And the rollercoaster rolls on...We showed up tonight for our 7:30 Kangaroo and the nurses told us they wanted to keep him on the CPAP for the rest of the night. So, no Kangaroo this evening. With all of his recent tests and increased meal portions, Miller's just a little pooped.
He's off his insulin drip, which is great, and his portions are up to 14 cc's.
If he continues to tolerate the increased portions, the nurses will begin fortifying his breastmilk with a few extra calories (breastmilk only has about 20 calories). It's time to fatten this kid up!

There's no more news on his scan, which we interpret as good news for now. There will be another scan on Friday to make sure things are still progressing in the right direction.

We have to temper the good news yesterday with the knowledge that he's still at significant risk for various developmental problems and cerebral palsy. In fact, as discussed in an earlier post, the doctors are well versed in worst case scenarios and they're quick to remind us of all of the possibilities. But, we're focusing on the positive side of the equation and we'll deal with any issues as they come.

While Kangarooing was not on the schedule tonight, we did get to spend a little quality time with him. Miller wears these teeny little diapers called 'wee-pees'. When we arrived tonight we went to change his wee pee and were pleasantly surprised with a stinker. Seconds later, momma was christened a real wee pee when Miller let out a squirt. A little bit of comic relief in the NICU...

We want each and every one of you to know how much your love, support, and prayers mean to us. This 'roller coaster' as they call it is frightening and exhausting. It helps to know that we don't have to face it alone.

Danny & Stephanie

The Seton NICU called about 15 minutes ago to give us the preliminary results of Miller's latest scan. They don't have written confirmation, but the general consensus is that the blood in his brain is reabsorbing on its own. At this point, there does not seem to be a need for a procedure. This is the news we were hoping and praying for. Miller's certainly not out of the woods, but we really needed this little victory. Please thank God for this. All of your prayers are helping, keep them coming!

Miller's 2 weeks old today! And, in celebration, he got a new isolette (crib). He's been in a Giraffe, a super high tech, self humidifying, robotic contraption with all of the bells and whistles. Now, he's in what looks to be a 1982 model Ohmeda. It's like when you go to the airport and walk down the jetway. Sometimes you end up in that brand new 737 with clean leather seats and the drop down TVs. And sometimes you walk on to that creaky, yellowing Airbus 300.
The nurses assured us that that old Ohmeda was up to the task.

Miller's a hungry boy. He's up to 11 cc's of momma's milk every three hours. He seems to tolerating it pretty well. The nurses have increased his oxygenation percentage (on average) over the last couple of days. Previously, he was at 21% (room air). He's up a little bit (30%-40%), probably due to the increased amount of food in his stomach. They're giving him a little more time on the CPAP and he seems to be responding well.

The NICU is full of bells and dings. Anytime one of the babies experiences a desaturation (drop in blood oxygen level) or a drop in heart rate, a little bell goes off. As you might imagine de-sats and hr drops are very common in the NICU, so at times it can sound like Christmas. The machines that monitor these things and make those sounds also have big green and red numbers. We're usually sitting with Miller for an hour and a half at a time and it's hard not to lock on to those numbers. Our stress level rises and falls in direct correlation to those numbers. By the end of the day, we're pretty much spent.

Thanks to his Aunt Michelle and Uncle JP, Miller got a new book. The Little Engine That Could will be a permanent part of Miller's daily routine. In fact, it was the inspiration for the awesome t-shirt Uncle JP designed for Miller Lee's WalkAmerica team.

Tomorrow (Tuesday) brings another cranial ultrasound to determine our next step w/ Miller's IVH. We are praying hard & praying often. We know that all of you are doing the same, and we are so grateful for it. As usual, we are keeping ourselves distracted by flipping b/w HGTV & The Food Network until we can't keep our eyes open...

Love to you all-

Danny & Stephanie

It's Sunday night and tomorrow brings a new week and a new goal for Miller. We're aiming for 2 pounds 8 oz by next weekend. His milk tolerance has improved greatly and his feedings have doubled to 8 cc's every 3 hours. His glucose levels are stabilizing and his breathing continues to improve. Miller spends 12 hours a day on the CPAP and 12 hours on the nasal cannula. He's much happier on the cannula and he'll hopefully start spending the majority of his time on it soon.

Mom had a few really strong kangaroo sessions. We did it twice on Saturday and twice on Sunday and Miller loved it each time. He even "read" his first book, The Graves Family Goes Camping. We're also trying to create some associations for him. The nurses probably think we're crazy, but we've downloaded some "Miller Music". We bring in an ipod and drape the headphone's around mom's neck so Miller can hear the music while he rests on her chest. Maybe he'll associate the music with his mom and feel more comfortable in the crib when they let us put some speakers in there (i-crib).

Mom and Dad are in much better spirits. Friday was pretty emotional, but we're back on track. We can't wait to get back to the NICU to be with Miller. He's already done so much for our family and our friends, our love, and our faith. His momma calls him our "little mountain mover".
He's a very special little boy.

We are praying every day for the best outcome for Miller-as his momma says, "Healthy and whole, mind, body, and soul". The Lord says, "ask and you shall receive" and this is what we are asking for every single day.

Love,

Danny & Stephanie

We knew there would the rough days and we had really rough one on Friday. We learned more about Miller's IVH ( Intraventricular Hemmorhage). The radiologist interpreted the original scan as a Grade 4 IVH. Friday he had a second scan and it gave us a better idea of what going on in his little head. Miller has a Grade 4 IVH on one side and a Grade 2 or 3 on the other. An IVH is basically blood on the brain. The baby's veins and arteries ( especially in pre-terms ) are fragile and often produce leaks in the brain area. Spinal fluid can also intrude. Often, these little hemmorhages resolve themselves and the blood gets reabsorbed into the body. Other times, Hydrocephalus can occur and procedures are required to relieve the brain from fluid and pressure. We'll know on Tuesday (another scan) if we need to intervene in Miller's case.

What does all of this mean for our Miller?

Studies and statistics show that 50% of pre-terms at this stage resolve the bleeding themselves with no intervention. This doesn't mean they're out of the woods; it only means no procedures are necessary.

Of all of the Grade 4 one side and Grade 2 or 3 other side cases, 50% of them experience significant neurological damage, leading to cerebral palsy and other developmental problems.

Another 50% experience only mild developmental problems.

There's 10% out there somewhere that have absolutely no issues whatsoever, like the IVH never happened.

The good news:

1. Nurture vs. Nature. Doctors tell us that Miller's development will be directly tied to how committed his parents are. We know we can't create miracles ourselves, but we are committed to pushing the percentages. If, statistically, 50% of these cases end up being pretty much OK, we feel like we can push it to 55% or 60% by being proactive...reading, singing, Kangarooing...We'll wake up each morning aiming for that extra 5 to 10%.

2. Miller's clinical history is at the top of the scale. He's exceeding all expectations on breathing, eating, and regulating himself. His reflexes are great and he's very responsive with his hands and feet. Most of the pre-terms that develop severe problems are very sick in other areas, as well. Miller's fine everywhere else. That could change, of course, but for now he looks great. This bodes well for him.

3. Doctors are scared. We live in a very litigious world and we've noticed what appears to be a "CYA" attitude at times.
We had a busdriver in the minor leagues that we called "Road Kill". He got that name because he never stopped the bus. It might of been a 12 hour trip, but Road Kill would put the hammer down from start to finish. He'd tell us what time he'd get us there, and he always came in ahead of schedule. As a result, we all loved it when Road Kill showed up to drive the bus. We had another bus driver..."Road Stash". Stash had a big mustache and stopped every now and then to get a drink or take a leak. He consistently got us to our destination around when he said he would. Most often, a little late. We hated to see Road Stash show up and we heckled him mercilessly when he ran behind.
But, if you paid attention, you figured out that the same trips always took about the same amount of time. Road Kill just told everybody it would take longer and he looked like a champ when he got us there "early".

No matter what happens, little Miller will be fine. He may have minor challenges, or he may have major challenges, but we're committed to him with our entire being.

Thanks for all of your love and support. And please, keep the prayers coming.

Love,
Danny and Stephanie

It's official...Miller is gaining weight! He weighed in 11 days ago at 2 lbs 1 ounce and he's back to his birthweight! Most babies (term and preterm) lose a little weight just after birth. With preterms, it's a little more difficult to get them back on the weight gain train. With Miller, it's a result of his tummy overcoming his initial troubles with distention, etc.. So, they're increasing his portions and he'll hopefully continue to put on weight. We even got a good poop today! At'a boy!

The doctors are watching his glucose/insulin levels very closely. He needs to gain weight so they increase his glucose, which equals calories to fatten him up. He's not big enough to produce the amount of insulin needed to regulate his body, so he'll continue to get it via the drip to balance out the glucose. This is fairly normal and he'll hopefully begin regulating himself soon. And, the more feedings he tolerates, the less glucose he'll need.

We're trying not to think about tomorrow's cranial ultrasound. We're both pretty nervous about it. Dad has a bottle of Ambien on the nightstand and tonight might be the night he cracks the lid. As a result of the scan, we should learn if his IVH has stabilized. That's really about all they'll be able to tell us at this point, but that would be huge. Please say an extra little prayer for that one.

So here's something pretty cool...there's a group of volunteers at Seton who knit little blankets for the NICU babies' cribs. We know there are a couple of nurses that have a little crush on Miller, but we think one of the volunteers might be sweet on him, too. When we got there this afternoon for mom's kangaroo, Miller was wearing a new, freshly knitted, royal blue stocking cap (pictured). The nurses think it's so cute that they've ordered dad his own cap to match.

Thanks to all. Keep the positivity coming.

Love,
Danny and Stephanie

Chalk up another good day for Miller Lee! He was able to tolerate his feedings ( 2 cc's each ) and his distention has subsided. He's doing so well on his canulla that the nurses are reducing his cpap treatments. So, he's breathing really well and he's breathing room air. He'll have a mild de-sat (desaturation, or period of low O2) every few hours but for the most part his lungs are doing everything we ask them to.

His blood glucose readings have been a little high, so they put him on an insulin drip. This is probably related to the fact that he wasn't tolerating his feedings earlier in the week. Hopefully all of that will resolve itself.
Unfortunately, in order to test his glucose, they have to draw blood. His little body isn't equipped to produce as many red blood cells as he needs for all of these tests so he'll probably need a transfusion or two in the next few weeks. This sounds scary, but it's a very normal part of life in the NICU.

Mom had a great kangaroo tonight. Miller closed his eyes and seemed to love every second of it. Miller might just be playing his cards right on this deal. Momma was telling him about all of the things he could get away with when he gets better. Apparently, Miller now has permanent permission to sass his momma, throw mashed potatoes on the floor, and pee in the yard like daddy.

Friday is looming. That's the day Miller gets his second cranial ultrasound. We'll learn if his IVH is contained or if it's going to require some type of intervention. We are very encouraged by all of his clinical signs, but the scan will tell us for sure. What we won't know is what impact, if any, it will have on him long term. We just have to keep praying about that.

Oh, one more thing. I think we are about $10 away from our goal of raising $1,000 for the March of Dimes WalkAmerica on May 12th. Thanks so much to everyone. Team Miller will be out in full force that Saturday morning. Grampa Peoples is making t-shirts and everything. Check out the website when you get a chance...
http://www.walkamerica.org/s_team_page.asp?seid=410996

As always, thank you for your thoughts and prayers....and food!

Love,
Danny and Stephanie

Yaaay Dad! Miller had a great day and tonight he got to spend about an hour and fifteen minutes on his daddy's chest. His breathing was really strong and seemed very comfortable curled up in his dad's big hands. It was a very encouraging experience, particularly when compared to the circus that was last night's Kangaroo. It's amazing how much difference a really good nurse can make. Fortunately, at the Seton NICU, you can pretty much build your own team of nurses. We knew early on that we wanted Beth as our primary, or lead nurse. She's very experienced and patient. Her positivity is catching, as well. Tonight, we met Davika. She's a little younger and has a more progressive approach to Kangaroo Care. We knew it was a match right away. We asked her to be on Team Miller and she accepted.

Miller is officially off phototherapy.( For now, anyway ). His bilirubin numbers are in the appropriate range and his color looks great. The nurses plan to resume his feedings tomorrow and we'll know a little more about how well his tummy is tolerating things tomorrow evening.

Mom and dad are still watching the home improvement channel. We don't think real TV will happen anytime this week and dinner with friends (one of our favorite pastimes) is probably a little ways off. Every night we talk about our plan for the next day and, as you might imagine, it's all geared around when we think Miller will be up for a Kangaroo. But, dad did pick up the guitar tonight, so at least there were some familiar sounds around the house ( some of them were even in tune!).

So, Miller had a good day. And mom and dad are hanging in there. Days like this are gifts for us. We know there will be some difficult spots ahead, but we'll deal with them as they come. Your thoughts and prayers keep us going. Thank you.

Love,
Danny and Stephanie

Little Miller Lee was a bit cranky today. His breathing was a tad inconsistant and he had 4 brief episodes of apnea; possibly the result of some distention in his tummy. The nurses tell us that the CPAP breathing apparatus can sometimes cause a little extra air to get trapped in there and it makes him uncomfortable. As a result, they backed off on the feeding today and he showed signs of improvement tonight around 9 pm.

Mom and Dad are determined to practice as much Kangaroo Care as we possibly can with Miller. We've done some research and everything we read convinces us that it is absolutely vital to his overall health and development. Kangaroo Care seeks to provide restored closeness of the newborn with mother and/or father by placing the infant in direct skin-to-skin contact with one of them. This ensures physiological and psychological warmth and bonding. The kangaroo position provides ready access to nourishment. The mother's body responds to the needs of the infant directly, helping regulate temperature more smoothly than an incubator, her milk adjusts to the nutritional and immunological needs of her fragile infant, and the baby sleeps more soundly.

Research support has provided evidence that Kangaroo Care contributes to breastfeeding longer and more frequently; health and survival of premature infants; quiet alertness and deep sleep; less time in incubators; earlier discharge; less crying and distress; fewer illnesses; and fewer readmissions to hospital. There is evidence of better maternal milk supply; increased confidence of mothers; father’s participation and acceptance; and empowerment. ( Wikipedia )

We had a tough call to make tonight. Miller had already had a challenging and uncomfortable day, but we really wanted to proceed with our scheduled Kangaroo Care session. We knew he was a little spent and it was tempting just to let him try to relax and recover. However, we decided to challenge him one more time. It's a bit of a production to get him ready for his mom's chest. There are wires and tubes everywhere and Miller's not a big fan being handled by cold-handed nurses. Finally, we had him situated and mom rocked him for about an hour, singing Row, Row, Row Your Boat and Twinkle Twinkle Little Star. He did OK. There were a couple of times where his heartrate dropped to the point where it made us nervous and he grunted a little more than normal. We think he was just worn out. Hopefully, he's getting some rest tonight.

Big props to Kimberly. We cooked up her chicken and rice casserole tonight. Now that's what we call comfort food! It was delicious...

Tune in tomorrow for some information about the team our amazing sister Michelle is putting together for the March of Dimes WalkAmerica on May 12th. Team Miller will organize and walk in support of premature children around the world. We'd love to have you.

Thanks so much for all of your prayers and support.

Love,
Danny and Stephanie

We had another Kangaroo Care visit today and Miller just loved it. He seemed to be right at home on momma's chest and his breathing was very rhythmic and consistent. At one point he decided he wanted to change positions so he attempted to push himself up and turn his head to the other side. He almost did it too!

His features will probably change, but his hair looks to be a little lighter than his daddy's. He opened his eyes wide a few times for us and they're currently a beautiful Carribean blue.

The nurses are keeping the phototherapy light on until his bilirubin numbers fall into the appropriate range. His color is great and they expect to turn the light off tomorrow. When that happens, they'll cover his crib with a blanket and he'll hopefully get plenty of rest.

Mom and Dad are hanging in there, too. We find it difficult to concentrate on anything for any extended period of time. Mom has her shows and we usually catch a late episode of Law and Order before hitting the sac. But, normalcy is a thing of the past. We find ourselves doing mindless tasks and keeping a ballgame or home improvement show on the TV for the simple noise of it. We're not sure what it is, but there's no way we could relax enough to watch a movie. There's some kind of guilt or something associated with escaping. Even if it's just for Law and Order.

Dad gets his first Kangaroo Care visit tomorrow and he's really excited about it. He's been perusing the music store websites, looking for a Baby Taylor. Miller's got his Dad's big hands and his Mom's long, elegant fingers. Perfect for the guitar.

As always, thanks for all of your thoughts and prayers. The power of prayer and positivity is immeasurable.

Love,
Danny and Stephanie