Jeremy Update

Last night when my dad went up to spend the night with Jeremy, Thomas and I went with him so we could pop in to see Jeremy. Visiting hours are from 9am-6pm with only 2 visitors allowed in the room. They resume at 9pm until 6am for one person to spend the night. So we try not to visit that way very often but I really wanted to see him and with his surgery that day I hadn't gotten the chance. I was shocked and excited to walk in and find his eyes not only open, but also blinking. I couldn't wait to get over beside him and talk to him. When I did, I swear he looked directly into my eyes! It was the most amazing thing and when I went home I was so excited I couldn't fall asleep. Today he was doing really well and the doctors were so excited. They have decreased his pento to 0.25 mg/kg/hr which means one more decrease and he is fully off it. It will take some time for it to work its way out of his system once he's done with it. Then we'll get to slowly see what he is able to do. We know it will be a long process, but we are excited to see what we're working with! Today while my mom was there Jeremy was tracking her and looking at her when she talked. When she told him to blink his eyes, he did. He has also been wiggling his toes. When he's able to breathe on command, they will take the trach tube out and allow him to breathe on his own. We are all excited and a little bit nervous about what comes next, but so ready! I've had people asking about my dad's hernia surgery and I had totally forgotten I mentioned it on here. He had an appointment on Monday and another one today. They have him scheduled for surgery on Friday. Jeremy and dad share a birthday and it is this Saturday. Every year on their birthday my dad says, "Guess what my favorite birthday present ever was?" and Jeremy would say, "Me!" It will definitely be a different celebration this year, but we still have lots to celebrate! Elise woke up from her nap when Carter fell asleep for his, so an update is all I have tonight.

Elise was quite pleased with herself for waking up early, haha!

Jeremy Update

Great news, Jeremy's surgery went really well today! He now has a rod in his leg and a few screws to hold it in place. His ICP started to go up a little bit at the start of the surgery so they moved his bed up to more of an incline and he had no trouble after that. He is now down to 1.25 mg/kg/hr of pentobarbital. I figured with the stress of surgery they wouldn't be able to decrease it at all today, so I was pleased with that. During a suctioning this morning he was actually trying to raise his arm to push them away, he just couldn't quite get his arm up. It's neat to hear that he's starting to function a bit and is reassuring that he was able to move his arm as that leads us to believe he is not paralyzed. The arm he was moving is controlled by the side of his brain where most of the damage occurred. This morning my mom and I were discussing the surgery a little bit before she left to go back to the hospital. A little while later Carter told me he felt nervous. When I asked him why he said, "I'm nervous for Uncie J's surgery." I felt the same way but was surprised to hear Carter say it as my mom and I hadn't discussed our feelings at all. I spent the first half of the day anxiously awaiting news on Jeremy's surgery and the second half in jittery excitement over the good news, so this update is all I've got for you today.

Another fun memory on timehop, me and Jeremy heading out for a run 6 years ago today.

Jeremy Update

Today was another good day. Jeremy's pentobarbital has been decreased to 1.75 mg/kg/hr. He's starting to come out of the coma a little bit, not just opening his eyes, but also looking around and tracking people. When my parents talk to him, he opens his eyes! He is scheduled to have surgery on his femur and pelvis tomorrow but we don't know what time yet. We may find out at midnight when the schedule comes out. As long as everything continues to go as it has been, surgery will be a go tomorrow. There will be one person in the operating room whose sole job will be to watch Jeremy's ICP and open or drain his shunt as needed. I feel more comfortable with the surgery knowing he still has some pentobarbital working to keep his brain sedated. I feel like he is less likely to have any major ICP spikes that way. We are feeling confident that everything will go well during surgery and we will have one more milestone achievement in the road to recovery behind us!

This picture showed up on my timehop today. We were going for a run together and came out dressed alike, it was so funny! I'm annoyed the "6 Years" is over Jeremy's face!

Jeremy Update

We have another stable day in the books, my friends! Today was quite the exciting day. Jeremy's pentobarbital was decreased down to 2.25 mg/kg/hr which puts him coming out of the coma in about 3 days or so. Ortho has scheduled his femur/pelvis surgery for Monday! We are all so excited he is stable enough to have that surgery as he desperately needs it. There had been discussions about possibly doing surgery at certain times before, but this time they had my parents sign consent for anesthesia and scheduled the surgery and everything. The neurosurgeon is quite pleased with how well Jeremy is doing and has been more upbeat and excited when he comes to visit. Today while my parents were visiting Jeremy opened his eyes multiple times while they were talking to him. I'm spending the night tonight and was disappointed to see his eyes taped shut as I was hoping to get to see him open his eyes, even though he's not yet looking at things or focusing, but they were getting dried out because he had them only partially opened. I'm excited for them to keep chipping away at his pentobarbital! It won't be long before he is awake and we enter a new phase in his recovery.

Love Without Fear

Jeremy Update:

This morning Jeremy went in for surgery which was successful. His filter is placed so if the blood clots in his legs break loose, they will be stopped from going into his heart. That was a huge relief for us! His drain attached to his shunt which had been continuously on and draining cerebral spinal fluid was then set so it would only drain if his ICP rose above 20. Now it is clamped and is not being used at all. His bed is now at a 30 degree angle and he is tolerating all of that wonderfully. His ICP has been under 10 most of the day and under 15 all day. The ortho team is now discussing surgery on his femur early next week. We would love for that to happen. Right now his pentobarbital has been decreased to 2.75 mg/kg/hr. So we are almost half-way weaned! With the decrease in the pento he has been having some tremurs. I know it's silly, but seeing his lips move has been thrilling for me. It reminds me he is alive in there and will be moving again soon. Now on to some random thoughts put together in a post...

Carter was so excited when he found this picture of me and Jeremy at Jeremy's house.

As I drove home from the hospital one day the song "Like I'm Gonna Lose You" by Meghan Trainor came on the radio. As I listened to the lyrics I began to cry. It's so true that "In the blink of an eye... You could lose everything. The truth is you'll never know." I cried over taking Jeremy for granted, for not fully appreciating how lucky we were to have him within walking distance, for not inviting him over for dinner enough, for not dropping Carter off for special Uncie J time enough. But as time has worn on and I've come to terms with what is happening and how our lives are changing, I'm also struck by how wrong some of the other lyrics are. I get the sentiment of loving someone like you are going to lose them, the thought that you don't take their presence for granted. I get that. But is it really possible to never have moments of taking someone for granted who we are lucky enough to have intertwined in our lives? Those people who are so much a part of our lives they become meshed into the very essence of our being. It's like saying you will never fight, it's just not possible. Part of truly loving someone is caring enough to call them on their bull shit, caring enough to say the tough stuff, caring enough to share your feelings, caring enough to talk about unpleasantries. Part of having people who you spend a great deal of time with is sometimes forgetting how lucky you are to have them there. It's just a part of life. I am currently experiencing loving someone like I might lose them and it hurts. It hurts a lot. It is deeply rooted in fear and sadness. I don't want to ever love someone like I might lose them because that is a love that is tinged with fear. The fear of loss. I want to love those important people in my life without fear, without holding back, with wild abandon. 

Jeremy has this picture of us running my first marathon hanging in his bedroom.

Yesterday evening Ty came home straight from work and mom was treating us to dinner out so I didn't have to cook. Instead I went out for a run alone, no stroller, no kids, no dog. And the therapy session began. It started with a sluggish 8:04 mile and ended with a rocking out 6:51 mile. As I ran down the sidewalks I thought back to my first run after Jeremy's accident. I drove to the trails to run and told my dad I would be running on the trails for quite a while, if I ever ran on the streets again. But then within a week I was out on the streets again. Life is full of unexpected, of scary, of life changing. What I hold onto is that you can't let fear control your life. You can't let fear keep you from doing what you love. True my brother nearly died crossing a street during a run. It was scary. It is scary. It was and continues to be life changing for all of us. Does that mean we should stop running? Does it mean we should stop doing what we love? Absolutely not, although I do believe it should make us more cautious as I hope it has made every runner who has heard Jeremy's story do just that. Don't stop doing what you love, just do it carefully. As I turned the corner heading into the 3rd mile of my run a car drove by with its windows down and that song blaring. It was a gentle reminder: don't take this for granted and don't live in fear. The fear must never overshadow the love. And yesterday evening as the sun set and the stars began to twinkle in the sky, I fell back in love. It was the first run since Jeremy's accident that I actually enjoyed. It was the first run I let loose with wild abandon and let my legs carry me away. I'm thankful for that and I will keep at it, carefully and cautiously enjoying what I love. 

Another picture Jeremy has hanging in his room, us running a half marathon together.

Another picture Jeremy has hanging in his room.

A Letter to Elise at 10 Months

Jeremy Update:

Today along with the blood clots they found in Jeremy's arms, they found one in each leg. If they were to break loose, they would travel to his heart. To remedy that they will be putting a filter in tomorrow morning that will catch the leg blood clots before they can make it to his heart. His surgery is set for 8:35 in the morning, but he isn't the first surgery so it may get moved back if there are any complications with the surgeries preceding his. The nurses will not move him around tonight to make sure he doesn't get jostled which would increase the chances of a clot breaking loose. They have reduced his pentobarbital to 3.25 mg per kg of body weight, so we are getting there! His ICP has been awesomely low all day, below 10 and his CPP and blood pressure have also been great. Last night we had a reminder of how lucky Jeremy is and how lucky we are that he is still here and doing as well as he is. There is a 19 year old man who came in 2 days after Jeremy and started having really high ICP which led to a craniotomy on one side yesterday and then the other side last night in the middle of the night. There was also a woman brought in from a car wreck who passed away during the night. We are very sad for those patients and the families involved and were reminded to be thankful for our current situation. It could be better, yes. But it could also be significantly worse. Keep Jeremy in your thoughts and prayers tonight that the blood clots remain where they are and the surgery tomorrow is successful. Now on to Elise's 10 month post...

My sweet little Elisey girl, just thinking about you makes me smile! You are the happiest and sweetest little baby. You can always make me smile and you make my days brighter. You love to make other people happy and will stare and smile at complete strangers until they turn to look at you. One day we were eating lunch out and you kept smiling at a woman sitting by a table near us. She came over to tell me what a sweet baby you were and how you'd made her day. She went on to explain her 7 month old great granddaughter lives far away and she hasn't gotten to meet her yet. She loved seeing you and imagining her great granddaughter. It made me so happy to know you had brought a smile into her day!

You may have just started crawling a little over a month ago, but you are already so freaking fast! You take off pretty much the moment I set you down and I'm always off searching for you after I get dressed or have gone to the bathroom. Carter is so good about going and checking on you for me when I'm going potty. He'll come running back to me with a full report. Sometimes I'll even hear him saying, "No, sissy, that doesn't go in your mouth!" He's quite the care taker! You have also started pulling to a stand this month. Daddy saw you do it a few times but you weren't doing it consistently because I was waiting for a week after daddy said you had done it and I still saw nothing! Once you took off with it, you took off though! Now you are constantly pulling up to a stand on pretty much anything tall enough for you to do it on. You like to pull up to a stand on the step up into our shower which makes me nervous since it's tile. If I'm taking a shower, you try to climb in the shower so I usually just put you in the shower with me so you won't bonk your head. Sometimes you'll be standing and I can tell you want to get down, but you're not sure how. Normally you just slide down to a seated position. It seems like it's when you are standing at something really tall that you get worried about getting down. There have been a few times when it was about naptime and you were standing up and got so tired you were only holding on with one hand while you sucked your thumb on your other hand. You also try to climb onto things. You've pulled up to a stand and climbed onto the dishwasher when I was unloading it. You also tried to climb up onto your chair in your room along with the trampoline while Carter was bouncing. You are a bit of a dare devil!

Before you started pulling to a stand you would crawl to my legs, put your hands on my feet, and then grab my legs and pull up to your knees. Sometimes you would be constantly doing that and pulling on my legs to where I couldn't get anything done, usually when I was trying to cook dinner. You are so independent and happily play alone all the time. You also wake up and play quietly in your crib for a while after naps so it surprised me to realize you are a bit of a momma's girl. With Uncie J in the hospital, I've been leaving you and Carter with someone for a while so I can go up to visit him. When I come home you screech when you see me or hear my voice and bee line it to me. You will babble mama over and over as you are crawling. One night I got home as daddy was getting you ready for a bath. You heard me talking in the entryway and cried until he brought you out to see me. Everyone always jokes that your brother is a big momma's boy, mostly because he's so cuddly and likes to play with my hair. It surprised me that you are a bit of a momma's girl since you've always been so good about playing on your own and not needing to be held all the time like your brother was at your age.

You smuggled this wristband out of Uncie J's house in your coat sleeve and it's your favorite toy right now.

You sit like this all the time when you go from crawling to sitting.

You very obviously say mama and lucky for me, it's usually when you are excited to see me and want me to pick you up. Your brother only said mama at your age when he was upset and needed something. You also say buh buh when you see Carter or when you are reaching for him. You don't say it quite as much but I have noticed you say it. I've also heard you say dada when you hear your daddy talking in a different room or when you see him and want him. There have been a few times when you looked at Harper and attempted to say her name, saying something that started with the /h/ sound. I've also heard you say bah bah when you see a ball or when you are crawling toward one. It's so exciting that you are starting to say words and associate names with people or objects.

We went on a walk to the library with the wagon on January 12th. It was your first walk in the wagon. Your only wagon rides before had been in our driveway. At first you looked a bit startled and scared when we took off, but after we turned the corner you were loving it and smiling so big. You looked like you were in sensory overload as you could see so much more than you can in the stroller. You were turning and looking all around. Then on the ride home you wanted to look at some board books just like your brother. I think you loved the wagon because you were facing Carter instead of sitting next to him so you could see him really well which totally made your day! You started standing on your own consistently on January 17th. It was the first time I'd seen you stand and you did it over and over and over and haven't stopped since. Daddy had seen you do it before but you hadn't done it again after daddy saw you in over a week.

Your personality is simply described as awesome. You are so funny and love to laugh. You do the silliest things. When you are on the laminate floor in the playroom/kitchen you like to lay on your belly and push off with your hands to make yourself spin around in circles. It's the funniest thing to watch you. You are also so loving and smiley. You just picked up waving and wave at people all the time. If I say hello to you, you wave back. Sometimes you'll wave at people to get their attention. But if I'm trying to get you to wave, forget it! You only do it when you want to! Something that cracks me up is your tendency to shove things in your mouth. I feel like much of my day is spent following you around, fishing things out of your hand before they reach your mouth or out of your mouth once you've snuck them in! I've found a whole range of items in your mouth, from avocado stem to safety pin and a number of scary items in between! I consider it a successful day when you haven't been able to shove anything questionable into your mouth. I feel like you're getting a little bit better about this as I haven't had as much trouble this past week. But if we are outside at a playground, Carter can forget me playing with him because it's a constant job keeping you from ingesting a random item you might find and there are just too many options! If Carter uses his potty chair instead of the big toilet I have to clean it out right away. One day I forgot and I found you happily splashing away in his potty! Ick! The joys of being the second born!

This month has been huge in the development of your relationship with Carter. He loves you to pieces and tells you constantly. You'll be playing together and then he'll randomly just say, "Sissy I love you so much!" He's always talking about how cute you are and is so proud to tell people you are his sissy and your name is Elise anytime they are oohing and ahhing over you. When you wake up in the morning he likes to run into your room and sit in your elephant chair right by the crib. You crawl over and sit by the slats. Then he starts singing to you and telling you stories. It's such a precious thing and I dare not disturb it, so I stay wherever I am and watch you guys on the monitor. When he sings, you often times get on your knees and bounce up and down. You'll screech in response to his stories and many times you are both laughing. Usually he ends the time by climbing into your crib with you and then I come in to find you both standing, holding the rail, eagerly awaiting my arrival. He also likes to bring toys over to you and sits with you so you can play together. He'll sit by you with a book and read you books. Just today he fussed at me to get you out of the carrier at Bikes and Balls so you could play with him. He "could eat you up, he loves you so".

Carter woke up and came in the room during our photo shoot, can you tell where he was?!!?

You've had lots of new foods this month and I was a bit bad about not waiting the 3-4 days in between foods in case you had a reaction, that way we'd know for sure what you are allergic to. With the big stuff that I thought you may be allergic to, I've been more careful. Otherwise I just let you eat foods you can now try as we are eating them with a meal, it's easier that way. You had egg yolk on December 29th and you really liked it. I'm a bit anxious for you to try egg whites since that's what Carter was allergic to. You had cantaloupe for the first time. On January 15th you ate dark cherries and loved them. They may be a favorite right now. You had black beans January 17th and ate them all although you didn't act like they were anything special. January 18th you had cottage cheese. You ate some but for the most part tended to spit it back out. You've had rice cereal before, but had long grain brown rice for the first time on January 19th. You still love to eat and can eat a crazy amount! You had a well check on January 6th at 9.5 months. You weighed 17.4 pounds which put you in the 20th percentile and were 28.2 inches tall, putting you in the 65th percentile. Your head circumference has been just like your brothers, steadily inching up into the upper percentiles. It was 18.2 inches around which put you in the 94th percentile! The funny part of that is that Carter will randomly look at you and say, "Sissy's head is so big!" I don't think it looks big, though.

One of my favorite things is when your daddy passes you off to me and I go to give you a kiss only to find the smell of your daddy's chapstick on your cheeks. He loves you so much and I've loved seeing your relationship grow and change. Right now even though you are a bit of a momma's girl, aren't all babies at least a little?, I see that bit of a daddy's girl in there too. He seems to be wrapped around your finger just a little bit more than he was around your brother's. I think that comes with you being the second child so he's more confident with you and can enjoy you more without being scared or worried. Little Miss Elise, the baby of a million nicknames! The other day I called you Elise and your daddy pointed out how weird it was to hear me call you by your actual name. Usually it's Ereesers, Eeserson, Ereesykin, Ereesey Reesers, Reesey Reesers, Elisey, Elisey Leesers, Sissy, Sissapee, Eester, Issapee, Eseey Kay, or Sister. I had no idea your name would turn into so many nicknames. When we picked out your name I totally thought your nickname would be Ellie or Ellie Kay. I can't say I've ever called you either of those names! We all love you so much, sweet girl! You make our lives so much more fun and filled with love! 

Now on to Daddy:

Full steam ahead baby girl! You have been crawling for some time now, but you are so fast now it is unbelievable. You move on to new areas so often it is sometimes hard to keep an eye on you!

You also were a sweetie and let me be the one to see you pull to a stand first! Of course I saw you do it 2 or 3 times before anyone else did, so no one was believing me. Then, you did it in front of your Opa and now you do it all of the time! It was great that I got to see one of your firsts first!

You and your brother get along so well it just warms your mom's and my hearts. He does his best to watch out for you, but sometimes he gets too wound up and ends up hurting you. But, you are a tough little girl and it never phases you for long!

love you sweetie!

Wordless Wednesday

Jeremy Update:

Today was another stable day. Jeremy's ICP has been running a bit higher since they switched his drain over so it only drains outside of his body if his ICP is 20 or above. It only reached that point a couple times today. That's good as it means his body is able to take care of the cerebral spinal fluid on it's own. Of course since we've had some really good days, we got some bad news this morning. Jeremy has a blood clot in each of his arms. They thought he had a blood clot in his leg a while back and it turned out to just be an artifact as it was no longer there when they scanned him again. The blood clots today were confirmed and we are worried about the possibility of one or both of them breaking loose and traveling into his lungs. The trauma staff put him on a blood thinner due to the clots, but the neuro staff took him off because they had no way to ensure his brain wouldn't begin to bleed again. More bleeding could lead to more brain damage, so it's a bit of a lose-lose situation. We just have to hope the clots either go away or don't break lose. In exciting news they started weaning him off the pentobarbital and he is now at 3.75 mg per kg of body weight, down from 4.5 mg per kg of body weight yesterday! They are estimating it will take about 4 days to fully wean him assuming there are no set backs. Once he's weaned off the medicine they said it will take 15-50 hours for it to fully be out of his system. With the way he's been burning through drugs, we anticipate he will be on the shorter end of that range. He has been doing great with the decrease in pento with his ICP staying the same and more frequent patterns on the EEG. We are still hopeful he will have a decent amount of brain function when he comes out of this. With the amount of bleeding and trauma to his brain there could be any range of outcomes. We have been told there will definitely be some damage. Best case scenario would result in minor changes that only we notice. Worst case scenario would be very limited functioning. On a side note, my dad ended up in the ER last night with multiple hernias. So now on top of the surgery he had on his eye today, he will be having hernia surgery in the near future. My poor parents keep having more things added to their plates, but they are taking it all in stride. Keep up the prayers and positive thoughts!  

Eating a gingerbread man from Great Grandma.

 

 

 

 

 

 

 

Walking around on the art museum grounds.

Climbing trees on the art museum grounds.

 

 

 

Elise trying cherries for the first time.

 

 

 

Elise and I got to eat lunch with Captain America.

 

 

 

 

Carter was excited for our first shopping trip with Elise sitting beside him in the cart!

 

 

One of the sample was a container of mixed fruit, Carter saved back the apples for Elise because he knew she could eat them.

 

Carter sat down to read Elise some books while she played in the hall.

Carter telling Opa stories.

Elise first figuring out how to pull up to a stand.

 

Elise eating black beans for the first time.

 

Elise eating cottage cheese for the first time.

 

 

They both decided they wanted to take a shower with me. Elise kept trying to climb in and I didn't want her to get hurt, so I gave in!

Playing with a flashlight while we visited the cats at Uncie J's house.

Carter helped me clean Uncie J's house.

 

They had Mr. Jones surrounded.

 

Elise eating rice for the first time.

 

 

 

 

Oma made them matching mittens while visiting the hospital.

 

Carter was reading to Elise, but of course she crawled off when I took a picture.

 

Carter setting the table for guests.

 

With all the toys at the Children's Museum, Carter still stops to read books.

 

 

Elise trying a homemade potato wedge.

 

This is how she now greets me in the morning.

Elise waving good morning to me.

 

Now that she's figured it out, she's standing EVERYWHERE!

 

Tired and standing.

 

 

 

 

Carter trying to pull Elise up.

They made a friend.

 

 

 

 

Puzzle races for Oma's birthday.