No news is good news...we think. The doctors decided not to do the normal Friday ultrasound today. We're not sure why, but we're guessing it's because Miller's situation seems to show no exterior signs of regression at this point. There almost certainly an MRI in his future and the Friday ultrasounds will resume but, for now, we're taking comfort in the contentment of the docs.

He's up to 18 cc's of fortified breast milk and his filling up his wee pee's. This means that he is digesting well so they will continue to increase his feedings as long as he tolerates them. His little lungs seem to be working really well too. Our little man is getting a little bit stronger every day!

Miller was in the middle of a blood transfusion when we got to the NICU tonight. It's about a three hour procedure, so we missed out on the evening Kangaroo. But, with the infusion of all of the new red blood cells, chances are he'll be up for some good Kangarooing over the next few days. They take a lot of blood from him to check things like his glucose, blood gas, blood count...and on and on...

As always, we are so moved by all of your thoughts and prayers. Lookin' forward to the Walk.

Love,
Danny and Stephanie

We're up to 16 cc's of milk every three hours and Miller seems to be tolerating it with no problem. We think the extra calories are having an impact. He's more alert and responsive, and we've never seem him open his eyes as wide as he did today. They're definitely having an impact on his diapers...(shoooweee!)

Miller's getting good at this kangaroo thing, too. He went for 2 hours today! Normally, he'll get a little tired and cranky after abount an hour. But today, he settled into a really nice breathing pattern and just relaxed.

Mom met Dr. George, the Neurosurgeon today. We've been dealing with RNs, Nurse Practitioners, Clinicians, Radiologists, Respiratory Therapists, and Neonatologists. Dr. George is pretty much the head honcho right now. He had his own opinion of Miller's IVH and it was a little different than the others. Dr. George seems to think that Miller's bleed is unique. There are four different levels of bleeds, with each level demonstrating elements of the other levels plus the level the bleed reaches. So, a grade three bleed has elements of both grade one and two in addition to grade three. Miller's bleed is a grade four, but doesn't seem to demonstrate the elements of a grade one, two or three bleed. What does this mean? We don't know yet. And Dr. George's lips are sealed for now.

Miller will continue to get ultrasound head scans every Friday to track the progress of his reabsorbtion. In addition, Dr. George thinks we should do an MRI, which will provide a little more clarity to the situation. But, an MRI would be very uncomfortable for Miller right now. If you've ever had an MRI, you know it's no fun. It's cold and it takes forever. Plus, he will need to have anesthesia and be intibated...scary stuff for new parents and crummy for a three week old little biscuit. We talked about it with the doctors and the results of the MRI would not change his current or short term treatment; nor would it reveal anything that would require immediate action. As such, we've decided to hold off on the MRI until Miller's a little older and more able to tolerate it.

In the midst of all of this, we do have many blessings to count. One of them being milk production. We have heard that breast feeding and milk production can be very tricky, especially for momma's of preemies. Since their bodies are not ready to have a baby, sometimes they're not ready to feed one either. We must have a guardian angel (thankfully) when it comes to this because our cups literally runneth over. Thanks to the Smart family, we have a safe place to store it until Miller catches up.

We are looking forward to the March of Dimes WalkAmerica event on Saturday. A big thank you to those of you who are participating or sponsoring Team Miller! In a situation like this one it is easy to feel helpless. It's definitely empowering to support an organization like the March of Dimes...especially knowing that the research funded by them has probably already been very beneficial to our little one.

Love to you all,

Danny & Stephanie

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