The following is directly from Ethan's Facebook Group Page; A blog that was used to keep everyone up to date on his status. There may be typos, there may be some areas not 100% medically correct. However, these are his father's words, the way he coped, and his understanding of how things were going. To preserve the original moment, no updates or modifications were made to the content, hindsight or not.

Not much of an update tonight, folks. I spoke to the doctor about having a neurologist weigh in, but at this point nothing much different they would do. However, an occupational therapist has been around and talked about movement exercises.

They are carrying on with his normal regimen... Going to reduce the ventilator rate settings in the morning back down to 40...see how he does there. He's been breathing room air, 21% oxygen, regularly. Keep challenging him as appropriate.

The doc did mention that he is getting phenobarbital (mild dose used for his high direct bilirubin). While a mild dose, it does have a sedative side effect. He used to get it in the mornings and now he will get it at night. During Pru's kangaroo care, she could feel him jusy slightly more squirmy... Nothing like before and a long way but just maybe............ Once he starts getting even more food, they can shift to a different medication. But until then, this in the only option. On that food note, he is getting 2cc of beast milk every 3 hours and has no issues keeping it down.

He will continue his antibiotics, as if he has meningitis for the full 21 days. The 29th would be 10 days of negative culture (typically you can stop there) and the 31st would be the full 21 day dose of meds... May as well go with 2 more days and get the full dose.

He gained 30 more grams yesterday and is now 970 grams rounding up to 2 pounds 2 ounces. He got a full dose of lasix and was a peeing machine today.... But also, they upped his fluids too. It's just going to be a slow process. While we'd love to see the edema gone overnight, that's not realistic or healthy.

Not a lot more of new... Time will tell. But each day even the most minor wiggle is definitely a bright spot.

Thank you for your continued prayers and support.
‪#‎EthanStrong‬‬

Ethan is officially one month old!! Woohoo!
(Picture of his new, awesome, hat. Courtesy of Ashley Callahan)

He continues to do well from a "vitals" perspective... There is slightly more movement today. He does seem to wiggle a little and starting to move his right foot. He lost 50 grams yesterday (back to 920 grams = 2 pounds 0 ounces). The doc gave another dose of lasix to help remove the edema as well.

They have upped his feedings from 2cc (1cc = 1ml = 1 gram) to 3cc every three hours. There is a little aspirate (milk suctioned from his stomach during each care, every 3 hours). That is to be expected and normal. If the aspirate is ever green, bloody, or constantly large quantities, then they may stop and see what's going on. In his case, it is nothing to be concerned since it's normal milk to have little amounts... in fact, they will push the aspirate back to him if it's "clean" looking.

Last night, his oxygen saturation was falling. In the past, they would have to reintubate to fix this... typically would find some gunk. They decided to reintubate. While the tube was out, they had him on the "resuscitation" mask for a couple minutes to see how that would work (i.e., sort of like trying the CPAP) and he did OK but definitely not ready for the CPAP. He did show that ability to take some breaths on his own... but again, not good enough, YET, for a CPAP. He also had a pretty big leak with his tube... around a 90-100% leak and his tidal volume was not being reached. When they went to reintubate, they tried the next size tube and, thankfully, it fit just fine. Today, no abnormal leak.

They bumped up his tidal volume to 3.8cc and his rate is still 50. There was an attempt to bring his rate to 40 this morning but that didn't fly for him. Maybe he was worn out from the nights' activities already.... I suspect they will try a reduced rate again in the next 48 hours or so. There is still all the edema and a lot is in his chest... so they, of course, realize this and want to be fair. It could be a reason he can't seem to maintain the 40 rate. Before he got sick, if i recall, he was at a 40 rate.

Maybe my shortest update, yet. :) I guess no news is good news... hopefully the only news I do share over the next several days is regarding additional movements.

Thank you for your continued prayers and support.
‪#‎EthanStrong‬‬

He's officially opening his eyes again. Unfortunately, I was working and missed him opening both... By the time I ran over, only one was open. That little stinker. He started to last night and more today... Too bad I couldn't get a good picture. Definitely tomorrow. Either way , they are both open and he's acting more "awake." Pru and I are doing exercises with him to open his hands, bend at his joints, etc. She had about 3.5 hours of kangaroo care today too.

Overall, nothing much more to report. About the same wiggle, maybe a hair more than yesterday, but he's opening his eyes more consistently. As I say each day... One more wiggle or toe move... Anything is a step forward. With those eyes open, we're starting to really see our little man slowly come back.

He lost 20 grams last night and is peeing a bunch too. He's at 900 grams and they estimate his dry weight to be around 800. It's becoming very evident that the edema is going away.

He's up to 4cc of milk now every 3 hours... Very awesome to see him take mama's milk and tolerate it.

Hopefully tomorrow I get a good pic of that handsome man and his beautiful eyes...

Thank you for your continued prayers and support.
‪#‎EthanStrong‬

Attached photo... Guess which one was taken today and which was taken 2 weeks ago? That's what a 50% weight gain of edema will do. Yeah, I'd say he is looking much better. The tape pulls his face a bit, but you get the idea. Still more to lose around his neck... But at least the edema is moving around so it's much easier to get rid of versus before when it was firm and not so mobile.

There has not been any change except for additional milk... He's now getting 6cc of mama's milk every 3 hours... He is tolerating it very well, just as yesterday. He only had about 2cc of aspirate during his 6pm care and it was normal (no weird color, blood, etc) so they pushed it back in along with the additional 6cc.

His movement today was different. Instead of his eyebrows moving "every time," he would move his whole head and once in a whole do something with his eyebrows. On the flip side, "unstimulated" movement was a little more... You could tell he was awake and playing with his hands. Nothing that we second guess but he seemed a bit more sleepy today. Heck, I slept 8 hours and felt extra sleepy today, so if we do it, why can't a preemie have a lazy day? I'm not reading in to it. His vitals (blood pressure, rate, saturation) , blood counts, and gases have all been normal. His temp was 97.2 which is a hair below the normal range (97.6-99.6), so we opted to not do the kangaroo care. He usually loses a degree during skin to skin time so figured best to let him keep warm in his isolette and not risk his temp getting too low. As of this post, his temp has been 98.2 for the last several hours. Probably since he doesn't have much fat and the top could've been open for a while during his care time earlier. Maybe kangaroo care tomorrow.

Hopefully the weather cooperates for us Super Bowl Sunday... Supposed to get a foot of snow and drifting, heavy wind gusts, etc. At least he has been stable... Pray he keeps that way. Monday can't come soon enough for our regular docs to be back so we can inquire about the medical transfer. Everything seems stable. Yes, a long road but he's stable so........ Maybe we can get him transported? Fingers crossed. Again, not much happening. He has been one stable and happy boy today.

Thank you for your continued prayers and support.
‪#‎EthanStrong‬‬

Quick update... just thought I would give you all something.

Pru and I weathered the storm and did visit with him for a couple hours before the additional 10 inches fell. It's one heck of a storm out there.

He's been stable all day. His blood gases were not too good this morning so they upped his vent settings. I just spoke with the nurse.. They ran the blood again this evening and they came back really good. This morning they were suctioning and messing with him so maybe that threw off the results earlier. Either way, glad to see they are good again. I am not sure if they will decide to bump them back down or not.

He is continuing to tolerate mama's milk (6cc every 3 hours). Tomorrow they will do full blood work and a CRP (C-reactive protein, an indicator of infection if it's a high value). Tomorrow is also the last day that he would get his last dose of antibiotics. So if all goes well, they should stop them. Part of that is worrisome considering what all happened... but at the same time, he should be good so we have to trust that. Paranoid, I suppose.

Not much more.... To clarify my comment yesterday... I am planning to ask the doctor about what it takes to transfer. We talked about it before he got sick and it was general terms. Tomorrow, I would like to know the criteria, especially since he is stable as of late. He does have his next brain scan Wednesday so maybe that will play a factor as well. Either way, it's nothing certain... just the fact that I am asking. Hopefully tomorrow, the regular crew of doctors are back and I have more to share regarding his status and transfer details.

Thank you for your continued prayers and support.
‪#‎EthanStrong‬

Also, Bo is also doing alright. I tried to get him to jump in the snow by saying "go get it" and little did I know the neighbor was walking outside (hence the bark). Whoops. Anyway, a little something to show he's feeling better after tweaking his back.

p.s., I think I saw Ethan mouth the words "Go Pats" earlier today. Attaboy.

Ethan had a decent night with no issues. He had a CBC (Complete Blood Count) and CRP (C-Reactive Protein) along with blood gases this morning. The blood gases were OK, nothing spectacular or bad but resulted in no vent changes. His CRP, a measure of infection, was 5.8. Anything below 6 is normal... but the doc said she would love to see it closer, if not below, 1.

His CBC came back with a low hematrocrit (low red blood cell percent)... There is really nothing "wrong" with that in a preemie. They happen to burn through them faster than they can create. In addition, taking blood from him, even though not as much lately, takes away red blood cells from him. I actually read that usually in the 3rd trimester, the mom will send a bunch of extra iron to the fetus so, when born, the baby won't have this problem. Chalk this up to being a preemie... even if he wasn't a micro preemie, it's not terribly uncommon either. To resolve, he got a blood transfusion this morning. Another thing I noticed is that each day his oxygen needs were slightly increasing. Today they hit about 28% (remember, room air is 21%). He was operating at 21-23% several days ago and each day seemed to go up a percentage. Red blood cells help carry oxygen so this makes sense... lower cells so lower oxygen saturation. Frankly, anything under 30% is kosher... but it's always nice to see your little one breathe the same air as us. :-)

He did get lasix yesterday but will not get it today. Having too much lasix can put risk to lowering sodium and electrolytes. His sodium is low... not terribly low, but it's down. They may or may not give lasix again tomorrow. He does continue to pee appropriate amounts so the lasix is just a matter of accelerating the removal of the edema. He does show less edema in his chest now so the breathing should hopefully be easier for him since he doesn't have to move all that excess fluid. Most of the edema is now in his belly and head... even with his head, there is just a tad near the top/back... his cone... yes, still has a slight cone head.

Because of the blood transfusion, they stopped his food for 24 hours. He continued to tolerate well through the night so I see no reason that he won't pick back up at 6cc/3 hours tomorrow.

Regarding the antibiotics, I misspoke. Today is only 14 days from a negative blood culture. Assuming he had the meningitis, next Monday, Feb 9, would be the full treatment. In addition, I mentioned before he had a stitch from his broviac come undone. This created an open wound in his groin... It is healing and does not look infected. However, you can still see the line, even through his skin. This is an opportunistic area for an infection to start. Taking the standard meningitis treatment (21 days from negative culture) and the broviac "wound" in to account, the doc feels strongly to keep him on the meds for 7 more days. These particular antibiotics do not put unnecessary stress on the kidneys or liver (typical organs impacted). Those both appear to be functioning fine. There is no real risk to continuing for another 7 days. Either way, the benefit outweighs any risk.

The doctor does want to order an EEG (test that detects electrical activity in the brain). In preemies, the EEG does not say anything about brain death like it would in adults. The idea for Ethan is to determine background activity (typical activity you would see when awake) and also look for any seizures. The pediatric neurologist has been paged but from my understanding, she is a one person show. It could happen today... but most likely before Thursday, the latest. From how it sounds to me, there could be brain seizures which have a side effect of apnea. The doc sounded very calm and said if that is the case, we treat with meds. So maybe this is a reason for his lack of a more stellar response to get him on a CPAP? Either way, it really is not anything to be concerned with... sounds like just checking under each rock to make sure nothing is left untouched when determining his care plan. The only thing that might delay the scan is the edema in his head... Since they will put leads on his head to measure the activity, you don't want to get false or incomplete readings if there is still too much edema. This is part of the reason to have the neurologist make a quick assessment before ordering a technician to conduct the EEG.

He is scheduled for the brain scan on Wednesday night/Thursday morning (midnight-ish). Additionally, Thursday morning we have a Care Meeting with the doctors and social worker. This is a regular practice they like to do on a monthly basis. It's not to "make decisions" but rather make sure we understand everything happening. The idea is because most parents don't recall the moving parts, treatments, etc so it's a way to regroup, debrief, and ask questions. From my end, I don't know how much more we will learn, per se, but it will follow the brain scan and we should have an EEG by then. This will be a nice opportunity to take that step back and regroup to ensure we haven't missed anything in the grand scheme of things.

Lastly, I asked about the medical transfer back to Florida. Conveniently, the snow also ended today at a total of 18.5 inches... so the question has nothing to do with getting the heck out of here.. well, maybe a little. The doctors are in full support, at this time, to do the transfer. They have asked the assigned social worker to make the calls to the insurance company and get the ball moving on all those logistics. We tend to have decent insurance (don't jinx me...) so I am guessing they would approve. After all, it's a business so I'd have to imagine our insurance has better, negotiated, rates with FL hospitals. Assuming Ethan continues to be stable and tolerate things, this could become a reality. It's hard to say the timing... maybe a couple weeks? We are thinking at least 1 more week for the antibiotics to be done... but even if the insurance approves a transfer, who does it? The University of Michigan has a helicopter and fixed-wing (jet) for transfers... or do we need whichever hospital in FL to send a plane? I am also guessing you have to "reserve" one so availability is unknown... all those things are factors. I'll keep you posted as we learn more but at least, as of this moment, everyone is in agreement that a transfer is appropriate and the ball is moving to make it happen.

All in all, Ethan is doing much better. One of the "regular" docs is back today and she says how much better he looks from last time. That's definitely a pro to having different docs rotate. Seeing him every day, it can be hard to notice day to day changes. The fact that she saw improvements and good change says a lot.

Thank you for your continued prayers and support.
‪#‎EthanStrong‬

Ethan got his first haircut! Well... yeah, sort of. Picture is the aftermath from when his EEG leads were removed... poor little man.

The initial results show no signs of seizures and nothing else "serious" so fantastic news! There will be a complete readout later but when the doctor spoke with the neurologist regarding evidence of anything serious, it was all considered normal. Again, still a chance something is found but at least if there is, it should be minor.

He is back on his milk... 6cc every 3 hours and tolerating. He does appear a bit more active. While changing his diaper today he picked his arm up and slapped his hand back. A little spastic but since he also has controlled movement, I find it just fine. He gets regular exercises during care (every 3 hours) to move his hands, arms, and legs... wiggle his toes and fingers to help him get moving again. Either way, he is moving much more now than before and those little eyes are staying open just a bit more too.

Earlier, he decided to be slightly naughty. While being turned to his belly, his tube came out. Part being turned and part maybe him pulling? Either way, not common but not uncommon. The nurses and doctors rushed in and got the tube back in.... luckily we were not here (several nurses told us that). Our nurse specifically said once the tube was back in he opened both eyes wide open with that "What the hell was that?!" look on his face. haha... I suppose that means everything was just fine if even they could make light of the situation. We always knew this would happen and will happen probably several more times as he gets strong and pulls himself... I just hope we never have to witness it!

Some interesting new developments... Kathleen Conran (Terri) told us that she spoke with a local news reporter the other day... Yesterday Kathleen passed our info, and today we had a phone interview with her. Additionally, Laurie Allen has graciously volunteered for a camera interview to also help share his story... tonight at 11PM on First Coast News in Jacksonville, FL. For those of you not in Jax.... us included... you can watch through a live stream on their website: http://www.firstcoastnews.com/

I'll be interested to see how she pulls that together since I am in Michigan but I'm confident with Laurie at the helm and possibly sound bytes from my phone interview, his story will be shared wonderfully.

Thank you for your continued prayers and support.
‪#‎EthanStrong‬

As many of you know (and what brought many more to this page), Ethan's story was aired last night by First Coast News in Jacksonville, FL... Keitha Nelson did the story and did an amazing job. Another huge thanks to Laurie for being interviewed to help tell his story.

The amount of support and prayers have increased so much and we continue to read more and more stories about parents in a very similar situation and their child had a wonderful outcome 10, 20, 30+ years later. It's very inspiring and encouraging. We only saw a couple "sour apples" in the bunch of 1000+ that felt the need to blame Prudence... I suppose I never imagined negative attention but you can't have a few cookies without some nuts? That's the way the cookie crumbles?

Ethan had his brain scan last night and it came back as expected. The hope, as before, was to not see anything further from a bleed or fluid build up perspective. There was absolutely no change and the same radiologist did the report so that's good he was comparing his opinion to the last scan vs. another radiologist. The ventricles are still large but not larger and the clots are still there. Frankly, if the clots would have broken up already, that'd probably be a concern. It is something that is a normal process that will take time to break down on its own. Officially, they are calling his bleed a Grade 2 (Graded from minor to major, 1 through 4). No matter the study, you will see some that say 1-2, no big deal, and 3-4 are a big deal. Other studies are showing that even 1-2 can still have major impacts. No matter what, you just never know. You can only hope for the best. Yes, any Grade # increases the risk of some limitation. But you cannot even guess what the limitations will be. The bleed was in the ventricles and not the white/grey matter... which makes it even more unknown. As I say many times, the waiting game is the worse and that's all we can do with respect to any limitations. We do know this... he is showing positive improvements. His eyes are consistently opening. He is moving more and more (as I mentioned, he was moving more of his arm while I changed his diaper)... all his systems are working. While they are weak... nothing is shut down. The more he continues to move and the more his systems continue to get stronger... you have to be encouraged.

Today, he has been a bit more dingy with the alarms (breathing and heart rate). They believe he is having some reflux with the milk. He is not pooping much so they will give a suppository... but at the same time, he has almost no aspirate (left over milk in his stomach, essentially) after feedings. Reflux is common and typically creates a bradycardia (sudden drop in heart rate). They may do an x-ray of his chest to check the tube placement as well and make sure things are in order but all symptoms point to reflux. He bounces back to a normal heart rate almost immediately and on his own. They are increasing his feedings but spacing out the time between each feeding (was 3 hours). Again, doesn't seem like much of a worry but we'll keep an eye on it over the next day or so. We learned yesterday, too, that a preemie's digestive system is a black box... no real science to it. If you imagine from your upper GI to your bowels... sometimes as the food and stool moves, it'll be pushed backwards.. then forward.. just imagine your intestines being spastic vs working together in one direction. That could also contribute to the reflux and lack of consistent stool. His intestines sound good too but this is just another thing since he is a preemie. It happens.

No more news yet regarding a transfer. I was hoping to know even if the insurance will cover it or not... Even if they approve today, I would have to imagine 100 more steps to take even getting him down there (which med jet transports). One piece of good news regarding "which hospital in Jacksonville?" The doctor said that once the insurance says where he will go (Wolfson or Baptist South... both are Level 3 NICU), that she will conduct the interviews. She will speak to their neo doctors and discuss the plans... talk with their neurologist and discuss their plans... talk with the charge nurse as well. If she does not feel comfortable with their responses, she will not support the transfer at this time. They are all for the transfer... nothing selfish. But it's great to know that they have every part of Ethan's best interest in mind. If they are not comfortable in a safe transfer and appropriate medical plans, he stays. Yes, I know there are two wonderful hospitals. There was a bit of a debate the other night regarding which hospital so this is my way of saying no matter what, our boy will be put in the best hands possible.

Thank you for your continued prayers and support.
‪#‎EthanStrong‬

They stopped the feedings since it appears after an abdominal x-ray, his intestines don't have "ridges" but rather appear "smooth." That can be an indicator of a new infection. All the antibiotics he is on cover gram positive bacteria... Naturally, intestinal stuff is typically gram negative bacteria. He will start an antibiotic called gentamicin today.

They will not transfer now that he has a new infection. Frankly, we don't care. Stay here for however long will be the best for him.

The Care Conference did not go well. In fact, we're hanging on to an incredibly slim chance of survival with any quality of life. The fact that he has not been breathing much over the ventilator is the concern. Breathing is a natural reflex (along with the heart beating) from your brain stem... it's like "Brain Activity 101." If he cannot do those basics (in this case, breathing) then it's almost certain that motor and cognitive skills will be incredibly limited too (as in, a "veg state" and may not even know who we are, ever). That latter part is so hard to say but if he can't do basic bodily reflexes, then well... chances of more complex things are very slim. Maybe the infection is what is causing this? But even lately and in my previous posts, he still has not been doing a lot over the vent. There was edema on his chest so maybe that was the reason... but the edema has pretty much moved away from his chest.

We'll treat the new infection and also order a MRI to get a better view of the brain. These next few days and potential decisions to make will probably be the hardest of our lives.

There is still a chance. The doctors are very clear that they are not giving up. But the reality is that we need to make a decision once they have exhausted all attempts to ensure he has a "fair assessment/chance." We appreciate all the support and just ask that folks respect whatever decisions need to be made. He is stable so not like we have to make a rushed one. In fact, there is that slight chance we never have to make a decision of any type. However, the doctor also mentions that maybe we let Ethan make the decision................................... There is still a chance. Albeit, incredibly small chance.... but dammit, it's there.

Prudence and I have taken off the rest of today and tomorrow so we can get as much time and kangaroo time with him as possible.

There is a chance... There is a chance.

Please keep our little man in your prayers.

Thank you for your continued prayers and support.
‪#‎EthanStrong‬‬

I wish I had a better update on a Friday...

I absolutely hate this kind of update but you have all been so supportive along this journey...

The MRI came back with the worst. He had a massive left cerebellum hemorrhage. I saw the MRI and no question how large the hemorrhage.

The prognosis is devastating. At minimum, quadriplegic with some spastic movement and an inability to breath. Almost certain that he won't even know us or be able to think.

We have a formal consult with the neurologist on Tuesday. There will also be another set of eyes but, unfortunately, this is pretty certain.

I am not sure if I'll provide another update between now and Tuesday as we expect no change. If there is one, I'll be sure to share.

In the mean time, we ask for some privacy. We ask for prayers and strength... This pain and difficulty is beyond words.

The amount of support has been unreal. No matter what, we know that Ethan has not gone a day unloved by so many.

With suffering releases love. The amount of love has been undeniably apparent. This 850+ member family Ethan has touched, across the globe, is undeniable. Regardless, he has changed lives. Prudence and I have learned so much about who we are and can confidently say that Ethan has made us better people.

Thank you for your love... hope... and prayers.
‪#‎EthanStrong‬