Even in our darkest of days, it seems we have something to be thankful for, yet we are often so consumed by the fear, the pain, the suffering that we are unable to see the beauty and joy that surrounds us. Today, we take a moment to feel that beauty and embrace the joy--for today, Jen and Kyle were able to hold Finn again. This is Danielle writing again, but here's the updates I received from Jen:
- Today we enjoyed the highest peak in this journey. Jen and Kyle were able to hold Finn in their arms. It truly felt like the world stopped spinning, and nothing mattered but the love shared between parent and child, and husband and wife.
- Finn's breathing tube was removed this morning, and he seems to look good from a respiratory perspective. The doctor has said that he's on the trajectory toward improvement.
- The sedation medications continue to cause Finn a lot of pain and distress as his tiny body works to slowly eliminate them.
- This journey is not for the faint of heart. We are certain we will all come out of this stronger, but tonight our hearts are heavy as our little boy hurts and our big boy misses us and his brother.
- If you have a favorite passage or verse, a favorite poem or article, a favorite devotional or sermon, please send it to us. Those messages and words have provided so much comfort.
Over the past ten days, I've been wondering how things like this can happen, and last Saturday night, I talked with a pastor friend of mine, asking him to explain how we are to have faith, how we are to believe in something greater, when moments like this exist. In my mind, it compromises the idea that there is an omnibenevolent (all-good), omnipotent (all-powerful), omniscient (all-knowing) being out there. Yet, my friend responded, "Suffering changes us. It makes us see what truly matters and cuts the clutter from our lives. We aren't worried about the laundry on days like today. So we love, we care for one another, we sit in silence and know that's enough."
In Jen's update to me, she shared that she didn't know this kind of pain existed. She immediately followed that up with, "but I didn't know this kind of love existed either." While there have been moments in the course of this war that have tested the strength, faith, and resilience of Finn and his team, we choose to see the fruits of the love that surrounds him, especially now as he begins to turn the corner. Collectively, the people near and far that have found a moment to pray, send positive energy, read an inspirational quote--whatever it may have been--are supporting Finn, but also Jen, Kyle, and Everett (and their extended family), and all of this is what life is truly about. Today may very well be the first battle that Finn has won, but there are still several battles to go and a very long "war" ahead (to remain consistent in my metaphors!). And yes, there is no doubt that the suffering has changed us--more than we may ever realize. Yet, so has the love, and that love is what we will continue to thrive on.
#FinnStrong
#LoveWins
Saturday, January 31, 2015
Friday, January 30, 2015
Soon.
Finn has had an amazing day. He did outstading on the ERT this morning. Docs believe extubation is immient, probably tomorrow.
Please lift us up as we ask for a healthy, safe, and successful extubation (removal of the breathing tube).
#FinnStrong
#LoveWins
This will be the first of many milestones.
Please lift us up as we ask for a healthy, safe, and successful extubation (removal of the breathing tube).
#FinnStrong
#LoveWins
This will be the first of many milestones.
More Gratitude
Family.
Friends.
This journey continues, and we have so much comfort knowing that our big boy is taken care of. We've had to "raise our hand" a few times and ask for specific assistance. And we are grateful. So very grateful.
The continued comments, posts, notes, texts, and encouragement. I've received LOVE from people all over the world, from all phases of my life. So many of you shared your "I did it" stories. Stories about babies in the NICU. Stories about sitting bedside with a loved one. Stories of strength and love. And faith. And miracles.
An amazing team of gifted medical professionals. These people are brilliant. This facility is amazing.
Friends.
This journey continues, and we have so much comfort knowing that our big boy is taken care of. We've had to "raise our hand" a few times and ask for specific assistance. And we are grateful. So very grateful.
The continued comments, posts, notes, texts, and encouragement. I've received LOVE from people all over the world, from all phases of my life. So many of you shared your "I did it" stories. Stories about babies in the NICU. Stories about sitting bedside with a loved one. Stories of strength and love. And faith. And miracles.
An amazing team of gifted medical professionals. These people are brilliant. This facility is amazing.
Friday Update
Thanks to my sister for updating the blog last night. You've probably gathered that writing to process through this experience has been pretty cathartic to me. Yesterday I wrote, but not here. Instead, I wrote a letter to Finn. And I wrote a letter to my parents. And I wrote out some of my favorite words to really focus on as we hunkered down for another night in the PICU.
Sometime yesterday, just when I thought things couldn't get worse, they did. Our hearts were heavy. Morale was low. We were sad, scared, and tired. Our boy was fighting so hard, feeling so sick. My heart longed for time that Kyle and I could just be with each other and find strength in our love.
These words have carried us through the last few hours. Please join us in reciting these words. Add them to your prayers. Blast them on the radio. Enjoy them.
"Seems to me that God above created you for me to love
He picked you out from all the rest because he knew I'd love you best."
from the lullaby I See the Moon.
"Tell me everything will be okay if I just stay on my knees and keep praying.
Believing in something.
Tell me everything is taken care of by those qualified to take care of it all."
from Dive In by Dave Matthews Band
I've got pretty strong "anchors" to both of those songs, and the lyrics have provided me comfort and peace for many years.
Today's positives:
1. Acorn squah stuffed with wild rice and pecans for dinner (from the hospital cafeteria).
2. Kyle's exclamation, after he finished his dinner, "those brussel sprouts were actually really good."
3. A beautiful box of fruits and nuts arrived today. I've already devoured the greek yogurt covered almonds.
4. The Marines. Specifically, the Marines of Kyle's office. We needed helped with some logistics tomorrow, and within hours the Marines had a plan. We are so grateful for the command support that we've received during this time.
5. Smart Start basketball. Everett's at basketball tonight with some of his best people. I know he's having a great time, getting some of his "big feelings" out through gross motor activity, and enjoying the normalcy of Friday night.
6. Kyle and I found a lot of time to be with each other over the last 24 hours. Last night we sat together breathing and praying. We even spooned. In a recliner. In the PICU. I can't wait until Finn reads this someday and gets grossed out by that post. I can just hear him and Everett saying, "Eeeeewwwwww Mom!"
Sometime yesterday, just when I thought things couldn't get worse, they did. Our hearts were heavy. Morale was low. We were sad, scared, and tired. Our boy was fighting so hard, feeling so sick. My heart longed for time that Kyle and I could just be with each other and find strength in our love.
These words have carried us through the last few hours. Please join us in reciting these words. Add them to your prayers. Blast them on the radio. Enjoy them.
"Seems to me that God above created you for me to love
He picked you out from all the rest because he knew I'd love you best."
from the lullaby I See the Moon.
"Tell me everything will be okay if I just stay on my knees and keep praying.
Believing in something.
Tell me everything is taken care of by those qualified to take care of it all."
from Dive In by Dave Matthews Band
I've got pretty strong "anchors" to both of those songs, and the lyrics have provided me comfort and peace for many years.
Today's positives:
1. Acorn squah stuffed with wild rice and pecans for dinner (from the hospital cafeteria).
2. Kyle's exclamation, after he finished his dinner, "those brussel sprouts were actually really good."
3. A beautiful box of fruits and nuts arrived today. I've already devoured the greek yogurt covered almonds.
4. The Marines. Specifically, the Marines of Kyle's office. We needed helped with some logistics tomorrow, and within hours the Marines had a plan. We are so grateful for the command support that we've received during this time.
5. Smart Start basketball. Everett's at basketball tonight with some of his best people. I know he's having a great time, getting some of his "big feelings" out through gross motor activity, and enjoying the normalcy of Friday night.
6. Kyle and I found a lot of time to be with each other over the last 24 hours. Last night we sat together breathing and praying. We even spooned. In a recliner. In the PICU. I can't wait until Finn reads this someday and gets grossed out by that post. I can just hear him and Everett saying, "Eeeeewwwwww Mom!"
Thursday, January 29, 2015
Keep Running
According to Robert Burns, even "the best laid schemes o' mice an' men/ often go awry," and today, Finn has reminded us of this. As Jen mentioned in yesterday's blog post, the doctors had a plan: today would be another ERT (Extubation Readiness Test) and they'd continue lowering the ventilator's levels while weaning him from the medicines easing his pain. However, just like Burns says, even the best laid plans often go awry. Today, Finn reminded us of this.
As an outsider who sits by the phone (or sometimes the computer) awaiting updates, this process has been difficult, yet I can't imagine what the battle is like on the front lines. Yet, as I keep trying to remind myself, we must all be patient. While plans are a often a good thing--they help us remain focused on our goals. They provide us with direction. And often times, they provide us with a sense of peace because we can see the destination ahead. Yet, as said, Finn told us that the plan that was in place wasn't the best plan for him, and now, the doctors are reassessing and changing course. This is a moment where our patience is especially important.
Because sometimes, this happens. We change direction. This might deter the focus a bit. It might create a hiccup in the timeline we had been planning to execute. It might give us reason to feel frustrated, disappointed, even angry. Yet, the destination still remains, and we will not allow those negative emotions to hinder the progress that has been made or that remains on the horizon.
For we know that Finn is a warrior. And warriors remain undaunted.
As I am finding out secondhand, the process of withdraw that Finn is battling is excruciating and heartbreaking to watch. As many of you with children can imagine, it is quite possibly the most painful thing a parent can sit by and watch. The helplessness being nearly as heartbreaking as the visible pain the child endures. Unfortunately, this process is one that Finn must move past, no matter how undesirable the circumstances may be. Finn must safely process and eliminate the sedation drugs from his body before he attempts another ERT. Finn's infant body can only manage one battle at a time, and the lowering the levels of the ventilator to attempt another ERT will be a challenge enough. When Finn has conquered one battle, he'll move onto the next.
Despite these challenges, we (Finn's team) embrace the positives. Here are today's from Jen:
- Katie, today's nurse, was strong Midwest stock. She grew up in South Dakota, went to school at the University of Minnesota, and used to work at the University of Iowa's PICU. Finn's local team all laughed about the Iowa/Iowa State rivalry. All agreed that the Cyhawk trophy may make its home in Ames for most competitions, but it belongs in Iowa City when it comes to the PICU Cyhawk award...
- Katie continued on to say, "I'm a gopher, and I hate Wisconsin!"(I'm certain she done pissed off Grandpa Jacke with that comment...but then again, he probably would have already claimed that she was "his love," so it was likely a wash in the end.)
- Jen got to see Everett today. She picked him up from school, played games, and snuggled.
- The attending was pleased with Finn's level of alertness.
Jen listed one of her positives as "One day here is one day closer to recovery. One day closer to going home." And this is most certainly a positive. While the days are long, each moment testing the strength and resilience of those on Finn's team, we must find ourselves clinging to the hope and faith that this battle is progressing, even if we don't agree with its pace. We must comfort ourselves in the belief that the route the battle takes, albeit filled with challenges and obstacles, is the route that leads to the ultimate destination we are all praying for--Finn's full recovery and homecoming. As a runner, I very much know that the race does not always go to the most swift, but rather, sometimes, it goes to the one who keeps running. Finn is still running.
Despite the difficulties of today's battle, despite the changes in plans, despite the shift in direction, Finn runs. And he runs his own race, at his pace, the pace that his lungs will allow.
Tonight, we continue to pray that Finn takes deep breaths full of rich, nourishing air.
Tonight, we pray that Finn feels comfort and peace as his body works alongside the miracle of medicine to beat this illness.
But most of all, tonight we believe in #FinnStrong. Tonight we know that #LoveWins.
As an outsider who sits by the phone (or sometimes the computer) awaiting updates, this process has been difficult, yet I can't imagine what the battle is like on the front lines. Yet, as I keep trying to remind myself, we must all be patient. While plans are a often a good thing--they help us remain focused on our goals. They provide us with direction. And often times, they provide us with a sense of peace because we can see the destination ahead. Yet, as said, Finn told us that the plan that was in place wasn't the best plan for him, and now, the doctors are reassessing and changing course. This is a moment where our patience is especially important.
Because sometimes, this happens. We change direction. This might deter the focus a bit. It might create a hiccup in the timeline we had been planning to execute. It might give us reason to feel frustrated, disappointed, even angry. Yet, the destination still remains, and we will not allow those negative emotions to hinder the progress that has been made or that remains on the horizon.
For we know that Finn is a warrior. And warriors remain undaunted.
As I am finding out secondhand, the process of withdraw that Finn is battling is excruciating and heartbreaking to watch. As many of you with children can imagine, it is quite possibly the most painful thing a parent can sit by and watch. The helplessness being nearly as heartbreaking as the visible pain the child endures. Unfortunately, this process is one that Finn must move past, no matter how undesirable the circumstances may be. Finn must safely process and eliminate the sedation drugs from his body before he attempts another ERT. Finn's infant body can only manage one battle at a time, and the lowering the levels of the ventilator to attempt another ERT will be a challenge enough. When Finn has conquered one battle, he'll move onto the next.
Despite these challenges, we (Finn's team) embrace the positives. Here are today's from Jen:
- Katie, today's nurse, was strong Midwest stock. She grew up in South Dakota, went to school at the University of Minnesota, and used to work at the University of Iowa's PICU. Finn's local team all laughed about the Iowa/Iowa State rivalry. All agreed that the Cyhawk trophy may make its home in Ames for most competitions, but it belongs in Iowa City when it comes to the PICU Cyhawk award...
- Katie continued on to say, "I'm a gopher, and I hate Wisconsin!"(I'm certain she done pissed off Grandpa Jacke with that comment...but then again, he probably would have already claimed that she was "his love," so it was likely a wash in the end.)
- Jen got to see Everett today. She picked him up from school, played games, and snuggled.
- The attending was pleased with Finn's level of alertness.
Jen listed one of her positives as "One day here is one day closer to recovery. One day closer to going home." And this is most certainly a positive. While the days are long, each moment testing the strength and resilience of those on Finn's team, we must find ourselves clinging to the hope and faith that this battle is progressing, even if we don't agree with its pace. We must comfort ourselves in the belief that the route the battle takes, albeit filled with challenges and obstacles, is the route that leads to the ultimate destination we are all praying for--Finn's full recovery and homecoming. As a runner, I very much know that the race does not always go to the most swift, but rather, sometimes, it goes to the one who keeps running. Finn is still running.
Despite the difficulties of today's battle, despite the changes in plans, despite the shift in direction, Finn runs. And he runs his own race, at his pace, the pace that his lungs will allow.
Tonight, we continue to pray that Finn takes deep breaths full of rich, nourishing air.
Tonight, we pray that Finn feels comfort and peace as his body works alongside the miracle of medicine to beat this illness.
But most of all, tonight we believe in #FinnStrong. Tonight we know that #LoveWins.
Wednesday, January 28, 2015
I appreciate a smile
28 January 6:00 p.m. update
Apologies for the delayed update today. Finn has needed me (and all of his local supporters) by his bedside for most of the day. He's starting to wake up and working really hard to breath on his own. He's making progress. He's coming off sedation which involves a whole lotta side effects and some pretty scary details. I'll spare you.
This morning, Finn completed an ERT (extubation readines test). He did well on the test, but I prefer to think of it as an assessment rather than a test. Test implies a "pass or a fail" result. Assessment means the team of gifted medical professional can better inform their plan for the day, after seeing the results. He did breath on his own for two hours during the test, but he was really working hard. The clear results of this assessment were that he needed more time to build strength and work with the machines. He's slated for another ERT tomorrow morning.
Kyle and I were on pins and needles as we prepared for the test. The moment the Respiratory Therapist turned down the machine I found myself wretching in the bathroom. I've never wretched like that before, but I guess the sakes have never been so high.
Finn has worked hard today, and he's making progress. He will have another ERT tomorrow morning between 0600-0800 ET. Please lift us up during that time. If nothing else, take a few deep breathes in Finn's honor. Send him oxygen rich breaths and imagine his entire lung rising and falling, filling full of beautiful air. I know your presence is with us, and we will really need your prayers, thoughts, words, and deeds tomorrow morning. Don't worry, I'll be sure let you know if I wretch again!
Right now the medical professionals are working to find the "sweet spot" as they wean him off sedation and adjust the ventilator settings. And, remember, he's still fighting a nasty virus. He's still got lots of junk in his lungs from the illness that put him here in the first place.
But, now, let's go to happy. Let's go to strength.
When Kyle was at The Basic School and we were engaged to be married, he would step outside his room to call as allowed. One of his friends joked that "Kyle was on post again," meaning that Kyle was standing outside of the barracks in the one little corner where he had cell phone signal. Another friend who overheard the joke about Kyle's post responded and said, "Yeah, but he loves, no, he really loves his fiance." So last night as Kyle and I sat together in the chapel, holding each and believing in Finn this memory came to mind. And we decided that we didn't just believe, but we really believed.
I appreciate a smile.
The professionals in the PICU speak a foreign language. Sometimes they translate. We had a pretty steep learning curve, but we seem to be tracking now. So, one of my favorite phrases the doctors and nurse use involves the word "appreciate." They don't use it like you and I use it. They use "appreciate" to me, "yes, I agree" or "yes, I've observed that and agree." But the first few times I heard it I thought is almost sounded condescending (because I was operating from my understanding of appreciate, not theirs).This afternoon, with some of his very best people at his bedside Finn smiled. Earlier this week, when a little fear and despair found it's way in I wondered if I would ever see Finn smile again. And, just hours ago, while lots of love on his side, Finn smiled. I confidently looked at the nurse and said, "Susan, I appreciate a smile." She chuckled a bit, looked at me and said "Yes, I appreciate a smile." And then there were tears of joy.
Appreciate your smiles, folks.
I'll leave you with this, another bit of encouragement I've received in the last few days . . . "You never know how strong you are until strong is the only choice you have."
Tuesday, January 27, 2015
27 January 2015 PM update
The words are not coming easy tonight.
I can tell you I had a great time with my big boy earlier today. We played "hot potato" and worked on a craft. We read stories together and rocked. I can tell you I was holding him so tightly.
We've learned a lot about the whole "breathing by a ventilator" thing. Today the team explained the phases of intubation, of which there are three. The first phase of intubation is the acute phase. Next, you reach the plateau phase. Finally, the wean to extubate phase. We are in the plateau phase. There are many extubation "trials" before the breathing tube is removed. We've also learned a lot about the "sweet spot" of sedation. Well, perhaps "sweet spot" isn't the right term. Basically, the body has to be awake enough to work the lungs and diaphram, but not so awake that the baby gets agitated by all of the tubes and lines running in and out. The nurse explained that we are at a point where they really have to perfect the "art" of the ventilator, sedation, etc. The science has been running things so far, and now is the time for art and science to work together.
We've had a lot of questions about the timeline for all of this. I wish we had a timeline, but Finn will tell us when he's ready. He and the doctors continue to work together toward a full recovery.
We are currently approaching the one week mark. And that's terrifying. A week since I held my baby. A week since I sat with him and nursed him in my arms. A week since Kyle and I slept next to each other and held each other in our arms. A week since our perfect little family sat together at our dinner table, joined hands, and blessed our meal. A week since I hollered at Rex for constantly being underfoot! We aren't there yet, but it's fast approaching.
Finn will tell us when he's ready.
One day at a time.
He made a lot of progress earlier, but maybe he was running sprints, and now he's taking some time to recover. Maybe he'll run a few sprints again in a bit.
A friend reminded me earlier "he's got a freaking army (errrr. . . Special Purpose MAGTF) of support behind him."
He's a strong warrior.
For now, Kyle and I are settling in for a long night. In a few minutes, we will sit together and breathe and pray.
Our nurse tonight is an "Army brat" and her grandparents live in Okinawa. She's telling us stories about spending her summers in Okinawa and working in her Obasan and Ojisan's (grandparents) sushi shop. Talking with her took me to a happy place. She's normally a NICU nurse, so she has a lot of experience with babies.
I can tell you I had a great time with my big boy earlier today. We played "hot potato" and worked on a craft. We read stories together and rocked. I can tell you I was holding him so tightly.
We've learned a lot about the whole "breathing by a ventilator" thing. Today the team explained the phases of intubation, of which there are three. The first phase of intubation is the acute phase. Next, you reach the plateau phase. Finally, the wean to extubate phase. We are in the plateau phase. There are many extubation "trials" before the breathing tube is removed. We've also learned a lot about the "sweet spot" of sedation. Well, perhaps "sweet spot" isn't the right term. Basically, the body has to be awake enough to work the lungs and diaphram, but not so awake that the baby gets agitated by all of the tubes and lines running in and out. The nurse explained that we are at a point where they really have to perfect the "art" of the ventilator, sedation, etc. The science has been running things so far, and now is the time for art and science to work together.
We've had a lot of questions about the timeline for all of this. I wish we had a timeline, but Finn will tell us when he's ready. He and the doctors continue to work together toward a full recovery.
We are currently approaching the one week mark. And that's terrifying. A week since I held my baby. A week since I sat with him and nursed him in my arms. A week since Kyle and I slept next to each other and held each other in our arms. A week since our perfect little family sat together at our dinner table, joined hands, and blessed our meal. A week since I hollered at Rex for constantly being underfoot! We aren't there yet, but it's fast approaching.
Finn will tell us when he's ready.
One day at a time.
He made a lot of progress earlier, but maybe he was running sprints, and now he's taking some time to recover. Maybe he'll run a few sprints again in a bit.
A friend reminded me earlier "he's got a freaking army (errrr. . . Special Purpose MAGTF) of support behind him."
He's a strong warrior.
For now, Kyle and I are settling in for a long night. In a few minutes, we will sit together and breathe and pray.
Our nurse tonight is an "Army brat" and her grandparents live in Okinawa. She's telling us stories about spending her summers in Okinawa and working in her Obasan and Ojisan's (grandparents) sushi shop. Talking with her took me to a happy place. She's normally a NICU nurse, so she has a lot of experience with babies.
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