Saturday, December 26, 2009
Thursday, November 26, 2009
Tuesday, September 22, 2009
Rebecca has been fortunate enough to spend the summer with Thomas. It has been very important for her and for Thomas, as Rebecca has really struggled with the pregnancy ending early and being separated from Thomas while he was in the NICU. She worries alot about her connection with Thomas, but I see it every time she holds him, how he knows who he's with. There's a wonderful calmness that comes over him when she's walking him around on her shoulder and he's looking back chewing on her shirt. Its a tough thing as I'm not in a position to really understand. Rebecca feels like she missed something, and although we've been given an amazing gift, and even what I like to call bonus time with Thomas, its not the same and can be a little overwhelming. Rebecca often finds herself reliving the NICU and the surgeries and all of the doctor visits, therapy sessions. Its alot to deal with. I don't know if its a gift or not, but I just accept what it all is and where we are and try to move on. Look forward, not back and all that stuff. For me, I can easily get overwhelmed by the present and future, so maybe I have selectively blocked out the past. It already feels like ages ago. Its all really a blur.
We both knew that Rebecca would have to go back to work, unfortunately Thomas being on Rebecca's insurance. The original plan and thought was that Rebecca would want to go back to work under normal circumstances. She didn't originally picture herself as a stay-at-home mom. Now that it isn't quite the same situation, it has left her torn to say the least. She was supposed to start 2 weeks ago, but due to the original false starts on the nanny front that I will get into in a future post, she pushed back to last week, so that we could find the right nanny, which I am glad to say we have. Because of Thomas' immune system, day care is not an option. We had this grand plan to have Rebecca spend a few weeks with the nanny, break her in and get a comfort level all the way around. With the compressed schedule, Rebecca got 1 day and then I planned to stay in town and play Mr. Mom while the nanny got adjusted.
My part was easy. As Rebecca's apprentice, I knew the gist of the routine, although I am a poor substitute for the master and my mistakes are easily identified in our nightly reviews of my performance. Additionally, my job has taken me away every week, so I was always used to being away from Thomas. Not so much for Rebecca. Her breaks have been few and far between. So the night before her first day back to work was fairly rough. She didn't sleep much, cried a lot and worried greatly about Thomas. I think it was a little easier knowing that I was home, and as I said before, we've found a nanny that has connected well with Thomas and approaches Rebecca's exacting standards. It has been challenging for Rebecca actually getting to do her job. For some reason none of the people in her office want to talk about eye products... Rebecca is slowly adjusting and she maximizes her time with Thomas in the morning and at night.
I found last week fairly interesting and difficult in a different way. Monday was just Thomas and me, so it was all potato chips and 80s teen movies for us all day. Kathy (I guess its fair to refer to her by her name rather than a nebulous title) started Tuesday, and as I said, she's great with Thomas. He really responds to her well, she's doing the exercises that the therapists want and Thomas has made amazing strides in one week. So we're very pleases. I was working from home, so I was really there just to guide and answer questions. What was really difficult was letting Kathy handle things when Thomas got upset or needed attention. It was very difficult to suppress my instinct to take care of my son, to allow Kathy to do her job. It was so difficult in fact, that I had to, at times, find things to do away from the house. It was just unimaginably harder not to scoop Thomas up and hold him than I could imagine. I'm not sure I'll ever get used to that, but we'll see.
So what does any of this have to do with the title of this blog entry? Nothing really, I had wanted to write about the stuff above, so I just squeezed it in. So, yes, it does look like Thomas will be getting another scar. I know I'd mentioned Thomas' hemangioma on his bottom, which is healing extremely well and we don't anticipate any more laser treatments. I think I had also mentioned that Thomas had a dimple at the base of his spine. We noticed it while treating the hemangioma and brought it to the attention of the doctor. It kind of looks like the skin on his bottom was fused together a little. The doctor said that a dimple such as that could also be an indication of a tethered spinal cord. So we scheduled Thomas for an MRI, which we took him to get a week ago last Saturday. That in itself had its own little trauma, because they had to put Thomas under, which makes Rebecca very nervous. You can tell a baby as much you'd like that they can't move for an hour, but they rarely listen. So another trip to Children's hospital at o'dark a.m. Thomas did very well, came out of the MRI hungry and a little cranky and then chose not to sleep for the rest of the day.
We had hoped to get the MRI results some time last week, but no luck. We knew however that we would get them yesterday when I took Thomas to the pediatrician for his check up and immunization shots. Thomas had to get shots in both legs, which he was none too pleased about, but handled very well. He only cried for a second on each one. They were also very pleased with his growth. He's 23 inches and 12 pounds, 11.5 ounces. We've even gotten the ok to start introducing rice cereal to his diet. The doctor also came back with the MRI results at the end of our visit and let me know that Thomas does have a tethered spinal cord. Basically (and this is EXTREMELY basic, because I don't totally understand it, A spinal cord should be free at the base, but sometimes, especially in Preemies, it becomes attached to something. This can cause many issues if left untreated, including muscle weakness in the legs and orthopedic issues. Because it is the spinal cord we're dealing with, a neurosurgeon must perform the operation. We haven't met with one yet, so we don't know what exactly is involved in the surgery, what the risks are or when its going to happen.
I'd like to say that by now we're both used to this stuff, but the truth is we're not. The pediatrician said that she has seen this condition alot, so hopefully the procedure is routine. It is very distracting though. You would never know it by looking at Thomas what all he has been through. He is so lively, happy and laid back. He loves playing and laughing and he's learning to sit up. I'll post some pics and videos when I can.
Wednesday, September 9, 2009
Thursday, September 3, 2009
Since we're all settling back in to this blog thing, I have multiple subjects that I would like to address that we can all look forward to. So we'll break out the topic wheel and spin away. Here are the titles, as revealed by Alex Trabek:
- Doctor my eyes
- Nap time for Thomas
- Potent Potables
- How many grades will Thomas be skipping
- A Day in the Life
- Thomas' First Word
- States that begin with the letter A
Wednesday, September 2, 2009
One thing I never want to hear when I'm out of town is Rebecca crying on the other end of the phone. Unfortunately, it happens sometimes. Each time I must establish that nothing is wrong with Thomas (a constant, unreasonable fear that I assume everyone probably has). If this was a movie I was directing, I'd insert a flashback scene to fill in the gaps and bring us up to speed on how we got here. In a blog, trying to properly quantify what Rebecca is feeling and why without writing an essay may be difficult, so I'll just try to hit the highlights.
Rebecca has to go back to work soon and we have begun the process of trying to identify someone to entrust with Thomas, without our supervision, a near impossible concept for Rebecca. We've tested the waters and the results have been mixed at best. I won't get into details at this time, maybe when time passes. The long and the short of it is that sometimes the porridge is too hot and sometimes it just tastes like dirt. So we're looking and hoping to find a Rebecca clone.
As the day closes in that Rebecca has to return to work, she has really struggled with everything we have gone through. It has gotten a little overwhelming to her just thinking about the journey, even through we appear to be through the worst of it. On top of that, the feeling that she wants and needs to be with Thomas is really pulling on her.
Everything is new and different. Our lives have settled into somewhat of a routine, although its nothing like either of us expected, or at times want. Responsibility has never been something I've aspired to and you'd be shocked at how much responsibility there is when it comes to a baby! I mean, its like constant. I can safely say that Thomas is the cutest darn thing in the world and much like playing golf where 18 holes of suffering are all washed away by an approach shot that lands on the green where you wanted it to go, even if you have know idea how you put it there, a single facial expression, giggle or movement from Thomas makes everything that happened up til then a distant memory. I mean really, how do you deny this child anything?
Before I go any further, I've posted a bunch of videos on youtube for your enjoyment. http://www.youtube.com/results?uploaded=m&search_query=melliot22&search_type=videos. Look for the most recent ones.
Thomas is 8 months old today, he weighs 11 pounds, 9 ounces and is about 22 inches long. Overall the doctors are all very pleased with his progress. He's on track for a 4 1/2 month baby, which is where they want him to be. He's laughing and making lots of noises, very ticklish and starting to really grow a personality.
Since I've last talked to you, we've been to an eye doctor, the retina foundation, the plastic surgeon, the pediatrician twice and a physical therapist. We've also begun ECI sessions in our house, where a therapist comes for an hour 3 times a month to work with Thomas to make sure he's develops his motor skills. Since its very late. I'm going to post this and I will come back shortly to tell you the stories of each of our doctor visits. There are some unique stories to be told. There are some medical things to addressed as well. I will cover them shortly.
Sorry this one wasn't terribly exciting or informative. Just needed to start somewhere.
Thursday, July 23, 2009
Its Thursday night, about 3 weeks since I last wrote and I'm sitting in my living room, watching some soccer, relaxing. My faithful dog, Charlie, is at my feet. Its quiet, too quiet. It seems like forever since I've done this. Haven't felt like there was something looming, an impending event that I must be at the ready for. No need to keep my wits about me or decide what to do based on a schedule that has been laid out that limits you to an hour or two. So how is it that I'm without worry or care and able to be blogging?
My lovely bride (inside joke) and cutest son in the world are in Shreveport being pampered by an untold number of immediate and distant family members. They've been there since Tuesday, forced to flee Dallas because I was going to be out of town, and frankly Thomas is too much to handle for one person for more than 8 hours at a time. Not that Thomas is in anyway a problem child, or either of us incapable of handling parenthood (the jury is still out, but I'm confident we'll get a favorable ruling), but because Thomas is not ready to face the world and all of the associated germs, he is mostly home bound and therefore so is one of us. Being trapped in the house for extended periods of time, especially multiple days, is just too tough from a sanity standpoint. Fortunately, Rebecca's mom and my mom have been able to swoop in during the week to help out, but this week, that wasn't an option, so Rebecca loaded up every imaginable baby rearing object and Thomas made his first road trip. From all accounts, its been a roaring success. Thomas is a social butterfly and absolutely thrives on attention and lots of people around him. Rebecca thrives on not having complete responsibility for a little while. Its been win-win.
So, having gotten back into town tonight, I find myself alone. It is bliss, I must be honest. The last 6 weeks have been a trial. Limited sleep and even more limited freedom have tested Rebecca and me. I have discovered that I'm a much more selfish person than I thought. Giving up the things that make me happy has made me less happy. I'm disappointed in myself because Rebecca does accommodate my need to get out and exercise, but I find myself still wanting more. I sometimes feel like one of the kids staring out the window from the Cat in the Hat cartoon, only the Cat has yet to show up and outside my window, instead of rain, there is nothing but sunshine and people having the time of their lives. That is an adjustment that everyone who's been through this speaks about, but they really don't do a good enough job of grabbing your shoulders, staring into your eyes and telling you: " For the next 4 months, everything that seems like fun or was part of your day to day routine is gone, forget about it." Rebecca and I have talked about it, our conclusion is that moms have selective memories (otherwise there would probably be alot more families with only 1 child) and dads just keep their mouth shut so that other men join their ranks for commiseration.
I think I've sufficiently laid out a case for sympathy. And I wouldn't trade it in for anything. Of course there is a light at the end of the tunnel, that obnoxiously cute child that continually does really cool things that only parents can truly appreciate. Not to say that other people don't like seeing a child discovering the world, but its amazing the seemingly innocuous movements or normally unappealing bodily functions that get us excited.
The one thing that Rebecca and I both marvel at is how our moms possibly pulled off raising us.
Thomas is over 8 and a half pounds and at least 21 inches long as of last check (2 weeks ago). He is developing some meaty legs and getting some fat rolls. So things are progressing nicely. Since my last post, we've been to a doctor of some sort 4 times. Here's a retrospective of a couple of them.Last Monday afternoon:
Tuesday, June 30, 2009
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
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
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
Saturday, June 13, 2009
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
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.
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.
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.
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.
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.
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.
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
Thomas has fallen asleep and we're sitting back waiting for the next feeding.
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.
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
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 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
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.
Thursday, June 4, 2009
Tuesday, June 2, 2009
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!
Sunday, May 31, 2009
Thursday, May 28, 2009
There was a reason I was thinking about limbo though, because that's where we are. In a state of nothing, waiting for an undefined event that we can't control or predict. So, its very frustrating. We go up there every day and interact with him and fuss all over him, after all he is the cutest baby in the world. We are in this weird state where we spend too much time and not near enough time with him. It takes forever, but it goes by in an instant. So I know we're waiting for him to take a bottle on a consistent basis, but its just really hard to tell when that will be. He seems to be making progress, but its slow, some days are better than others. I'm tired of saying "maybe a week or so". I think people are starting to doubt my knowledge of the situation.
Rebecca is obviously more than ready for Thomas to come home. I try to tell her that its no big deal, that he will be coming home soon, but I know she doubts my knowledge of the situation. Her patience is wearing thin, and as much as I fear how we will handle taking care of Thomas on our own, I'm ready to move forward to the next step. I know its soon, but not knowing exactly when is really wearing on both of us.
We did have something happen today that gave us a little perspective again and will probably help us through the rest of the time. Rebecca got an email from a friend who's family member just gave birth to a preemie. His name is Gavin and he was born this week at 29 weeks and weighed 1 pound. From what I understand, his parents read this blog and have been rooting for Thomas as they've led up to their own miracle event, so I hope they don't mind if I paste their story into this blog so that you can add Gavin to your prayers. Rebecca and I both read this today and we each found it somewhat hard to get through, because Gavin is walking a similar path to Thomas. We are very happy Gavin is doing so well and hopefully will find his journey as easy and successful as Thomas has. The trip down memory lane was a little tough, but worthwhile. I apologize to his parents if they are blogging this, I don't mean to steal their thunder (I'm just using you to make it appear that I've written alot in my blog). So without further ado, the story of Gavin:
Hello Friends & Family,
First and foremost, we’re pleased to announce that on May 22nd at 10:51am, Gavin Michael Baldwin proclaimed himself to the world…well, the best he could weighing in at whopping 1 pound (which is 460grams or 16ounces) and 10.5inches long! He was 29weeks and 1 day into the gestation period; other words, he was 7months into the pregnancy….so 2.5months early. He’s redefined the term, “lil oompa loompa”…and referred to as a “micro-preemie.”
Gavin staked claim to a corner spot in the neonatal unit (NICU) of St. Vincent Hospital and will likely remain there for two to three months. He’s in stable condition, which is a “relative” term for a dude his size…his condition could turn for the better or worse in a matter of minutes, but he’s a very determined little boy so we’re confident his resilience and determination will trump his obstacles. In terms of his immediate prognosis:
· The doctors are merely working to stabilize his respiratory and digestive systems before they get too aggressive with fattening him up.
o Respiratory: Miraculously, he’s breathing 86-94% room oxygen without the assistance of a respirator! As a back-up, in case he gets too tired to breathe or forgets, there is oxygen running through tiny prongs in his nose.
o Digestive: This is Gavin’s biggest obstacle. Admittedly, if our little tyke could just muster out a good “poop”, then we’d all take a long sigh of relief. J His stomach is tolerating the small amounts of milk he’s receiving (about 1 teaspoon every 4 hours via drip system); however, his bowels aren’t “working it through”…so he’s starting to back-up in his intestines. L Unfortunately, the doctors can’t increase his (much needed) milk supply until his bowels comply. For those throwing out prayers, please ask the good Lord for a solid poop deposit in the coming days!
· Gavin was born with three layers of skin vs. the seven layers of a “mature” infant, so his skin dries out and bruises EXTREMELY quickly….to combat that; he’s greased up with an industrial strength lotion J and wrapped in commercial-grade plastic wrap…much like you’d wrap up a burrito! It’s counter-intuitive and scary to see an infant wrapped in plastic (try being Danielle and me), but seriously folks, it’s helping to save his life by protecting and nourishing his skin (the body’s biggest organ.) Anyhow, don’t be alarmed by the pictures.
· To combat jaundice, he’s “fake-baking” under ultra-violet light 24hours a day and wears little glasses to protect his eyes. The nurses are diggin’ his couture “preemie-Prada’s” – see attached pic.
· Like all severely growth restricted babies, another concern is blood pooling on Gavin’s brain. Once again, he overcame an obstacle as yesterday’s brain scans showed zero signs of blood! He will likely have 2 or 3 more of these scans as he progresses along….
Bottom line, Danielle and I are praying for solid, boring days as they relate to Gavin. We’re living and surviving by the pseudo-mantra, “No news is good news.” Gavin just needs to breathe, sleep, eat and poop……that’s his only mission. Thank you to all those that have reached out and embraced us and our little boy! Many of you are already aware of the “back-story” that took place last Thursday/Friday, which ultimately led to Gavin’s birth; however, for those that aren’t fully looped in….I plan to send out a follow-up email detailing it.
Thanks again for the love and support…and keep those prayers coming!
Mike, Danielle & Gavin
From: Baldwin, Danielle
Sent: Friday, May 08, 2009 3:52 PM
Subject: Gavin Update
Hello Friends & Family,
It’s now been 8 weeks since Black Friday, the day we learned Gavin was not progressing at a “normal” rate and was in serious jeopardy. Two months later…two months longer than the doctors thought feasible. You can’t help but rejoice and find solace in that statement. J We remain seated, firmly buckled, with our hands tightly entwined and bearing determination on our faces as the next roller coaster ride departs; Gavin’s journey is far from over.
Today we had our bi-monthly ultrasound appointment, followed by a routine doctor visit. The ultrasound and appointment went pretty much as predicted. Not a lot of change, aside from Gavin growing another +100 grams. His weight is now roughly 380grams or 13ounces (500grams = 1 pound.) He should be roughly 900grams (or 1 and 2/3 pounds.) He’s consistently grown 100grams the last two ultrasounds (so every 3.5 weeks he pads on another hundred.) Not good, but then again, not terrible. At this rate, he’ll be 1 pound at 30 weeks (most babies would weigh 3 pounds.) They also measured the amount of amniotic fluid, which remains sufficient and adequate. To review, the presence of ample fluid validates that it’s properly running through Gavin’s digestive tract (it’s also vital in developing his respiratory system.) They checked his heart, which was strongly beating at 156bpm; they checked his brain growth, which appeared normal…and lastly, the fun part: they checked him using a 3-D ultrasound scanner, which allowed us to really see him close up in color! Very cool. He was sleeping and tucked up comfortably….appearing very angelic and handsome!
Our plan is to revisit the doctor in 3 more weeks (that’ll be 30 weeks) and get another ultrasound and weight measurement. If he’s at the 1 pound mark or better, then they’ll start moving us to a delivery schedule (if that’s the best course of action.) They can better pump him up outside the womb…and obviously he can be monitored better. There’s not much we can do, but remain hopeful and positive. It’s completely out of our hands….and admittedly, there’s even comfort in knowing that.
Thank you again for all your warm, encouraging thoughts and prayers. The outreach has been phenomenal; and honestly folks, we couldn’t do this journey without your support…so thank you for jumping into our roller coaster and following along with us!
Hugs to each of you.
Mike and Dani
From: Baldwin, Danielle
Sent: Thursday, April 23, 2009 5:39 PM
Subject: FW: Gavin Update
Hello family and friends,
Well, it’s been 6 weeks (March 13th) since we learned that Gavin was not developing correctly...and that we had a long road ahead of us. We've had more ups & downs on our emotional roller coaster than we signed up for; and unfortunately, we won’t be getting off any time soon. (Ha, I heard once why roller coasters only last 60 seconds: Most folks can only go up and down so many times, then they want off.) Alas, we will continue to stay seated and ride out our journey since our little Gavin has once again proven to be a fighter!
We had our 2 week ultrasound today, which validated our hopes & wishes that Gavin is a hearty fighter and defies the medical journals. He's floating around in sufficient amounts of amniotic fluid, which means it's circulating through his system correctly. His heart rate continues to be strong and the inner-workings of his heart look good. He even had the hiccups during the ultrasound! The hiccups are a good sign as it shows he is practicing his breathing and his digestive system is developing correctly. At one point during the ultrasound, Gavin even stuck his tongue out at us – you gotta love that defiant attitude! Gavin continues to make us smile through all this grief and hardship.
For those that have encountered regular (and extended) visits in the medical world, know that relationships with office staff, technicians and nurses can develop pretty quickly. We have found comfort in one particular ultrasound technician; she provides us solace during our appointments, telling us exactly what she is looking at...and explains what it all means. There is a reason for this story: Today was not a day that Gavin was to be measured, but since she knew our situation, she did a measurement (w/o the doctor knowing) - he has indeed grown and packed on some grams since his last visit (two weeks ago.) He continues to fight given his environment...and we love him for it!
During today’s visit, we also met with a neonatologist about the second half of our journey. He gave us an overview of what to expect given how small Gavin will be when he enters the world. (To put Gavin's size into perspective: he’s currently just over 300 grams; there are 500 grams in 1 pound...and he should be slightly over 1 pound by now.) Our goal is to get Gavin to +500 grams and pass 28 weeks....at that point, he could (in theory) sustain life outside the womb and reside in neonatal care. At this time, we do not have definitive dates on when the doctors could deliver him, since it's so dependent upon his weight gain. We need to get Gavin to at least 1 pound and the doctors will go from there. He will be 25 weeks on Sunday.
We have a long journey ahead of us...and need all your prayers. Please pray for Gavin to continue to fight and grow! Thank you! We know there is only One person that knows Gavin's future and that is our heavenly Father; and without that comfort, I don’t know how Mike and I could continue through this journey. Our lives are truly in His hands. My best childhood friend (thanks Amy) sent me a verse that I'd like to share:
“You made all the delicate, inner parts of my body and knit me together in my mother’s womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed.’
Psalm 139: 13 & 16
Thank you ALL again for your love, prayers and support through this tenuous journey; it has truly touched us in so many ways!
Hugs to each of you.
Mike and Dani
From: Baldwin, Danielle
Sent: Monday, April 13, 2009 8:40 AM
Subject: Gavin Update
Hello to all our friends and family~
As most of you know, we had another ultrasound on Thursday to see how our little Gavin is developing. In a nut shell, he is doing OK given his prognosis. He still has lots of amniotic fluid (which is vital) and he was kicking and squirming around like any active little boy. They did an intense study on his heart; he has a nice strong heart beat and all his valves and chambers are normal. All his other major organs looked fine and healthy. They also measured Gavin for weight and size - he did grow 2wks in the 3.5wks from his last measurement. Yes, he grew…but not at the rate the doctors had hoped or where he ought to be on the “charts.” Bottom line, aside from being very small, he’s developing. The doctors are very concerned with his neurological development due to potential lack of oxygen (from low blood nourishment), which obviously really scares us.
After the ultrasound, we met with our doctor. She explained the tenuous, delicate bubble that Galvin’s walking on….and that she’s very pessimistic about his development and survival. On the flip side, she or any of her colleagues can’t explain what’s wrong with the pregnancy, what’s wrong with Gavin or why he’s defying “textbook” methodology….so their uncertainty is both frustrating and scary.
Our plan for Gavin is to follow the course that we have been on…for us, as long as he continues to fight so will we! At this point we are scheduled for ultrasounds every two weeks. If Gavin can continue to keep doing what he is doing…and get to 30-32 weeks (he was 23wks on Sunday) then at that point the doctors will monitor him very closely and likely take him by c-section. Some babies in this situation are better outside the womb then inside at this point in the pregnancy because they can do so much more for the baby (i.e. steroids and better nourishment.) Of course if he can make it to this point he will be in neonatal care for many weeks. From there, we’ll hopefully discover how ‘sick’ (handicapped) he may/may not be…
Mike and I are literally taking it day by day, as we do not know what tomorrow may bring. Yes, Gavin could leave us at any time, his situation is very critical but we pray that God has given us a fighter! We need prayers from each one of you…and believe me Mike and I have felt them. Thank you all so much for reaching out to us; we couldn’t ask for a better “safety net” that you’ve all provided to us over the last few weeks!
Hugs to each of you.
Mike and Dani
From: Baldwin, Danielle
Sent: Wednesday, March 25, 2009 10:56 AM
Subject: Gavin Update
We wanted to send everyone an update on our little Gavin.
First, we want to thank you all for the prayers and comfort that you have all showered upon us. It has truly helped Mike and I get through the past 10 days of uncertainty.
We had an ultrasound yesterday afternoon; and afterwards, we met with the doctor about all the test results...and where we go from here. The ultrasound was positive news – Gavin has a good amount of amniotic fluid and was moving around like a good little boy – we even got to see him yawn! The test results from the amniocentesis were all normal or negative for infection and chromosome deficiencies. Our doctor said she was stumped and was not expecting these positive results. So what now? Well, unfortunately we still have a long road ahead of us. They did not measure Gavin’s growth as it was too soon to get an accurate reading. We go back in two weeks for another ultrasound. So once again we are in a ‘waiting’ period. If we can keep the amniotic fluid where it needs to be and he continues to grow and fight, then he's in the safe zone. It’s all about getting through every day and every week – we are only half way there.
We continue to need everyone’s prayers as we aren’t out of the woods by any means; and unfortunately, we may never be.
We will continue to give you all updates on Gavin as we continue through this journey.
Hugs to each of you
Mike and Dani
From: Baldwin, Danielle
Sent: Thursday, March 19, 2009 1:45 PM
To our dearest friends and family
Mike and I wanted first and foremost thank you all for the prayers, cards, flowers, food that you have showered us with. We have truly felt the love and comfort from all of you these past few days. We are so thankful to each and every one of you.
As most of you know, our world came to a halt on Friday when we went in for our 18 week ultrasound. Our biggest concern was not finding out the sex of the baby - we didn’t care what we were having, we just wanted a healthy baby and a nice surprise at the end of all this. Like most nightmares, it all just started to unravel before our eyes. The only things I truly remember: the ultrasound tech questioning my weeks; the doctor telling us that something was wrong with the baby...that our baby was not going to survive. The next thing I know, I’m having an amniocentesis to help find out what is going on with the baby. Mike and I walked out of the doctor’s office Friday in complete shock not knowing which way was up. Now that some time has passed, we discovered our baby has IUGR – Intrauterine Growth Restriction. On Tuesday, we learned the first round of test results relating to chromosone deficiencies were normal. We took those results as a big positive. We still have a couple more tests to come back, but won’t learn those results until next week. We are currently in a "waiting" period...waiting for the complete amnio tests, and I guess to see if anything changes or develops with the baby; we're still in a very critical stage. We are scheduled for another ultrasound next week.
During the amniocentesis, I desperately wanted know the sex of our child...since the surprise was no longer going to happen. We learned that it was a boy; we named him Gavin.
Please continue to keep us in your prayers. We believe in the power of prayer and know (and appreciate) that GOD is ultimately in control of Gavin's well-being.
Thank you all again; we truly have the best friends and family and feel the love from all of you!
Mike and Dani