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.
No Hill for a Climber
Update from morning rounds:
Finn is a setting trends. He beat yesterday's 24 hour goal by hours. He's kicking butt and taking names (they start with R, S, and V) right now. Remember the blog post "Lessons from the PICU?" It's all about trends.
Finn's working some more goals today. They include multiple ventilator settings, and a reduction of sedation. Please pray that our boy can be weaned off the sedation drugs naturally. There have been a couple discussions involving the drugs methadone and ativan. We pray Finn, along with the doctors and nurses, can do this without the support of withdrawl drugs.
Here are a few of my positives to start the day.
1. I slept. A lot. Well, a lot of 3-4 hours blocks. I feel more rested than I have in days.
2. Last night as I was drifting off to sleep in the recliner I heard the night nurse and Kyle giving Finn a bath. Kyle got to wash Finn's hair, and Finn's eyes were open ever so slightly. Kyle told me that Finn was tracking him with his eyes. Finny knew it was daddy who was washing his hair.
3. Finn's working his goals. He already BEAT the 24 hour goal from yesterday morning! I could tell you all of the numbers and settings, etc, but it's a lot of jargon and medical terms. The docs will set some more goals today, one of which may include reducing his level of sedation. (Wow. Could that goal be more vague?!).
Hallelujah. Glory to God in the highest.
4. I had a delicious dinner last night. Vegetable lentil soup made from my own home. It was so hearty and filling.
5. Kyle spent a lot of time with Everett yesterday. They played games, ate dinner, played monster trucks (talk about a trend!), had a bath, and read stories.
6. Kyle just served me breakfast in bed. Well, bagels and coffee on the rolling tray table that fits nicely in front of the recliner. So, breakfast in bed. :-)
7. DC is having a snow day. Iowans, don't get confused. DC snow days are a bit laughable. But, even though we are having a snow day and schools are closed, nurse Susan is here. And, nurse Susan is the one who feels so confident in Finn's ability to slowly wean off sedation.
8. Day by day in every way Finn is better and better.
9. 1st Corinthians 13.
Finn Strong
Love Wins
Finn is a setting trends. He beat yesterday's 24 hour goal by hours. He's kicking butt and taking names (they start with R, S, and V) right now. Remember the blog post "Lessons from the PICU?" It's all about trends.
Finn's working some more goals today. They include multiple ventilator settings, and a reduction of sedation. Please pray that our boy can be weaned off the sedation drugs naturally. There have been a couple discussions involving the drugs methadone and ativan. We pray Finn, along with the doctors and nurses, can do this without the support of withdrawl drugs.
Here are a few of my positives to start the day.
1. I slept. A lot. Well, a lot of 3-4 hours blocks. I feel more rested than I have in days.
2. Last night as I was drifting off to sleep in the recliner I heard the night nurse and Kyle giving Finn a bath. Kyle got to wash Finn's hair, and Finn's eyes were open ever so slightly. Kyle told me that Finn was tracking him with his eyes. Finny knew it was daddy who was washing his hair.
3. Finn's working his goals. He already BEAT the 24 hour goal from yesterday morning! I could tell you all of the numbers and settings, etc, but it's a lot of jargon and medical terms. The docs will set some more goals today, one of which may include reducing his level of sedation. (Wow. Could that goal be more vague?!).
Hallelujah. Glory to God in the highest.
4. I had a delicious dinner last night. Vegetable lentil soup made from my own home. It was so hearty and filling.
5. Kyle spent a lot of time with Everett yesterday. They played games, ate dinner, played monster trucks (talk about a trend!), had a bath, and read stories.
6. Kyle just served me breakfast in bed. Well, bagels and coffee on the rolling tray table that fits nicely in front of the recliner. So, breakfast in bed. :-)
7. DC is having a snow day. Iowans, don't get confused. DC snow days are a bit laughable. But, even though we are having a snow day and schools are closed, nurse Susan is here. And, nurse Susan is the one who feels so confident in Finn's ability to slowly wean off sedation.
8. Day by day in every way Finn is better and better.
9. 1st Corinthians 13.
Finn Strong
Love Wins
Monday, January 26, 2015
Gratitude
Friends and Family.
Wow. I feel so much gratitude for your thoughts, prayers, words. I received so much encouragement today from people all over the world, and from every phase of my life. I'm feeling truly humbled by y'all.
Finn has had a good day. Sue, our day nurse just left, and she was very positive about Finn's progress. He's still working toward a big goal, and we should know more tomorrow morning about his progress. We are still days away from extubation, but he's doing great.
And . . . just cuz in this situation I'm completely okay with being "that mom" . . . I'll tell you that Finn pooped TWICE today! Yeah!
I thought I would mix it up with this evening's post and share some humor with you. I'm not sure if this stuff is actually funny, or if it's only funny when you are in PICU delirium.
* This morning on rounds the Attending asked the Pharmacist if she had any concerns or suggestions. This was after a discussion of the sedation drugs (narcotics), the antibiotics, the diuretic, and all of the other stuff they are administering as needed. The Pharmacist said, "Let's get him started on a multivitamin." Kyle and I had a little laugh about that. So . . . take your vitamins!!
* Sue is our day nurse. We really like her. She's another one of those "gets sh*t done" people you want on your team. Her eleven year old son is a wrestler and he had a meet yesterday. Another staff member was talking about her days (in the 70s) as a wrestling cheerleader. I had a good laugh thinking about my mom's and aunties' stories of their days as wrestling cheerleaders. So . . . I looked up YouTube videos of wrestling cheerleaders. My favorite was D-E-T-E-R-M-N-A-T-I-O-N, Determination. I couldn't quite get the hand clap down, but I tried. Finn needed a cheerleader today, and doing it with a little levity was fun. Sue was even cheering about his "peak pressures" (ventilator jargon) and his "tidal volumes" (more vent jargon). She stood at the end his bed and had arm movements and everything.
* Okay . . . this one's not so funny, but is a good reminder about basic tact. I got on the elevator to go get a cup of tea and this woman looked at me and said, "we are you due?" OMG!!! I looked her square in the eyes and said, "I'm not pregnant. My baby is eight weeks old and in the ICU." She was stunned. If only I had been quick enough on my feet to tell her about the PICU diet.
* Speaking of the PICU diet . . . Kyle's been munching on my lactation cookies. I understand he wants to do EVERYTHING he can for baby Finn, but lactate, really?! Just saying.
Wow. I feel so much gratitude for your thoughts, prayers, words. I received so much encouragement today from people all over the world, and from every phase of my life. I'm feeling truly humbled by y'all.
Finn has had a good day. Sue, our day nurse just left, and she was very positive about Finn's progress. He's still working toward a big goal, and we should know more tomorrow morning about his progress. We are still days away from extubation, but he's doing great.
And . . . just cuz in this situation I'm completely okay with being "that mom" . . . I'll tell you that Finn pooped TWICE today! Yeah!
I thought I would mix it up with this evening's post and share some humor with you. I'm not sure if this stuff is actually funny, or if it's only funny when you are in PICU delirium.
* This morning on rounds the Attending asked the Pharmacist if she had any concerns or suggestions. This was after a discussion of the sedation drugs (narcotics), the antibiotics, the diuretic, and all of the other stuff they are administering as needed. The Pharmacist said, "Let's get him started on a multivitamin." Kyle and I had a little laugh about that. So . . . take your vitamins!!
* Sue is our day nurse. We really like her. She's another one of those "gets sh*t done" people you want on your team. Her eleven year old son is a wrestler and he had a meet yesterday. Another staff member was talking about her days (in the 70s) as a wrestling cheerleader. I had a good laugh thinking about my mom's and aunties' stories of their days as wrestling cheerleaders. So . . . I looked up YouTube videos of wrestling cheerleaders. My favorite was D-E-T-E-R-M-N-A-T-I-O-N, Determination. I couldn't quite get the hand clap down, but I tried. Finn needed a cheerleader today, and doing it with a little levity was fun. Sue was even cheering about his "peak pressures" (ventilator jargon) and his "tidal volumes" (more vent jargon). She stood at the end his bed and had arm movements and everything.
* Okay . . . this one's not so funny, but is a good reminder about basic tact. I got on the elevator to go get a cup of tea and this woman looked at me and said, "we are you due?" OMG!!! I looked her square in the eyes and said, "I'm not pregnant. My baby is eight weeks old and in the ICU." She was stunned. If only I had been quick enough on my feet to tell her about the PICU diet.
* Speaking of the PICU diet . . . Kyle's been munching on my lactation cookies. I understand he wants to do EVERYTHING he can for baby Finn, but lactate, really?! Just saying.
Family and Friends,
During this morning’s “rounds” we received encouraging news. The doctor who was the first to see Finn when he arrived, and who knew him at his worst, gave us a very big and reassuring full face smile after looking over all of his charts today. He is not out of the woods yet, but he is on the mend and the doctors are very encouraged.
Finn has been making slow but steady progress in beating this virus, and he is approaching a major milestone. Pray for continued progress toward that goal.
Thank you all for the continued prayers, love and support. Hug your babies tight and give them big kisses.
Love Wins!
Kyle and Jen
During this morning’s “rounds” we received encouraging news. The doctor who was the first to see Finn when he arrived, and who knew him at his worst, gave us a very big and reassuring full face smile after looking over all of his charts today. He is not out of the woods yet, but he is on the mend and the doctors are very encouraged.
Finn has been making slow but steady progress in beating this virus, and he is approaching a major milestone. Pray for continued progress toward that goal.
Thank you all for the continued prayers, love and support. Hug your babies tight and give them big kisses.
Love Wins!
Kyle and Jen
25 Jan PM updates
25 January p.m. updates
today's positives
Kyle and Everett spent the day together at Monster Jam (a monster truck show). Upon his return to the hospital, Kyle shared pictures and videos and stories relaying the joy in Everett's eyes and the enjoyment Kyle had with our first baby.
My best people were here with me to hug me and hold me and make sure I ate and help me leave the building for a little bit. We couldn't feel more supported right now
Finn has had a really uneventful day which in the ICU means it's been a good day he is resting and working and fighting . I know that the light and love and prayers and hope are here with him
Our birth Doula just met me in the hospital chapel and offered a massage and some reflexology to help me relax, help me sleep, and help me make milk. She's working with Kyle on relaxation massage now. Both mama and daddy will get some sleep tonight.
We have pictures of Finn pre-RSV hanging in our room. And, we have a focal point. One of our bucket list family vacations is a hiking/camping trip through Denali NP. More on that focal point later . . .
Tony
Tony, a navy veteran, was our day nurse. Tony was a great fit for Kyle and a great fit with our family. He was organized, clear, and concise. He had a method. He got sh*t done. We didn't feel like he was sugarcoating anything, so when he said goodbye at the end of his shift and said, "Finn had a great day" it meant a lot. Getting to know Tony yesterday was great -- he's one of our country's successfully transitioned veterans. He made a drastic career change after the military. He used his Post 9/11 GI Bill to do it. Meeting him yesterday just reminded me that Kyle and I have been living right. We do good, and good begets good.
Love Wins.
Finn Strong.
today's positives
Kyle and Everett spent the day together at Monster Jam (a monster truck show). Upon his return to the hospital, Kyle shared pictures and videos and stories relaying the joy in Everett's eyes and the enjoyment Kyle had with our first baby.
My best people were here with me to hug me and hold me and make sure I ate and help me leave the building for a little bit. We couldn't feel more supported right now
Finn has had a really uneventful day which in the ICU means it's been a good day he is resting and working and fighting . I know that the light and love and prayers and hope are here with him
Our birth Doula just met me in the hospital chapel and offered a massage and some reflexology to help me relax, help me sleep, and help me make milk. She's working with Kyle on relaxation massage now. Both mama and daddy will get some sleep tonight.
We have pictures of Finn pre-RSV hanging in our room. And, we have a focal point. One of our bucket list family vacations is a hiking/camping trip through Denali NP. More on that focal point later . . .
Tony
Tony, a navy veteran, was our day nurse. Tony was a great fit for Kyle and a great fit with our family. He was organized, clear, and concise. He had a method. He got sh*t done. We didn't feel like he was sugarcoating anything, so when he said goodbye at the end of his shift and said, "Finn had a great day" it meant a lot. Getting to know Tony yesterday was great -- he's one of our country's successfully transitioned veterans. He made a drastic career change after the military. He used his Post 9/11 GI Bill to do it. Meeting him yesterday just reminded me that Kyle and I have been living right. We do good, and good begets good.
Love Wins.
Finn Strong.
FAQs
Yes, I did that. Here are some answers to the your most asked questions.
Q: Any idea when he will be coming home?
A: No, no idea, no timeline. We'll got a lot of milestones to reach before we will have an idea of his recovery timeline. But, we do know he will come home. Whatever that looks like and whenever that happens will be just fine. Because he will come home.
We do know that Finn works on his own timeline. It took more than two years to conceive our little Finn. His labor and delivery was much longer than Everett's. But . . . when Finn decided he was ready to enter the world he came with gusto! We hope he'll do the same when he turns the corner of this illness.
Q: How long had he been sick?
A: He'd been congested with "just cold" for a few days. We were not concerned about it until Monday night/Tuesday morning when I took him in to his primary clinic. We saw a doc and explained the symptoms. The doc examined him and said his "lungs were clear." He did not have a fever. The next morning I took him to the ER. Multiple docs examined him in the ER and multiple tests were conducted (including an RSV test). All of the tests were negative and the doc interpreting the chest xray said, unequivocally, "this is not a pneumonia. It's 'just a cold'." We were discharged. Less than 6 hours later he had spiked a fever and was in complete respiratory failure. Less than 10 hours after our initial discharge he was in a trauma room, surrounding by 14 docs, nurse, techs, etc and they were saying things like "ma'am, were doing everything we can" and asked me to summon Kyle to that ER immediately. Something like "your husband needs to be here with you as soon as possible." It was the stuff that parents' worst nightmares of made of, but worse than that.
Q: What can I do to help?
A: Keep our family in your prayers, thoughts, words, and deeds. Do what you do when someone you love is hurting. Send us encouragement --- a note, text, Facebook post, comment on the blog. We kept this information private for a few days, but all of us need support. We have a network of friends and family all over the world. So, if you think of us, reach out. Trust me, you aren't "bothering me." I will respond if I can, but do know that I have reach and appreciated every single message we've received.
Choose love. Hug your babies. Then hug 'em again. One more time for good measure. Pick up the phone and call that person you haven't spoken with in awhile. Choose love.
If you are nearby and can offer support to Everett and our team of people back at the house let me know. If you can reasonably meet Kyle or I at the hospital (or home) for lunch, coffee, or to drop off a meal, thank you! Most of you reaching out have beautiful babies of your own, and the PICU during cold/flu season is no place for visitors. We have a long road ahead and look forward to our playdates after Finn is recovered and far, far away from the hospital.
Remember us in six weeks, when we are still coping with this experience. Check in with us then.
Wash your hands. Cover your mouth (with your elbow, not your hands). Listen to your gut and your mama's (or daddy's) intuition.
Hug your babies.
Q: What's the set up at the hospital like?
A: Real answer -- the PICU is the saddest place I've ever been. So many kids with so many different critical illnesses. I wouldn't wish this experience on my worst enemy. Well, unless my worst enemy's baby was critically ill, in which case I'd pray that my worst enemy's baby recovered.
I can't stay in that sad place for long.
So, let me tell you everything that is great about our set up. We have a recliner in Finn's room, where we can sit, and sleep. There is a sleeping room down the hall (more of the same recliners) and it is pitch black 24/7. We have access to a washer and dryer, refrigerators, microwaves, keurigs, showers, towels, and fresh linens. I have a hospital grade breast pump and can sit near Finn when I'm pumping. Often, when I start pumping he starts moving his little mouth and has a sedated version of his natural suckling reflex. I believe he can smell the milk and is dreaming of being in mamas arms with those big, giant milking machines near him.
Q: How are you and Kyle holding up?
A: We have faith that Finn will go home. And most of the day, most of the night, through most of the conversations with docs, nurse, and techs we hold strong to that faith. But we break. We cry. We question. We pray. We breathe. In the early moments of this crisis we promised each other that no matter what happens we will be stronger parents for this. No matter what happens we will be stronger partners for this. And, no matter what happens our family will be stronger for this experience.
My eyes are more bloodshot than I even knew was possible. We're both on different versions of the "PICU Diet." Kyle's relies heavily on potato chips, hot dogs, coffee, and chocolate. I'm sticking to small meals of yogurt, granola, fruits, veggies, bagels, hard boiled eggs. I don't either of us has much of an appetite. Yesterday I didn't have a ounce of coffee. That won't happen again.
We have a lot of support here right now. Kyle and I are both resting as much as possible.We are trading shifts at the hospital. So far, at least one of us has seen Everett every day since this started. I'm pumping every 4-5 hours, so my rest is in small stretches. Last night, our birth doula came to the hospital and gave each of us a massage. Another friend is working on a healing and restorative yoga series for me.
Kyle and I turned toward each other and chose love a long time ago. That doesn't mean our marriage is perfect, but we know how to choose love, and we know the power of love.
Don't get me wrong . . . this sucks!
Q: How is Everett?
A: He is in the best hands. He's doing okay. We have a strong vernacular to discuss fears, concerns, questions and I am confident in the foundation we've given Everett. He will talk to us (or his people) when he's having "big feelings." He loves Finn so much, and he asks about when Finn will come home every day. There are some outstanding professionals here who will help us help Everett with this.
Q: Any idea when he will be coming home?
A: No, no idea, no timeline. We'll got a lot of milestones to reach before we will have an idea of his recovery timeline. But, we do know he will come home. Whatever that looks like and whenever that happens will be just fine. Because he will come home.
We do know that Finn works on his own timeline. It took more than two years to conceive our little Finn. His labor and delivery was much longer than Everett's. But . . . when Finn decided he was ready to enter the world he came with gusto! We hope he'll do the same when he turns the corner of this illness.
Q: How long had he been sick?
A: He'd been congested with "just cold" for a few days. We were not concerned about it until Monday night/Tuesday morning when I took him in to his primary clinic. We saw a doc and explained the symptoms. The doc examined him and said his "lungs were clear." He did not have a fever. The next morning I took him to the ER. Multiple docs examined him in the ER and multiple tests were conducted (including an RSV test). All of the tests were negative and the doc interpreting the chest xray said, unequivocally, "this is not a pneumonia. It's 'just a cold'." We were discharged. Less than 6 hours later he had spiked a fever and was in complete respiratory failure. Less than 10 hours after our initial discharge he was in a trauma room, surrounding by 14 docs, nurse, techs, etc and they were saying things like "ma'am, were doing everything we can" and asked me to summon Kyle to that ER immediately. Something like "your husband needs to be here with you as soon as possible." It was the stuff that parents' worst nightmares of made of, but worse than that.
Q: What can I do to help?
A: Keep our family in your prayers, thoughts, words, and deeds. Do what you do when someone you love is hurting. Send us encouragement --- a note, text, Facebook post, comment on the blog. We kept this information private for a few days, but all of us need support. We have a network of friends and family all over the world. So, if you think of us, reach out. Trust me, you aren't "bothering me." I will respond if I can, but do know that I have reach and appreciated every single message we've received.
Choose love. Hug your babies. Then hug 'em again. One more time for good measure. Pick up the phone and call that person you haven't spoken with in awhile. Choose love.
If you are nearby and can offer support to Everett and our team of people back at the house let me know. If you can reasonably meet Kyle or I at the hospital (or home) for lunch, coffee, or to drop off a meal, thank you! Most of you reaching out have beautiful babies of your own, and the PICU during cold/flu season is no place for visitors. We have a long road ahead and look forward to our playdates after Finn is recovered and far, far away from the hospital.
Remember us in six weeks, when we are still coping with this experience. Check in with us then.
Wash your hands. Cover your mouth (with your elbow, not your hands). Listen to your gut and your mama's (or daddy's) intuition.
Hug your babies.
Q: What's the set up at the hospital like?
A: Real answer -- the PICU is the saddest place I've ever been. So many kids with so many different critical illnesses. I wouldn't wish this experience on my worst enemy. Well, unless my worst enemy's baby was critically ill, in which case I'd pray that my worst enemy's baby recovered.
I can't stay in that sad place for long.
So, let me tell you everything that is great about our set up. We have a recliner in Finn's room, where we can sit, and sleep. There is a sleeping room down the hall (more of the same recliners) and it is pitch black 24/7. We have access to a washer and dryer, refrigerators, microwaves, keurigs, showers, towels, and fresh linens. I have a hospital grade breast pump and can sit near Finn when I'm pumping. Often, when I start pumping he starts moving his little mouth and has a sedated version of his natural suckling reflex. I believe he can smell the milk and is dreaming of being in mamas arms with those big, giant milking machines near him.
Q: How are you and Kyle holding up?
A: We have faith that Finn will go home. And most of the day, most of the night, through most of the conversations with docs, nurse, and techs we hold strong to that faith. But we break. We cry. We question. We pray. We breathe. In the early moments of this crisis we promised each other that no matter what happens we will be stronger parents for this. No matter what happens we will be stronger partners for this. And, no matter what happens our family will be stronger for this experience.
My eyes are more bloodshot than I even knew was possible. We're both on different versions of the "PICU Diet." Kyle's relies heavily on potato chips, hot dogs, coffee, and chocolate. I'm sticking to small meals of yogurt, granola, fruits, veggies, bagels, hard boiled eggs. I don't either of us has much of an appetite. Yesterday I didn't have a ounce of coffee. That won't happen again.
We have a lot of support here right now. Kyle and I are both resting as much as possible.We are trading shifts at the hospital. So far, at least one of us has seen Everett every day since this started. I'm pumping every 4-5 hours, so my rest is in small stretches. Last night, our birth doula came to the hospital and gave each of us a massage. Another friend is working on a healing and restorative yoga series for me.
Kyle and I turned toward each other and chose love a long time ago. That doesn't mean our marriage is perfect, but we know how to choose love, and we know the power of love.
Don't get me wrong . . . this sucks!
Q: How is Everett?
A: He is in the best hands. He's doing okay. We have a strong vernacular to discuss fears, concerns, questions and I am confident in the foundation we've given Everett. He will talk to us (or his people) when he's having "big feelings." He loves Finn so much, and he asks about when Finn will come home every day. There are some outstanding professionals here who will help us help Everett with this.
Sunday, January 25, 2015
25 Jan AM updates
Morning positives
1. Night nurses give baths. Last night I got help with Finn's bath. I rubbed lavender lotion into his sweet skin, and rested my hand on his legs. Finn has always loved baths -- even as a 5 day old newborn we would just look around and listen to the water and enjoy the experience. He doesn't love PICU baths, but thinking about him bathing back at home was pretty powerful. So, lavender lotion and mama's touch.
2. Hemoglobin levels are borderline, but okay for now. No need for a blood transfusion this morning.
3. The docs adjusted the vent and are trying to back him off some other settings and let his little body do some work. Time will tell.
4. Kyle and Everett are at Monster Jam, a monster truck show (and Kyle's birthday gift from Everett) today. They should have a great time together.
5. Some of my favorite people are coming to hang out with Finn and me. I'm pretty sure one of them will get me out of the hospital for a few hours . . . while the other sits with our boy.
6. Mama got some sleep. Daddy racked out hard (something about Marines being able to sleep anywhere).
7. He's still on max feeds, and today during one of my pumping sessions the milk went directly from my pump to Finn's pump. So, right now he's enjoying mama's warm milk. He actually starts moving his mouth a little bit when I'm pumping, so I'm convinced he can smell the milk.
8. I was issued my "Parent Extended Stay" security badge yesterday. Add that to the list of things you are so glad to have when you get them, but never really wanted in the first place. Sort of like the Deployed Spouses Card. (Right, Megan?!).
#LoveWins
#FinnStrong
7.
1. Night nurses give baths. Last night I got help with Finn's bath. I rubbed lavender lotion into his sweet skin, and rested my hand on his legs. Finn has always loved baths -- even as a 5 day old newborn we would just look around and listen to the water and enjoy the experience. He doesn't love PICU baths, but thinking about him bathing back at home was pretty powerful. So, lavender lotion and mama's touch.
2. Hemoglobin levels are borderline, but okay for now. No need for a blood transfusion this morning.
3. The docs adjusted the vent and are trying to back him off some other settings and let his little body do some work. Time will tell.
4. Kyle and Everett are at Monster Jam, a monster truck show (and Kyle's birthday gift from Everett) today. They should have a great time together.
5. Some of my favorite people are coming to hang out with Finn and me. I'm pretty sure one of them will get me out of the hospital for a few hours . . . while the other sits with our boy.
6. Mama got some sleep. Daddy racked out hard (something about Marines being able to sleep anywhere).
7. He's still on max feeds, and today during one of my pumping sessions the milk went directly from my pump to Finn's pump. So, right now he's enjoying mama's warm milk. He actually starts moving his mouth a little bit when I'm pumping, so I'm convinced he can smell the milk.
8. I was issued my "Parent Extended Stay" security badge yesterday. Add that to the list of things you are so glad to have when you get them, but never really wanted in the first place. Sort of like the Deployed Spouses Card. (Right, Megan?!).
#LoveWins
#FinnStrong
7.
Saturday, January 24, 2015
24 Jan PM updates
Positives
1. completely normal EKG!
2. lots of wet diapers!
3. good toleration of the vent changes and he's taking a few breaths on his own!
4. I had a group hug with some of my best people when I went home for a few hours!
5. Homemade lactation cookies from not one, but two, of my neighbors!
6. Almost a thousand people have read this blog today. Wow. I am so humbled by the outpouring of support and filled with gratitude.
7. When I sing to Finn, his heart rate calms down a bit. Those of you who've heard me sing know how positive that is . . . tone deaf and off key he still likes what he's hearing!
Lift us up! We ask for improvement in Finn's hemoglobin levels. Please heal Finn's blood and help it to be strong again.
Off to close my eyes and quiet my mind (Kyle's already there).
#FinnStrong
#LoveWins
1. completely normal EKG!
2. lots of wet diapers!
3. good toleration of the vent changes and he's taking a few breaths on his own!
4. I had a group hug with some of my best people when I went home for a few hours!
5. Homemade lactation cookies from not one, but two, of my neighbors!
6. Almost a thousand people have read this blog today. Wow. I am so humbled by the outpouring of support and filled with gratitude.
7. When I sing to Finn, his heart rate calms down a bit. Those of you who've heard me sing know how positive that is . . . tone deaf and off key he still likes what he's hearing!
Lift us up! We ask for improvement in Finn's hemoglobin levels. Please heal Finn's blood and help it to be strong again.
Off to close my eyes and quiet my mind (Kyle's already there).
#FinnStrong
#LoveWins
Lessons from the PICU
If you've ever held vigil, by the side of a loved one in the ICU, you already learned these lessons. You might even have more to share.
So far, here are my Lessons from the PICU . . .
1. Everyone else works in 2 or 4 or 6 or 12 hour blocks of time. When you sit bedside 24/7 you are waiting, hoping, wishing for information every time a medical professional walks in the room. You want to ask: "How'd those labs look?" "What's that alert sound?" "any update on the xray?" "how'd the EKG look?" And you want to ask these questions every time someone walks by the door, peeks their head in, or just comes in to check vitals.
So . . . Patience.
2. We are looking for trends. We need our boy to be a trend setter! Once a trend is established by the docs a real move toward recovery is made. Baby steps. One step forward, another step laterally, there might even be a step "backward" sometimes.
3. A day in the PICU that's not a BAD day is a GOOD day. So, we've been fortunate. One Thursday, after about 12-14 hours of "we don't know what is making him so sick" we got a diagnosis. Just knowing what we were dealing with was a huge win. On Friday he started receiving breastmilk by feeding tube. He's been taking up to max feeds. On Saturday we started getting rid of a lot of the junk that's in his chest. He's getting a lot of suction, which means all that gunk is coming up. Sometimes something GOOD might look BAD . . .
4. The nights are hard. I'm exhausted. Stuff happens, but I'm alone in the room with Finn (Kyle's down the hall in the sleeping room). I've waited all day for that "news" (see #1). The nights are hard.
5. Our support team is amazing. We've got a support team near and far. People have done amazing things to take care of us. Everett has been in the very best care from the minute we put out the calls. People have delivered food, processed military base access passes, cleaned our home, picked up our dogs and cared for them, baked me lactation cookies, driven hours to spend a few minutes talking and laughing with us. People are making immediate plans to be here for support, other people make the genuine offer to be here for support later as this battle will take some time.
6. Love wins.
24 January 2015 AM positives
Today's chest x-rays look better than yesterday's. Yesterday's were better than Thursday's. X-rays are trending in the right direction.
Finn's been on his "max feedings" for about 18 hours nows. He's receiving all breastmilk and as much as possible given the condition and situation he's in.
Momma's still making lots of milk, pumping, and storing.
Kyle's having lunch with an old friend. A couple of Everett's favorite people are here with him.
Momma slept last night
Finn's been on his "max feedings" for about 18 hours nows. He's receiving all breastmilk and as much as possible given the condition and situation he's in.
Momma's still making lots of milk, pumping, and storing.
Kyle's having lunch with an old friend. A couple of Everett's favorite people are here with him.
Momma slept last night
#FinnStrong
We spent a looooooooong time naming Finn when he was just a few days old. We discussed lots of options and had a lot of criteria to find the 'perfect' name. (Kyle even developed a decision matrix spreadsheet on the marker board in our postpartum room).
And we settled on Finnegan. We always knew we would call him Finn. Some of you probably scratched your heads and chuckled a bit. His name isn't exactly "normal" or "classic." But, we always knew we loved the meaning. According to Nameberry, "Finn is a name with enormous energy and charm, that of the greatest hero of Irish mythology, Finn MacCool (aka Fionn mac Cuumhaill), an intrepid warrior with mystical supernatural powers, noted as well for his wisdom and generosity."
Our Finn is a strong warrior. With big beautiful blue eyes, and a giggling oohing and cooing personality.
The last few days have been tumultuous. What started as "just a cold" quickly became respiratory failure involving a trauma room at the Ft Belvoir ER, hours to stabilize and transport his perfect little body, and now a stay at the Pediatric ICU in one of the finest children's hospitals in the country.
Kyle and I (along with our support team) will focus on the positives, and are really trying to avoid spending much time in the "what ifs." The worry and fear won't help.
So, each day I will update you with the "positives." Some days we may need to focus on a "what if" or pull for a particular outcome, but for now we just count the positives, no matter how small.
The team of docs, nurses, technicians, and support staff is amazing. The support received near and far has been amazing. Our "boots on the ground" support here in DC has been awesome. I never once had to bat an eye and wonder how Everett was doing. Food deliveries, friends to laugh with, and all kinds of errands and favors to support our Farrell-Mattox family.
For now we agree that a day in the PICU that isn't a bad day is a good day. So, using that definition all of our days here have been "good" days. The docs look for trends, and we take baby steps to recovery.
Right now we need your support through your thoughts, prayers, deeds. Take us with you to church if that's what you do. Take us with you to the yoga mat or on your long run or during your WOD, if that's what you do. Take us to your temple, or sangha, or favorite spot in nature. I know some of you want to visit, but the PICU isn't a place for many visitors. We will move to a regular hospital room soon, and then we will transition back home eventually. We'll visit then!
When you wonder, "what can I do" please just hug your babies a little extra, trust your gut instinct, take care of yourself if you are ill, and WASH YOUR HANDS!!
Today's positives coming soon .
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