Monday afternoon 2

I have been telling Mommy that I think our blog ratings are plummeting because we have lost our edge... the audience is growing complacent and we need something to spice it up. I have BEGGED her to let me put a "during" picture up, convinced that it would double our hits (and that is just from Greg Scala), but she has refused to relent... no matter how artistically I have composed the shot. (For those unfamiliar with my warped sense of humour, please be assured that this is entirely in jest and we have no idea how many hits our blog gets). Alas, our young hero has supplied us with all the excitement that we need. WE CAN SEE HIS FACE!!!!
He has had his oxygen and his feeding tube removed and his head is completely free. It is so AWESOME to see him. So far he is doing well without any oxygen to help him. He is still having the odd spell where his saturation level dips (particularly when he is eating), but he is bringing it back up fairly well when that happens.
We are pretending not to be completely anxious, but in truth we are very on edge right now. His drug level this morning was 36. If you will check your scorecard, you will see that that is the level it was when he had his seizures on Wednesday night. So we are watching him like a hawk. He doesn't get his next dose until about 6:00 this evening. For reasons I don't fully understand, the doctors do not seem concerned about this, so our trust in them is being stretched right now. But they have not let us down yet.
He continues to breastfeed like a champ and, as of around midnight last night, is not getting any supplement of milk through a feeding tube. What he eats is what he gets... like a normal kid. Man, does that feel good to type. He has also started to cry more. When the nurse drew blood from his heel last night, he was crying like a (all together now) normal baby. I felt a bit guilty being so happy to hear my son wailing.
One little hiccup (by the way, he is having fewer of those than he was early in the week) is that we have been kicked out of our sleeping room at the hospital. We have known that this was a possibility every single night, so we are not complaining in any way. Apparently there is a very sick kid whose parents need the room now. We have been so blessed to be able to stay there for the last week. But this will mean that we will have to leave the hospital and go home and sleep and come back for the day. The biggest drawback of this is that Finley will have to have at least 2 feedings a day from a bottle. But we can deal with that. He has shown that he can handle the bottle fine. You will see in the pictures that Fin has also changed his digs. They needed his warming table because they are over capacity right now... a reminder that the need for miracles is continuous.
It will not be nearly as hard to go home tonight as it would have been two or three nights ago because...(drumroll)...it is very likely that Finley will be coming home on Thursday or Friday this week. They have started to talk in concrete terms about his discharge. HALLELUJAH!! He still has to prove that he can eat and breathe (oh, and remain seizure-free) consistently for the next couple of days. But we are hopeful that he will do that. It is important to remind ourselves that they still have no sweet clue what is causing his seizures... and that is very bad. But it appears that the drug will keep them at bay for at least a while while the investigations continue. We are starting to think that we may never know what caused them. If that is the case, there will likely be lengthy battles in the future as we try to figure out what drugs and therapy, if any, he will need for the long term. But we will blow those bridges up when we get to them.
For now, we celebrate seeing the angelic face of this little miracle.
With grateful hearts,
Robyn and Kevin

Monday afternoon

Sorry for the delay in posting. The reasons are mostly good. Will get an update and more pictures up by end of day.
Love,
Finley et al

Sunday afternoon

Things continue to progress. He has just received his first dose of his drug by mouth (well, actually through his feeding tube in his nose, but let's not split hairs) instead of by IV. There is talk of removing his pic line today. The IV in his hand is already gone. So the two things standing between him and a trip home are his oxygen and his feeding tube. He continues to feed pretty well, but is not consistently having a full meal at every sitting. He has missed a few entirely because he won't wake up and at a few others he has drifted off to sleep after about 1o minutes. At this point, we have Thursday in our heads as the earliest possible day that he will leave here. We are being allowed to stay in the sleep room through Wednesday night, which is great because it means Robyn can breastfeed him all day and night.
A discharge for him in no way implies that his problems are solved. It just means that they expect that he will be able to do at home what he can do in the hospital... eat, sleep, poop, grow, and sort out the misfires in his brain. It would definitely take us a while to be comfortable with the thought of going home. Here he has his heart and breathing and oxygen monitored around the clock. We never know that something is wrong just by looking at him... it is always the monitor beeping that lets us know that his oxygen saturation has dipped below 88%. But hopefully he can be taken off his oxygen and feeding tube in the next two days and have one or two days here without them so that we can feel comfortable. We are confident the doctors are not going to toss us out without ample instruction and preparation. I'm sure they will provide more clarity about the process in the coming days.
The neurologist was by this morning. He said that Finley is still hypotonal ("floppy" for the layman). We are seeing some improvement in that area, we think. And a physical therapist is supposed to visit tomorrow to check him out and give us some things we can do to help him. The more concerning thing the neurologist said was about Finley's EEG. He said that his brain activity is "not horrible" (direct quote). I asked for clarification and he said that Finley's brain waves were not always as crisp as they should have been when he was being monitored. We had not heard that part before, so it was a bit of a shock. But he said, as he has after almost everything he has told us in the last week, that we don't know what the long-term ramifications of that are, if any. My theory is that Finley is a supergenius/elite athlete/gifted artist and that many of his brain waves would not be detected by an EEG set to "normal". I didn't bother sharing my theory with the neurologist... for now.
For those keeping score, I had a shower this afternoon and did not miss anything important.
Lots of love,
Fin and Fam

A couple more pictures of yesterday's bath. That is "the juice nazi" (Amiee - we love her) giving him his bath.

Saturday night

Some big things:
A bath.
Wearing his own clothes.
The breastfeeding continues to go fairly well. His most awake time is clearly at night right now, but we will take it. We get stretches where things are almost "normal" (unsure of this definition now), which is just beautiful. We are starting to wonder if his lack of crying might just be him.
A test of the CO2 in his blood came back showing an elevated level. That may be a clue to why he is still needing the oxygen. Hopefully the doctors will shed some light on that tomorrow.
I will let the pictures and video do the rest of the talking.
Love and all good things,
Robyn, Kevin, and Finley

Saturday afternoon

Happy 1 Week Birthday, Finley John!
As you can see, his head is untethered again. Yeehaw! His only "supply lines" at this point are the oxygen and the feeding tube in his nose. Everything else is a monitor.
He had a few more feeds from Mommy through the night, but he is still being supplemented through his tube as they can't be sure how much he is getting from the breast. And he missed his 2:00 p.m. slot at the breast completely because he was so zonked - likely a combo of a night of very little sleep and his morning dose of drugs. They are going to transition his drug to give it to him at night instead of in the morning so that hopefully he will be more on our clock.
We have reached a stage that is incredibly demanding and tiring for Robyn, and it has nothing to do with Finley's seizure trouble. Robyn has to both breastfeed Finley AND pump every 3 hours or so. So that is leaving her stretches of 2 hours at the very most to sleep, eat, and do anything else. So far she is handling it well. But this will explain why you don't hear back from her or why she may not be able to talk when you call for the next few days. But I believe I can hear a few mothers out there saying, "I hear ya, sistah!".
Several of you have asked what has been going on in our real lives since we have been in the NICU. For those who don't know, I am in my first year in a PhD program at UNC. I obviously missed all of the classes last week (the final week of classes for the term). I have three final exams scheduled in the next week. Thankfully, all three professors have been very compassionate and generous and are going to allow me to defer the exams until the dust settles on our situation a little bit. That is a huge relief for us and we are incredibly thankful they have been so understanding. One of Finley's roommates (who was born at 24 weeks and has been in NICU for four months) has a Daddy in the Army who has to go back to Iraq on May 7 - just 4 days after his daughter finally gets to go home if everything proceeds according to plan.
We continue to be encouraged by what he is showing us. It is so great to have him free of the head wires again. Apart from the seizures, the biggest concern at this point is with his continuing need for oxygen. He does not seem to be making much progress on that front even though he seems to be progressing in other ways. The doctors are going to do another test tomorrow or Monday to see if there might be an independent reason that he is not taking in enough oxygen on his own.
Thank you for your continuing love, support, and prayers.
Mommy, Daddy, and the 1-week-old

Friday night

Some pretty big achievements today. After the excitement this morning from him taking 20 ccs from the bottle, he had a pretty laid back day. We were pretty content to let that be the big accomplishment for the day. So off we went to dinner. When we came back, his nurse was finishing up his feeding... FORTY CCs FROM THE BOTTLE!! This nurse is the one who was his nurse his very first night in the NICU... the one that bent the rules to let Robyn hold him. She feels pretty strongly about the importance of breastfeeding; she calls herself "the juice nazi" ("juice" being mamajuice... white gold...life nectar... breast milk). The odd thing is that after the 40 ccs, he did not drop into a deep sleep like the one he was in earlier in the day. And the juice nazi was not done there. Robyn just breastfed him!!! He latched well and sucked well. They both did really great. Even the juice nazi was surprised with how well it went. We are going back to try again at 2 am.
Below are some pictures of the before and after. The editorial board is being pretty tight with its approval for blogging purposes of any pictures of the "during" at this point.
As I type, it is almost exactly one week since Robyn went into labour. It is hard to fathom. Thank you for supporting us through this unbelievable week. We are so grateful.
Love,
Mommy, Daddy, and the SuperSucker

Before

After

Video try 1

Here is my first attempt at getting a video on the blog. It appears to work for me. Just click the play button and it should play right in the box below. If it doesn't work for you, please let me know and I will try help you figure out why.
Quick update for this afternoon: his heart rate and breathing slowed somewhat after his big eating accomplishment. The doctors don't seem at all concerned about it and are chalking it up to fatigue from the feeding and a deeper level of sleep. He will not be feeding from the bottle at every feeding, but he will be pacing himself and hopefully handling more and more soon.
Enjoy the video! (the talking you hear is us chatting with his nurse about her son, so no need to hire a detective to figure out what she is saying). Hopefully more to come soon.
Love,
Kevin, Robyn, and the movie star

Friday noon

Finley has had a very good morning. The neurologist was in to check the report from the EEG and said there is no sign of more seizures. He has been more active, had his first multiple-sound sequence... a few little cries and coos, and had his eyes open for a good stretch. And the greatest news of all... he drank 20 ccs of breastmilk from a bottle all by himself. That is AWESOME! The doctors would have been thrilled if he had taken and handled a couple of ccs, so this is his first major overachievement. We are so proud of him. The doctors and nurses all rushed in in excitement when news spread that he was taking the bottle. It was a really beautiful moment. And I missed the whole thing because I was in the shower. So, that's it... in addition to the beard, I will not be taking another shower until Finley comes home (:-)). The picture of the feeding is a picture of a picture that was taken by the nurse. She had it printed for us and is going to make a little display around Finley's bed.
We also took some short video of him sucking on Robyn's breastmilk-coated finger this morning, so Daddy K's next task is to figure out how to post video to the blog. I will put every available man on it right away.
We are both on a high now... it is so great to see him taking steps forward. And we are starting to allow ourselves to unbridle the joy. It is only fair since the pain and fear never seem to be bridled at all.
Love,
The Markles

Friday morning

He seemed to have a good night. We were not able to be with him as much because we both forced ourselves to sleep after the tough go the night before. It is hard to be away from him even when we know it is best for him that we are. Before bed, Robyn and I hung out with him together for a good while. It was nice to have some quiet family time. Robyn was able to dip her finger in some breastmilk and have him start to get the feeling of what the real thing will be like. I'm pretty sure I saw him smile. But we are still a few days from the first attempts at the breast and he is still showing that it will not be a simple process.
In an earlier post, I spelled the name of the neonatologist incorrectly. Just in case some of you pray REALLY specifically and spell the names for God, the correct spelling is "Marty McCaffrey" - I would hate for some farmer in Iowa named Marty McAffery to be working away in his fields and suddenly be overwhelmed with the feeling that he needed to check Finley's protein levels.
Below is an email that we received from a friend of a friend, Dave Harvey. They went through a remarkably similar situation with their son 8 months ago. I was originally going to post it when I got it a couple of days ago, but I hesitated for some reason. My guess is that I am very scared to appear at all presumptuous that Finley's story will have as beautiful an outcome as Elliot's (we already know from the MRI that the cause of Finley's seizures is not the same as the cause of Elliot's). But Dave's wonderfully written note brought us such peace, that I want to share it with Finley's Army (that's you!). Thank you, Dave, for allowing us to share it.
I will try to add another post after rounds this morning.
Love,
Fin and Fam

hi kevin,

i received an email from jeff bloom yesterday morning pointing me in the direction of your blog and i read it right away. to be honest, it was pretty overwhelming and overwhelmingly similar to our situation. it brought everything back with a sickening clarity. i know you by name only and my heart literally aches for you and your wife.

i remember everything very much as you've articulated it. the "is he going to die?" question was very evocative of one of the first conversations we had with the neonatologist. i'm glad to hear the news of the MRI. what i remember most about those first few days was just such a deeply intense fear of the unknown and a constant cannonball in my stomach. we had consults with every known specialist under the sun as they searched for every possibility to explain the seizures. each time some other possibility was explored it just opened up another avenue of fear and long-term consequence in my mind, more tests, and a new cycle of drugs. my wife, who's a physician herself, really never went down the hypothetical path with elliot: she just refused to believe that it woudn't work out. do whatever you can to help robyn sleep as often as possible. you have no idea how important this will become when the adrenaline of the immediate situation begins to wane. you will both need to be strong and prepared for this to last a while.

also, and this is very, very hard; try not to think about the future too much. i really struggled with this but it's totally unproductive. all you can do right now is focus on what the doctors are telling you and being there in the small, small moments you get with finley. while he may not actually be awake there is no denying that he needs your touch and your voice and some comfort from the mess he's in. i remember the thrill i got from being able to stroke elliot's hand through the little hole in the incubator - i understand just how painful it is for you two to not be able to touch him whenever you want. being in that situation made us realize that there are so many seemingly small, insignificant things that people take for granted with their babies. like the joy of a cry, or changing a diaper, or rocking them. i just remember so strongly craving anything "normal". when elliot was coming out of the phenobarbital haze we were dying to hear him cry. the nurses would chuckle with us saying that one day we might regret that wish but such a small thing meant so much and his cry was the most beautiful sound we had ever heard when it eventually came.

as ben may have told you, it ended up being a brain hemorrhage for our little guy that likely occurred in-utero but that will never be known for certain. he spent 10 long, long days in the NICU and couldn't properly breastfeed until he was about 6 weeks old as he suffered from pressure on his brain that essentially disorganized his thoughts during that time. it will never cease to amaze me how both he and my wife never gave up no matter how stressful and hopeless it may have seemed. incredibly, and this is the most important part of this email, he's lying downstairs in his crib right now about to turn 8 months old, the happiest baby i've ever known. he wasn't entirely out of the woods (in terms of future implications) until about 3 weeks ago when we had our final follow-up with the neurosurgeon and nothing more is required. our little guy managed to escape entirely unscathed from major seizures, the intubation, the MRIs, the CT scans, the feeding tube, the lines inserted everywhere in his body, the endless cycle of drugs, the inability to be held for almost his first two weeks of life, and the tortuous struggles with breasfeeding once he did wake up. there is hope man. i know there may still be a long way to go for you and your family, but please know that nothing's impossible.

you will live with this forever. i still cry randomly when i'm holding him thinking of what he went through with a mix of sadness for him and gratitude. i stopped trying to find a greater purpose in the experience long ago, but i can say for certain that it has served to make both my wife and i so grateful for him just being alive. when you walk that close to the edge, as you are right now, you learn to seriously "see" things differently.

i know from experience that it isn't going to help you to tell you that everything's going to work out fine. no one has the right to say that to you. what i can encourage you to do is just see finley for the unique child that he is and love him no matter where this may lead your family. he will be who he will be and the best news of all is that he's going to live and you will eventually be able to hold him and feed him and love him.

i don't know if any of this helps, but our family is praying for yours.

dave.

Thursday evening

As you can see, he is back to being wired for sound. He will likely have his crown of many colours for at least 24 hours, maybe longer. While we hate that it means we can't hold him, we both feel much better knowing that the (lack of) seizures are being monitored. So far, it looks like they are back under control. He actually opened his eyes today for a good stretch and was sucking on his Mommy's finger pretty well (as you can see in the picture). And he has been moving around and active a bit. If they had not reduced the drugs and brought back the seizures yesterday, I would have been writing that this was another good day. So those seizures were just a reminder to us that there is still much ground to cover.
The doctors were as surprised by and disappointed with his reaction to the reduction in his drug as we were. But at the end of the day, it is an answer to a question and the answers are what this whole process is about. He continues to show us positive signs. He is eating and pooping well. There is a picture below of the syringe of milk that he was eating this afternoon. Based on the tests of levels of the basics in his system, the doctor described Mommy's breastmilk as rocket fuel... they will likely be stopping all of the supplements soon.
You will see in the picture above that we have renovated his tray with some pictures of us and of his new best friend, Tasman, who waits patiently at home to smother him with kisses. As your cards come in, we will be able to hang them where he can see them, too.
Several local folks have asked if there are things they can do to help with our house or Tasman or other things. Thank you for your offers. These things are taken care of. Tasman is being very well cared for by our friends Nathan and Christi and gets to spend most of her day with her boyfriend, Starbucks. And my parents and Robyn's Mom are here now and staying at the house, so it is being taken care of. We will definitely call on people if needs arise. We are so thankful to have those options.
It has been a down day after a couple of good ones. But we are trying to remember that he is still just 5 days old. We remain hopeful and vigilant. And we continue to be so uplifted by your prayers and incredible love and support.
Much love,
Finley, Mommy, Daddy, and Tasman

Thursday 6:30 am

He has been given another dose of the anti-seizure drug to get him back up in the 40s. It did the trick and he is back to sleeping peacefully with no signs of seizures. It was awful seeing those seizures. The irony of it is that he opens his eyes when he is having the big ones.
This is obviously a setback and not what we wanted to see, but, as the doctor reminded me, we are still very early in the process. But it was just so much easier to say "we will let Finley show us what is going on" when we thought that he might show us that he didn't need any drugs at all and that he is done having seizures. It is clear that the root cause of the seizures has not gone anywhere, so this is a reminder that finding that cause is the absolute key. It will be good to have his doctor (Rachel Troy) and the head neonatologist (Marty McAffery) back in the morning to talk this over.
Thank you for your continuing support. I'm sure many of you, like I did, allowed yourselves to start thinking we might sweep the series. Please don't let this dampen your resolve or your hope. He is a fighter and will come back strong.
Love,
Finley, Robyn and Kevin

Thursday 3:00 am

He has had several seizures over the last four hours. They are trying to figure out what to do. They can't just load him with more drug because they don't know how much is still in his system. They have ordered a rush test to determine his level and then will know what to do.
Please pray.
Kevin

Wednesday night

A few technical notes: If you click on the pictures in the posts, a much larger version of the picture will open in a separate window so you can get more detail (I am only passing this on now because I just learned it myself). Also, if you have had the blog forwarded to you and don't know our email address, it is ksmarkle@gmail.com. We love getting your emails, so please do not hesitate to send them.
Today was another good day with some quality holding. He has needed a bit more oxygen help today than he did yesterday, so there are reminders that this is not going to be a forward-only process. We are still very much in a place where every movement worries us as we wonder if it is just normal or the symptom of a seizure. But the fact that he is eating Mommy's milk and handling it is great. He is still far from out of the woods... in fact, we are still not sure of what woods he is in... but we are hopeful that the treatments he is getting are the right ones. And tomorrow is another day.
Many of you have asked what you can do to help us and we are so grateful for that generosity. And we have thought of something. If you have children (or are a child of any age, or are childish, or just like drawing things), we would love for you to help them make a card for Finley and send it to him. It would be great if they could draw a picture of some of their favorite things (like their bike, their dog, their best friend, their favorite games...) and write him a short note telling him about them so that he can learn about some things outside of the hospital that he has to look forward to. We can then read them to him and show them to him and then have them in his room when he gets to come home. You can mail these to our house at 4 Swallows Ridge Ct, Durham, NC 27713. Thank you.
You will notice in the pictures that I am growing a playoff beard (if you don't know what this is, ask a hockey person). Finley and I have decided that neither of us is going to shave until he comes home.
Thank you again for all of your incredible love.
Finley and his parents

Wednesday afternoon

Words would just get in the way...

Wednesday morning

As you can see in the pictures above, he has started grasping the valve on his pic line (a line in his right arm that goes into his heart) in his right hand and holding it over his right shoulder. He looks like David holding his sling, which is just an awesome image for us.
We just came from rounds and it is pretty clear that we have entered a new phase, one that will not bring earth-moving news each hour, but will rather be a slow process with much waiting. Patience now jumps to the top of the long list of things we need to muster. But muster we will.
Finley continues to sleep all the time. They are reducing the level of the drug, but it could take days for the amount that is in his system to settle to the new level (for those craving some science-speak, the drug has a long half-life). HOWEVER, we got a brief gift yesterday night when Finley opened his eyes and looked at his Mommy and his Grandma Hannah for almost ten minutes before settling back in for another long snooze. So he has given us a little teaser of what we hope is to come.
He seems to be handling Mommy's milk well, which is great. Everyone who examines him says that he does not have a very good suck, so it will likely be a struggle to get him breastfeeding. But we are all (Finley, too) committed to making that happen. But he won't get to try until he wakes up and has graduated from tube to syringe first.
We have had our stay in the sleeping room in the NICU extended through the weekend. We are very thankful for this as it allows us to maximize our time with him.
We will continue to update. Here are some pictures of his "home", so you can have a sense of where he is hanging out. He continues to get excellent care.
Love to all.
Finley's Mommy, Finley's Daddy, and Finley

Tuesday evening

Not much to report, but thought I would send some pictures from a lovely afternoon of holding. He had his first feeding of Robyn's milk, so we are hoping that he deals with that well and can have more and more and more of it.
Still no waking moments. They are going to begin to drop him back from the max on the anti-seizure drug and see if they can find the perfect balance that will allow him to remain seizure-free but also not be so doped up. It is something of a trial and error process, so it is possible he will have some more seizures before they find the right line.
Thank you again for the comments on the blog and emails and phone calls. They are such an incredible blessing to us.
Love,
Robyn, Kevin and Finley

Tuesday morning

The pictures here are not from today, but you know the saying about 1000 words, so I am including some from yesterday. There will be more later today as we have been told we can hold him lots this afternoon.
We shed our first tears of joy today. The MRI revealed no abnormalities or injuries to the brain. This is the most wonderful news we could have expected, so we are riding a bit of a high right now. That joy is bolstered further by the fact that a line into his umbilical cord is being taken out right now and the EEG monitor has been removed (since he showed no seizure activity overnight) and so we will be able to hold him lots this afternoon... and hopefully continually from here on. All joy, of course, is cautious joy. When the doctor told us what the MRI said, his words were "this is good but frustrating news". Good because it knocked a lot of very serious diagnoses off the checklist, but frustrating because there is still no idea what caused the seizures. But we will take that frustration gladly for now.
Another positive is that they are fully confident there is no infection, so they have stopped the antibiotics he has been on since he was born. Another great thing is that he finally had his first big bowel movement (sorry, no picture available... they took it for testing before I could snap a shot :-)) and has had another one since. And the best thing of all is that they will be inserting a feeding tube today and he will start getting very small amounts of Mommy's milk.
There is still much concern about why he won't wake up at all and he does not respond to the neurologist's tests as well as he would like sometimes. The best possible explanation is that the anti-seizure drug, phenobarbital, is just knocking him out. If that is the cause, it should become apparent in the next few days because its effects should lessen as his body gets used to dealing with it.
The next area of focus for the "wide net being cast" (as the doctor described it) is on his metabolism. There are apparently many possible problems in that area that could be contributing to the seizures. Those results will not be immediate as some of the tests have to done at external centres. So we are going to have to be patient. Of course, lab results are great, but an equally wonderful result would be for Finley to build his strength, overcome the drugs, and open his eyes and look at us. We remain hopeful that will happen.
Thank you for the overwhelming support. On top of everything, Robyn's milk is coming in and she is dealing with some cramping as well. Last night during the 2:00 am pumping I was concerned that she was going to have no reserves at all for today. But she was able to sleep and woke this morning feeling better than I could have imagined. That is thanks to the incredible outpouring of love we have received, make no mistake about it.
We will be back with more pictures later today.
With much love,
Finley and family

Monday night

Today had its highs and lows... we are getting used to that. The head neonatologist came and sat with us for a good half hour and just chatted with us. It was great. We asked him bluntly, "Is there a chance that Finley is going to die?". And he said "no". That was a huge relief to us and something I think we were not allowing ourselves to think about. We have no doubt that he was being completely frank and honest with us. So there is huge cause for celebration.
Finley was taken off his EEG today. We still only have the preliminary impressions of the neurologist to go on. We have not yet been told what the 24 hours of monitoring actually showed about whether the seizures were stopped. Once he was off the monitors, Robyn was able to hold him again for a good long while, which was fantastic.
He had his MRI this evening. We do not have any idea what it showed. It was one time that we were very grateful for how out-of-it he is right now so that the hour in the big machine was not too traumatic for him. We will get those results tomorrow. That is likely the biggest "report" we will be getting in this whole process. They are confident that the MRI will show what, if anything, is wrong with his brain. We are terrified to hear that report, but also look forward to some clarity. There will also be results tomorrow from the neurologist and from the cultures on his spinal fluid. So, I think we can officially dub tomorrow "results day". We are going to do our best to get some rest to build our strength to tackle it.
We have been given one of the "sleeping rooms" in the NICU, so will be able to stay here with him all day and night at least until Thursday. We are so thankful for this. It was going to be very hard to go home without him. We are glad to defer dealing with that for a few days.
Your emails and calls are so greatly appreciated. Thank you so much for them. We feel very loved and supported.
There will definitely be news tomorrow.
Until then...
With much love,
Robyn, Kevin, and Finley

Monday morning

We just came from rounds and speaking with both the neonatal doctors and the neurologist. It is reassuring to have the main team back and to know that they will be here consistently now.

There is not much specific information to report. The neurologist was doing a review of the monitoring over the last 20 hours and said that based on what he was seeing, there has not been seizure activity. But that still has to be reviewed by the computer and read officially.

We asked about timelines. What has been especially hard for us is the rising and falling of expectations... we have both allowed ourselves to get hopes up for each discussion with the doctors that they might say "we're unhooking him from everything and you can start feeding him and probably take him home tomorrow". That is not going to happen. We have been told to proceed on the assumption that he will be here for at least the next two weeks. Controlling the seizures is great, but as the resident explained to us, it is like tylenol controlling your headache...the more important thing is determining what is causing the seizures. And they just don't know at this point.

He will have an MRI today. The expectation is that that will reveal some answers about his brain and help them to start zeroing in. Our greatest prayer request is for strength and peace and trust in God for us as we find out the results of the MRI. We don't know what time that will happen, but have been assured that it will happen today. He will then be hooked up to the EEG again, so we will still not be able to hold him again today. But we are able to be with him all day and to hold his hand. His blood tests continue to say good things. They significantly increased the does of the anti-seizure drug (yesterday was 17, today it is 42), so he is pretty wiped out. The good in that is that it means he is resting very well. The bad is that there is little response. We still have not seen his eyes open.

They are planning to do tests on several more fronts... a "shotgun at the waterfront approach" as the doctor explained. A geneticist will be visiting at some point and they are going to try to figure out if he might have some problems with his metabolism.

We have come to terms today with the fact that this is not a sprint, but a marathon. Knowing that, we hope, will make it easier for us to pace ourselves and control our expectations. We remain hopeful and very reassured that he is getting great care. We are not at odds with the doctors on anything ( e.g. they want him to have Robyn's breastmilk as soon as possible like we do). We have developed a strong trust in them, which helps us feel more peaceful.

Thank you again for the incredible love and support that we have felt from all of you. While it often brings tears, it means so much to us. Thank you.

With much love,

Robyn, Kevin and Finley