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.

So many titles...

I 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

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.

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.

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.

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!

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.

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"