No news is good news

We're moving tomorrow. This chapter's over and we're leaving our Central life behind to become West Austinites. We're very excited to begin a new adventure, now with Miller Lee in tow. Here's a photo of the house. See the bendy trees?


Well we went to see the doc last week for our sanity check and he said MP's doing great. In fact, he gained two pounds in two weeks. How this happened I haven't a clue, since at the previous visit he'd lost a pound over a period of a month or so. Miller also had a CT scan on Thursday. It was a scheduled follow up and was originally meant to be an MRI. When I called to confirm our appt I found out it was going to be another CT scan. I can't say for sure but my inkling is this is a positive thing, since MRI's are bigger and scarier and you have to be perfectly still. We somehow accomplished the scan with the wiggly worm wide awake, no sedation, no sleepy meds. We have not yet spoken with Dr. George but did get a call from his office. They used a lot of big words I can't remember, but basically it sounds like there's nothing really new or worrisome. But we'll see. We have an appt on the 27th.

With the exception of Miller's new and not improved schedule, things are great on the homefront. He's happy happy joy joy most of the time. He still loses it when we put him in the carseat but he's getting a teensy bit better. Teensy. He's trying really hard to crawl, but his arms & upper body are not ready yet. Miller however, is ready. So he army crawls and scoots on his belly and whines. He loves to stand on our laps, and when we pick him up his kicks like crazy. Late at night I'll get him up once to feed him and he'll hold his bottle. He's starting to reach and grab, and he'll bat something out of the way if it's bugging him. I'd have to say on the awesome scale it's a 10. I promised myself I would try to allow myself forget at least some of what they said in the hospital, but I just cannot help but look at this kid and think 'total miracle'. It gives me the chills and I get all teary-eyed and introspective. But it's true. I don't want to take any of this for granted. Miller is a miracle in the flesh. Period. Who knows what kind of 'arm' he'll have or how fast he'll be able to run? And who cares? He's an amazing little man who's taught me more about life in the past 7 1/2 months than I've learned in 33 years. He's my little mountain mover.

7 month update

Holy Moly! An update! I didn't mean for this much time to pass. Life has a way of sneaking past you, especially when you're all wrapped up in your little tater tot.

Miller is a little champ these days. He's just the happiest little man [except when he in his carseat] and full of smiles, giggles, belly laughs, and funny faces. He is rolling over constantly [tummy to back]. When we have tummy time I sometimes move all the toys to make room for his 'rolling alley' and then tempt him with whichever toy is catching his eye at the moment. He LOVES the mirror and is constantly cooing at himself in it. He is quite the little ham sandwich when the camera comes out, and he figured out that this face will get him what he wants.

Healthwise, Miller is doing doing great. We've been very careful, and I cringe whenever he sneezes. Still no teeth, but the teething behavior is persisting. Lots of drooling and biting, and occasionally some nighttime crankiness. We went to see the doc last week for his 7 month checkup and he had lost a little bit of weight. The doc says not to worry since he was on the chubby side, and that he's pretty much on target now. We go back this Friday for a sanity check. I'll get to weigh him again and the doc will give him the once over.

About a week ago Miller started eating rice cereal. This is how he looks every morning-

We finally closed on our house last week so we'll be moving soon. I can't wait to hang that Little Tikes swing in the tree we picked out for him. It's actually the perfect tree-climbing tree. And there are crooked bendy enchanted trees all throughout the front yard, perfect for Halloween spider webs, scarecrows, and Christmas lights. It's all very Two Cats in the Yard, even though our cats are dogs.

I almost forgot! The other baby Miller, 'Miracle Miller', was born on the Sunday after Thanksgiving. He's a beautiful, happy, healthy baby boy, and he's home safe with his parents! Congrats Matt + Dana! Welcome to the wonderful world of sleep deprivation :).

The Great Pumpkin

Miller's first trip to the pumpkin patch was this past Saturday. He was a total ham as always! Look for more photos in the slide show at the top of the blog.


Tomorrow we go back to see the doc for our official 6 month well check. I can't believe how quickly time passes, or how soon we forget. Just the other day I was looking back at some photos from when MP came home in July and it was so strange to see him so tiny, perpetually sleepy, hooked up to an apnea monitor and oxygen. Now he's all wonder and smiles. So expressive and always staring at our mouths. He's quite the communicator and I swear he's trying to repeat what we're saying. Especially if we're saying 'ooouuuuuaaahhh!'.


Last week we started our PT with Little Tesoros Therapy. They're so great! Anne is our PT and she's great with Miller. She's sweet and patient, and is giving me some great homework to help bring him up to speed. She says there are a few things that we need to work on but she's really impressed with his social skills ! Well that's probably hereditary. I spoke way too soon about the teething in the last post. He pretty much started the next day. The doc says it may come and go a couple of times before any teeth poke through. Poor little guy gets a bit cranky and bitey though so he's getting an occasional dropper full of Tylenol.


The pumpkin patch was a big outing for both Miller + momma. Normally Miller doesn't make it past the front yard or on a good day, the end of the street. The enclosed and crowded spaces are still a no-no for a bit longer. We have been so very lucky with his health these past 6 months and there's no reason to start taking chances now. We're following doctor's orders for those that think we may be a tad bit overprotective. That takes some sacrifice of course but it's short term in the grand scheme of things. Hopefully nobody thinks we left the country.


In other news-

Aunty Paula + Uncle Andy are having...a girl! In this family that's almost a miracle in itself with all this testosterone. Hooray for the girls team! I started boot camp yesterday so we'll see how that goes.


So far, all 2000 parts hurt. And I am limping. In December we are moving. Probably. We are known for changing our plans, but this time I think it's going to stick. And since DP wants to put a TV in every room (seriously), look for us to be hosting a Superbowl party this year. You may have to sit on lawn chairs but you'll be able to watch the game in the bathroom. A fair trade, Danny would say.


For those of you who remember us mentioning the other baby Miller, "Miracle Miller" DeLorenzo, he is still in his momma's cozy womb in week 31 and counting! Please continue to keep him in your prayers as well. One day we'll be posting photos of them playing together :). You can check on his progress by clicking HERE.


We miss and love you all, and know that we wouldn't be where we are without all of your prayers, so thank you.


Lots of love, (and now giggles) Stephanie, Danny & Miller Lee Peeps

24 week Update

All sorts of new things are happening with Miller lately. First off, he's 12 lbs, 13oz, AND officially off the preemie chart! Today he landed on the big boy chart and is in about the 50th percentile on everything with regards to his corrected age/gestational age (the age he should be). Over the next 18 months or so we think he will catch up to his birth age which right now is 24 weeks.


Today after his exam Dr. Mirrop said he looks great! His head growth and length are exactly where he would expect them to be and his weight is still a little on the chunky side-but who cares? I love his fat tummy and I'm just glad it's not the other way around. We're on the cusp of another new phase-teething. We can see and feel his teeth coming in and it's only a matter of time before they start trying to push through. We also talked about ECI and their lack of interest in Miller. Dr. Mirrop put some things in perspective and I feel better after our conversation. In the end, we're being ignored because Miller's doing so well--and there are lots of little ones out there with not-so-good parents who need the support and intervention of ECI. He also referred us to a private place to take Miller, so we'll let you know how that goes.


Yesterday we had to visit the pulmonologist to get our first Synagis shot. It's not a vaccine. It's an injection of antibodies to help little ones like Miller avoid RSV during the season lasting from October until through March. He'll have to get this shot once a month until then. Things did not go well and I am not looking forward to next month's shot. That needle was way too big and I'm not sure Miller has forgiven me yet, or if I have forgiven myself. He turned purple, stopped breathing, threw up, eventually cried--all of which led to me crying too. It's essential though, so we will just have to tough it out together.


Developmentally, it seems like he's changing everyday. In fact, today he giggled for the first time! At first he did it in his sleep and startled himself. It was so stinkin cute and I just wish I had it on tape. A few hours later while I was making silly faces at him he did it again! Priceless. So of course I made those silly faces (and noises) over and over again in hopes of another giggle. After about 6 more giggles I got a distinctive poopy face so I gave up for the time being. He smiles all of the time now, and has started smiling at himself in the mirror and at crazy crosseyed strangers too. In an effort to get him to open his hands more we have been 'helping' him hold his bottle. Now he's beginning to reach for it himself.


Our next task is to find him a couple of preschools so we can get on their perpetual waiting lists. Why is it that he's a just a few months old and we're 'late'? He's not even going to go until he's 3 or 4! On all of the sites I've been to they list that you can apply while your baby is 'in utero'. Am I the only one who thinks that's totally weird?

Fat + Happy

Miller has been a happy little man these days, except of course when he's not. I'll spare you photos of 'Mean Miller' but here are a few smiley pants pics. Maybe he's happy because he's getting so chubby? Jolly. He weighs at least 12 lbs but we don't exactly how much though. Today he is 9 weeks gestationally, or 22 weeks and three days from his actual birthdate. He's been changing a lot lately and it's so fun to see him do new things! He smiling more of course, but he's also A LOT more opinionated. He's decided he doesn't like the carseat, but he likes the car. You figure it out. He still grabs hair and t-shirts, and anything else in his path. He 'stands' Sort of. When you hold him up he locks his fat little legs out and then buckles after a couple of seconds. He doesn't love tummy time, but he's getting plenty of it. He whips his head around so quickly now at the sounds of our voices that I'm afraid he's going to give himself whiplash. He loves to be entertained, but just when you figure out what entertains him, he gets bored! Short attention span theatre. One of his favorite things to do is fall asleep 'not' watching football on dad's chest.

Since I have become a momma, I think I may have picked up a little bit a of fire...we won't call it a mean streak, more like 'no more mrs. nice momma'. Just like we were his advocates in the hospital , we are worse in the real world! Today I may have ruffled some feathers over at ECI. They were supposed to call us three weeks ago to check in on Miller. My phone ain't been ringin'. That call was also the time we would be scheduling another meeting and evaluation follow-up for two weeks later. So, that meeting should have been a week ago...follow? So last week I called and left a detailed message for our service coordinator. No call. Today I called her supervisor. The service coordinator called me back within a few minutes. Hmmm. Weird. Then she proceeded to tell me that she was just checking in and how are we doing? Ok lady, neither one of us is stupid, especially not me. We both know you just got your butt chewed, rightfully so. She offered to send me some literature so I could read up on where Miller should be. Um hello? We are definitely getting the brush off here. The rest of the details need not be mentioned, but she 's due here at 10:30 am. Don't mess with momma. Any momma.

In other news, we finally had to bite the bullet and give the boy some formula. 1-2 bottles/day. So far it seems like he's tolerating it well, but those toots are much stinkier and let's just not even talk about what is happening in those diapers. We go back to see the doc in about a week and a half I think. We'll get another weight then and a measurement [yay!]. Unfortunately, I think Miller's going to have to get some shots then too. At that point, he'll be about 6 months old and will get to go more places with momma.

At our next appt we are going to talk to Dr. Mirrop about referring us out to a private facility to monitor Miller's development and possibly get him in some type of OT/PT regimen. ECI is obviously not on the ball, probably due to the fact the Miller is doing so well. The problem with that is that often times certain delays or issues do not show up until 12 months, 18 months, or even 2 years+. So sitting around and waiting for him to not succeed is not an option for us. Every day I am reminded of the cold hard news delivered in the NICU and it's our job to do everything thing we can to shoot for the best possible outcome. My stomach just did a flip. I remember it like it was 5 minutes ago and that alone is a catalyst for us to reach for the stars. Sometimes miracles happen not just because we believe they can, but also because we help pave the way.

That about sums it up for now. Look for new photos in the next few days...

Another sigh of relief

Sorry if this is all mushed together. For the life of me, I cannot figure out the formatting in Blogger!

The past couple of weeks have been an adjustment period. Miller's sleeping and eating patterns are [inevitably] changing. He's actually eating a bit less and sleeping a bit more...but he's on his own personal schedule so we're being flexible. Last weekend he had a little tummy issue which threw us for a loop. Now of course it seems so obvious. Thankfully we have the Internet to simultaneously drive us crazy and keep us sane.

We went to the pedi on Tuesday for a sanity check and to get a weight. 11 lbs, 5oz. Perfect. He's still gaining steadily, but not so rapidly that he's going to look like the Michelin Man by his 1st birthday. He will soon be leaving the preemie growth chart for good too. Dr. Mirrop recommended a head ultrasound to check on things so we had that yesterday.

The u/s went fine and we ended up meeting a doc there that had read some of Miller's ultrasounds while he was in the hospital. I'm not sure what to think of that. If you remember, in the hospital there were conflicting opinions on those ultrasounds and ultimately we ended up only communicating with Dr. George [neurosurgeon]. We haven't spoken with Dr. George's camp on this one yet, but Dr. Mirrop called last night to tell us that the u/s looks good. There is no evidence of any new trauma, and in fact it looks like things are really healing up well in there. He did mention that there is some evidence of loss of white matter [nothing new], but no way to tell how or even if that will have any adverse affect on Miller's development, etc. We can't predict the future, but if we're judging by the past and present, I'd say Miller is in an excellent place. Once upon a time, not long ago, in a land not far away, a pretty bleak prognosis was bestowed upon us. Since that time, we have experienced miracle after miracle with Miller and we intend to keep it that way.

So here's a mini update on what Miller's been up to. He has a couple of new tricks up his sleeve. One of them being grasping. He's started in on the hair. My hair, actually. He likes the underhairs, just behind your ears, and prefers the death grip. Surely I am not going to end up with bald spots? Right? He always has a handful of shirt or dad's chest hairs and holds on for dear life. Those teeny little fingernails are SHARP and they grow so darn quickly. He'll grab fingers and do pull ups and sit ups, especially if he's hungry. And his favorite new game is 'walk me around the house until you're dizzy so I can look at everything'...he LOVES this game. He's kicking a lot too, which makes him catapult quite suddenly into various directions and occasionally results in a headbutt. I am shocked that I have not yet suffered a fat lip. He's starting to make lots of faces too and is more expressive...

Eleven is Heaven

So I am attempting to transition Miller to breastfeeding from the bottle. He's still on exclusive breastmilk which is great, but pumping and feeding is SO not ideal. I have less time to pump so of course production is down and we are running out of options fast. 11 weeks in the hospital set us up for a big challenge when it comes to breastfeeding, and I'm not sure it's going to happen for us. But I'm trying. There is an extra helping of guilt when you have a preemie I suppose. We tested the 'ship sunk and we're on a lifeboat with no pump' theory out the other day and honestly, the lifeboat almost sunk. So the latest approach is to first get my milk production up, and then try to transition more slowly. Stressing him out is just a bad idea all around. If that doesn't work, then we'll go to plan C.

I talked to a lactation consultant the other day who gave me an absolute earful about how I'm setting Miller up for a life of obesity by feeding him when he's hungry. I cannot imagine this, really. Dr. Mirrop says this is advice to ignore, at least in Miller's case. It wasn't that long ago that he dipped below 2 pounds! So I say, Eleven is Heaven. Yesterday he weighed in at 11 lbs, 1oz to be exact and his fat little tummy is so cute. I think the camera really does add 10 lbs, because in person he's not quite as tubby as he looks in his little slide show.

We had a tiny scare yesterday but it's already in the past (whew). I found what I thought to be a dime-sized amount of blood in Miller's diaper. Turns out, it was Uric Acid Crystals. The doc we saw (Griggs, Mirrop was out) told us it was nothing to worry about but I researched it on the Internet anyway. The only thing I can figure out is that it may be due to the fact that he's getting some of the early milk I pumped when he was first born (been in the deep freeze for awhile). It's much more concentrated than the milk I am producing now. It was an isolated incident so I'm not going to lose any sleep over it.

This past weekend we ventured out for another overnight trip-this time to Johnson City. One night was enough and we were home safe early Sunday. It was nice, however short, to leave the house with Miller in tow and just go somewhere else. Another couple joined us, Kate & Clint, with their little sugar pie, Susie who is just 3 weeks Miller's senior. She taught Miller how to drool this weekend, because he's been doing it ever since. Sadly, we missed out on Elle's 1st Birthday party, our first party invite ever, but we just couldn't risk it with so many toddlers. We were honored to make the list and will definitely not miss #2!

One last thing, we have recently learned that Miller's going to have several new playmates next year. First up is Baby Smith, due in about 3 weeks! We just want to say congrats to you all and we can't wait! Since not everyone has shared their news yet, we won't do it here either. Just know that we pray for each and every one of your growing bellies every day.

Love to you all

Ouick Pedi Update

We saw Dr. Mirrop today and he said Miller looks great. For starters, he weighs 10 pounds, 5oz! This is not a surprise to us, since we're the ones trying to keep up with his crazy appetite, but the ECI folks & Dr. Mirrop don't see him everyday. We've been taken off of the fortifier all together, which is good because we don't give it to him all of the time anyway. I think it makes his belly funky and he eats best when it's straight breast milk. Momma knows. The hospital said he needed it for added calcium & phosphorus, but the doc says ixnay on the oritifierfay (I can't quite remember how pig latin goes but you know what I mean). His head has grown again but in direct proportion with his weight gain, etc. Fontanelle still getting smaller, nice and soft. His height is [allegedly] 20.5 inches, but the nurse was not really stretching him out so I am rounding it up a little in my head. We had to suck it up and get FOUR shots today, but Miller was of course a total rockstar about it. He is a tough little cookie. We go back in about 3 weeks for another checkup and of course, more shots. RSV season is closing in on us so Miller will be getting monthly shots to protect his baby self from all the drama RSV season brings (a cold for you and me, a room at the Seton Hotel for Miller). So now we can focus on football season, which happens to coordinate with RSV season. That's it for now, but check back for pics and posts soon. And thanks Kristen, Josh, Elle, Lima, & Chief for leaving comments almost every time we post. I love it! For all you sneaky readers, drop us a line sometime :)

xo

At last, a gauge

So once again, we haven't posted in awhile. And for good reason. We have been totally focused on the Miller Man, and with that comes less time for other things. These days he is literally, attached at the hip.

In my constant scouring of the Internet, books, and any other possible source (i.e. the mailman-yes, he had a preemie too!), I have learned some new things about preemies and their development. One of them being 'babywearing'. Babywearing (slings, wraps, etc) is wonderful for all babies, but especially for preemies and newborns. It fosters the bond between mother and child (fathers too), creates peaceful stimulation, promotes security, aids in breathing, promotes learning (via a state of quiet alertness while trucking around with mom), and can even encourage good eating habits, being so close to the source. Point is, babywearing does not promote blogging!

Something else that is encouraged (and totally discouraged by the hospital) is cosleeping. We are not exactly practicing cosleeping, but Miller only spends about 4-5 hours a day in his own bed. Our way of practicing cosleeping is allowing him to sleep on or very near us unless we are going to sleep.

I am quite sure there are many opinions out there about this and may not all align with ours, but unless those folks had a baby an entire trimester early, they are not really able to come from a perspective that we can relate to. Here's an example: On at least a weekly basis someone asks us how old Miller is. They totally expect to hear something like '3 weeks' or '5 weeks'. However, this is what they do hear: "ummm, well, technically he's 17 weeks, 3 days. However, he his due date was 4 weeks ago today, so he's really only 1 month old. Except, he's kind of doing some things that a 2 month old might do, but not really. He'll need time to catch up--you can't speed those 13 weeks he lost in the womb up just because he decided to come out early..." and on and on and on. Yes, I know this is way too much information but I don't really know how to sum it up, and how to avoid the 'you poor dear' face. And if I say four weeks (or whatever the number is at the time) I immediately get "wow! you look great for just having a baby" and so we have the conversation anyway. It's a 'walk a mile in your shoes' kind of thing.

Another important thing I have learned (and inherently knew, but now I have it in print) is that letting him 'cry it out' is not what's best for him. It can manifest itself in insecurity, breakdown in parent-child bond, and over all stress him out-thwarting developmental progress. He needs to know that if he cries (his only form of communication at this point) I will respond to his needs. And I do.

All of that aside, we have an update on his progress. We had our ECI (Early Childhood Intervention) evaluation today with our service coordinator and an OT, and we are incredibly encouraged by their findings. As a former 26 and a half weeker with a Grade IV IVH , Miller is exceeding all expections...a constant reminder of what a true miracle he already is. At exactly one month old corrected/gestational age, and four months from his birthdate Miller is displaying the actions and skills of a baby anywhere from newborn to 3 months old. Here are a few of the notes they made and things we discussed. Some things are redundant because they are related:

VISION:Watches ceiling fan, mobile, lights. Gazes at faces. Beginning to make some eye contact.
HEARING:Passed newborn hearing screening, turns to voices, startles at loud sounds.
NUTRITION:Feeding well and gaining weight (update on weight tomorrow after pedi appt, but somewhere in the neighborhood of 10 lbs). Drinks from bottle well (not so good at the breastfeeding, but he's still on exclusive breastmilk).
FINE MOTOR: Opening & relaxing hands. Tracking faces, objects slowly. Moving arms well, and in a random manor. Appears to have good range of motion . Lifts and moves his head.
GROSS MOTOR:Kicking and moving arms quite a bit. Will push up and move head to look around when on tummy. At this time, tone appears to be within typical range. (This is SO HUGE since kids w/ CP typically have high tone or sometimes low tone...no guarantees about the future, but this is great news right now).
COGNITIVE: Listening to voices, reacting, watching mobile when in crib
EXPRESSIVE COMMUNICATION: Cries when hungry or uncomfortable. Beginning to grunt and whine.
RECEPTIVE COMMUNICATION: Watching peoples' mouths and eyes, turns towards the sound of voices of parents.
SOCIAL/EMOTIONAL SKILLS: Very alert and aware of surroundings, gazing at people and watching their mouths as they speak.


We have a lot to be grateful for and we are very careful not to forget this. We are getting a little bit more sleep and moving around more. Little by little we are becoming human again. We made a trip to Kerrville a couple of weeks ago and Dad got to fish with his little bro's. Mom had a pedicure (praise the Lord) just yesterday and is looking forward to a massage in the near future. The dogs are doing great too, but they probably need a tiny bit more exercise. Miller is eating and gaining weight like a champ, and really just acting like a baby. Life is good. I PROMISE to update tomorrow or this weekend on our pedi appt tomorrow. Look for new photos this weekend too.

Love to you all-
The Peeps'
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Today is Wednesday, a week and a half since we last posted. If nothing new is happening, then nothing new is happening! So I waited. And honestly, we are just exhausted right now. Happy and tired. If either one of us closes our eyes for too long (say, 20 seconds or so) we are knocked out. This too shall pass (too quickly I am sure), and we will not wish away one miraculous moment of it.

So here's what's been up with us:

Yesterday we saw Dr. Mirrop, another checkup. He says Miller looks great and is moving from the 25th percentile to the cusp of 50th/75th on weight. Which by the way, is a whopping 8lbs, 12 oz! I call him my hungry little bunny, which I am quite sure that Danny doesn't appreciate. I'm wondering if Danny is slipping some creatine in his expressed breast milk?? His head is growing too, but so far at a normal pace when coupled with his weight gain. His fontanelle (soft spot) is getting smaller too. Also a positive sign. We will continue to monitor these things very very closely, as the threat of Hydrocephalus is not as far off as we would like.

On Tuesday we went to the eye doctor. For the third time since Miller has been home, he had his little baby eyeballs dilated and then examined (poked). He was such a little champ! What a good -natured little dude. And the doc says his eyes are mature and the threat of ROP should be water under the bridge at this point. They don't want to see us for six months which is always a good sign.

Miller's former primary nurse (Beth) came by to see us on Tuesday as well. It was so nice to see her, although Miller was sacked out the entire time. Of course he was wide wake the moment she left. That just means she'll have to come back soon.

This weekend we are going on our first trip with Miller- to see his Great Grammaw, Miss Lula. We have been keeping him under lock & key, but we have decided to make a trip down to Kerrville. It will be so nice to see her, and it will still be a safe environment for the little one.

Lately we have noticed what worry warts we have become. Not so much about Miller (although we do still worry about him), but about each other...this entire experience has brought more weight to the simplest of things. Nothing is taken for granted, a gift that is fleeting I am sure.

We'll post updates more often, about once a week. No news is good news as they say! Tonight we'd like to request that you please say a prayer for baby Miller DeLorenzo. His Momma, Dana, is having surgery in an effort to keep him in the belly as long as possible. www.miraclemiller.blogspot.com

Love to you all,

Danny, Stephanie, & Miller Lee

It's Sunday morning and the NICU feels like it's a distant memory. It's very hard for us to feel that way (and especially talk that way) for fear of being readmitted for something we didn't anticipate. But for now, Miller is doing all of those things everybody told us he would...keeping us awake all night, making us laugh, and keeping the trash can full of dirty diapers.

He had a great visit with Dr. Mirrop (Pedi) on Friday. He tipped scales at 7 lbs 14 ozs 1 day after his expected due date. That weight is well within the expected limits and his head size is perfectly normal (which we'll watch very closely-there's still a very small chance he could develop hydrocephalus). According to the benchmarks, Miller's a bit short. He's about 19 inches long. However, that's a very inconsistent measurement and it's really no indicator of how tall or short he'll become.

Miller exhibits all of the behavior you might expect from a newborn. He's starting to make eye contact on a regular basis and he tracks objects well. At this point, there doesn't seem to be any deficiency on either side of his body in any capacity. Dr. George, the Neurosurgeon, told us Miller might encounter some weakness on his right side because of the location of his bleed, but we haven't seen anything yet. We won't know the full extent of his challenges for many months, but for now, he's acting just like any brand new little baby. He lifts his head up to look around and his grip is deadly. We laugh all day at the way he dive bombs into our chest when he's hungry. It's like there's a cheeseburger is your shirt and he roots around like crazy trying to get to it.

Changing gears here for a second...we learned yesterday of another little boy named Miller. His momma is currently in the labor and delivery unit at Seton. She was expecting twin boys, and at 19 weeks she lost Lawton. The other twin, Miller, is hanging in there and we're all praying he can tough it out for another 5 weeks. Matt and Dana, his parents, are very strong and well equipped for this journey. Here's a link to their blog http://miraclemiller.blogspot.com/.

Please make room in your thoughts and prayers for "Miracle Miller". His battle has just begun.

Love,

Danny & Stephanie

Today makes two weeks. The NICU seems like it was a million years ago and Miller seems to be doing so much better now that he's home. He has really changed in the last two weeks. He's not so fragile. He's off of his oxygen (yay!). And he is eating so much. Tonight he woke up an hour and fifteen minutes early and basically worked himself into hysterics. I was taking his temperature, feeding him Mylicon, shhhhing and bouncing, singing, I changed his diaper. Everything I could think of. I finally decided to try feeding him early and that did the trick. Funny thing is, he is eating about 50-60% more than he was just two weeks ago. I was moments away from that late night call to the pedi.

Misa + Moli come home from camp today and I can't wait. I have missed them terribly. I can't wait to introduce them to the new sheriff in town. I want to rub their velvet bellies and tell them they're still my girls. They have been at the Austin Pet Ranch for two and a half weeks. I LOVE the APR!! They have daycare and boarding and they are fabulous. Whenever I call to check on the pups they can spout off a dozen different tidbits, which tells me that they are actually taking care of them. It's the best place we have ever boarded them.

So everyone keeps asking how we're doing. If we're tired? Are we getting any rest? Are we happy he's home? Is it what we expected? So here are your answers. We are ecstatic. We wake up every morning to our little miracle baby. Do we dare complain? Yes we're tired, totally exhausted to be more precise. Not getting much rest at all, but who cares? Nothing lasts forever and this too, shall pass. Probably too quickly. Life is short. And these late night moments with him asleep on my chest will be gone too quickly. Someday soon he won't even want me to hold him. He'll writhe and wriggle until I put him down. He'll stop calling me 'momma'. He'll want to do 'it' himself. He'll need his independence. My heart is already breaking. So a little sleep deprivation and puffy eyes never killed anyone. A shower would be nice though.

It's just after 3 am and Miller is resting peacefully on my chest. I hate to put him down right after he eats since he has reflux, and then I hate to wake him...so I end up holding him for a long, long time. You can't spoil a baby, especially one who spent the first 11 weeks of his life in the NICU away from his momma. Although, I am certainly trying. Yesterday he hit the 12 week mark and next Thursday he will be full term. I'm amazed at how fast and how slow it went by and how we made it through when at times I was sure it would break me.

We have each other. We have prayer. And we have a ton of support. Real support. Not just 'call me if you need anything' support. It has been surprising, and essential. Almost none of our relationships have remained unchanged, a wonderful byproduct of a harrowing experience.

Dad is sound asleep since he's on in just 2 hours at 5 am. I love watching both of them sleep. During these late night feedings I am left alone with my thoughts and I can't remember what it was that I was doing before I met my husband and before Miller made his grand entrance. I feel the weight of it when I wake up with a start and quickly check his breathing, apnea monitor or not. He smells good. Sweet oil (and sometimes sour milk). Except for his toes...they smell exactly like sour apples, which he clearly did not get from me.

He is a peaceful baby. He lets us know when he's uncomfortable, usually reflux or gas related. But mostly he is muy contento. When he's upset I sing to him. I make up new words to the tunes of traditional lullabies, and sometimes turn rap songs into Miller songs, changing the words to fit him. I marvel at how natural this feels, how easy it is to comfort him. And how wonderful it is that it is me he needs (dad too, but this is my post).


Today we have a break from the doctor appts. We saw the neurosurgeon yesterday and we go back to the pedi tomorrow. So far, all of the doctors are returning good news which is a relief. We don't go back to see the neurosurgeon for six months. What? Is that possible? Maybe. We will continue to pray, pray, pray, and we will start whatever therapy, early intervention, etc as soon as we can. We'll never know what challenges he'll face until he faces them, so we'll do everything in our power to give him a leg up in the meantime.


What I have learned so far is that there is no perfect. No perfect pregnancy. No perfect birth. No perfect C-section, or hospital stay. It is what it is as they say. They also say everything happens for a reason. Which believe me, you do not want to hear when your 2 pounder is holed up in the NICU due to some unidentified, unknown, unexplained infection that caused your water to break and is 'not your fault'. So you turn to your faith, which now has an entirely new meaning now that you really need it. And what you end up with is somehow perfect for you.

The papparazzi in me has taken over-look for new photos very soon...

Love to you all,

Momma + Miller Lee

Today, Dad bought stock in Energizer and Duracell. Like most parents, we have enough stored energy to stockpile a bomb shelter. And like most parents, we are officially crazy people. Let's review the evidence:

1. Sleep deprivation is taking its toll. Dad looks like he's been camping and if Mom got pulled over she'd surely be over the legal Red Bull limit.

2. We watch the Miller Channel all day long. Technology has given us the iPhone, but it's also given us the ability to watch our kids all day via remote camera which will inevitably lead to some form of OCD.

See people's exhibit 1.

3. We've already called the pediatrician's after hours pager in a state of mild panic. Miller's left foot looked a little swollen and we weren't taking any chances. The doctor thinks the swelling is the result of our bundling him too tightly and possibly scrunching his legs up beneath him when we hold him. The swelling seems to have dissipated, but we'll surely revisit it tomorrow at the Pedi's office anyway.

4. Our house is all of a sudden too small. We've been searching the Internet for a nice, 4 bedroom model so we can have the required 3 rooms for Miller and his stuff.

5. Dad has perfected the art of the dump, rinse, soap, rinse,rinse, rinse, steam, dry. We don't have a dishwasher right now, a monumental goof.

What an adventure. And we're just getting started. Thanks for all of your continued love and support.

More meaningful Miller Lee updates to come...

Love,

Danny, Stephanie, & Miller Lee

We're at the finish line. Literally. Just in time too. Yesterday we spent the night at the hospital, our trial run. Aside from the room we stayed in (yucky), things were perfect! It was so nice to just hold him for as long as we wanted, in our jammies, with no nurses/doctors/other parents/ringing phones, etc. Miller is on a pretty solid schedule, however it leaves little room for rest. We know this already--we're just about back to square one, similar to coming home with a newborn.



For the time being, Miller will be on a tiny bit of oxygen at home. Fine. He just barely needs it, if at all, and will likely be off of it in a few weeks. The theory is that it helps him to recover quicker from reflux-related desats, and also prevents him from dipping too low if/when he has reflux-related heart rate drops. It is a tiny boost while we wait for his reflux medicine to really kick in. The folks in the NICU decided to send us home with an apnea monitor too, which is a bit of a catch-22. It will definitely give us a little peace of mind, but since we have trained ourselves not to pay attention to the monitors (and to look at Miller instead), it may become a crutch.



We are completely ready for him to come home. Today we have been napping and doing laundry, last minute prep for Miller's arrival. We will miss the NICU in some ways (really), but we can't wait to leave the stress of it behind. We have definitely formed bonds with some of the nurses (naturally) and have threatened stalking if they don't keep in touch! For 10 weeks and 5 days we have spent countless hours in the NICU, learning, laughing, crying. Celebrating milestones, fearing the unknown, praying for Miller's health. We have spent this time, vulnerable and helpless, slowly transforming into educated and empowered, with these folks. Because of these folks. We are so grateful for everything they (NICU staff) have done for Miller and for us, and could never really articulate it. There are definitely angels among us.


Wish us luck tomorrow! And, thank you all for each and every prayer.


Much love,


Danny, Stephanie & Miller Lee

Let's start with the big news....Miller is BIG! He weighs 5 lbs. 13 oz. He's turning into such a little oinker! 4 more ounces and he will be TRIPLE his birth weight. Maybe he will grow up to be a competitive eater. Like the guy who travels around entering hot wing eating contests. Or hot dogs.

In the NICU you just have to accept that Plan B (or C or D) is possible, even probable. We are on to Plan B. Miller is still doing very well, but we're giving him just a few extra days for observation, etc. We swapped tonight's sleepover for Friday and we'll be bringing him home on Sunday!

Yesterday, Miller had two big tests and he passed both with flying colors!
The first, a Barium Swallow, was the scary one. It's a test where he swallows tiny amounts of Barium in his milk so it will show up on x-ray. When his reflux kicks in, they can observe what happens. In Miller's case, we needed to know if his reflux is causing him to aspirate into his lungs and to observe his suck-swallow-breathe coordination. Aspirating is very dangerous for little ones and can lead to pneumonia...and a trip back to the NICU. The good news is, he's not aspirating and we are one step closer to going home.

Test #2 was much easier-it was his car seat study. They stick him in his car seat for about an hour and a half and just observe. No touching! We're not sure why some car seats don't pass the NICU test, but at this point we're just glad ours did.
We'll spend the next few days last-minute-prepping for his arrival. Friday can't get here fast enough. Misa + Moli are going to camp for a few weeks at a Doggie Ranch in Driftwood while we begin adjusting to life with a newborn.

We hope everyone has a safe and happy 4th of July. Watch some fireworks, sing some Lee Greenwood, shed some happy tears... Also, we want to give a shout out to Miss Maria--Happy 30th birthday!!!

Much love to you all,
Danny & Stephanie

p.s. No, the blog does not end when Miller comes home. We just shift our focus to chapter 2!

The results of the PCG are in and the doctors have confirmed Miller's reflux. It's not an unexpected development and we are satisfied to know that his occasional bradycardia and desaturation can be attributed to this very treatable condition. As such, Miller started his reflux meds today and we hope to see some improvement sometime this week.

They've also put him back on his nasal canulla. Mom wasn't real thrilled about this move, but the doctors want to provide Miller with some consistent airflow while his reflux medication takes effect.

The good news is that Miller continues to scarf down his bottles and put on weight. As of today, he's 5 lbs 6 ozs. He's taking about 70 cc's of milk every three hours but if we're a little late with his bottle everything is fair game. So far, Miller has tried to eat his hands, his hat, his canulla, his blanket, Mom's arm, and Dad's nose.

As for our time in the NICU, we think we're in the home stretch. We have a "room in" appointment for Tuesday and we hope to keep it. This means Miller could possibly come home on Thursday. We're keeping our fingers crossed.

Thanks for all of your thoughts and prayers.

Love,
Danny & Stephanie

So here's a little update on Miller Lee...

Yesterday was pretty tough on the little guy. He was really tired and didn't attack his bottle like he normally does. Miller usually takes it in about 10 minutes and we have to slow him down. Yesterday, it took him about 30 minutes on a couple of occasions. He also had a few spells of apnea and bradycardia. In addition, last night he spit up a little more than usual.

This makes for a stressful day at the NICU, but we think all of the above can be attributed to fatigue. Over the course of the last several days, Miller has been subjected to the following:

1. Eye test
2. Hearing test
3. Cranial ultrasound
4. Removal of cannula ( they took him off of oxygen and air flow completely on Monday )
5. Circumcision
6. PCG test ( they hook him up to another machine for 24 hours )

We think he's just tired. There's a chance he's suffering from a little reflux, too. If so, the PCG will tell us and we can deal with it.

The nurses are giving him a break today. Miller will not have to endure any procedures and they've even given him his cannula back so he can recover.

The good news is he continues to put on weight. Miller's over 5 pounds now and gaining consistenly. Hopefully, he's able to contiunue his progress from here.

As always, thanks for all of your love and support.

Love,
Danny & Stephanie

Friday was a big day for the little one. He had a cranial ultrasound, a hearing test, and another eye exam. None of these are a trip to the zoo, but the eye exam is the yucky one. We hear he 'passed' his hearing test, but we do not have any formal results on it or the other two tests. We are not terribly worried since we haven't heard from Dr. George (and he only contacts us if there are any changes), and since he has already had an eye exam that showed no major issues.

So far, it doesn't seem like Miller is missing his caffeine much, which is great. We were warned that he may tire out easily and not eat as vigorously. Not a problem for Miller. Like we said, he is a piglet. In fact, he weighs 4 lbs, 15.8oz! The nurses have been telling us that he is doing very well with his feeds, much better than they expect at his gestational age.

At home, we are just about ready for Miller's arrival, which could be as early as ten to fourteen days from now. We are still trying not to get our hopes up but that is almost impossible. Remember, his actual due date is July 26th, so that's the date they tell you he should come home. Dad put his crib together today and refrained from using any four-letter words. We hear this is a feat in itself. He did use the word 'jank' a couple of times, but I don't think that counts.

On Friday Momma picked up his stroller, which his Nonnie & Papa bought for him. Yay! It's pretty snazzy and new to the States, so he will be the envy of all the other babes.

His Grammaw and his Aunties bought his original stroller for him but his Momma is indecisive...long story short, the original stroller became a carseat instead!

That's all for now. We hope everyone is having a safe and happy weekend!

Love to you all,

Danny & Stephanie

Miller's growing. He's up to 4 lbs, 13 oz. He's taking all of his feeds on his own (8 per day) and has been since the 15th. Supposedly, this is somewhat surprising for his gestational age (34 weeks, 5 days). Tonight he was very alert and even had some smiles for us. We caught at least one smile on video (above)...right at the end.

We don't want to jinx anything, but it's possible that Miller could come home earlier than we thought. He's eating, breathing, growing, maintaining temp...just needs a little boost of oxygen here and there. We're a little nervous for him to come home early, since they may send him home with oxygen and a monitor. We may never sleep again. We'll see what happens this next week!

As always, we love your comments & emails, and give thanks for all of your prayers.

Love,

Danny & Stephanie

Miller had a great weekend! At last report, he weighed 4 lbs 10.5 ozs! He's now taking all of his feedings by bottle; 42 cc's of milk every three hours and he really gets after it. In fact, we have to make a conscious effort to slow him down at times. He is such a little piglet.

We're interested to see how Miller reacts without his little shot of caffeine. He was supposed to get his last dose a couple of days ago, but they extended it through yesterday. In a way, he has been weaning himself off of it just by growing. He has more than doubled since birth, but his caffeine dose has been the same. He's doing so much of his own work right now (breathing, eating). He'll probably be a little groggy for the next few days and may not eat as vigorously until he adjusts. We just hope he can continue to take the bottle so we don't have to reinsert his feeding tube.

He is also down to a one-liter flow on his cannula. This won't mean much to anyone, but up until yesterday he was on a two-liter flow. This really just means he's one step closer to losing that thing for good! In the photo above he is cannula and gavage free!

Davika, one of our All Star Nurses, is going on vacation for the next couple of weeks. We're really going to miss her, but her break is well deserved. She's not going to recognize him when she returns. If only we could get Beth (his day primary) to work round the clock. He always seems to be doing great when she is there and it is easy to relax on her watch.

Special thanks to Uncle Bob for the ESPN Magazine subscription!

Love,
Danny & Stephanie

The Miller Bear is doing well and we are so very encouraged by his recent progress. He seems much more robust and alert than just a couple of weeks ago. And robust he is at 4 lbs., 8.4 oz! We have been bracing ourselves for the weight train to slow down, but homeboy is puttin' on some L-B's! He is now alternating his feedings between the bottle and gavage, and taking his feedings well. This is tuckering him out a bit, but we expect it to. Like we mentioned in another post, we are asking him to do a lot of things right now. This is a picture of Dad helping him muster up a good belch. He rivals Al Bundy, all the Peoples boys, and his very talented Momma when it comes to this...

Tomorrow he will receive his first immunizations. One of the shots will most likely cause a fever, so he is likely to feel a little bit yucky. We have gone back and forth worrying about immunizations and finally decided to go ahead and begin them. We are likely to spread out the ones we can in future.

Another milestone for Miller today...no more caffeine! Today was his last dose. We are hoping he won't skip a beat, but we are prepared for his oxygen needs to go up again for a bit. The caffeine will stay in his system for a number of days, so its effects will dwindle slowly. We are hoping he adapts quickly without much ado. He has been hovering around 21% (room air!) on his oxygen for a few days, so that's where we want to stay. If he can stay around 21% he will come off his cannula and leave oxygen, and that thing that tickles his nose, in the past.

Happy Father's Day to all the Daddies out there! Have a wonderful and blessed weekend.

Love,

Danny & Stephanie

Miller is 7 weeks old today!!! Woo Hoo!!! On Thursday, he will be 34 weeks gestational age. Meaning, he should still be in the belly for 6 1/2 more weeks! He is getting bigger and stronger every day and hopefully he will be able to come home soon. First, he has to prove he can do a few things. He has to be breathing on his own (we're getting there). His oxygen needs have risen a tad bit since he came off of the CPAP, but this is expected. He has to be growing, eating, and maintaining his temp as well. He's definitely growing and maintaining his temperature, and eating is next. His lungs will catch up soon, it's just a matter of maturity. At the moment, we are very encouraged by his recent progress and thank God for every blessing!

Grandma Peoples made some cute baskets for

Miller's laundry. He gets to wear jammies now since his bed is no longer heated-he's a big boy now. Speaking of that, he's 4 lbs, 2.8 oz! He's been gaining weight on a pretty consistent basis for the last couple of weeks but this may slow down because we're asking him to do a lot more these days.

Today, momma fed him his first bottle and he was a natural! It will take awhile before he's taking all of his feedings by bottle or breast, but this is a great big step. He'll still take most of his feedings by gavage for the time being.

Here's his big boy bed. It's draped to protect his eyes from the sun. He has a cute new mobile too, that plays Beethoven, Bach, and somebody else important. We think he likes the music, but he hasn't been sleeping directly on his back (so he probably isn't looking at it). Right now, he's sleeping in his boppy (inside his crib) in order to combat his reflux. He still hasn't been officially diagnosed with reflux, but the nurses seem to think that's what we're dealing with. If that's the case, we hope they'll treat him for it soon.

Mom & Dad are still holding up. We've found a routine that seems to be working, at least until he comes home. We are busy getting his nursery ready (not that he'll be sleeping in it right when he comes home)! Mom spends 5-6 hours a day in the NICU with the new love of her life (in between pumping). Dad is busy bringing home the bacon, but he still gets in 2-3 hours each evening with the Miller Bear. We are counting the days until he is ours, 24/7.

Love to you all-


Danny & Stephanie

Things seem to be changing at a faster pace for Miller these days. Weighing in at 4.01 lbs, he's already growing out of some of the preemie clothes we just bought for him (and had him wearing) the other day. The incredible baby hulk. He has basically doubled in size in 7 1/2 weeks!

Yesterday Miller spent the afternoon on his cannula between 21 & 24 percent. 21 percent is actually room air, but the air pressure keeps his airway open & is a gentle reminder to breathe. His primary nurse, Beth, recommended that he stay off of his CPAP for good and stick to cannula 24/7. He is currently doing this on a trial basis. So far, he's doing well.

Because of his recent progress along with his age and weight (33 weeks gestation today), the inevitable happened. Last night, he moved to a big boy crib. We really didn't want this just yet-we just prefer that he have some peace & quiet a tad bit longer. Beth did do everything she could to make him comfy and make us comfortable with the idea. Mom doesn't like the look of it though, it's sort of retro-orphanage-y. Mostly she doesn't like the fact that there's no way to completely darken or quiet his little island anymore.

Each time we go to kangaroo now, we start with a bit of 'nuzzling'. This is what the nurses call it. We call it 'sticking him on'. He DEFINITELY knows what to do and is a great little chomper, but he tends to fall asleep pretty quickly. He breathes really deeply during these times and becomes very relaxed. He looks as if he's getting a great massage! We are not relying on this for any nourishment, just getting him used to it. We try our best to nuzzle at the same time he begins a gavage (feeding tube) feeding, so he will associate it with a happy, full belly.

We'll post some new pics in the next day or so! Hope everyone has a safe & happy weekend.

Love,

Danny & Stephanie

According to the nurses, 32 weeks is around the time when we should see Miller start to progress at a more rapid pace. We think he's off to a good start. Miller's up to 3 lbs 14 ounces as of this morning and he's spending 8 hours at a time on his nasal cannula. His feedings have increased to 37 cc's every three hours and he gets after his pacifier like crazy.

Mom has been trying to introduce Miller to the boob. He's been very responsive and we think that's a good sign. He won't be able to actually nourish himself that way for a while, but we want him to get a feel for it.

We've had a little bit of an issue with the NICU regarding Miller's isolette/crib situation. There's a faction of the NICU that believes a move to an open crib is reasonable for Miller at this time. He can probably regulate his own temperature now and their normal protocol calls for the move at 1800 grams. Miller is at 1770. We believe it's still too early. If he were still in the womb where he belongs, he would have the peace and quiet he needs to grow. We also believe that part of the incentive to move him is driven by a shortage of clean isolettes in the NICU. As such, we have formally requested that Miller stay in his current isolette for now and that any pending move be discussed with us (dad wrote a letter).

All told, we are very happy with the progress Miller has made in the last several days. We'll continue to keep you updated. As always, your thoughts and prayers are greatly appreciated.

Love,

Danny & Stephanie

MRI Results

Dr. George called about 15 minutes ago to share his interpretation of Miller's MRI results. Here's what he found:

1. There is no sign of a structural abnormality.

2. There is no sign of a tumor.

3. He also said there was no sign of Hydrocephalus and the chance of him developing that condition was small.

It is still not clear what caused the bleed in the first place (probably just plain prematurity), but the significant news is that we've been able to rule out the issues that would require some form of intervention (spinal tap, shunt, surgery, etc).

For now, Dr. George says Miller will follow a normal clinical path for a baby his size. We'll continue the Friday ultrasounds (like many of the babies). There's currently no cause to prescribe another MRI. In Dr. George's words, "it looks like a one shot deal". There was a bleed, and of course, some level of injury. But we're hoping that Miller can put it behind him and go forward from here.

Should something unexpected develop, we should be able to see it on the ultrasound and Dr. George will address it at that time. But for now, Miller's job is to keep eating, growing, breathing, and kangarooing.

What the future holds for Miller is still uncertain, and will be for many, many months. As mentioned above, we cannot undo the fact that there was indeed a grade IV bleed and the possible challenges that are associated with it. What we do know is that much of Miller's progress depends on his care, and we have that covered. Much of it will depend on his will (all Peoples kids are stubborn as an ox) and we think we have that covered. The rest of it will depend on faith and prayer. With all of of your help, we believe we have that covered too.

Continued thanks to each and every one of you for keeping Miller in your daily prayers, adding him to your church prayer lists, and for checking in on his parents!

Love to you all,

Danny & Stephanie

Test Updates

Miller actually had 2 tests today. They didn't tell us until this morning that he'd have an eye test, but he did. When mom arrived this afternoon his eyes were dilated and he was a little restless and cranky. His eye test was performed around 2:30. It was a test for ROP which stands for Retinopathy of Prematurity (ROP occurs when abnormal blood vessels grow and spread throughout the retina, the tissue that lines the back of the eye. These abnormal blood vessels are fragile and can leak, scarring the retina and pulling it out of position. This causes a retinal detachment. Retinal detachment is the main cause of visual impairment and blindness in ROP). You can see a more detailed description of ROP & its causes and treatments here: http://www.nei.nih.gov/health/rop/index.asp#2 . Fortunately, Miller passed his test with flying colors. He will have another ROP test before he goes home which is standard procedure in the NICU.

He also had his MRI this afternoon around 5:30 pm. Apparently, he was a bit of a rascal so he ended up with a 2nd dose of the sedative, Chloral Hydrate. He did not need to be reintubated though, which is great. We should get the results from Dr. George sometime tomorrow (Saturday).

With all of the excitement, Miller was totally pooped. As a result, we did not kangaroo tonight so he could rest up. He should be bright-eyed and bushy-tailed tomorrow morning. We are hoping, praying, and crossing our fingers and toes that the results are positive.

We'll update the blog when we have our results. Hope you all have a nice weekend!

Love,

Danny & Stephanie

Fridays are test days and we have a new one this morning. The Neurosurgeon, Dr. George, requested an MRI on Miller's head. We discussed this a couple of weeks ago and Dr. George agreed to hold off on the MRI until Miller got a little bigger. As of today, he weighs a whopping 3lbs, 7oz! At this point, everyone seems to agree that the risks associated with the scan are minimal. Miller's bleed was very unique and Dr. George wants to know why.

Our biggest concern is how well Miller will tolerate all of the ancillary procedures that accompany an MRI on such a small child. It's not just the scan. First, they'll have to move him to the MRI facility (fortunately, there's one in Seton). He'll be given a mild sedative and will hopefully stay on his nasal cannula. Sometimes, these little guys need to be reintubated (breathing tube). We don't want that because it increases his risk for a respiratory infection. In fact, in our negotiations (that's what it felt like), we agreed to call off the scan if Miller had any adverse reactions to the sedative.

The other issue was risk vs benefit. What exactly do we hope to accomplish with this scan? Will it change his immediate treatment?
Dr. George hopes to learn the following:

1. What caused the bleed in the first place? Was it just prematurity or is there some structural abnormality?
2. Is there a chance it could happen again?
3. Is there any cause for immediate intervention?

The regular Friday ultrasounds have not indicated a situation where Miller needs a procedure. The ultrasounds can tell us what is there, but they can't tell us how it got there. This is what Dr. George hopes to learn so we know if we need to fix something.

The MRI will take place this morning but the results probably won't be available until tomorrow or Monday. It should be noted that every baby in the NICU gets an MRI before he goes home, so this is a very normal procedure.

As for Miller, he's doing great. He's very alert and active. He loves his Kangaroo time and the pacifier game he plays with his daddy when he's in the isolette. This might sound a bit surprising, but last night Miller nursed. It's the truth. Just before we gave him his normal feeding through the tube, Mom whipped out and let him have a go at it. We've been practicing with him for a few days and trying to encourage his "rooting" instinct with the pacifier. Last night Miller latched on for an appetizer. It was very brief, maybe a total of 20 minutes. When he finished, the nurse used a syringe to extract the milk he consumed from his tummy and measure it. He got about 2 cc's. 'Atta boy!

Please keep the prayers coming, and thank you all for the continuous support.

Love,
Danny & Stephanie

Miller had a great Memorial Day weekend!

We don't want to jinx anything, but it looks like he's turning a corner on this whole breathing thing. He's still on the CPAP, but has been doing great since they reduced his air pressure a couple of days ago. He's been maxing out on his oxygen saturation all weekend too. Basically this means that he's breathing, and he's breathing deeply.

We didn't spend Memorial Day at the lake this year. However, we did get to give the Miller Bear a bath (video posted above) and it was the perfect way to spend our afternoon. It was our first time, so we were a little nervous but as with all things, practice makes perfect.

Dad got to kangaroo twice this weekend, so momma played paparazzi. She caught Miller showing his team spirit for the home team. Must be because his uncle Nick came by to visit him today (Nick is a senior at UT and plays baseball for the Horns). Looks like we have a Little Longhorn!

Miller's weight gain seems to be back on track. As of yesterday he weighed 3lbs., 4oz. Or in Beth's (his day primary nurse) words, he's huge! To ensure that his gain is steady, his nurses have asked that momma bring in only hindmilk for now-which they are continuing to fortify with a few extra calories as well. Hindmilk has the highest concentration of fat and is released after several minutes of nursing/pumping.

We hope you all had a nice relaxing holiday weekend. Thanks for checking in on our little guy! We cannot thank you all enough for your ongoing support and prayers. Keep those prayers coming-they are so powerful!

Love,

Danny & Stephanie

Miller was big enough for his first chest x-ray today. A byproduct of the oxygen delivered by the CPAP and cannula is moisture. As we all know, moisture is a breeding ground for bacteria and we have to keep a close eye on Miller's lungs. Fortunately, his chest x-ray results gave no indication of abnormality and the doctors have reduced his air pressure. This means he will work a little harder to get his breaths and oxygenate his blood, but it's important for his development.

He also had his regular cranial ultrasound on Friday. We still haven't heard anything from the doctors all day and assume it is because there is nothing significant to report. We've left instructions with the NICU that all meaningful ultrasound results are to be delivered by Dr. George, the pediatric neurosurgeon. We have yet to speak to Dr. George, so the scan must not have revealed anything that we need to be immediately concerned about.

For right now, Miller is doing everything we are asking him to do. He's tolerating his meals, reacting to stimulation, kangarooing like a champ, and breathing normally for this stage of his development. There are a million things that could trip him up, but we're hopeful that he continues his progress.

There was one thing that caught our attention this morning. An article in the Statesman related a story about a nurse in the Seton mother-baby unit that possibly contracted whooping cough. She works on the 2nd floor ( the NICU is on 8 ) and the article identified the time period between May 5th and last Friday as the time when she could have interacted with newborns and their parents. She's not a NICU nurse, but it's possible she's been in contact with NICU nurses. As a result, there are about 7 second floor nurses on leave (and on antibiotics just in case). It's a little scary, but the NICU is confident that the 8th floor was not compromised.
It's something we'll continue to monitor.

Miller got some daddy time this morning. He had a relaxing snooze on his daddy's chest. Mom likes to sing, but Dad can't carry a tune in a bucket. So, Dad just likes to tell him stories about his great grampaw Lee (his namesake). Miller learned about all of the vegetables in his great grampaw's gardens today. Who knows...Miller may grow up with a green thumb, too!

As always, thanks so much for all of your thoughts and prayers.

Love,
Danny & Stephanie

We haven't officially heard any news from Dr. George on Miller's latest scan. We take this to mean there is no real news. The doc on duty stopped by to interpret the radiologist's notes tonight while we were hangin' with the Baby Roo, and he told us a bunch of nothing. We're fine with that. As we mentioned before, we really only want to speak with Dr. George (the neurosurgeon) if anything changes.

Miller had a great day and a great evening. In all, we had almost 3 hours of kangaroo time today. He's getting used to our little routine and is settling in pretty quickly. The trick is to get him after he drops a bomb, because once he does, he's cranky until he's so fresh and so clean. We have a theory that he sometimes desats because he's holding his breath so he doesn't have to smell it. The problem is, he is most relaxed when we kangaroo. His favorite thing is when momma rocks and sings--it calms him down very quickly. We'll let you know when the album drops. Look for the hit single 'Miller Had a Little Lamb'...

*Someone sent us a book titled: PREEMIES: The Essential Guide for Parents of Premature Babies . However, there was no note so we do not know who to thank! So, if it was you, thank you very much & please let us know! **Disclaimer: If you told us that you were sending it, just keep a few things in mind. 1) We have left the keys in the front door overnight three times in the last three weeks. 2) We left a casserole in the oven for 3 days straight. 3) We forgot that we put a box of cookies in the oven to keep them from the dogs and then turned the oven on to preheat it for another casserole. These are just a few examples of why we can't be trusted to remember ANYTHING, so please forgive :).

We hope you all have a safe and happy holiday weekend!

Love,

Danny & Stephanie

We love the nurses. We really do. They're all very well trained and highly qualified. Most of them have some level of emotional attachment to the babies in the NICU. They change diapers, talk to the babies, and try to comfort them as much they can.

But, we seem to meet at least one or two new nurses every week. In the 4+ weeks that Miller's been in the NICU, He's probably had 15 different nurses. Again, they're all very capable. But each baby has his own quirks. For example, most of the kids in the NICU don't mind a dirty diaper (or so the nurses tell us). Miller can't stand it. He'll squirm and whine and even "Desat"(desaturation, drop in oxygen) if he needs to be changed. He's also a big fan of good poop and works pretty hard to accomplish that, resulting in some lower oxygen levels. We know this about him. We also know that it usually takes him a few minutes to adjust to the cannula from the CPAP and that he really likes to rest on his belly. Unfortunately, because the nurses change so much, he's consistently subjected to new interpretations of his body language, etc. It's fairly frustrating. There are times when, while kangarooing for example, he'll act up and a new nurse will respond by telling us we should put him back in his isolette. In reality, he's probably just hot and we need to take one of the blankets off.

Yesterday was a tough day because Mom didn't get to Kangaroo in the afternoon. Miller's oxygen saturation was a little low (according to another new nurse) and his color wasn't where she wanted it to be. We probably could have pushed the issue, but we decided to give Miller a break in the hopes that he would continue to rest peacefully and be ready for a good session today.

All told, we really wish we could have some form of continuous care. We've identified primary nurses, but sometimes their schedules conflict or they're needed on a special assignment.

We'll see how it goes today.
Thanks for checking in on us and thanks for the prayers!

Love,
Danny & Stephanie

At last we reach 3 lbs!

With the weight gain and maturity we are also seeing much more of those baby blues. Miller seems to be more alert every day. He often looks around and responds to the sounds of mom & dad's voices along with the multitude of bells and whistles in the NICU. Mom caught him crossing his eyes yesterday and panicked (yeow!), but the nurses say this is normal and even term babies do it.

Yesterday, one of the nurse practitioners approached mom about Miller's first vaccine-Hepatitis B. With all of the hype about vaccines and Austism these days, we are a little apprehensive about giving our three-pounder a shot so soon. There's a lot of information out there but the trick is in finding current information.

Gestationally, Miller is 31 weeks. This means that in the next couple of weeks he will get to begin learning how to breastfeed and bottlefeed. He is already sucking on his paci like a champ (Maggie Simpson style)! So he is doing well with one of the skills he will need to eat on his own. Learning to suck-swallow-breathe is much trickier than just sucking...and the nurses warn us that this is a big challange for all preemies. We're just looking forward to setting new goals and helping him reach them.

So far, we are having a good week. We pray that Miller's course continues on this path of progression. We know that there are so many of you praying for him and those prayers are essential! Thank you, thank you, thank you!

Love,

Danny & Stephanie

We're inching closer to 3 pounds! Miller weighs 2 lbs 15 1/2 ounces! He's up to 27 cc's of fortified milk and we hope he continues to tolerate the increasing volume. Miller's reflux has subsided, as well. His pump delivers his 27 cc's over the course of 60 minutes and we think the extended duration has helped.

Mom and Dad are a little more comfortable with his various machines. We know where all of the tubes and wires are supposed to go, so we can move him around a little more without having a heart attack.

Miller seems to be settling into a rhythm. He very rarely experiences a Bradycardia episode ( heart rate drop ) and when he does, he fixes it himself. But, he needs a little help from time to time on his O2. Room air is 21% and we'd love it if Miller could sustain the normal blood oxygen level on his own. However, because his lungs are still developing, he gets assistance from the CPAP or the nasal cannula. A couple of weeks ago, he was cruising right along with very little help. Lately, he's needed a little more assistance. He'll normally sit right around 29%, but when he gets tired we have to kick it up to 34% or 35% on his Oxygen level. We think it might be attributed to the fact that he's using a lot of energy eating and growing. We hope that's the case, anyway.

Overall, we're very pleased with his progress. We're about a third of the way home, so we've still got a long way to go. Thanks so much for your continued thoughts and prayers.

Love,
Danny & Stephanie