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

Fridays are always a little nerve-racking. That's the day the ultrasound machine makes its way around the NICU. They do the scans in the morning and then send the pictures to the radiologists for an interpretation. This normally takes all day and the reports don't make it back to the NICU until late afternoon, at least.

The doctors, nurses, and nurse practitioners in the NICU are great. But, many times, they are trying to relay information from conversations that the radiologists had with various other doctors. So, the details of the scan results often get lost in translation.

As a result, we've decided to rely on one person and one person only, for our scan information. That person is the neurosurgeon, Dr. George. He looks at the pictures himself and formulates his own interpretation. He's the brain doctor and the guy in charge of that part of Miller's continuing treatment. Dr. George called late yesterday afternoon an relayed the following:

Miller's bleed is resolving as he expected. Whenever there is a bleed in the body, blood coagulates and a clot forms. The small clot in Miller head is dissipating and the scan showed signs of that. There are still a number of things that we'll need to watch over the course of the next few scans, but this one showed us nothing that we need to be immediately concerned about. At some point, we'll send Miller down for an MRI. But for now, the plan is to hold tight and hope his injury continues to resolve itself.

Again, it's impossible to predict the long term effects of his bleed. It could have very minor signifigance on his development, or it could create major hurdles. The important thing for us is that it seems to be resolving and stable. We hope that continues. And, at the moment, the rest of his course is going well. He's eating, breathing, has no infections, and is growing!

As always, thank you for your thoughts and prayers. We love reading your comments and emails, and your prayers are as important as the doctors.

Love,
Danny & Stephanie

Miller's a pro Kangaroo-er. Mom had another strong, two session day with him on Wednesday. He's up to 2 pounds, eleven ounces so he's still on the weight gain train. The nurses have increased his milk volume to 25 cc's every three hours.

Miller started having a little reflux. It's the acid kind that you see commercials about. Reflux is very common in pre-terms because the muscles near the bottom of the esophagus are not fully developed. These are the muscles that "squeeze" intermittently to help keep stomach liquids from creeping back up and causing the baby to spit up. To combat this, the nurses are using a pump to give him his milk. Previously, Miller would receive his meals "gravitationally" through a feeding tube. They'd hang a batch of milk from the top of his crib and it would gradually empty into his stomach. Now, they're using a pump ( like you'd use for an IV ) to regulate how fast his food gets delivered. He'll still spit up a little bit from time to time, but he's still on track with his feedings.

Dr. George, the Neurosurgeon, is expected in the NICU in the next couple of days and he'll perform an evaluation on Miller. It probably won't tell us much, but it will give mom and dad some needed face time with the expert.

Thanks again for all of your thoughts and prayers. Our little guy is hanging in there.

Love
Danny & Stephanie

So we don't really have much to report today which is just fine wth us. Miller had a good day with two kangaroos that lasted over an hour each. His color is really good and he's very alert...probably something to do with his blood transfusion from the other day. His digestive system is really starting to work and we're getting stinkers a couple of times a day now. Who would have thought we'd be getting so excited over some seriously stinky diapers? Dad missed out on the visits today because he wasn't feeling 100%. We're just not taking any chances.

Today we got lucky with the dream team. We have a few nurses that we are partial to and most of them were there today at some point. The level of care he receives at Seton is amazing, but it is even superceded on days when he has certain nurses. This is one of the main reasons we are able to sleep at night. We hope we don't drive them crazy with the little game of 20 (million) questions we like to play.

Mom and Dad are doing well too. We are starting to adjust to the NICU lifestyle, planning everything around visiting hours and pumping. For now, this is our new normal.

With the move, we may not be able to post for the next day or two. But if anything noteworthy happens, we will find a way.

Sweet Dreams

Miller had a great weekend. We all did.
On Saturday we had our first March of Dimes WalkAmerica event. It was cool to see so many NICU grads and their parents with their own special team shirts. None were as great as ours of course (thanks Grampaw Peoples and Uncle JP!). We wouldn't recommend the DJ for your wedding, but you could say some of the song selections were, umm, entertaining (We Built This City, Eye of the Tiger, Rumpshaker, to name a few). We were mostly moved by the team Aunt Michelle put together and the participation/sponsorship of so many of our friends and family in such a short time. Our team goal was more than doubled (over $2000.00)...way to go Team Miller Lee! A great big THANK YOU to all who participated.

As you may have begun to notice, in the NICU everything has a domino effect. This weekend it worked in our favor. Miller's PICC line (peripherally inserted central catheter) was removed on Saturday. This is the IV that was threaded into an artery for long-term venous access. For Miller it was used to deliver nutrients and fat (respectively referred to as 'baby gatorade' & 'fried chicken') to sustain him, in addition to insulin. Now that he's beyond 21 cc's of momma's milk every 3 hours (today he was up to 24), he no longer needs the baby gatorade or the fried chicken. This also means he no longer needs insulin either since it was used to balance out the glucose in the baby gatorade. What a wonderful Mother's Day gift...to be able to sustain our sweet little one on momma's milk...with a few extra calories added of course! Another benefit to the removal of the PICC line is dodging CRBSI-catheter related bloodstream infections. This is a major concern when dealing with PICC's.

Momma also had her baby shower on Saturday. She was nervous that she'd be emotional since normally baby showers are held before the baby comes. But after almost three weeks since the Miller Bear surprised us with his arrival, it was definitely time to step out and visit with some of her nearest and dearest. The party was beautiful, but she came home feeling showered with much more than gifts...

Today Miller is three weeks old. In this short time we have already reached so many milestones and taken a trip or two around the track of that awful roller coaster they refer to in the NICU. We know we have a long way to go, but we are really learning to slow down and appreciate the little things. Last night, after a nice long kangaroo session, Miller finally found a way to shove all of his fingers into his mouth and chomp away. This may not seem like a big deal, but he's been trying to do this since he was born (and the nurses told us he was not trying to do this...ha!).

We hope all the momma's had a wonderful Mother's Day!

All our love,

Danny & Stephanie

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