign right away so that Rebecca doesn't have to personally deliver the message anymore.

Catch up on the last few days. Rebecca's mom came in on Sunday, which has been a much needed relief. We've worked her into the rotation, so we're getting some sleep, but not as much as we liked. Thomas has continued to do well. He hates a dirty diaper, which is about the only time he gets fussy. The only drawback of Rebecca's mom being here is it puts my little game to the test. As kind of a joke, I intentionally avoided using the names of her parents when speaking to them. I've managed to keep it up for a few years now, although I had to break my streak with her dad during the initial crisis with Rebecca's pregnancy (hardly fair, but rules are rules). So with all of the help and support she's giving us and the interaction, its difficult to continue the streak, but I'm still going, just like Cal Ripken. Anyway, thank you so much for everything unnamed mother of my wife.

Its 3:15 and we're in! I'll update how it went later.

Sunday, June 14, 2009

Tag Team

We're trying to get a rhythm going. We were doing a great job of taking turns on the 3 hour feedings, which gave each of us about 5 hours to rest, until Thomas decided he would stay up from 2 am to around 6. Threw things off, but he and I hung out and watched part of the movie the Love Guru with Mike Myers. It may have been that it was 4 in the morning and I was only half watching and half entertaining Thomas, but I think critics may have gotten this one wrong. Not that bad...

He's doing really great on his feedings, sucking down most bottles in 20 minutes or less. So as far as that goes, he's great. His ulcer is the only thing we're really worried about. It appears to be getting a little worse and bleeds occasionally. Thomas seems mostly unaffected by it. Thomas' pediatrician wants a plastic surgeon to look at it, so we'll see.

There's one thing that I'm already having difficulty with. Its the home confinement. The sleep patterns and late night feedings are no big deal. I'm an outdoors guy and extended periods indoors while there are things to be done outside, like soccer and riding bikes and volleyball drives me crazy. Even mowing the lawn looks good. I'm looking forward to when Thomas can go outside and chase after me. Many advetures await..along with some scrapes and bruises, but I'm sure Thomas will take care of me.

Saturday, June 13, 2009

Saturday morning

First night was relatively smooth. We all managed to do our feedings and get in little naps. I only woke up once in a panic to make sure Thomas' silence was peaceful slumber. Its a little tough to trust that everything will be ok, to take that leap of faith that without all the wires and sensors all will be ok.

Rebecca took the 1:00 and I took the 4:00. luck of the draw favored me greatly, in that Thomas took his bottle in less than 20 minutes without any breaks. I was already for a feeding battle and was kind of left standing there, not knowing what to do. Wide awake and Thomas hadn't given me a challenge. So we both went right back to sleep. At 7, Rebecca's turn, Thomas was a little feistier and has not gone to sleep since, so Thomas, Charlie and I are hanging in the living room while mommy gets some much needed sleep.

I think the "room in" wiped us both out. Not much sleep and uncomfortable furniture left us beaten and sore. I think in a day or so, we'll be good to go.

Friday, June 12, 2009

Home Sweet Home

Well I think we are settled in, or at least we're all learning to adjust to each other. Always awkward when a new roommate moves in. Everyone is establishing their boundaries and rules. Charlie has shown only mild interest in the new arrival.

We've had 3 successful feedings (2 for Thomas, 1 for us) and we're gearing up for the first night without a safety net. I will catch everyone up tomorrow, but we're all happy to be home and Thomas is reasonably excited about his new surroundings.

Good night

Live Blog #13 5:00pm Friday

We have cleared all of our stuff out of the room and rolled back into the NICU for Thomas' car seat test. Basically they put him in the car seat and I stand behind and make car noises to see how we will react. Actually, its just to make sure he can breathe and such while strapped into the seat.

We've gone through all of the discharge information, signed the forms and taken down all off the pictures and signs. Its really starting to hit home that this place and the staff that have been a significant part of our lives for 5 months are about to not be. So there's a lot of happy/sad going on. Several nurses that have taken care of Thomas have come by one last time. There are many others that we may not get to say goodbye and thank you to, but we can't possibly thank everyone enough for what they did for Thomas and for us. We weren't the patients, but they truly took care of us and helped us through a very trying experience. Thank you to each and every one of you.

Unless something interesting happens, the next blog you will probably get is from our house.

Live Blog #12 1:00pm Friday

Freedom? Or should I just look at it as house arrest. We've made the determination that all 3 of us are going home today. The doctor made the very astute observation that after 5 months and 10 days, one more day at the hospital isn't going to make a bit of difference. I can also safely say that after 5 months and 10 days, we're not ready. We just rattled off 5 or 6 things that we still need to get done. But what's done is done.

We're going to feed Thomas one more time here ( he totally went comatose and slept his way through the last one) and then we'll begin the discharge process, which includes the car seat test. More updates to come.

Live Blog #11 10:06am Friday

Boy, things just happen fast around here. While I was typing the last entry, the doctor came in and did his assessment. He was pleased with how things went last night and would like to talk about the possibility of us leaving...today...with Thomas...basically, its our comfort level. I'll let you know.

Live Blog #10 9:40am Friday

Single dad.

Thomas and I have been alone for almost an hour now. Forging ahead against the elements, living off the land. we've fashioned a shelter out of trays from the cafeteria and we've set a trap in hopes of capturing a wild pig or some chicken mcnuggets. Its indeed scary. I hope we can make it until Rebecca gets back in an hour.

Live Blog #9 8:15am Friday

I'm the worst parent ever. Slept right through the 7:30 feeding. I did sort of acknowledge things occasionally, but for the most part I was out. I guess the old saying is true. a man isn't a man without his 3 hours of sleep.

To give you an idea of the size of the room, the chair folds out into small bed, about half the size of a twin. When its open, it blocks either the sink, the bathroom or the front door. We took the lesser of the evils and blocked the sink, which means every time we needed to use the sink, we have to climb over the bed. Its a comical scene. Its our little efficiency.

Live Blog #8 5:10am Friday

Thomas took another bottle with minimal discussion. He's a big fan of playing possum, where he'll instantly fall asleep and close his mouth. Ironically, the easiest way to wake him back up is to lay him back down in the crib. So technically I'm off duty til around 10. If I can help it, I'll sleep through the next feeding. As Thomas and Rebecca are a distant 3 feet from me, that should be no problem at all.

Live Blog #7 4:10am Friday

Well this one sucks. First really interrupted sleep. So much for taking turns. Super mom got up and supervised all of my prep. Bottles are warming. I'm going to wake and feed him now.

Live Blog #6 1:20am Friday

Alarm went off at 1. I was dosing off, Thomas and Rebecca were both asleep. Thomas appears to be the one least excited about being up. Rebecca is taking the first watch. She's gotta give Thomas vitamins on top of his feeding, it looks a lot like wheat grass and smells almost as good. Normally they put it down his feding tube. We're just supposed to mix it with a little milk. It looks awful. I suspect he will not like it very much.

I'm going to wait here and see how this goes...

Yeah, he hates that. We're switching to the normal feed. Happier, but tired.

Live Blog #5 12:40am Friday

Just escaped our little prison to check on the dog and rabbit, and it was heaven. Lingered a little while on the couch. So nice to be away from here and its only been 8 hours. 40 more to go...

Fairly tired now, but fortunately they have provided furniture that is equally small, lumpy and hard. There will be little sleep between feedings.

Thursday, June 11, 2009

Live Blog #4 10:00pm Thursday

Second feed done! It was my turn this time and I was awesome. Thomas was weighed before the feeding and weighs 6 pounds, 10 ounces.

Live Blog #3 8:45pm Thursday

OK, we just had our feeding. I made it down to the cafeteria and squeezed in right as they were closing. Choices were slim so I chose the always solid combination of salmon and rice pilaf and chicken strips and fries. We split both. Rebecca was also treated to her first dinner interrupted. As we were about to enjoy our bounty, Thomas got very fussy and Rebecca had to settle for a combination of one handed eating and being fed by me.

Thomas has fallen asleep and we're sitting back waiting for the next feeding.

Live Blog #2 7:00pm Thursday

So, Tuesday the determination was made that because Thomas wasn't feeding very well, that we needed to switch things up by rooming in for 48 hours to see if Thomas would respond to us and a little change of scenery. so for the last 2 days they have only been feeding him through the tube. Today, they removed that tube and now its just us, Thomas and the bottle. Rooming in is a normal part of the process for moving out of the NICU. Typically its only 24 hours, but we get twice the fun (yeah!).

We decided we needed to get this done as soon as possible, so I raced back to Dallas from Belton today and we prepped for lock down. It really felt like I was heading for prison stint, so in preparation, I went to the bar for my last drink, ate fried chicken (my favorite food), visited the beach to feel the ocean spray, visited the mountains to touch the sky and visited 6 Flags to ride some rides. Actually, I only had time to pack and install the baby seat base in Rebecca's car. I'm not sure I maximized my last hours of freedom.

So we packed enough to stay for many days, because you never know what you're going to want to wear at a hospital, made our way up here and moved into our closet. If any of you visited Rebecca when she was on bed rest, its similar, but about half the size, kind of like a suite in New York City. It has a single bed and a chair and a view of another part of the hospital. So we're snug, but it will be ok.

From there, we went back over to learn how to make Thomas' bottles. Its a process of measuring out milk and formula and thickener in specific amounts. It was a little confusing, but they gave us a cheat sheet. We went ahead and mixed enough for the next 4 feedings, just seemed better than trying to do that at 3 in the morning.

We rolled Thomas' crib back to our room and checked into our room. They put a bracelet on Thomas that will set off an alarm if he leaves the floor. At the front desk, we had a mini reunion with 3 of the nurses that took care of Rebecca 5 months ago when she was on bed rest. They all got to meet Thomas and he was happy to be the center of attention.

We are settling in and Thomas has successfully taken his first feed. We're going to unpack and I'm going to get us some food from the cafeteria. More to come.

Live Blog #1 6:15pm Thursday

A lot of catch up is in order, which I will do throughout the next 48 hours. To summarize though. I am sitting in an adjustable bed in a fairly small room on the 7th floor of the Baylor hospital. In this room with me is my lovely wife, our first child Thomas, a crib, 2 suitcases, a cooler and a fair amount of apprehension. We are going to be in this room for the next 2 days seeing how it is to be parents, feeding him every 3 hours and basically seeing what this whole family thing is about. If this goes ok, they may send Thomas home. Over the next 48 hours, I will try to live blog this experience as best I can. So get your popcorn ready, pull up a chair and get ready for riveting literature full of intrigue, plot twists and a surprise ending you'll never see coming.

Rebecca is attempting the very first feed. I will update shortly and catch you up on the events leading up to now.

Tuesday, June 9, 2009

Are we there yet?

Tuesday night and we're at a little cross road. After a weekend where it really seemed Thomas was getting the hang of things, bottle-wise, we've kind of regressed a little yesterday and today. Thomas went in for an MRI Monday afternoon, which was planned, just to check on things. Because of the nature of the MRI machine, and the nature of a baby (especially Thomas Wild Arms Elliot), they had to sedate him to do the MRI.

There may be no connection at all, but since then Thomas has shown signs of being stressed and has really resisted taking the bottle. Since we're trying to move forward and out the door, our doctor met with Rebecca today and wants us to room in for 48 hours. What that means is that we will play house, sort of, at the hospital. The doctor hopes that 2 days of quiet and consistency will get Thomas on the right track. If it doesn't, then we may have to look at the G tube so that Thomas can come home. So we've got to figure out exactly when we can shut down everything for a couple days. It'll be just like going away to a spa for the weekend, only there's no spa, no room service, no pool and I have a suspicion that one of us will be sleeping in a chair. Oh, and there will be a 5 month preemie in the room that will need to feed every 3 hours. I'm looking forward to being totally refreshed.

Its a little frustrating. I thought things were going pretty good, and they may still. Could be that Thomas just needs to be around his parents. That's my hope.

They also got back the results from the MRI. His eyes look great. They did find an old tiny bleed in his cerebellum, but the doctor is not concerned about it. Thomas has been developing very well and shows no signs of any issues. They also noticed that his pituitary gland is a little small, which could potentially affect his growth. We will be referred to a specialist once we leave the NICU to monitor things. All in all, he's in fantastic shape over all.

So that sums up an event-filled day. Let me at least add a ray of sunshine to today's entry. Here's a great video of Thomas from last week. http://www.youtube.com/watch?v=WQMPF-_aJp4

Monday, June 8, 2009

The Diaper Don

From Reuters: Dateline June 8, 2009

Dallas, TX

The FBI has confirmed that they are investigating allegations of an organized crime syndicate headed by the notorious Thomas "Baby Face" Elliot. FBI spokesperson Robin Banks stated that an on-going investigation was begun 5 months ago. "We have been tracking Baby Face's movements for some time now. We're hopeful that by coming forward with our investigation that honest citizens will come forward and cooperate." Ms. Banks admitted that witnesses have been unwilling to come forward. "We don't know if they are afraid of repercussions or they're just too young and haven't learned how to speak yet. Either way, no one's talking."

Baby Face Elliot is accused of running a myriad of questionable and potentially illegal operations within the confines of the Baylor NICU. Charges include illegal betting, black market contraband and blackmail. One former preemie, who spoke to us on condition of anonymity, gave us a look into the inner workings of the "CUE". "Look, this is nothing new, when I was there, Bob 'Binky' Buttons ran a numbers game based on when babies get released from the NICU. You could bet on anything, how much weight a baby would gain, the time it took for a nurse to respond if you started crying, stuff like that. Eventually Binky's number was called and there was someone there to fill his spot. They can try to take down Baby Face, but someone else will be there to pick up the slack. We all participated in it. There was nothing else to do, you just lay there all day. I would have gone nuts if I didn't have the betting to keep me busy. And if you need a pacifier or an extra blanket, they'd get it for you...for a price."

That price can be heavy. Many speculate that beyond the inability to form words, let alone sentences, babies aren't spilling the beans because each is a victim of blackmail through the use of compromising photographs. Pictures in goofy outfits forced on them by clueless parents or babies caught drooling in their sleep are kept for years to maintain a code of silence.

Local investigators say they've heard rumor of illicit activities going on up there, but have been unable to infiltrate the tight knit community. Officer Pepe Roni, who is familiar with the case stated "We tried to put an under cover cop in there, but they ratted him out on the first day. I knew it wasn't going to work. I mean really, no amount of make up is going to make a grown man look like a preemie. It was pretty stupid."

Other attempts have been made to catch Baby Face red-handed. Police raided the NICU and found over 60 diapers, 5 pacifiers and 14 blankets under Elliot's crib. His attorney Sue Yu has stated that everything found was for personal use and that her client has done nothing wrong. "Thomas Elliot is an upstanding member of society and just wishes to be left alone to be read to and held."

Baby Face, seen here leaving a Chicago Hotel, has been very reclusive, has spoken in public on only 3 occasions, each more confusing than the other:

Upon arriving at the Baylor NICU, Elliot told his nurse, "You can get further with a kind word and a bottle of formula than you can with just a kind word."

At a birthday for another preemie in April, Baby Face was overheard saying, "People are gonna drink! You know that, I know that, we all know that, and all I do is act on that. And all this talk of nursing - what is nursing? On a boat, it's bootlegging. On Lake Shore Drive, it's hospitality. I'm a businessman!"

Finally, just last week, reporters caught up with him as he was moved from one NICU unit to another for undisclosed reasons (rumor has it that the hospital administration was trying to limit Baby Face's power by separating him from his organization, but this could not be confirmed). Thomas went on record with this strange ramble: "I'm gonna tell you something. Somebody messes with me, I'm gonna mess with with him. Somebody steals from me, I'm gonna say you stole. Not talk to him for spitting on the sidewalk. Understand? Now, I have done nothing to harm these people but they are angered with me, so what do they do, doctor up some income tax, for which they have no case. To speak to me like me, no, to harass a peaceful man. I pray to god if I ever had a grievance I'd have a little more self respect. One more thing, you have an all out prize fight, you wait until the fight is over, one guy is left standing. And that's how you know who won. By the way, I don't know how to stand yet."

To try and take down this operation, the FBI has brought in a legend familiar with organized crime and what it takes to take down a high profile figure like Baby Face. Eliot Ness was introduced at a press conference and pledged to take down Baby Face. Asked what his plan was, Ness was quoted as saying "Not really sure, I'm not real good with kids, but I need this bad, I haven't had a successful case since 1931."

Sunday, June 7, 2009

Saturday, June 6, 2009

Friday Feeding Frenzy

Friday night and its been a decent day feeding-wise. Thomas did real well for Rebecca this afternoon and she's feeding him again right now. We're crossing our fingers. There is talk of one or both of us rooming in to feed him at night, maybe early in the week. As I understand it, we'd stay at the hospital so that we could feed him in the middle of the night. Sounds like a really exciting night. I'll bring an xbox, and movies and a 6 pack of A&W and oreos, and...oh yeah, its probably really more about Thomas.

Thomas is still having an issue with the hemangioma on his bum. As I mentioned it developed an ulcer and it bled a little tonight. I imagine its not comfortable, but he doesn't complain alot. He really has a great disposition. To help heal the wound, they have to let it breathe. So at least 30 minutes, 3 times a day he gets to lay on his tummy with his bum in the air and no diaper. Its a freedom not many get to enjoy. To this point, we've chosen not to take pictures of an event he would surely rue.

Thomas has a fairly consistent roommate, who I will call Jonathan. Totally made up name, I have no idea who he is, might have made up that there is even a baby in the next crib (I had to issue that statement for HIPAA). Anyway Jonathan and Thomas are about the same speed in development, have had alot of similar operations, etc. They are also apparently big talkers and love attention. One will get fussy and then the other one and vice versa. There were twin girls in the room, so they might have been showing off, but their near constant demands for attention drove away the twins. I'm not sure if that can be counted as being shot down, but they definitely didn't impress. A tough and valuable lesson was learned.

Tuesday, June 2, 2009

Happy Birthday Thomas!

Well its been 5 months. I never had any real expectation the morning of January 2nd and I certainly was not thinking about June 2nd back then. We've been through a lot of things that I just never could have imagined. It has brought us closer together to each other, to our families, to our friends and allowed us to meet many others who have become our friends.

Is very much a big picture/little picture thing now.

Big picture, Thomas is healthy and without any major issues (he had another neural scan yesterday and everything was normal). Based on percentages, Thomas probably shouldn't be this healthy and could easily have slipped away from us. We are lucky and blessed and wowed by Thomas every day.

Little picture, going to the hospital every day for 5 months has been tough. Leaving Thomas every day for 5 months has been much tougher. This last week has been especially hard for Rebecca. She can sense the end of this part of the story and really wants to move on to the next chapter. Me, I'm a boy, I come from a military family, I travel a bunch for my work. Being away from loved ones is ingrained in me. Tough as nails, I am. I'm also pretty good at just dealing with the moment and not getting too worked up about what I can't control (laid back laziness, its a way of life). Don't get me wrong, I am in complete agreement with Rebecca that Thomas is the cutest baby ever. I can't wait to see him each time and know its going to be awesome when he's home. Rebecca wants to be there for Thomas all of the time and 3 hours a day just isn't cutting it. I think that's a mommy thing.

Its all about doing the right thing for Thomas. Letting him develop and establish the ability to feed without it being traumatic is very important (big picture). Patience is a virtue and all that stuff and I know that if it takes 3 days or 3 weeks from now to get Thomas home, in a year, it will be little more than a memory and a small part of a much larger story. I think I've written something like this several times, but I need to keep doing it to remind me, and Rebecca, that this is and will be such a tiny part of Thomas' life.

So where is he, and what's taking so long? Its a good question. (acceptable answers would be Baylor Hospital, just laying around, sucking on a pacifier or Disney World, the happiest place on earth) Basically, when Thomas is in the zone, he can drink a bottle with the best of them. When he's sleepy, he struggles, and sometimes even when he's not sleepy (which is when it can be frustrating). Sometimes he'll get too excited and forget to breathe or try to breathe while he's taking the bottle. Sometimes he'll arch his back and push away. He may be uncomfortable or something (from acid reflux or trauma from the ventilation tube), we're just not sure. So, each feeding is a hold your breath and hope for the best kind of thing. I think really, he's been more successful than not, he just needs a little more time to get the hang of it. He's really only been at it for a couple weeks.

The other thing that we're working on is motor skill development. On that front, Thomas seems to be excelling. Today, they worked on placing Thomas on his stomach and letting him work on pushing himself up. He did fantastic. He's really good at holding his head up and supporting himself. He's exceptionally strong. Especially his legs. Sometimes when you're holding him in a sitting position, he will push up and extend his legs out, basically supporting his own weight (with some help, he's not actually standing on his own). His balance is a long ways off of course, but its really cool. He kind of gets surprised at himself and how much more he can see when he's standing.

Well this blog was long winded and mostly without purpose. Its hard to describe where we are. I think for the most part, we're both very positive and in good spirits. We just really want Thomas to come home as quickly and safely as possible. So, in summary, Happy Birthday Thomas!