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