Sunday Grab Bag

First things first, many, many new pictures are in the slideshow to the left, like 250 (I know, hard to believe, but we were able to capture Thomas at a cute moment or two). You can click on it and go to the photo album to see the pics bigger. Second, you will find this blog to be full of random thoughts. As a result, it doesn't really tell a cohesive story. Sorry, I will look around my surroundings and find something to be inspired by one of these days.

Sunday night measurements night. Thomas is 6 pounds 3 and a half ounces and 18 3/4 inches long. He's chunking out quite nicely. Feeding is becoming a hit or miss proposition for Thomas. He's fighting the bottle more than we would like. We're not sure (mostly because we're not doctors and have nothing but wild speculation as our guide) whether his nose is stopped up and he can't breathe, or the constant barrage of ventilator tubes down his throat have made things painful to swallow, or he has acid reflux, or he's so advanced that he knows if he holds out long enough, the food gets put in the stomach automatically (and isn't that every man's dream?)

Some feedings, Thomas has been a champ, a full bottle in 20 minutes. Others, not so much, he'll fight, kick, cough, sleep and basically avoid any and all attempts to feed him. He was feeding 4 times a day and tube feeding 4. Today, they moved him up to 6 on, 2 off. We're not sure how he will handle this, but we're hopeful.

So, maybe this week we'll get him home, but there's really no way of telling. Thursday is Rebecca's birthday and all she wants is Thomas, but we're being patient and I think she will happily accept a belated birthday card, one of those really clever ones where there's a donkey on the front and inside it says "Sorry I'm such an ass for forgetting your birthday!", if its from Thomas.

I know there are a couple people that have expressed an interest in seeing Thomas when he gets home and we heard from someone (we can't remember who) that you really have to keep a preemie basically in quarantine to protect him for several months. I had the idea that we could have a party outside of Thomas' nursery window and at the right moment, we would open the blinds, I would charge a dollar and people could come up and look through the window as Rebecca held him up. Further discussions with trusted professionals have indicated, that people can see Thomas, we just have to be careful about people touching him, especially if they are in anyway sick or a child (They are apparently germ factories. Be warned if you've got one in your house! Protect yourself!). We may still have the party, just raise money for Thomas' college fund (or that table top Galaga game that Thomas told me he wanted), but we can probably have people over in small doses.

This sign appeared the other night all over the place. The immediate speculation amongst myself and Rebecca is that her natural curiosity (nosiness) and flair for small talk (nosiness) with other parents had brought down the wrath of the hospital in the form of a politely worded sign. I've mentioned the very unique situation that a NICU is. Privacy is more of a state of mind than an actuality when you're 3 feet from the next baby and your chair is bumping the next parent's. So we have been more than a little guilty of peeking at other babies, over hearing conversations and, on occasion, preaching the gospel of Thomas to let others know that things aren't that scary. Being that we feel like we know everyone up here and everyone appears to know us, we were a little paranoid, but kind of "oh well" that we were a target, if not the target.

One nurse said it was really more targeted at people who blatantly walk up to babies that they don't have any association with, or discuss babies with other people that they have no association with. We're probably still walking a fine line, but its so difficult not to notice when the same baby is next to you for weeks, or another parent is constantly crossing your path and you know what they are going through, because you're going through it. It was also fun to joke that what's the worst they can do, kick us out? That's what we want anyway.

Limbo Limbo

That's right, we're in Jamaica, sipping drinks poolside, watching the limbo contest...wait...no...I was day dreaming again. We're in the NICU and Rebecca is trying to straight jacket Thomas so she can finish feeding him. Its kind of funny. He gets an arm free and he just starts swinging it around. Makes it very difficult to keep a bottle in place. Lock those arms up and he's relatively calm and not nearly as distracted.

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

Hello Everyone,

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
Subject: Update

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

No Sleep, no problem

Thomas is hanging out with Rebecca as I type this, fighting off sleep. He's been fighting sleep for several days now it seems. He prefers to take little cat naps as opposed to a full-on sleep. So basically he was up til 5:30 this morning and has been dosing in short bursts for the most part. He just doesn't want to miss what's going on I guess. As long as he has his pacifier, all is well.

We are now totally ventilator free and taking milk through the feeding tube. So he seems very happy. He does have an issue. He's got an Hemangioma on his backside. A hemangioma is a benign growth that consists of small blood vessels. Its not dangerous and is kind of like a birth mark. An ulcer has developed on the hemangioma, not sure what that means or if its causing any discomfort, so we'll see.

Its kind of rocking in here tonight. Thomas is still in D, which is the room where he started on his NICU adventure back in January. There are several new borns in here and their parents are here as well. So its quite hectic and crowded. As always, Rebecca is observing and eavesdropping. I'm minding my own business, but occasionally I hear some things. Always interesting seeing new parents dealing with the NICU and their babies for the first time. All of the newborns seem to be very healthy and close to the same size as Thomas is now. Its nice because none of the parents seem too apprehensive. There's more joy and excitement. There's one particular family that is very enthusiastic. Not one inside voice among them though. They are very irritaining. Sadly I did not bring the digital recorder, so you'll just have to trust me that you too would be entertained.

Multi tasking, my new way of life

I'm a simple guy, laid back, potentially lazy by nature. This whole responsibility, maturity thing totally sucks. I'd certainly be in favor of going back in time to when I sat around all afternoon and watched cartoons and maybe went and played soccer or rode my bike, if I felt like it. You know, where ever the wind took me. Now my time is no longer my own, the to-do list never seems to shrink and I always feel like I'm double booked...and Thomas isn't even home yet. I mention all this in a thinly veiled attempt to draw pity and to let you know that I'm writing this blog in the NICU while Rebecca holds Thomas. Multi tasking is the norm for me these days, but to be honest, I still ride my bike and play soccer a good bit, not to mention swim, volleyball and run. I'd still gladly accept any pity you'd like to cast my way.

Thomas is still in recovery mode from surgery. They finally got him extubated yesterday and he's on nasal canula, maybe til tomorrow. He's back in his crib and wearing clothes again (sorry ladies, the gun show is over). And they've started feeding him through the tube. He'd lost a little weight, so he's just under 6 pounds.

Rebecca is holding Thomas right now, for the first time since Tuesday. She's fully recovered from her cold and appears to be very happy. Thomas appears to be passed out. He's been asleep most of the day after having been awake most of yesterday. Sleep patterns have not exactly been established.

We've almost completed the nursery, a few more hand prints still need to be painted, so please get your traces in if you haven't yet. If we can find a camera, we'll send pictures of the finished product.

Post Op

Thomas is recovering well. They are keeping him on the ventilator one more night, but will take him off tomorrow. Its probably skewed by the IV fluids, but right now he weighs 6 pounds, 3 ounces. Sadly, mom is not recovering as well. She has a cold and is laid up wishing there was a team of nurses taking care of her, or at least one. Since I'm out of town, I'm failing miserably as a husband and a nurse.

Hopefully we will begin the feeding frenzy anew, in a day or two. Hey, that rhymes!

Deja Vu all over agian

Here I am again, sitting in the waiting room with Rebecca, waiting for Thomas to come up from Surgery. It gave me time to think up alternate titles for the blog. Here they are:

Sixth time is the charm

If its Tuesday, it must be surgery day

Why is it that nothing good ends up happening when I'm laying in my bed without any clothes on

I guess a little explaining would make these titles make sense. Or I could move on and wonder why anyone would want to watch a show like House while sitting in a hospital waiting room. Kind of like making the in flight movie "Concorde 79". But yet here I sit, and the show is on. Anyway, back to the titles and explanations:

Sixth time is the charm: This one is fairly easy. This is Thomas' sixth surgery. Pretty crazy when you think about it. We're definitely not used to it, but I don't know if its hitting quite the same as the last couple times. The first surgeries were all about survival, so there wasn't much to consider or think about. The next ones came after we'd gotten really attached to Thomas and it was a little more scary and real, if that makes sense. This one is hopefully a means to an end, getting him home. They say this procedure is no big deal, so we were not nervous really walking into this one. Still didn't want Thomas to go through it, but we were cool, calm and collected.

***Spoiler Alert***
Since I'm trying to write this real time, the doctor just came in and told us that everything went well. So if you're reading this, then you already know how things turn out. Don't spoil it for everyone else. And now back to your regularly scheduled programming.

If its Tuesday, it must be Surgery Day: Just a bunch of surgeries going on today. Three in Thomas' room alone. Based on the headcount, that's 50% of the population, but then again, maybe his room is throwing off the curve. It gave me pause to think what kind of lifestyle it must be for a surgeon, bouncing from procedure to procedure, where some one's life is in your hands. It must be very exhilarating, but then again, its probably somewhat common place for them after a while. I know I got that way when I worked at Wendy's in high school. It stopped even looking like food to me. Probably not the best comparison, but there's a correlation there somewhere (yes, I just compared surgery to making a double with cheese and I'm going to stand by it).

Why is it that nothing good ends up happening when I'm laying in my bed without any clothes on: Maybe I'll just leave this one unexplained...

Well no, I won't. Prepping for surgery in the NICU involves starving Thomas, which he really didn't care for, putting lines into both arms for IV drips, which he really, really doesn't care for, and just hanging out in a diaper for easier access I guess. Since he's been wearing clothes for a few weeks, it was weird seeing him hang out shirtless.

I guess I should tell you what the surgery is for. Thomas has 2 hernias in his lower abdomen. They are about the size of golf balls now, so they are probably uncomfortable, I'm guessing. Way too many sit ups and crunches. The doctor (Dr. Hermann for those tracking with their Baylor playing cards) has decided to go ahead and repair both at the same time. The hope is that this may help with Thomas' feeding. We'll see.

Since I'm blogging away and I told you the outcome of the surgery (its in the spoiler alert above, if you didn't read it) and we're waiting to go see Thomas, I will throw in another addition of Mike's Observation Corner. While we were waiting with Thomas to go down for surgery, Rebecca revealed something that I hadn't noticed before. Thomas' ear lobes are attached to his head, as are Rebecca's. Mine are not. Rebecca's dad's are not, but her mom's are. I have determined that this is the Calhoun curse (Me Ann's maiden name. I'm waiting on confirmation of ear lobe attachment/detachment from Leigh and Uncle Bill). This horrible affliction may haunt Thomas forever. Probably not, since I had never noticed Rebecca's ear lobes. She has either kept it hidden all these years through the clever use of hair, shadows and positioning, or I'm just not that observant (ironic since its my "observation" corner). Either way I feel tricked. :)

Weekend clean up

Sunday morning and I made an early morning milk delivery for Thomas' 8 am feeding. Since Wednesday, feedings for Thomas have been up and down. He was struggling with it most of Thursday and Friday, but yesterday was a bit better. They've switched from the original formula combined with milk to Ellicare combined with milk, which Thomas seems to be taking better. Part of the issue may be that Thomas has a diaper rash. That combined with the hernias and the potential for acid reflux may be making things uncomfortable all the way around for him.

The other issue is that Thomas is a little A.D.D. I do not in any way mean that in the literal sense. Thomas doesn't have any disorder. He's a new born boy that easily gets distracted, especially in the NICU unit that he's in now. Most of the babies in there are similar to Thomas in that they are on there way out the door or resolving an issue to be out the door. A great many of them are also feeding from the bottle, so there is always activity and noise and things to turn your head towards. Thomas is also working on his communication skills. Right now he appears to be on the chapter pertaining to using your hands to gesture, because they are always flying about akimbo.

Swaddling helps the arm issue temporarily, but Thomas looks alot like Harry Houdini working his way out of straight jacket. He can almost always work one hand loose and, more times than not, both. Just a matter of time. To his credit, he does not get frustrated by this process, just keeps at it.

Anyway, the long and the short of it, is we haven't found the right combination to get him to take his bottle every time. He seems to be doing bette rthough. He's still gaining weight though, 5 pounds, 11 ounces and he seems to be filling in. His legs are starting to get a little chunky.

And now its time for another installment of Mike's Observation Corner. In today's corner, I'll be observing myself. I've noticed that any time anyone asks about Thomas, I tend to give a vague answer, that he's fine, things are going well. Its not for the reason that some might think. Its not that I don't want to talk about Thomas, quite the opposite. Its actually that I don't want to spoil the blog. If there's something interesting that I plan to write on the blog, I find myself subconsciously holding back information so that I don't scoop myself. I think that's a little weird and I'm working on not being so secretive.

Eviction Notice?

Everyone seems to want Thomas to go home. Rebecca really wants Thomas to go home. The nurses would like Thomas to go home. The insurance company seems especially anxious for Thomas to go home. Thomas appears to be fairly bored with the limited scenery in his current surroundings.

How are we going to get across that finish line? Well its all about the feeding. Today, Rebecca met with the occupational therapist and the pediatric doctor who will be taking care of Thomas, post NICU. They tested Thomas' swallow capability this morning, which is done by giving him a syrup like substance with dye in it, and then they x ray it as he takes it from a bottle. Of course during this test, Thomas was more than willing to take the bottle and gobbled down 20 ccs. Unlike his normal feedings. The results were very good. He has a very strong swallowing mechanism.

The strongest possibility that is left is acid reflux, which is very common when you have a ventilation tube down your throat for an extended period of time. They are putting him on Prilosec to see how that does through next week. Depending on what happens, they may postpone the hernia surgery. The reason being, if the Prilosec does not work, they will insert a G tube into his stomach and they would like to do that at the same time as the hernia.

The G tube would be used to feed Thomas at night whatever he doesn't eat during the day, when he comes home. Basically, one way or another, Thomas will be home in a couple weeks. This part of the journey is almost over. There would be an added bonus of the G tube, although we'd like Thomas to get fully comfortable and at ease with the bottle, the G tube would be used at night to feed Thomas. So, no night feedings! I jinxed us on purpose by telling you this so that Thomas gets better sooner.

One other note. Rebecca met the pediatric doctor Monday. When she did, he told her that he had never had a boy who was born under 500 grams. Thomas would be the first. When she told me that, I thought it was weird and quietly wondered if maybe we had an inexperienced doctor or something. I knew this wasn't true and Thomas' nurse told us how great he is. Today, Rebecca found out from the occupational therapist that the reason why the doctor had not taken care of a boy who was born less than 500 grams is that very few boys that weigh that little survive. She told Rebecca that Thomas was a miracle. I don't really like that sort of description. I think it puts a little undue pressure on him to really make a difference or be special. Maybe say that the situation was miraculous and we're all just along for the ride.

I'm just not that hungry

Quick update. After really good initial strides feeding, Thomas has become less and less interested in taking the bottle over the past few days. He's only taken a portion of the milk each time, if at all. Fortunately, they do not choose to wait him out. If he doesn't want to eat, they give it to him through the feeding tube. We're not sure what's going on. He seems to want to eat, but the act of eating is either making him tired or uncomfortable. Possibly from being on ventilation for so long. The doctor and the occupational therapist are putting their heads together to figure out what is going on. I'll let you know.

They've scheduled his hernia surgery for Tuesday.

That's all for now.

We're real parents now, or...

How Rebecca almost failed discharge class...

Provocative title, no? So Rebecca and I are taking the last steps toward bringing Thomas home. One of those steps was this morning, the dreaded and feared baby CPR and Discharge class. I wasn't really sure what we were going to cover exactly in 2 hours that would properly prepare us to be qualified to be parents. I remember taking CPR years ago and it taking many hours, so I was a little skeptical that we would be taught enough to really be effective, especially in an hour.

Class started at 10, of course society's rules and timelines don't apply to super parents like Rebecca and me. We were approaching the hospital from 2 different directions, Rebecca fitting this class into her work schedule. At 5 til 10, we were on the phone to each other, telling the other that we might be late and to get started without the other. At 10:15, we both arrived in the parking lot. At 10:20, we were met at the reception desk by the CPR instructor and escorted to the class room, where 5 other people and 7 plastic CPR babies were waiting patiently. Very good start.

The approach to cramming 8 hours of CPR knowledge into 1 is fairly sound. They don't ask you to memorize anything. They have a very simple step by step sheet that they want you to keep with you to refer to in a time of need. The specific instruction is to actually thumb tack the sheet to the wall in the nursery. I'm not sure the instructor understands or cares about nursery decoration and presentation. Given the wide audience that goes through the course, its taken to a very basic level. Since I'd taken CPR before, I knew what was going on and was sitting back thinking how easy this is. To get us all involved, the instructor had each of us read a step title or description. I went first, nailed it, perfect diction. Then Rebecca's turn. We're going to be the star couple, parents of the year, they're going to totally forget that we made the whole class late. Then Rebecca reads the wrong step, then tries to correct herself and reads another wrong step. Crushing defeat. Rebecca was lost after step 1. Actually, she got a little confused with the layout of the sheet, but it cracked me up.

That's ok, we can rally. As we were reading the steps, we also were practicing with our CPR babies. Rebecca, all dressed up for work, was wearing lipstick. This made the baby look like it had very haphazardly applied lipstick. I made a very humorous observation to Rebecca, which made her laugh, which in turn drew a disapproving stare from the instructor. Strike 3! As it turns out, there was no test, just a couple run throughs and our xerox copies.

The second part of the class, the discharge, was also fairly innocuous. I guess the hospital is in an awkward position. They can't really tell you what to do, they can only suggest and recommend. Once you leave the hospital, you're left to your own devices. So there was a lot of that, general advice and non-specific instructions. I think I was really looking for more of a "these are the steps you will take to leave, this is what you can expect in the first 24 hours, the first week, etc." I know every baby is different, but there is a commonality that I would think should be pretty standard by now. In consulting, every business that we deal with claims ultimate uniqueness. There are always a set of core processes that can be identified. Then you're left with quirks and nuances that are much easier to deal with in isolation. Anyway, that's the way I'd do it, but nobody likes a know-it-all consultant.

In the end, there was no gauge of our comprehension or our ability to parent. Not even a certificate I can frame for my wall. Despite Rebecca's attempts to get us disqualified, we were all given the thumbs up and a notation was made in Thomas' medical chart. You'll just all have to check back in 18 years to see whether the hospital made the right choice or not.

First Mother's Day!

Another crazy week, started out slow while I was out of town Tuesday thru Thursday (not much to write about), but just non-stop since then. Friday was all about getting ready for and executing the hand print party, Saturday, Rebecca's parents came into town and we spent the day with grandparent quality time for Thomas and Nursery prep. Today was Rebecca's first mother's day and I did all of the things you're supposed to do as a husband and father; I slept in, watched golf and basketball and then went drinking with the guys.

Thomas has made amazing strides in the last 3 days. He drank 50 ccs from the bottle the last 4 times today. So he's taking from the bottle more than from the feeding tube. He's completely off TPNs and Lipids and they've removed the central line from his chest. They're also only monitoring his breathing and heart beat now, and there is talk of moving off of all monitoring (still something we're a little uneasy about, but they know best).

So clearly all of this is leading to something, I just can't place my finger on what it could be. Well hopefully they will give me a hint when we go to our discharge class tomorrow (I think that will give me some decent material for a blog, but we'll see).

It is late, so I will make up for this abbreviated blog, and the lack of updates, with many forced jokes and run on sentences tomorrow. Until then, here's a video of Thomas staring intently at the camera, or is he looking into your soul?

Happy Mother's Day, to Rebecca, my mom, Rebecca's mom, my sister, Jennifer, Aunt Susan, Dede, Cynthia, Leigh Ann, Pat...and every other mother who might be reading this.

Three Days, Three Updates

It was a very busy weekend all the way around. Today I will cover the events of Saturday, Sunday and Monday. I'm in Belton and forgot to load the pictures onto my laptop, so there will be no pictures at this time, you'll just have to use your imagination, consider it a theater of the mind.

Lower the lights,
Cue the orchestra,
Draw the Curtain:

Act 1: A Birthday and a Wedding.

Saturday was the big 4 months for Thomas. Really crazy to think that he has been in the hospital for 4 months. I really cannot get my head around that. Just doesn't feel like it, but it feels like forever all at the same time. Happy Birthday Thomas!

As I mentioned before (although not quite enough for Leigh's liking), Rebecca's sister got married Saturday. It was a day of hectic activity for Rebecca and her mom. I wisely snuck away and did a race. I found myself to be not as focused and thought about Thomas, especially during the swim when I realized I wasn't in that great of shape ("Didn't get to train as much as I wanted" goes on Thomas' list). Although there were many phone calls to Thomas' nurses, including at least one at the reception, we both were able to relax and step out of our current responsibilities and pressures for a while. Of course there were many people that came up to us during the weekend to inquire and wish Thomas well. Its always really cool and uplifting to hear that people are following Thomas through this blog, especially when its someone that I may not have met before. So it was a really nice evening for both of us...oh , and Leigh got married and wore ivory. (It was a really wonderful ceremony and reception and Thomas got a new uncle, which he's totally stoked about)

Act 2: Revolving Door at the NICU

Sunday was a big caravan back to Dallas for Rebecca and I, my parents and Leigh and Carlton, who were flying out of Dallas for their honeymoon. So when we got to Dallas, we all headed to the hospital. Where over about 3 hour period Thomas was visited by 3 ghosts, wait, no, different story. Thomas was visited by mom and dad, nana and papa and Aunt Wee and Uncle CaCa. Those aren't official names, I'm just trying them out here to see how they read. I'm going to take this opportunity to bring in a guest author, Thomas' mom. Rebecca has been hesitant to jump on this blog since I'm so eloquent with my wordy phrases and stuff, but she happened to respond to some one's email today and I thought it was a nice summary of the weekend, so I'm going to cut and paste it here. Please enjoy Rebecca's debut:

"Hi Laurie,

It's ALWAYS good to hear from you. I enjoy everything you write. The wedding was absolutely wonderful and everything went according to plan. Thank you for asking. We were definitely able to enjoy ourselves since Thomas was doing so well and our favorite nurse, "Aunt" Tina, was there Friday and Saturday to take care of him. Fortunately, he did not give us the silent treatment upon our return. He greeted us with smiles and a poopie diaper for my sister while she held him. Carlton, my sister's husband got to see Thomas for the first time Sunday night. My sister cried because Thomas looks like a baby that you would take home from the hospital (size wise). She loves his little hands. I sent the pics of Thomas from the past week to you and pics from Leigh's, my sister, Rehearsal Dinner and Wedding. That way you could see her white gown! Hope you are doing well.

Love,
Rebecca :)"

Act 3: Public Awkwardness

Monday evening, it was finally just Rebecca and I after a whirlwind weekend. We went up to the hospital and Thomas was looking as cute as ever. I will dance around this and get to the point as best I can. There are things you do in the privacy of your own home that in the NICU you're not afforded the same alone time. I think I've mentioned before that a NICU has all of the solitude and privacy of Melrose Place (its an old tv show reference, look it up, you'll think I'm funny). Everybody is all up in everybody's business. So there are things that happen that a mother is required to do. You basically have to deal with all that sort of thing cribside. There's no private room. All you get is a folding screen, a blanket and strategic positioning of your chair. Rebecca is very shy and modest and I'm not much different. I will just say, she was not really excited about this, hated it actually. Rebecca wasn't into it and really, neither was Thomas. In typical manliness, I pulled out my MP3 player and went to my happy place. I share this in the interest of giving you all the full experience.

And Scene

Update on Thomas, he's at 5 pounds, 7 ounces. They're adding some stuff to his milk with extra calories (kind of like muscle milk if I can make another training parallel). It also makes the milk a little thicker, like a milkshake. It seems to be working a little better. He's able to drink a little better. They are still taking turns with the bottle and the feeding line.

A good start, but...

OK, it looks like we’re in the home stretch, so we’re going to have a second hand print party this Friday, May 8th. Same deal as last time, doors open at 6pm. We will provide hors devoirs and drinks, you will provide a hand. Even if you’ve already put your hand on the wall, please feel free to come by and have a drink. This may be the last time anyone sees us for a while.

If you can’t make it, or are not in within a reasonable driving distance, please send us a trace of your hand. Even if you don’t necessarily know Rebecca and me that well, but you do feel like you know Thomas, we really would love you to participate.

We’d love to see each of you there, but if you can say no to this face, I completely understand.

The address is:
6715 Inverness Lane
Dallas, TX
75214
214-370-0292

Absentee Parents

Rebecca and I have abandoned our son because her sister is so self-centered that she insisted that we go to Shreveport, shower her with gifts and tell her how great she looks in white (I’m assuming she chose white, but she is a little weird, so it could be purple. I’ll let you know after she walks down the aisle). Leigh is getting married tomorrow. Rebecca left yesterday and my parents and I have just left Thomas and our on our way.

We visited Thomas last night and this morning. Last night, my mom and I attempted to feed Thomas, with limited success. In bottle feeding Thomas, they have been going back and forth on which size nipple to use. When he uses a normal size nipple, it gives him more milk than he can handle, so some of it doesn’t make it to its intended destination (his stomach), lots of dribbling and spillage. So they tried a smaller nipple, which does not dispense as much, but Thomas has to work harder to feed. This wears him out a lot.

My mom initially tried to feed Thomas last night and Thomas basically sat there with the nipple in his mouth, not doing anything but smiling occasionally. Clearly he was amused at My mom, the nurse and I trying to coax him to eat. I took over without much more success. Thomas was so tired that, despite the fact that he was sitting straight up, he fell asleep with the nipple in his mouth. I couldn’t wake him at all. I am convinced that he does better with the regular nipple and that much like his dad, he’s just a sloppy eater.

We went by today before we went out of town and the nurse said he’d done a little better with the larger nipple, but an occupational therapist is going to come in at 2 to feed him and I guess determine what kind of career he’s going to have? Seems a little early for that sort conversation, but I’m not the expert here. My money’s on either fireman or a truck.