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