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.
Call me crazy but it just doesn't seem right to not post an update regardless of nothing new. Almost not as right as my sentence with a double negative (cut me some slack. :-) ). Maybe because as many of you noticed, it's almost like my daily journal that I post each day...
The doctor reiterated today that they are not done. Prudence and I often get distracted with the "what if." Even the positive stories we hear are uplifting but at the same time even hard to read because when it comes to neurological function, there is an incredible amount of unknown. Every case is different. We continually seek the "right answer" but I think we are learning, there is no right answer. The wrong answer is not caring. We care more than words can explain... So no matter what, whatever we decide must be right.... Right?
Either way, we are trying to carry on these next few days as usual since no decision of any type will be made before Tuesday.
I did mention to the doctor about another set of eyes, from a neurological perspective. The best time will be our consultation on Tuesday. At that point we'll further discuss other docs to bring in... Frankly, on that note, if anyone is aware of one of those "world renowned neonatal neurologist" then please let me know. The doc also reminded us of the transfer idea... Maybe a "win win" to get us, with our son, back to Florida and also another neurological opinion from the docs there. But honestly, we would transfer him anywhere if there was a doc out there that had something that gave even a 1% chance more positive outcome.
Again, no real change. He's stable. He's moving the same. He's being strong. No decision was ever intended to be made... But if I didn't provide an update, no matter how insubstantial, it didn't seem appropriate either.
Thank you for the continued prayers and support.
Today was a pretty special day for Ethan. All his cousins were in town visiting, hence the awesome cousins picture. The 2nd pic is Ethan with his new linens... Very appropriate for Valentines Day coming up. Cute little monkey....
Keeping the trend of not much change... He did have an x-ray of his abdomen and it is looking better. If you recall the other day, there was concern of an intestinal infection because of how it looked. His blood culture has been negative, and complete blood count (includes white blood cell count and CRP which are infection indicators) which have come back normal.
Tomorrow, they will remove all the antibiotics. That's the plan anyway. More blood work and another x-ray first thing in the morning... If it looks good then he'll stop taking four antibiotics. The antibiotics shouldn't have many side effects but you never know... Less stuff in his body so that could help overall.
He hasn't received any beast milk but if tomorrow's x-ray and blood work is normal, and improved, then they will restart the feedings.
I appreciate the comments and referrals of docs and neurologists. I've been taking note so on Tuesday, during the neurology consult, I can share some ideas and contacts for that second opinion.
Thank you for your continued prayers and support.
Our sweet boy is 6 weeks old... fantastic!
But one thing that is a bit more important... Ladies and gentleman... we have poop! Lots of it, in fact. Like... I am pretty sure everything that showed in his x-ray is out. So incredibly encouraging to know that he is doing that on his own since it has been 5 days or so... and remember, they were worried about a possible infection. Granted, intestines should not have looked like that but he got meds, he pooped, so all is good in that front for now.
He has had a really good day today. He does seem to be moving slightly more and even his head side to side. It's so difficult since more movement is such a good thing but also we "know" about the prognosis from the other day. Granted, tomorrow, Tuesday, we have our official consult with the neurologist where she will visit him, answer our questions, etc. Based on that, we will talk more about the transfer... more or less "transfer to where?"
Either way, we want multiple opinions. Unfortunately for this, it sounds like the only way to get different opinions is based on the doctors and their experiences. It's not like he has some rare "something" and only a few docs in the world know about it. But the more "seasoned" a doc may be, the more likely they can give a better picture or even odds from a prognosis perspective... since it's a "common area" to get a bleed... I am thinking the differing opinions will be based on their experiences... Hence the desire for someone seasoned. Not to say this neurologist is not... but just imagine that a doc that has seen this 10 times will have less data than a doc that has dealt with this kind of bleed 500 times. Either way, my typical long-winded way of saying something.... we're getting multiple opinions. If for some reason a doctor in anther state feels they will have a better grasp, maybe we transfer there. Wolfson does have a decently high neonatal neurology unit (#43 according to US News)... so a transfer back home and the second opinion could be bundled in to one. We hear that once insurance approves, it could literally be a matter of days to complete the transfer. More details and more to come... Apparently Baptist South is not a Level 3 NICU??? The Social Worker said that, even though I am 99% sure it is... either way, from a neuro perspective... Wolfson would be the choice assuming we transfer to FL (almost 99% sure that'd be the case vs. another state).
All of his blood work this morning came back excellent...... except for his hematocrit (% red blood cells). But from an infection perspective... his CRP (C-Reaction Protein) and White Blood Cells were very normal. Platelets are high... blood gases and sodium were excellent as well. We expected his red blood cells to be low due to all the blood they are taking. He is just too immature to effectively create his own fast enough. I asked about iron supplements and again, he is just too immature to get too much iron. He gets some but not a bolus like he would get from mom towards the end of the 3rd trimester. Point is, transfusion is the only option for now and really not a terribly risky thing, either. With that said, he is no longer taking his antibiotics. It's a scary thought but at the same time, nice to be off all that.
He will start his milk tomorrow... the fact that he is pooping is very encouraging that he will continue to tolerate the milk. He didn't get any today because of the transfusion.
Last night he went up 50 grams... officially 1050 grams and 2 pounds 5 ounces. There is still a bit of edema but he looks much better than he has. In fact, we are pretty certain we saw him smile. No, really... Weird and awesome all built in to one.
I bumped a post earlier but just a last reminder for folks to get their shirt if they want... that ends tonight at midnight EST. There have been over 230 shirts sold (including the first two rounds).Thank you all so much for the shirts (as you know a donation comes to us) and of course the GoFundMe.
We'll be praying a lot tonight.. I hope our boy "shows up" tomorrow for the neurologist to show her how much he can really do. To us, he's been making tremendous strides.. Yes, not like before he was sick, but dammit he is fighting!
Thank you for your continued prayers and support.
The consult was as expected and, unfortunately, a bit more negative than expected. There are several other abnormalities... I appreciate the optimism but for those that don't know me... Remember, I'm tour stereotypical engineer. I ask almost too many questions and insist on "black and white" answers. Unfortunately, in this case, it really is that black and white. Just please trust that.
It's amazing how a 1 pound 1 ounce little guy like this could change lives. He has brought grown adults to their knees... Joined together an incredible amount of people. When you think you're wise and know it all, a little one like this says how much we have to still learn. It didn't take a loud voice... It took his heart and his will to fight.
Ethan has taught us that there are so many precious things in life. During the happiest times and the most frightening times during the last six weeks, our sweet boy has told us to stay strong no matter what. Right now, we have to repect that. Stay strong.
He will forever have that mark. We will never forget. Simply looking at this following of people... How many of you joined together. How many of you do so much to pray for this sweet boy. Many of you I've never met, and maybe never will meet... Lives have been changed. Ethan will never be forgotten. During any time of emotion or heartache, we will think of Ethan and the strength he taught us.
Over the next few days... Pray for our sweet boy. Pray for his comfort. Ethan has touched so many of us... More deep than we could ever imagine.
Think about that again: The power of a 1 pound, 1 ounce 23 week preemie. We have so much to learn, yet, he has taught us so much. Let's never forget that.
Thank you all for your continued prayers and support.
Ethan had a very comfortable day. As you could see from the pictures I posted, he was a snug little monkey.
He had several visitors today that had a chance to spend a little time with him and even touch him. I'm pretty sure he enjoyed that very much.
Tomorrow we have a baby dedication and prayer planned for 5:30PM EST. I don't believe that Prudence and I have asked for much... Almost all of you have said "If there is anything I can do..." Well, here is our ask: At 5:30, when we are with our sweet boy surrounding him in prayer and love, do the same. At that moment, hug someone close to you. Take a moment to tell another you love them. Out shopping? Look the checkout person in the eyes and thank them. Let that "jerk" cut you off by slowing down and waving them in. Pick up the phone... call a friend, parent... doesn't matter, you get the idea: Do something kind, make someone smile.
Also, if you have your #EthanStrong shirt tomorrow, wear it. If your shirt has not arrived, wear it proudly when it does.
Ethan has showed us a tremendous amount of love, strength, patience, and hope all bundled in to one. He has darn near 1000 followers in this group... worldwide, literally. What a better way than around that time, when he is surrounded by love and prayer, to do the same?
Thank you all for your continued prayers and support.