Thursday, April 30, 2009

Oh Crap!

That's what I thought tonight when the nurse said that Thomas could come home as soon as a week. This probably isn't the case and we've gotten lots of different answers to that question, but as I was sitting there holding Thomas, I got more than a little overwhelmed at the prospect of becoming a full time dad. Not that I don't want Thomas at home, but the reality of the moment, the idea that a team of nurses and a wall of sensors would all of a sudden just disappear and Rebecca and I would be left to our own devices with only the internet to guide us...man, I'm not sure I'm ready. And despite 4 months of just hanging out, without a care in the world, I haven't managed to get my head above water to really mentally prepare for this possibility.
I keep telling myself (and Rebecca) that we'll figure it out and to look at all of the complete knot-heads (I sincerely apologize to any knot-head that may be reading this, I'm not referring to you specifically) that manage to raise kids, that we can surely pull this off. Its amazing to me that child-rearing, an occurrence that is so common, millions of examples of it, all over the world, right now as I type this, something that has obviously gone on for centuries, well before books and classes and Barney DVDs can be so daunting and completely mysterious. You'd think someone would have figured out a way to fully prepare people for this.

So I kind of yada yada'd all of you between the last post and today. I guess its only fair to catch you up on what's been going on since Sunday when I last left you. As you may or may not recall, they took Thomas off of the ventilator Sunday. Well yesterday, they decided to give bottle feeding a try. Thomas is now free and clear of all mouth and nose related tubes. They started out with Pedialite which I got a kick out of, because I've used it before for races (it does a great job of keeping you hydrated, but its like drinking syrup). He did really well with that, so today they tried milk and he did awesome. He's getting fed 8 times a day now and getting about 10 ccs of milk each time. He's doing exceptionally well, able to drink most of it. At first, he gets a little excited and fills his mouth up and forgets to swallow and ends up spitting some out, but once he calms down, he paces himself and does real well. Tonight he was hungry for more, so the nurse is going to see if they will increase the amount.

Other positive things, Thomas is off the anti-biotics and they've stopped testing his blood gas because he's breathing so well. He also weighs 5 pounds, 5 ounces. The end appears to be drawing near, but there are some things that we know have to happen. Thomas still has to have his hernia operation and we have 2 classes that we need to take (baby cpr and hospital discharge).
Things are moving quickly. I will try to keep you up to date. Big, big day though.

Sunday, April 26, 2009

So many titles...

videoI had several ideas for a theme for today's blog, so I will do 3 mini ones.

Blog #1: FREEDOM

Thomas made a huge step today, he got extubated and spent maybe an hour on nasal canula before going to absolutely nothing. He is free as can be and sitting pretty. Hopefully you can see the video above. Thomas is exceptionally happy about only having one tube in his mouth. The one tube that is left is a replogle tube. It sucks stuff out of Thomas' stomach, while he recovers from his surgery. They are not feeding Thomas yet. He's getting the basic nutrients and minerals intravenously. Hopefully this week, they will reintroduce formula and then hopefully milk.

Blog #2: Peeping Tom('s parents)

Rebecca and I learned the ugly truth about ourselves last night. We're NICU peepers. I think I've described how tight the quarters are in the NICU, and how its tough not to hear what's going on at the next bed. But last night, we both realized we had a problem. It was very late, we'd done all the staring that we could at Thomas, we needed to go home and get some rest. Ah, but there was activity afoot. They were preparing for a new admit and so there Rebecca and I both stood, stalling, waiting to see the new baby show up. A ring side seat. Unfortunately something happened and things got delayed, so we had to go home. No show.

Blog #3: Smells like cinnamon

Rebecca thinks Thomas smells like cinnamon. That was her revelation today. I couldn't confirm this and found it a little weird.

Saturday, April 25, 2009

Saturday

Thomas is cruising along. He is still on the breathing tube, but they've turned down the settings and decreased the amount of morphine. We're hoping that he might get extubated in the next day or two. He really seems unhappy with the tube, which I take to be a good sign. Nothing else new. His abdomen looks good. Solid scar that looks similar to an appendix scar.

I think I will also take this opportunity to give a little insight into Rebecca and her life. This is highly controversial and I will most likely let her read it first, but to some degree, this is a public service announcement. Plus, a number of people have asked both of us how the other is doing and how the marriage is holding up. I don't think I'd be going out on a limb to say that the first year of child birth is very difficult, and although our situation is unique, we may still be in for a lot worse once Thomas comes home. That being said, I really think we're both doing very well. all things considered. We lean on each other alot and we vent to each other alot, and occasionally we snap each other. For the most part though, we do pretty well. We try to make a point of finding time to get the other to relax and take their mind off things. This blog also helps immensely. I'm not the most outgoing person, so there's things that I probably wouldn't otherwise discuss without it. I highly recommend everyone get one.

So onto the many faces of Rebecca. I love her and I wouldn't change a thing about her (of course there are many things I would change, but I'll put those in a separate blog that Rebecca can't read). I'm also pretty certain any person going through what she is would have very similar attributes. I think Rebecca has handled all of this incredibly well. She is managing being a mom, running a house, holding down a job (she is back at work until Thomas comes home) and dealing with me and my various sports-related injuries. So with out further ado: We have the interrogator, the analyzer, the worrier and the doter.

The interrogator:
Probably my favorite character. Rebecca is very good at asking the right questions and finding out exactly what is going on. If not for her, this blog would be seriously devoid of facts. "Thomas is, um, good, and they're feeding him and stuff." Just doesn't really sell, does it? But the interrogator does not seek a single source for her information. Basically anyone in scrubs is a potential victim. It matters little what their specific area of expertise is, Rebecca will pepper them with every question that is on her mind, even if she's already asked 3 other people. So a respiratory specialist better be able to answer a question regarding feeding, a nurse had better be able to provide insight on the big picture for Thomas. This is very helpful. Many parents clearly don't ask enough questions up there and I think the nurses appreciate that Rebecca takes an interest. I also think I'm an abject failure in this department. On the few occasions that I have gone up by myself, the nurses will ask if I have any questions, and I don't, mostly because Rebecca has given me as good an update as they could.

The analyzer:
Rebecca spends all of her waking time thinking about Thomas (shocking). All of the information that she gathers is taken in and processed. Out spews multiple theories and possibilities that she shares with me. The one topic that gets a ton of play is who Thomas looks like. There's always a new theory about an appendage or an expression. I think Thomas looks like Thomas. I'm no fun.

The worrier:
The first two faces of Rebecca feed the worrier in Rebecca mercilessly. Again, given the situation, it would not be sane for her not to worry, but I try to fight it and placate her as much as I can so that it doesn't eat her up. She obviously is constantly worrying about Thomas' health, his weight, his settings. She also worries about her connection to Thomas. This is her biggest and most constant worry, that somehow, Thomas will not have a connection to her because Rebeeca can't spend every waking hour with him and can't be there to always hold them, that he won't recognize her as much as the nurses. I know this isn't true and I know Thomas will be following her around, right under her foot at every step in no time.

The doter:
This is when everything else melts away for Rebecca, the moment when she walks up to Thomas' bedside and he turns his head to her and opens his eyes at the sound of her voice. Its at this point, she usually knows in her heart that everything is going to be alright. Thomas is once again declared cutest baby ever and everything that we've gone through for 4 months and that day become worth it.

Its time to go to the hospital and find another unsuspecting victi...er...nurse and find out what's going on.

Wednesday, April 22, 2009

Revelry


Back in my favorite room, the waiting room...just...um...waiting. Its 7:45 now and we have the place to ourselves. For some reason, the temperature was set at 33 degrees in here. Miserably cold. But we'll pass this test too. Today is the big day for Thomas. He's getting put back together. We did a late night visit after I got back from Belton and got up at o-dark-thirty this morning. Thomas is looking really good.

We got to go in before his surgery and Rebecca held him. Since it was technically still the shift change hour, we were in there by ourselves and for the first time ever, no alarms were going off anywhere. All of the babies were content in the early morning hours, just sleeping away. With each surgery you get to meet the anaesthesiologist and sign their consent form and then the doctor, to also sign a consent form. More of a formality and an opportunity to ask questions than anything else. I doubt at that point they get many people not signing. Our doctor, Doctor Hermann, is the same doctor who did the original surgery. He's an excellent doctor and seems to be an even better person. Although it had been a couple months and multiple surgeries a day, he remembered Thomas and us. He has an amazing positive attitude and quizzed us on bible verses that he was reciting. Sadly, although we knew some of them, we failed miserably on book and verse.

Because Thomas is a big boy now, he got to go to the operating room. The operations before were performed right in the NICU. They loaded Thomas into the this plastic box, which I believe is a replica of the one Houdini used in his magic show to escape from. Rebecca asked a very earnest question at this point: "Can he breathe in there?" Fortunately someone had the foresight to address this and avoid what surely would have been one of the worst design flaws ever.

We settled into the aforementioned waiting room for an undetermined period of time. It took only a half hour before we got word that it was done. A little while later Dr. Hermann came up and let us know how pleased he was with the operation. He said that he wished that all his operations had gone that easy. He had to take a very small piece of the bowel out that had not developed, but overall it was a great success.

They moved Thomas back and we waited for him to get settled before we went back in. He was still partially paralyzed from the anesthesia, which was a little weird, but it wore off. He had a very glazed look and just kind of stared off into space. It will take a few days for him to get back to normal and then they'll hopefully extubate him and begin testing to see if he will feed.

As of this afternoon, he was showing signs of pain, so they upped his dosage of drugs and he's been sleeping ever since. Which is very good. I'll update tomorrow.

Pleased as Punch

Just a quick note. The doctor just came in. Doctor Hermann said he was "pleased as punch". I believe that's a medical term that suggests that everything went great with Thomas' surgery. I'm doing a longer blog shortly, but just wanted to let you know.

Monday, April 20, 2009

Full Circle



So much has happened.  First, Thomas was moved again this weekend, back to his original room and his original spot in the room.  Very weird going back there for us, knowing that we had started there almost 4 months ago.  Time has flown by and taken forever.  Thomas had little reaction as far as I could tell, but it was not lost on us.  

His infection that got us very riled up, appears to have gotten under control and we're a go for surgery Wednesday morning.  

Most important, yesterday morning, Thomas was taken off Si Pap and put on...nothing at all!  Totally awesome.  We really didn't expect that he would get off of ventilation completely, but he is and he's really happy.
He's breathing on his own and so far so good.  Now all we need to do is get him through surgery and eating normally (not through a tube).  He also got a bath today.  No compromising pictures, but he hated it. I've included some bonus pics of Thomas freed from all snorkels, hood or nostril plugs.



Saturday, April 18, 2009

March for Babies Recap

Just got back from the March of Babies Walk. First off, thank you to everyone who donated money for this cause (There's still time to donate http://www.marchforbabies.org/melliot22). As of today you all have raised over $2,600, which is incredible and much more than I expected or could have hoped for.

Today was really great. As a first year marcher and novice, I have many observations and insights that would have enriched my experience, all of which I will try to apply next year. The walk kicked off at 9, with "registration" starting at 8. There really isn't any registration. You could just show up and walk if you wanted, or raise money and not walk at all (which only crossed my mind once or twice). There are a bunch of tents set up, for each of the corporate teams and the unaffiliated families tent. Tip #1: Hook up with a corporation. They've got the best food and coordinated t shirts. The food provided at the families tent wasn't bad, but when you see Uncle Julio's grilling up fajita meat, you get a little jealous. Tip #2: Get cool t shirts made. Obviously if your with a corporate team, they have t shirts, but alot of the families made up t shirts as well. And though my fish tank t shirt is ironic and clever (Thank you Leigh!), I didn't feel like I was really representing as well as I could have been. Tip # 3: Get other people to walk with you. Its a fun event and that's what I'll be doing next year, asking all of you to join us when we walk. We'll get cool t shirts and maybe even our own tent.

I did have a small team: myself, Tra (my little brother who was also born premature), my dad and my dog Charlie. Just 4 guys looking to party! It was a 5 mile walk down one side of White Rock Lake, very pretty, weather was perfect, a little cool, over cast with light rain once in a while. They had some little kids sing the national anthem and then you start walking. There were supposedly 30, 000 people, I lost track and interest after about 6. Some people chose to run and make a competition out of it. You know the kind. I immediately wished I had been one of them. Not that the walk was bad, I'm just not a huge fan of walking. My dad and I are both joggers and Tra is 14, so we did end up jogging some here and there, just to entertain ourselves. All along the route they had little signs with pictures of preemies. I didn't know you could do this, or how to do this, so I'm questioning my qualifications for father of the year (I'll try to make it up with toys and candy, they like that stuff).

Each one was either in honor of a preemie who was doing well or in memory of one that wasn't able to overcome the challenges that faced them. It was a very powerful enforcer for anyone who might not want to keep walking. The one thing that stuck in my head, mostly from the pictures of the babies in memory of, was the hospital blankets. They are always the same, white with footprints on them. I hadn't really thought about them til I saw them in a couple of the pics along the route. They are usually a little rough from constant washing, and I think I'll be happy not to see that blanket anymore.
The rain held off til we finished, grabbed something to eat and got out of there. All in all, it was a really good day. I'm very happy I chose to do it. Tra was really excited to participate and Charlie is worn out.
Thanks again to everybody!

Friday, April 17, 2009

Hand Print Friday

All is well. Thomas is 4 pounds 10 and a half ounces. Hope to see you tonight, 6 to 8. Lots of room on the wall.

Thursday, April 16, 2009

Set Back Settling Down

Quick update. It was not nothing, but things seem clearer in the light of day. They took 3 cultures yesterday, one from the line, a peripheral and one other (I should probably have Rebecca writing or at least over my shoulder for these type of updates, she's much more medically savvy. I like it when the monkey crashes his symbols together in my head.). Only one has come back positive so far. So they've honed in on the right anti-biotic hopefully. A surgeon has not looked at the central line yet to determine whether to remove it or not. Thomas is doing well. He's still on Si Pap and it'll be up to him when he can get off of it, once he regains his strength. As of right now, surgery is still on for next Wednesday. I'll update you when I learn something new or they come up some other contraption for him that I can poke fun at.

Set Back

This evening, Thomas had to be put back on Si Pap and may have an infection. The central line in his chest started oozing this morning, so they took a culture and started anti-biotics. Although he seemed to be doing ok this afternoon, he started laboring this evening and they made the decision to put him back on Si Pap. We will get preliminary results in the morning from the cultures and hopefully get him on the right anti-biotic. We don't know what we're dealing with yet, so I don't really know the impact on his surgery next week.

I've tried to maintain a stance that until we know there is something to worry about, don't waste your energy worrying about it. We really don't know what we're facing, it could be nothing, but the location of the infection really bothers us. Rebecca and I have really been struggling the last week or so, a little shorter with everyone around us, even each other. We're both tired, mentally and physically, as I'm sure all new parents being. We're not unique, but we're still tired.

This was not what either of us wanted to hear and really hit Rebecca hard. She's experiencing what every mom probably has to go through at some point. Seeing your child suffer without being able to do anything about it. She has been amazingly calm and patient throughout all of this, but her strength is depleted and her faith is a little shaken. As the narrator here, I can focus on Rebecca as an interested observer, but its not significantly different for me.

This may all turn out to be nothing, and if so, I'm kind of wasting something I'd been holding on to for a while. I'm doing this specifically for Rebecca, so bare with me. A long time friend of Rebecca's wrote a note to her about Thomas not long after he was born. Whether you are religious or not, I think it has meaning, about having a positive outlook and believing that things will work out. I must apologize for cribbing someone else's writing, but hopefully she'll forgive me. I know that Rebecca will read this and her faith will be restored. (Love you)


"Rebecca, this may seem a little strange at first, in terms of the angle, but it has a point (and you know my brain was always a little “wacky” J). I couldn’t talk to you about it over the phone, because I would get too emotional. But when I learned of Thomas’ name, I was immediately inspired by the power in its meaning relative to the faith we share by way of Christian orientation, it’s the “language” we share, and I think it’s no accident you were inspired to give such a name to your little angel who does not himself embody this metaphor, in the way Biblical Thomas did, but instead conversely, and amazingly, through the power of his soul and spirit - projects in human example the purest essence and translation of God, its perseverance, its certainty of existence, and in turn, “reflects” to us in the mirror that is his eyes the very crux of the lesson inherent in the name “Doubting Thomas” --- challenging us toward faith and hope, the will to believe, even amidst uncertainty and adversity.

This article is titled “Learning Faith Through Doubting Thomas” --- I have highlighted my favorite parts that inspire me relative to the circumstance and example of your Thomas. It speaks to me about the lessons your Thomas is teaching us…your Thomas does not represent the doubt, as the Biblical Thomas did --- your Thomas is challenging doubt in favor of faith --- just like the real doubting Thomas, who in this case could be any of “us”, was able to turn his life ultimately to reflect by its example the confirmation of and certainty of God, in converting his own doubt through faith. Whatever propensity by nature our “human-ness” has for doubt or fear or worry when faced with circumstances like these…we can all be like Thomas and ultimately cling instead to faith and hope! One day there will be another article, “Learning Faith through Thomas” – it is the sequel being defined right now by your Thomas J

“Thomas is a late bloomer, I guess. A commercial fisherman, he grew up around the Sea of Galilee. Jesus came to Capernaum, calls him, and he follows. For three years Thomas follows.

Thomas's Pessimism and Courage

But Thomas is a pessimist. Some people rejoice to see a glass half full, but Thomas sees it half empty. Oh, he's full courage, but also possesses a streak of fatalism. Once, when Jesus and his disciples hear about their friend Lazarus's death near Jerusalem, the center of Jesus' opposition, Thomas comments darkly, "Yes, let's go there that we might die with him." His words are almost prophetic.

Soon, his world falls apart. Thomas sees his Master arrested in the Garden of Gethsemane and he flees for his life. On Good Friday he watches at a distance as they spike his Friend to a cross on the Roman killing grounds of Golgotha. As Jesus' life drains away, so does Thomas's hope.

Shock and Disbelief

On Saturday he is in shock. On Sunday he is so disillusioned that he doesn't gather with his fellow disciples for an evening meal. Thomas is dazed, hurt, bitter -- and lashing out. Monday morning, the disciples go looking for Thomas and tell him what has happened in his absence.

"Thomas, we were in that upper room where we'd been meeting. We lock the doors for protection. Yet, all of a sudden, Jesus appears. 'Peace, Shalom,' he says. Then he shows us his hands. There are jagged holes where the nails had been. He pulls back his tunic and shows us where the spear penetrated his chest. But he isn't weak or sick or dying. He is alive, raised from the dead!"

Afraid to Believe

"I don't believe it," barks Thomas. "I don't believe a word of it. You're seeing what you want to see. Jesus is dead. I saw him die, and part of me died with him. But he's dead, and the sooner you accept that fact, the better off you'll be. Give it up!"

Peter pleads with him. "Thomas, I saw him myself, I tell you, and he was as real as you are!"
Thomas is cold, with an edge in his voice that cuts like ice. "Unless I see the nail marks in his hands and put my hand into his side, I will not believe it."

But Thomas's anger cools, and by the next Sunday evening he is eating with his fellow disciples in the same locked room. Suddenly, Jesus stands among them once again and speaks -- "Shalom, peace be with you."

All the blood drains from Thomas' face. Jesus turns to him and speaks plainly, without any hint of rancor or sarcasm, "Put your finger here, see my hands." Jesus holds out his scarred hands for him to examine. Thomas recoils. Not out of fear, really, but from a mixture of amazement and revulsion.

Jesus begins to open his outer garment and says, "Reach out your hand and put it into my side. Stop doubting and believe."

My Lord and My God

Thomas is weeping now and then begins to sob out loud. Jesus reaches out and puts a hand on his shoulder. Then Thomas slips to his knees and says in awe, "My Lord and my God!"

Thomas, "Doubting Thomas," as he is sometimes called, is the first disciple to put into words the truth that Jesus is both Lord and God. "Doubting Thomas" utters the greatest confession of faith recorded anywhere in the Bible.

Jesus replies, "Because you have seen me, you have believed. Blessed are those who have not seen and yet have believed."

Preacher in the East

What happens to him? Doubting Thomas does not stay a doubter. When he sees the risen Jesus, all that Jesus has taught over the years now clicks in, and to his death Thomas is an outspoken advocate for his Lord.

Church tradition tells us that he preaches in ancient Babylon, near the Tigris and Euphrates Rivers, where Iraq is today. He travels to Persia, present-day Iran, and continues to win disciples to the Christian faith.

Then he sails south to Malabar on the west coast of India in 52 AD. He preaches, establishes churches, and wins to Christ high caste Brahmins, as well as others. When the Portuguese land in India in the early 1600s, they find a group of Christians there -- the Mar Thoma Church established through Thomas' preaching a millennium and a half before.

Finally, Thomas travels to the east coast of India, preaching relentlessly. He is killed near Mylapore about 72 AD, near present-day Madras. Tradition tells us that he is thrown into a pit, then pierced through with a spear thrown by a Brahmin.

He who had so fervently proclaimed his unbelief carried the Christian message of love and forgiveness to the ends of the earth in his generation.

The Doubter Speaks Today

Thomas would speak to doubters today, to those of us who have seen our hopes and dreams destroyed. Doubting Thomas would tell his story of how Jesus' life had intercepted his own. He would tell us of his fears and his doubts. And then, with a radiant, joyful face, St. Thomas, Apostle to India, would recount his joy at seeing and knowing the risen Jesus himself. "My Lord and my God!" he would say. "My Lord and my God!"

~***~

And here is another reference I found, that I thought was especially beautiful given that this person writes from the perspective of a parent:

“Before I had children, I wondered how Jesus could put up with some of the questions His disciples asked. Why didn't they get it? Now I know. I understand what it means to love unconditionally and where that patience comes from.

So I come again the the question of "Doubting" Thomas. Thomas who was ready to die for his Lord, and yet who fled in fright; Thomas who said, "God, I don't understand"; Thomas who didn't want to believe without proof. Is the title Doubting Thomas an apt one?

I see so much of myself in Thomas. I can not begin to count the number of times I've asked God to prove Himself to me because, like the father in Mark, I cry out "I believe, help my unbelief!" Is that so different from Thomas, in this very emotional time, saying he must see for himself that His Lord and Saviour has done what He said He would?

And I have proclaimed that I would follow Jesus wherever He would lead me, only to later turn aside when the going got rough, then to sheepishly return when the shepherd called my name.
And it seems that daily I am asking God to explain something that later appears to be so simple any child should have been able to grasp it, and listening and learning as He patiently does.

Doubting Thomas? You decide.

Doubting the teaching and example of your Thomas? – Not for a millisecond. J I love you! sb
"

Tuesday, April 14, 2009

The Best Laid Plans of Mice and Men

Well we're on hold for surgery til next week, Wednesday at 7am to be precise. Scheduling issues with the Surgeon. Fortunately and unfortunately, he's very good and in very high demand. So Thomas gets to chill for a week, pack on the pounds (or ounces I suppose) and count ceiling tiles. Sadly, Thomas can only count to one (maybe), so he keeps having to start over. Fortunately, at this age, he really doesn't have a well developed memory, so he seems really content counting the same tile over and over again.

Close examination of this picture may lead one to believe that Thomas has either a) been wrestling a bobcat, b) started shaving already and hasn't quite got the hang of it or c) scratched himself with his fingernails. Sadly its never one of the interesting options. Thomas is very fond of putting his hands to his face and grabbing hold. He's managed to nick himself several times, but this one is the most impressive.

Much like the rest of Thomas, his nails are growing out of control. And although I see this as an excellent opportunity to go for his first Guinness Book World Record, apparently the "safe" and "prudent" thing to do is not let his finger nails grow and grow until they curl around and Thomas has to be hand fed (which is not any different than now). Of course no one listens to my suggestions. Last night, Thomas got his first (sadly not last) manicure. They filed down his nails to protect him from himself. Mitten orders have been temporarily cancelled.

Finally, totally off the subject, but I will relate it somehow anyway. I like to look for stuff that makes me feel good. Its easy to get down, as I've kind of indicated from time to time here. And even though this is really corny, its got a feel good message, I think. I liked it. I saw this on ABC News tonight, so probably everybody already knows about it. Its from some show called Britain's got Talent. I guess (or do I watch it religiously, and I'm playing dumb) its their version of American Idol. http://www.youtube.com/watch?v=9lp0IWv8QZY.

We're hoping for perfection in Thomas, and although we've already impartially declared him cutest baby in the world, every person can't be cute or smart or a talented athlete, but everyone has something to offer, if they're given the chance. I guess, if Thomas reads this at some point, I'd want him to be willing to give people the benefit of the doubt and be confident to take a chance himself. OK, there I go again, getting deep and dumb. Much too late. Must go to bed and rebuild my care free, off the cuff attitude. Say good night Gracie.

Monday, April 13, 2009

Thomas' Nursery

I think we're nearing the end of this part of the journey. Rumor has it that Thomas will have surgery this week and then it'll be a few weeks (maybe more) til we gain full responsibility of the little tyke (hmm, may want to think that one through). Anyway, a while back we were trying to decide how to decorate his nursery. This is extremely important, because he won't remember it...well its important to Rebecca and her mom and my mom and probably every other girl that walks into our house. That's alot of pressure for sure.

We bounced around several ideas, wild animals, trucks, Tigger, etc. but we decided that something else would be significantly more meaningful to us and Thomas in the future. We have been overwhelmed by the interest, prayers and well-wishes that we have received. I can honestly say that each of you has helped us get through this and feel stronger for it. Because we feel like each of you has had a hand in getting Thomas to this point, we wanted to make that virtual hand more tangible. So, we came up with the idea of having anyone who wants to, dip their hand in paint and place their hand on the wall in Thomas' nursery. That way, he'll be able to see every day, the people that have been watching over him.

For those in town or that will be visiting, we're going to have at least 2 happy hours. The first one will be this Friday from 6 to 8. Very casual. Come by for a drink and some snacks and dip your hand. We'll even show you a picture of Thomas, in case you haven't seen one. Children are also welcome to dip as well. If you can stop by for even a few minutes, that would be great. We'll let you know when the next one is. You can also come by at any other time. Just let us know.

For those of you who are not in the immediate Dallas area (weird), please take a piece of paper and trace your hand and sign the piece of paper. We will take that outline and signature and paint it on the wall. If you think you may be in Dallas at some point, but not sure when, go ahead and do the outline and you can replace it later with your actual hand print.

Our address is

6715 Inverness Lane
Dallas, TX 75214

If you have any questions, you can email at melliot22@yahoo.com
We look forward to you helping us decorate Thomas' room.
Mike and Rebecca.

Sunday, April 12, 2009

HAPPY EASTER

I hope everyone has had a good weekend and found all of the hidden Easter eggs (so that you don't find them in several months). Thomas has reached the very important milestone of 2000 grams (just below 4 pounds, 7 ounces), which is what we needed for his big surgery, putting him back together. We think its going to happen some time this week. From there, its theoretically a few weeks or so before he would come home. Very crazy.

Thomas has continued to struggle with a stuffy nose and they've tried a few different things. The nasal canula has been irritating him, so last night they went back to the oxy hood and he seems much happier. Its been a tough round and round. His nose needs to heal, but when it gets stuffed, he struggles to breathe. Suctioning out his nose lets him breathe easier, but irritates the nostrils and then sets him back on healing.

The other unique thing is that Friday was Thomas' original due date. Its been very surreal for Rebecca, knowing that she should be pregnant. I think she feels a missed connection. I have a tough time relating, because for all of the challenges and emotional ups and downs, I look at it that we are lucky to have had Thomas 3 months early and secondly, I can't imagine being pregnant. In general, the benefits just do not outweigh the downsides for me. We probably would not be sharing this blog if the roles were reversed. I like to ride my bike too much (selfish that way).

The other thing I'd like to share today is a bit of a public service announcement. The reason Rebecca had to have Thomas early was that she had an enzyme deficiency in her blood. Based on our conversations with some of the doctors, this is very common, like half of the world's population may have it. All enzymes are not created equal, the one Rebecca is missing controls the production of folic acid which helps with blood clotting. She now takes folic acid and Thomas will too, as he is missing the enzyme. There's not proof yet, but it appears that many miscarriages and premature births have in common a missing enzyme in the mother. So, I don't know if you can request it, but if so, getting tested could be a good thing.

Thursday, April 9, 2009

A Day in the Life

I thought today's entry should be used to describe the typical steps that take place each time we visit the NICU, so that you can get a sense of it.

We usually go later in the evening, 9:00 or later. We do this for several reasons. 1. We're kind of night owls. 2. There are fewer people around in what can be a very crowded and small space during the day, so its Q...(you're not supposed to say quiet in the NICU, its bad luck). 3. At night you can park for free.

The Drive:

First, let me say that we love being with Thomas, but we hate going to visit Thomas. The drive is such an incredible beating, and its ONLY 10 freaking minutes. But doing it day after day for 3 months has grown very tiresome. Especially since we're spending more and more of our time there. We love it when we're there, but getting out of the house to go is tough. Our dog does not like it either.

Status Update and Small Talk:

Showing up late at night, you have to get buzzed in to the hospital, although its not a rigorous entry, just press a button and tell them where you're going. The NICU is on the top floor and access is strictly controlled. You have to sign in, show an id and get issued a pink sticker on your chest. All cell phones off. From there, you enter the wing where your child is. Then its time to scrub up, up to your elbow for 30 seconds.

Each time we enter, we approach Thomas and are typically greeted by the nurse that is watching him. Each nurse works a 12 hour shift, 3 days in a row, and on that shift they are charged with 2 preemies (on rare occasions, 3). Most of the time, both are in the same room, but because there are 5 beds, there's always a nurse that has to work 2 rooms. All of the nurses watch out for and back up the primary nurse, and, if your baby is especially cute (not referring to Thomas, just generalizing) all of the nurses make it their business to learn about him or her.

We then exchange introductions or pleasantries (we've met pretty much everyone, so new nurses are infrequent) and then Rebecca starts the inquisition. How is he, what does he weigh, how often and how much are they feeding him, is there anything scheduled? And so on.

Standing in front of the monkey cage:

This is where we stare at Thomas, tell each other how cute he is and wait for him to do something cool. If he's awake, he usually just stares back at us. The camera comes out and the snapshots start going, fast and furious. We'll foam up, maybe touch his hand or his head and kind of just stand there and talk to him. The nurses are all really good at creating little cocoons, swaddling Thomas and tucking him in. They do such a good job, that we're both always hesitant to disturb him and mess up the work they've done. Eventually though, we break the seal and its time to hold him.

The Big Chair:

They have these big, comfy chairs on wheels that they roll around to each bedside that have a foot rest and can recline. You have to get them right up to the bed, because of the myriad of wires and tubes that Thomas is hooked up to. Now that he's on the nasal canula, its a little easier, but its still takes some maneuvering. Once one of us and Thomas get comfy, it goes one of two ways, he's wide awake or he passes out. If he's wide awake, he's fidgety and can be a challenge to hold on to. Thomas doesn't cry, but he'll push and squirm and arch his back. If he falls asleep, it gets tough for us to stay awake too, especially if it's going on 11 or 12. One thing will throw the whole thing off though...

The Enemy:

Thomas' vitals are constantly tracked, his body temperature, which is pretty easy to maintain, his heart rate (should be in the 140s), his Respiratory Rate (between 30 and 50 breaths per minute I think?) and his Sat Level (the oxygen saturation in his blood, which they would like to be between 82 and 92%). Each one of these measures can set off an alarm if they go to low or too high, and can do so, just by a baby moving positions, so they are constantly going off in the NICU. Alot of times the baby works himself out, and things go back to normal.

Unfortunately, the monitor is right there, the numbers are easy to read and there is not a lot to do if you're not holding Thomas, or even if you are. So we constantly stare at the numbers and the lines. Its unavoidable, our eyes are drawn to it. Inevitably the Sat level is the first thing to drop and you sit there watching it, willing it to go up. The numbers are all loosely tied. If he desats for a long time, his heart rate can drop and then he Bradies. If he's having trouble breathing, as Thomas is with his nose right now, he'll take alot of shallow breaths and then then the Sat level will dip. Its a constant that we can do nothing about, other than stare at it like its a horrible reality show that you can't divert your eyes from.

End of the Visit Guilt:

After killing 2 or 3 hours, with the prospect of getting up in the morning, trying to fit everything into a smaller window the next day so that we can come back again, there is this beautiful, innocent child just laying there and it all makes it worth it and makes it very tough to walk away. You feel like you're not doing enough, that maybe you're not around enough, you'll miss something or Thomas won't connect with you. It makes it very hard to walk out and go home.

Then we do it all over the next day.

Thomas is up to 4 pounds, 4 ounces. I will update you tomorrow on the specifics of what is going on.

Sunday, April 5, 2009

The hood

So, based on the last blog entry, I'm certain that there are a few question marks out there. Why is Thomas looking like a Scientology experiment? How will NBC replace E.R.in its fall line up? Stuff like that.

To understand Thomas' current, um, appearance, we have to go back to Saturday morning. That's when Thomas decided that the precautionary approach that the doctor's had prescribed just wasn't cutting it. Thomas took matters into his own hands, literally. At some point Saturday morning, Thomas extubated himself, grabbed his breathing tube and just pulled it out. Didn't wait for a doctor, a nurse or any other sort of assistance. Apparently he was ready to breathe on his own. So he kind of forced every one's hand. They didn't want to reintubate, but his nostrils aren't quite healed. So, they went with the Oxy Hood (as seen on late night t.v.). The Oxy Hood provides an oxygen rich environment, but for the most part, Thomas is breathing on his own. Apparently, this is a somewhat out-dated method. One of the nurses saying she hadn't seen one in quite a while.

It works really well for Thomas, giving him some time to heal and relax, then they will go back to Nasal Canula. They are also easing him back up on his feeds, so we're hopeful he'll start gaining weight again soon.

In the mean time, Thomas has really started to come alive. He's awake alot more and just looking around non-stop. The intubation has made him a pony (he's a little hoarse. Get it? Cause hoarse and horse rhyme...and a little horse...never mind), so the few times he does cry are kind of quiet. He's just really darn cute. I'll be uploading some new videos shortly on youtube to show you.

Little Men from Outer Space

From UFOHunters.com.blog.tx.org.us.fake.edu/proofpositive.

As you know, we here at UFO Hunters have been forced to infiltrate other web sites to document the truth. The government has been chasing us, shutting us down, suppressing information vital to the search for life beyond our little planet. We've taken over this blog to bring you the most shocking, historically significant find in the history of mankind (This time we really mean it. I want to again apologize for the picture of the frizbee and wires. It looked real, my mistake).

As you know, Correspondent X has been hot on the trail of alien life forms being held in secret locations by the the military. Well he's delivered indisputable proof that alien life exists and that at least one is being held in a secret facility in Las Crusces, New Mexico. This one is going to blow the doors off.

These photographs of the life form were smuggled out at great peril to our correspondent. I'm fairly certain that by reading this, you have been marked by the government and you too may be silenced.

As you can see, the alien does not appear to breathe our air and has to be kept in a special chamber, presumably being fed methane or some other gas poison to us. I can only assume that his body is secured in that specially reinforced wrap to keep it from attacking the handlers. The size of his eyes clearly indicates the ability to probe and probably control our minds. Truly a dangerous creature.

The significance of this finding cannot be understated. From the pictures, we know that the aliens are vicious killers, extremely intelligent and significantly smaller than us. Our only hope is that by spreading the word,we can prepare ourselves before its too late.



Yet the government, in the face of all this evidence refuses to acknowledge the facts. Through a third party, we presented these pictures to the head of Strategic Defense Organization, General Patterson. In typical governement stone walling he stated: "The pictures you have here are clearly of a weather balloon, nothing more, nothing less. I have no further comment."

We can only hope there aren't any more out there like this one...

Friday, April 3, 2009

A plea for Help

Let me make this short and then I’ll get into more of an explanation.

If you care for Thomas, please click on this link http://www.marchforbabies.org/melliot22 and donate $5 or $10 to the March for Babies.

If you care for children in general and have 6 hours a month, sign up to be a big brother or big sister. http://www.bbbs.org/site/c.diJKKYPLJvH/b.1539751/k.BDB6/Home.htm

OK that was a little melodramatic, but here are two very good causes that I want to promote. Why am I hitting you up for these seemingly unrelated, but equally deserving charities? Well, the first one is probably self explanatory. Thomas is a preemie and I’ll be walking in support of the March Of Dimes March for Babies, which raises money for preemies and their families. So if you could spare anything, we would be very grateful.

I’m not going to be walking alone. A 14 year old boy named DeVontra has volunteered to walk with me. Devontra is my little brother. I joined the Big Brothers/Big Sisters program while sitting in the hospital with Rebecca waiting on Thomas. This may seem spur of the moment and possibly irrational, given everything that was about to happen and the limited time that I have, but its something I’ve been wanting to do for years. Just never got around to it. Thomas inspired me to finally send the application in and I was matched with DeVontra. He’s a good kid that I think just needs somebody to show interest and be there once in a while. The ironic thing is, DeVontra was a Preemie and also born at 26 weeks. Totally random. There are so many others out there that I've met that just want a friend and a mentor and are just amazing, cool, happy kids. There are a lot more kids who want a big than there are volunteers. Its not a big commitment and it really makes a big difference.

DeVontra and I will be walking 5 miles on the morning of April 18th. So again, if you can throw $5 our way, its going for a good cause, to help children like Thomas and like DeVontra.
I want to apologize in advance as I will probably send this out in an email and also mention it again in subsequent blogs. I'm also sorry to use this blog in this manner, but I wanted to get the word out. If you have any questions, let me know.

Thank you in advance,
Mike

Thursday, April 2, 2009

Evening Update

Long day. Bad news just makes you grouchy. Found myself being shorter, more emotional and argumentative most of the day. Not malicious or anything, but I could tell I wasn't letting go of things that normally my laid back persona dictates I let slide. Rebecca also struggled with her emotions all day as well. Its very easy to get frustrated and despair. They tell you its a roller coaster. There's a reason why roller coaster rides last only 60 seconds in amusement parks. Too much of anything wears on you and I think we're kind of ready to move on to the lazy river for a while.

On top of that, Thomas' demand for attention ruined my April Fool's Day blog entry yesterday. Harder to acknowledge humor when the rest of the day doesn't go according to plan.

Thomas is doing well, all things considered. He's pretty wiped out, but they've gotten his setting dialed in on the ventilator to get a good CO2 mix and they've actually been able to crank them down some. Thomas is letting the ventilator do most of the work, but he's taking some breaths here and there, which is a good sign. The nurse said that he was also awake this afternoon and starting to be his old self. He also gained one more ounce. up to 4 lbs, 1 oz.

They are running some tests on him to make sure he doesn't have an infection, which may have contributed to the swelling. They went ahead and started anti-biotics as a preventive measure. The doctor says if all goes well, Thomas would be back to Si pap in a few days.

Morning Update

Unfortunately Rebecca got he dreaded unsolicited call this morning from the NICU. One of the doctors called to let us know that they had run an x ray on Thomas and found that his lungs had collapsed. They have re-intubated him and moved him back to a nursery on the North side. He is in an open bed with a heater.

The doctor said that this is not uncommon with preemies with chronic lung disease. The good news is that the lungs are very resilient and he will most likely make a full recovery without any long term effects. We are still hoping that he will have his surgery next week and the doctor doesn't believe this will set that back. They would have had to re-intubate him for that surgery anyway. So if you want to look for a silver lining, that step is out of the way and perhaps he will b able to be weened off the ventilator sooner after the surgery.

There's no telling for sure, since we didn't have a date set for him coming home, but this may set him back a little. We're both disappointed of course. Rebecca had really started to gear towards bringing Thomas home and this hit her kind of hard. You keep saying there will be ups and downs and we've really had it easy, but the downs still pretty much suck. I'm headed back to Dallas today and Rebecca is going to go back up there shortly. I'll let you know what's going on.

Wednesday, April 1, 2009

Two Steps Forward

And one step back...

I mentioned the other day that Thomas was having some trouble breathing, causing the Bradying. Well it hasn't got alot better, and really a little worse. He's got swelling in his nostrils, which is restricting his breathing. So he's Bradying and he's working really hard, which is tiring him out and using up calories. They decided today to put him on Si Pap. The Si Pap forces air into his lungs, which will help him breathe better and easier, until his nostrils heal and he gets stronger and bigger. I can't imagine he's really happy about it, but one day I'll be able to tell him it was for the best and sometimes adults just know better. I'm sure he'll just accept that explanation, no qestions asked.

On the bright side, Thomas is 4 pounds! So we're moving along. We're getting anxious. I think there is a light at the end of the tunnel, but we're not entirely sure when. Once he gets to around 4 and a half pounds, they will go in and fix the ostemy and hopefully the hernia. From there, they've got to reintroduce milk and hope he takes it, as well as getting him breathing on his own, maintaining his body temperature. Best guess is 3 to 5 weeks after the surgery, but it all depends on each baby.

So that's where we are today. Ups and downs, but we're still very blessed and lucky to be where we are.

WOW

Big news, on the eve of Thomas' 3 month birthday, the nurse called us to let us know that Thomas said mama. Not sure how this happened or if this even makes sense. Since neither one of us was there, we don't have any documentation, but the nurse swears she heard it very clearly. Just really amazing. I hope this wasn't just a mistake or an anomaly. We'll be rolling video from now on, just in case.

Just crazy!