Tomorrow, we will celebrate the one year anniversary of Finn's "coming home again." You might remember, that last Valentine's Day, LOVE WON! Our sweet boy came home. Our big boy reunited with his brother. I think every second of that day will live in my viscera for eternity. From the moment that the nurse yanked out the feeding tube, to the moment that Everett got to hold Finn on the couch for the first time in 24 days, to the moment that my momma held me. Those moments are with me, in my soul, forever.
Our sweet Finn is on the cusp of 15 months old. Those of you who have been around toddlers know what a fun age and stage this is! Finn is (almost) running. Finn loves to eat, especially with a fork, and a spoon, and a bowl of his own (not the greatest combo for a toddler and the highchair and floor space). Finn can point to his nose, toes, belly, heart, head, and ears. And if you ask Finn, "where's your tongue?" He will stick it out and say "ahhhhhhhh" with a huge grin on his face. If you ask Finn, "where's your boogies" and he will scrunch up his nose and snort a little, followed by a giggle. Finn is always exploring the world, and is on the cusp of a language explosion. Finn is not keen to a disruption of routine. He's quick to voice his discontent when the world hasn't treated him right. He's the kind of kid that will give up his nap well before it's time, and will be riding a dirt bike at 3 years old.
Today, I watched Finn dance (to Will.i.am's "I Like to Move It" and Chumbawamba's "Tubthumping"). Today, I watched Finn explore the jungle gym at the YMCA. Today, I watched Everett kiss Finn goodnight (always three kisses) and tell him, "Finny, you are my best friend." Today, and every day, I am grateful for my strong warrior.
Tomorrow, our family will enjoy the early church service. Then, Kyle and I will have a "day date" at a fancy brunch. Finally, in the evening Everett and I will make cookies and heart shaped pizzas.
Saturday, February 13, 2016
Monday, September 28, 2015
Why I Run
On Saturday our family, friends, and neighbors will participate in the Race for Every Child in downtown DC. One of the Race's initiatives is to share a story about why we are running this race, using the hashtag #whyirun.
We are running to celebrate Finn's recovery. We are running to realize the "anchor" I set many months ago while Finn fought hard against RSV and pneumonia in the PICU. We are running for the other children and families who have experienced illness or injury, and may not have been as fortunate as our family.
You see, when Finn was really, really sick, I would walk the halls of the PICU and one corridor was filled with pictures, medals, and memorabilia from the Race for Every Child. And, during one of those walks, I imagined the beautiful fall day that our family would enjoy the race. I thought about our baby boy as a healthy 10 month old boy. I imagined Everett running in the kid's dash and enjoying the obstacle course with his friends. When my mind was overwhelmed with medical jargon and scared for my babies, I imagine what a "normal" Saturday would look like. The Race for Every Child became one of my anchors. I planned the post-race pancake breakfast and ordered the team shirts.
And we have almost arrived at that "normal" Saturday. As I type this the tears start to well up. Our boy was really, really sick. But he is healthy now. And, he has been healthy ever since. We've survived a few post-RSV sniffles and coughs, and even a few fevers (mostly low grade)! Our extended family has dealt with illness and loss over the last few months. But, my boys are healthy. And we are enjoying lots and lots of "normal" days.
The money our team contributes to the Race for Every Child will be used to support the Family Services division of Children's National Medical Center. I assume these funds will support brothers and sisters who have an ill or injured sibling.
At just past 10 months old, here are some of the exciting things going on in Finn's healthy and "normal" life:
#LoveWins
#FinnStrong
We are running to celebrate Finn's recovery. We are running to realize the "anchor" I set many months ago while Finn fought hard against RSV and pneumonia in the PICU. We are running for the other children and families who have experienced illness or injury, and may not have been as fortunate as our family.
You see, when Finn was really, really sick, I would walk the halls of the PICU and one corridor was filled with pictures, medals, and memorabilia from the Race for Every Child. And, during one of those walks, I imagined the beautiful fall day that our family would enjoy the race. I thought about our baby boy as a healthy 10 month old boy. I imagined Everett running in the kid's dash and enjoying the obstacle course with his friends. When my mind was overwhelmed with medical jargon and scared for my babies, I imagine what a "normal" Saturday would look like. The Race for Every Child became one of my anchors. I planned the post-race pancake breakfast and ordered the team shirts.
And we have almost arrived at that "normal" Saturday. As I type this the tears start to well up. Our boy was really, really sick. But he is healthy now. And, he has been healthy ever since. We've survived a few post-RSV sniffles and coughs, and even a few fevers (mostly low grade)! Our extended family has dealt with illness and loss over the last few months. But, my boys are healthy. And we are enjoying lots and lots of "normal" days.
The money our team contributes to the Race for Every Child will be used to support the Family Services division of Children's National Medical Center. I assume these funds will support brothers and sisters who have an ill or injured sibling.
At just past 10 months old, here are some of the exciting things going on in Finn's healthy and "normal" life:
- Finn's standing and cruising around furniture and playground equipment
- He's eating tons of food at the table with his family; he loves to eat!
- He has six teeth, with two more imminent
- Finn loves being outside
- He signs "drink" and "all done" and is starting to sign "more"
- He's a really vocal guy -- he babbles and screeches with his friends and his brother all the time
- Finn and Everett are the best of pals
#LoveWins
#FinnStrong
Wednesday, March 18, 2015
People Are Awesome
Today, as I spoke with one of my aunties, I realized that people (lots and lots of people) might really appreciate a brief update about our little warrior. Finn has had an amazing month. He's been out of the hospital and home for 4.5 weeks. We have weekly follow up appointments with his pediatrician, and we've seen a few specialists.
Overall, Finn is doing great. He's steadily gaining weight, and his respiratory health has been described as "perfect" and "pristine" the last few weeks. So, now, most of our energy is focused on "regular baby stuff" like teething, and reflux, and encouraging a breastfed baby to take a bottle. I can't remember the last time I texted one our pediatric nurse neighbors to "come take a listen" to Finn's lungs . . . Okay, actually, I can remember . . . it was approximately two weeks ago!
At this point the Pediatrician's primary concern is Finn's weight gain, and his well baby milestones. Fortunately he did not have any developmental delays for his two month milestones, and he appears to be on track for his four month milestones. His weight gain is slow and steady. He's still eating on demand, and he hasn't quite settled in to much of an eating or sleeping schedule. It's a good thing we have a Starbucks around the corner! I'm running on caffeine most days!
Of course there is still hand sanitizer on every level of our home. We wash our hands A LOT! It took a couple of weeks before I was comfortable having any guests (especially little people) inside the four walls of our home.
Each day, I feel grateful for the "new normal" that our family is working to create. Each and every day I feel grateful for the outpouring of love and support we felt (and continue to feel) from our friends and family around the globe.
I am forever changed by the experience of having a child in the PICU. Someday I will find a way to say "thank you" to each and every person who helped us through this journey. In the meantime, I can assure you that Love Wins!
Now, I'm back to the play room to watch Everett play his favorite game while Finn practices rolling over!
#FinnStrong
#LoveWins
Overall, Finn is doing great. He's steadily gaining weight, and his respiratory health has been described as "perfect" and "pristine" the last few weeks. So, now, most of our energy is focused on "regular baby stuff" like teething, and reflux, and encouraging a breastfed baby to take a bottle. I can't remember the last time I texted one our pediatric nurse neighbors to "come take a listen" to Finn's lungs . . . Okay, actually, I can remember . . . it was approximately two weeks ago!
At this point the Pediatrician's primary concern is Finn's weight gain, and his well baby milestones. Fortunately he did not have any developmental delays for his two month milestones, and he appears to be on track for his four month milestones. His weight gain is slow and steady. He's still eating on demand, and he hasn't quite settled in to much of an eating or sleeping schedule. It's a good thing we have a Starbucks around the corner! I'm running on caffeine most days!
Of course there is still hand sanitizer on every level of our home. We wash our hands A LOT! It took a couple of weeks before I was comfortable having any guests (especially little people) inside the four walls of our home.
Each day, I feel grateful for the "new normal" that our family is working to create. Each and every day I feel grateful for the outpouring of love and support we felt (and continue to feel) from our friends and family around the globe.
I am forever changed by the experience of having a child in the PICU. Someday I will find a way to say "thank you" to each and every person who helped us through this journey. In the meantime, I can assure you that Love Wins!
Now, I'm back to the play room to watch Everett play his favorite game while Finn practices rolling over!
#FinnStrong
#LoveWins
Monday, February 16, 2015
Home Sweet Home
Home is where the heart is.
Home is where your mom is.
Home is where the Marine Corps sends you.
For me, home is where my boys are.
We've been home since Saturday afternoon. We are enjoying the time together as a family. We are watching Finn like hawks. We are talking with Everett about his concerns and questions. We are all washing our hands. A lot.
We are waiting for Finn to poop. He's eating by mouth again, and he's eating well. A little too well for his little GI tract -- he's been spitting up a lot after feeding.
We are watching him for every little thing. Of course there are no pulse ox monitors here. There are no blood pressure cuffs. Just people who love Finn and neighbors who are pediatric nurses!!
Finn is scheduled for a post hospital follow up with his pediatrician tomorrow. We are really looking forward to that appointment! It will be nice to have formal indication that Finn's strong recovery is continuing.
Rex and Hari, our four legged kids, are comfortable back at home. They did great at their doggie daycare for the duration of Finn's illness. Everett was so excited to see them on Saturday! And then, later Saturday afternoon he was so excited to see Finn. Day by day we find a new normal.
Tonight we are thankful for the unwavering support of family and friends.
Tonight we are thankful for the miracles of modern medicine.
Tonight and every night we know that' Love Wins. Our greatest little Vakentine reminded us.
The last few nights have been pepper with moments of sheer and utter "normal" and I could not be more grateful.
I will keep writing. I still have lots to say, and I still have some great things to share.
Should you need a new lullaby for the bedtime routine, check out Godspeed by the Dixie Chicks. Should you need a new rocking ballad check out I Hope by the Dixie Chicks.
Home is where your mom is.
Home is where the Marine Corps sends you.
For me, home is where my boys are.
We've been home since Saturday afternoon. We are enjoying the time together as a family. We are watching Finn like hawks. We are talking with Everett about his concerns and questions. We are all washing our hands. A lot.
We are waiting for Finn to poop. He's eating by mouth again, and he's eating well. A little too well for his little GI tract -- he's been spitting up a lot after feeding.
We are watching him for every little thing. Of course there are no pulse ox monitors here. There are no blood pressure cuffs. Just people who love Finn and neighbors who are pediatric nurses!!
Finn is scheduled for a post hospital follow up with his pediatrician tomorrow. We are really looking forward to that appointment! It will be nice to have formal indication that Finn's strong recovery is continuing.
Rex and Hari, our four legged kids, are comfortable back at home. They did great at their doggie daycare for the duration of Finn's illness. Everett was so excited to see them on Saturday! And then, later Saturday afternoon he was so excited to see Finn. Day by day we find a new normal.
Tonight we are thankful for the unwavering support of family and friends.
Tonight we are thankful for the miracles of modern medicine.
Tonight and every night we know that' Love Wins. Our greatest little Vakentine reminded us.
The last few nights have been pepper with moments of sheer and utter "normal" and I could not be more grateful.
I will keep writing. I still have lots to say, and I still have some great things to share.
Should you need a new lullaby for the bedtime routine, check out Godspeed by the Dixie Chicks. Should you need a new rocking ballad check out I Hope by the Dixie Chicks.
Friday, February 13, 2015
The Promises You Make
13 February 2015 7:00 p.m.
The words aren't finding the way out of the gut and on to the screen.
So, I'll be short and sweet.
Finn has been breathing room air for more than 24 hours, through many periods of deep sleep. Today he's taken all of his feeds by mouth.
The medical team is working on hospital and discharge summaries.
If the vitals, sats, and feeding all remain stable we are hoping for a Valentine's Day discharge.
To that I'll say, once again, #LoveWins.
The words aren't finding the way out of the gut and on to the screen.
So, I'll be short and sweet.
Finn has been breathing room air for more than 24 hours, through many periods of deep sleep. Today he's taken all of his feeds by mouth.
The medical team is working on hospital and discharge summaries.
If the vitals, sats, and feeding all remain stable we are hoping for a Valentine's Day discharge.
To that I'll say, once again, #LoveWins.
Thursday, February 12, 2015
Whoosh
12 February 2015 - PM Update
Well, Finn has had a red letter day. He's been breathing room air most of the all. Not consistently the entire day, but most of the day. He and I had a feeding session that the speech therapist described as "fantastic." And, he's two days away from a complete and healthy wean off of the sedation medications.
Yesterday, a friend posted this on her Facebook page.
As I scrolled through my newsfeed letting my mind wander away from the Children's Hospital this caught my eye. I took a moment to pause and think about those words. Pain and Joy. Happiness and Unhappiness. Fear and Love. I "liked" the picture and went on with my night. I'll be honest, I felt some pain yesterday. The early morning hours marked three full weeks on this journey. Today, Finn and I started our fourth week in the hospital. Today, Kyle remarked that Finn has spent one quarter of his life in this hospital. So, yeah. I felt some pain last night.
But, today, Finn put himself on "room air." During his morning care session Nurse Becky was taking time to clean his face and re tape the cannula. As she did that care she removed the oxygen from his nose and started working. And Finn was not phased by the removal of oxygen. He was hanging out. He was happy. His "sats" looked great. About 20 minutes in to this informal "room air trial" Becky informed me of what she'd done. She told me he looked great and that she leaving him on room air. A few minutes after that the docs and students came by for rounds. Finn still looked good. No need for oxygen yet. With approval from the doc Becky decided to remove his "leads" (the sensors that monitor heart rate and respiratory rate) and then she removed his pulse ox sensor. Next, she coiled up his feeding tube, tucked it in his shirt, and said "Mom, take him over to the couch to look out the window. Play with him. He looks great and doesn't need to be tethered to these machines right now."
Yes, ma'am. Gladly. And then, in that moment I started to feel so much joy. And the high of that joy overpowered any of the pain I was feeling last night.
So, I pulled out Finn's lucky blanket (it's dark green with shamrocks all over it) and set up camp on the couch. We looked out the window and I talked about the row houses across the street. We looked at the Basilica, and saw a flock of birds fly by. I turned on Mary Lee's 1-2-3 Sing with Me album and I sang to my boy. He was alert, and active, and happy. And he was breathing room air, in my arms.
The joy definitely outweighed the pain. A lot of you have written me and shared your own NICU/PICU stories. Sharing that honesty, that vulnerability, means so much to us. I've leaned on your words so many times. People say, "you won't remember the lows, you won't remember the set backs, but you will remember the milestones." Wow. That joy.
But, as we all know at this point in the journey, Finn likes to keep us on our toes. So, after about 90 minutes of alert play time Finn was ready to sleep. Oxygen saturation naturally declines during sleep, especially during deep sleep. So, we put him back in bed and back on the monitors. He hovered in the low 90s/high 80s for awhile. Eventually, the attending doctor made the call that he should be on 1/8th of a liter of oxygen. Seriously, kid?!?!
So, Finn spent the vast majority of the day breathing room air. But, during sleep, at times he needed a little wisp of o2.
Now, as the day draws to a close, Finn is resting comfortably in a very deep sleep. He's breathing room air. He hasn't technically "desatted" during this entire sleep. But, boy, am I watching the monitor.
I suppose this story is to be continued. But, I can say with so much certainty that today was better than yesterday. I can say with so much certainty that day by day, in every way, we are better and better.
Well, Finn has had a red letter day. He's been breathing room air most of the all. Not consistently the entire day, but most of the day. He and I had a feeding session that the speech therapist described as "fantastic." And, he's two days away from a complete and healthy wean off of the sedation medications.
Yesterday, a friend posted this on her Facebook page.
As I scrolled through my newsfeed letting my mind wander away from the Children's Hospital this caught my eye. I took a moment to pause and think about those words. Pain and Joy. Happiness and Unhappiness. Fear and Love. I "liked" the picture and went on with my night. I'll be honest, I felt some pain yesterday. The early morning hours marked three full weeks on this journey. Today, Finn and I started our fourth week in the hospital. Today, Kyle remarked that Finn has spent one quarter of his life in this hospital. So, yeah. I felt some pain last night.
But, today, Finn put himself on "room air." During his morning care session Nurse Becky was taking time to clean his face and re tape the cannula. As she did that care she removed the oxygen from his nose and started working. And Finn was not phased by the removal of oxygen. He was hanging out. He was happy. His "sats" looked great. About 20 minutes in to this informal "room air trial" Becky informed me of what she'd done. She told me he looked great and that she leaving him on room air. A few minutes after that the docs and students came by for rounds. Finn still looked good. No need for oxygen yet. With approval from the doc Becky decided to remove his "leads" (the sensors that monitor heart rate and respiratory rate) and then she removed his pulse ox sensor. Next, she coiled up his feeding tube, tucked it in his shirt, and said "Mom, take him over to the couch to look out the window. Play with him. He looks great and doesn't need to be tethered to these machines right now."
Yes, ma'am. Gladly. And then, in that moment I started to feel so much joy. And the high of that joy overpowered any of the pain I was feeling last night.
So, I pulled out Finn's lucky blanket (it's dark green with shamrocks all over it) and set up camp on the couch. We looked out the window and I talked about the row houses across the street. We looked at the Basilica, and saw a flock of birds fly by. I turned on Mary Lee's 1-2-3 Sing with Me album and I sang to my boy. He was alert, and active, and happy. And he was breathing room air, in my arms.
The joy definitely outweighed the pain. A lot of you have written me and shared your own NICU/PICU stories. Sharing that honesty, that vulnerability, means so much to us. I've leaned on your words so many times. People say, "you won't remember the lows, you won't remember the set backs, but you will remember the milestones." Wow. That joy.
But, as we all know at this point in the journey, Finn likes to keep us on our toes. So, after about 90 minutes of alert play time Finn was ready to sleep. Oxygen saturation naturally declines during sleep, especially during deep sleep. So, we put him back in bed and back on the monitors. He hovered in the low 90s/high 80s for awhile. Eventually, the attending doctor made the call that he should be on 1/8th of a liter of oxygen. Seriously, kid?!?!
So, Finn spent the vast majority of the day breathing room air. But, during sleep, at times he needed a little wisp of o2.
Now, as the day draws to a close, Finn is resting comfortably in a very deep sleep. He's breathing room air. He hasn't technically "desatted" during this entire sleep. But, boy, am I watching the monitor.
I suppose this story is to be continued. But, I can say with so much certainty that today was better than yesterday. I can say with so much certainty that day by day, in every way, we are better and better.
Wednesday, February 11, 2015
Room Air Trial - Take 2
This morning during rounds the medical team suggested another room air trial. Same time, same place, they said.
So, today Finn breathed room air with decent success for a couple of hours. Kyle and I were cheering him on. Finn was ooooohing and cooing. Kat (the med student) was close by offering observations. Gene, the doctor turned the monitors away from us and silenced the alarms so that we could just watch Finn work, like a regular baby boy without the assistance of a nasal cannula. Becky, the nurse, was so optimistic and so took extra care to remove all of the tape and adhesive that has been holding the cannula in place since Friday.
Kyle and I donned our FinnStrong, LoveWins t-shirts, and Finn was wearing his Superman socks. We cheered "come on Finn, you can do it, but a little power to it . . . breathe!!" We joked. We discussed the Irish pub he's destined to open (Black and Tans all day, everyday for the members of his medical team). Kat offered Finn a fist bump. And then another. And then she said something like "Rock Chalk . . ." to which Finn gave her a solid fist bump. Kyle almost bounced her from the room. Apparently she's from Kansas.
And Finn worked. He worked hard. He looked good. He was happy. We reminded each other "you treat the baby, not the numbers." But, the numbers exist for a very good reason. And, today wasn't Finn's day to transition completely to room air. His oxygen saturation was in the high 80s or low 90s most of the trial. It needs to be in the mid to high 90s.
I suppose we'll have another room air trial tomorrow. Same time, same place? Perhaps we could all summon collective deep breaths, in and out, with full and complete oxygen saturation?
Today's positives:
1. Finn gained weight. He's currently receiving about 75% of his calories by feeding tube, and we hope he receives the additional 25% by mouth. He gained weight, which assumes that he did in fact get the additional 25% during our moderately successful feeding sessions.
2. This morning we eliminated one of the tube feeds, and instead he nursed for 30 minutes. This evening we plan to eliminate another tube feed session, and hope for another successful round of nursing.
3. Katy Perry and I walked another mile around the halls of the Respiratory Care Unit today. ROAR!
4. Kyle and Everett enjoyed dinner at one of our DC favorites -- Ted's Bulletin. Everett ordered Mr. Breakfast and a milkshake. Kyle had a burger and fries. They picked out a heart shaped pop tart for me. Yummy!
5. Finn had lots of alert time today. He loves the members of his medical team, especially his nurses. I mean, loves them. Loves them in a way that would make Great Grandpa Jacke entirely too happy.
#LoveWins
#FinnStrong
So, today Finn breathed room air with decent success for a couple of hours. Kyle and I were cheering him on. Finn was ooooohing and cooing. Kat (the med student) was close by offering observations. Gene, the doctor turned the monitors away from us and silenced the alarms so that we could just watch Finn work, like a regular baby boy without the assistance of a nasal cannula. Becky, the nurse, was so optimistic and so took extra care to remove all of the tape and adhesive that has been holding the cannula in place since Friday.
Kyle and I donned our FinnStrong, LoveWins t-shirts, and Finn was wearing his Superman socks. We cheered "come on Finn, you can do it, but a little power to it . . . breathe!!" We joked. We discussed the Irish pub he's destined to open (Black and Tans all day, everyday for the members of his medical team). Kat offered Finn a fist bump. And then another. And then she said something like "Rock Chalk . . ." to which Finn gave her a solid fist bump. Kyle almost bounced her from the room. Apparently she's from Kansas.
And Finn worked. He worked hard. He looked good. He was happy. We reminded each other "you treat the baby, not the numbers." But, the numbers exist for a very good reason. And, today wasn't Finn's day to transition completely to room air. His oxygen saturation was in the high 80s or low 90s most of the trial. It needs to be in the mid to high 90s.
I suppose we'll have another room air trial tomorrow. Same time, same place? Perhaps we could all summon collective deep breaths, in and out, with full and complete oxygen saturation?
Today's positives:
1. Finn gained weight. He's currently receiving about 75% of his calories by feeding tube, and we hope he receives the additional 25% by mouth. He gained weight, which assumes that he did in fact get the additional 25% during our moderately successful feeding sessions.
2. This morning we eliminated one of the tube feeds, and instead he nursed for 30 minutes. This evening we plan to eliminate another tube feed session, and hope for another successful round of nursing.
3. Katy Perry and I walked another mile around the halls of the Respiratory Care Unit today. ROAR!
4. Kyle and Everett enjoyed dinner at one of our DC favorites -- Ted's Bulletin. Everett ordered Mr. Breakfast and a milkshake. Kyle had a burger and fries. They picked out a heart shaped pop tart for me. Yummy!
5. Finn had lots of alert time today. He loves the members of his medical team, especially his nurses. I mean, loves them. Loves them in a way that would make Great Grandpa Jacke entirely too happy.
#LoveWins
#FinnStrong
Tuesday, February 10, 2015
10 February 2015 Update and DENALI
10 February 2015
6:30 p.m.
Today was another day of steady (albeit, slow!) progress on Finn's journey to a full and complete recovery from RSV and acute respiratory failure.
Let's start with the positives:
1. Finn had a lot of alert time today. He was up and active this morning, and had a couple of moderately successful breastfeeding sessions.
2. More alert time this afternoon, and even gave daddy a bunch of smiles!
3. The wean on his sedation medication has been accelerated. So far he's handled the change in dosing and timing of those medications very well. The sooner we can eliminate the sedation medication the more success he will have feeding.
4. I had another great meeting with the hospital's lactation consultant today. Her name is Judy and she's every bit of an earth mama, making her way in this miraculous medical facility. She explained some "tricks to the trade" with pumping to increase production and to increase effectiveness. Apparently, she met with the people from Medela and Stanford University who developed this particular model. She knows her stuff. She talked about a bunch of natural resources to increase milk supply, especially a plant called moringa. Tomorrow, she might send Kyle to a halal market in the Langley Park neighborhood to pick up said plant. (Or, I might order some capsules or tea that can be delivered via Amazon Prime by tomorrow evening!). She reminded me to keep up with our "kangaroo care" -- that skin to skin contact where Finn lays on our chest and syncs his heartbeat with his mama's (or daddy's). After 16 days in the ICU, where kangaroo care simply wasn't possible, I'd sort of forgotten about the power of oxytocin (the love hormone), and a mama's (or daddy's) rhythm, touch, feel, scent. Kangaroo care isn't just good for baby Finn. It's pretty important for mama, too. And, she's fighting the good fight with Tricare so that we can get an industrial strength human milking machine at home.
5. This afternoon Finn was moved to .25 liters of oxygen. He completed a "room air" trial, but he's not quite ready. At first Kyle and I felt really disappointed that he wasn't ready for room air, because getting to room air would be a HUGE milestone. But, he did tolerate another oxygen wean. This morning he was on .33 liters of oxygen. Now, since 2 p.m., he's been on .25 liters. Yesterday and the day before he didn't tolerate .25. So, he did make progress today. We are one step closer. We are one day closer.
And finally, Denali.
A few years ago I traveled to Alaska on business. I was thrilled about the opportunity to travel to Alaska and represent my company, but I was really nervous about leaving the lower 48 when Everett was so young (he was about 18 months old)*. Kyle and I talked through it, set a plan in place for support at home, and I committed to the trip. I had a few hours of downtime and was able to take a quick tour at Denali National Park. As I boarded a tour bus to return to park's main entrance a family of five caught my eye. Mom, Dad, and three boys. They were dressed in matching rain gear. Their backpacks were coordinated. They had aluminum hiking sticks. The three boys ranged in age from 8-14. This family was doing it -- they were hike in camping through Denali National Park for a week. The kids had to pull their own weight, literally. The mom and dad found a way to use frequent flyer miles to transport a family of five from Chicago to Alaska.
Of course I was missing my boys back at home, but when I saw this family board the bus and settle in to the row of seats in front of me, I knew there was a reason our path's crossed. In that moment I decided our family, too, would experience a vacation of a lifetime, hiking and camping through Denali.
At some point during the early hours of this crisis I set my sights on our family vacation to Denali. I envisioned Everett and Finn hiking through the park. I saw all four of us setting up camp, and looking for the "big five." I mediated on the peaks and valleys of the mountain ranges. I imagine the calm of the lakes and the rush of the streams. I thought about sitting around the camp fire singing kumbaya together. Whenever I couldn't quiet my mind I'd look at Kyle (or call him on the phone) and say "Denali." It was our code word. And he would just start talking about Denali. He would describe our family hiking a trail, with Everett working as "the leader," and Kyle and I walking hand in hand and watching our boys discover the world. We talked about what it looked like, what it felt like, how it smelled, what we saw, what we heard. We needed an anchor. Our future family trip to Denali became our anchor.
Denali or bust. Summer 2023. Join us? I'll rent a whole freakin' tour bus and emblazon #FinnStrong or #LoveWins on the side.
*For the record, my nerves about traveling so far away from Everett were NOT calmed when I received a phone call from daycare asking where Dad was!! Yes, that's right. Kyle "forgot" to pick up Everett one day. Whewie did that send me in to a bit of a tailspin. We all survived, though. Love you, babe!
6:30 p.m.
Today was another day of steady (albeit, slow!) progress on Finn's journey to a full and complete recovery from RSV and acute respiratory failure.
Let's start with the positives:
1. Finn had a lot of alert time today. He was up and active this morning, and had a couple of moderately successful breastfeeding sessions.
2. More alert time this afternoon, and even gave daddy a bunch of smiles!
3. The wean on his sedation medication has been accelerated. So far he's handled the change in dosing and timing of those medications very well. The sooner we can eliminate the sedation medication the more success he will have feeding.
4. I had another great meeting with the hospital's lactation consultant today. Her name is Judy and she's every bit of an earth mama, making her way in this miraculous medical facility. She explained some "tricks to the trade" with pumping to increase production and to increase effectiveness. Apparently, she met with the people from Medela and Stanford University who developed this particular model. She knows her stuff. She talked about a bunch of natural resources to increase milk supply, especially a plant called moringa. Tomorrow, she might send Kyle to a halal market in the Langley Park neighborhood to pick up said plant. (Or, I might order some capsules or tea that can be delivered via Amazon Prime by tomorrow evening!). She reminded me to keep up with our "kangaroo care" -- that skin to skin contact where Finn lays on our chest and syncs his heartbeat with his mama's (or daddy's). After 16 days in the ICU, where kangaroo care simply wasn't possible, I'd sort of forgotten about the power of oxytocin (the love hormone), and a mama's (or daddy's) rhythm, touch, feel, scent. Kangaroo care isn't just good for baby Finn. It's pretty important for mama, too. And, she's fighting the good fight with Tricare so that we can get an industrial strength human milking machine at home.
5. This afternoon Finn was moved to .25 liters of oxygen. He completed a "room air" trial, but he's not quite ready. At first Kyle and I felt really disappointed that he wasn't ready for room air, because getting to room air would be a HUGE milestone. But, he did tolerate another oxygen wean. This morning he was on .33 liters of oxygen. Now, since 2 p.m., he's been on .25 liters. Yesterday and the day before he didn't tolerate .25. So, he did make progress today. We are one step closer. We are one day closer.
And finally, Denali.
A few years ago I traveled to Alaska on business. I was thrilled about the opportunity to travel to Alaska and represent my company, but I was really nervous about leaving the lower 48 when Everett was so young (he was about 18 months old)*. Kyle and I talked through it, set a plan in place for support at home, and I committed to the trip. I had a few hours of downtime and was able to take a quick tour at Denali National Park. As I boarded a tour bus to return to park's main entrance a family of five caught my eye. Mom, Dad, and three boys. They were dressed in matching rain gear. Their backpacks were coordinated. They had aluminum hiking sticks. The three boys ranged in age from 8-14. This family was doing it -- they were hike in camping through Denali National Park for a week. The kids had to pull their own weight, literally. The mom and dad found a way to use frequent flyer miles to transport a family of five from Chicago to Alaska.
Of course I was missing my boys back at home, but when I saw this family board the bus and settle in to the row of seats in front of me, I knew there was a reason our path's crossed. In that moment I decided our family, too, would experience a vacation of a lifetime, hiking and camping through Denali.
At some point during the early hours of this crisis I set my sights on our family vacation to Denali. I envisioned Everett and Finn hiking through the park. I saw all four of us setting up camp, and looking for the "big five." I mediated on the peaks and valleys of the mountain ranges. I imagine the calm of the lakes and the rush of the streams. I thought about sitting around the camp fire singing kumbaya together. Whenever I couldn't quiet my mind I'd look at Kyle (or call him on the phone) and say "Denali." It was our code word. And he would just start talking about Denali. He would describe our family hiking a trail, with Everett working as "the leader," and Kyle and I walking hand in hand and watching our boys discover the world. We talked about what it looked like, what it felt like, how it smelled, what we saw, what we heard. We needed an anchor. Our future family trip to Denali became our anchor.
Denali or bust. Summer 2023. Join us? I'll rent a whole freakin' tour bus and emblazon #FinnStrong or #LoveWins on the side.
*For the record, my nerves about traveling so far away from Everett were NOT calmed when I received a phone call from daycare asking where Dad was!! Yes, that's right. Kyle "forgot" to pick up Everett one day. Whewie did that send me in to a bit of a tailspin. We all survived, though. Love you, babe!
Brotherly Love
A few nights ago Finn and I were FaceTiming with Kyle and Everett. It was story time at home, and Finn was having some great alert time here. So, I let Everett see Finn on FaceTime. Everett had a few questions about the "white things" on Finn's cheeks (the tape holding the tube in place) but mostly he was just thrilled to see his baby brother. He told us he missed Finn, hoped to hold him again soon, and then he said he wanted to sing a song.
So, Everett sang "You are My Sunshine." Word for word. Loud and proud. It was perfect. And, while Everett sang, Finn started smiling. It was amazing. Finn hadn't smiled, really smiled, since before this all started. Everett saw Finn smile. I saw Finn smile. It was one of the most beautiful moments in my life to date.
Of course, after all of that, I called for a nurse, stat!, to come mop me off the floor. Misty eyed wouldn't quite describe the feelings I felt.
You are my sunshine, my only sunshine
You make me happy when skies are grey
You'll never know dear, how much I love you
Please don't take my sunshine away
We've started to talk with Everett about having a party to celebrate Finn's return to our home. I told Everett the party would celebrate brothers -- big brothers and little brothers. And I asked Everett what we should have at the party. He drew a picture of Everett and Finn. He was holding Finn. He's certain we need balloons. And cake. Not cupcakes, cake. And lots of presents. What are your ideas? How can we celebrate brotherly love, enjoying Finn's homecoming and honoring Everett's bravery and courage these last THREE weeks?
So, Everett sang "You are My Sunshine." Word for word. Loud and proud. It was perfect. And, while Everett sang, Finn started smiling. It was amazing. Finn hadn't smiled, really smiled, since before this all started. Everett saw Finn smile. I saw Finn smile. It was one of the most beautiful moments in my life to date.
Of course, after all of that, I called for a nurse, stat!, to come mop me off the floor. Misty eyed wouldn't quite describe the feelings I felt.
You are my sunshine, my only sunshine
You make me happy when skies are grey
You'll never know dear, how much I love you
Please don't take my sunshine away
We've started to talk with Everett about having a party to celebrate Finn's return to our home. I told Everett the party would celebrate brothers -- big brothers and little brothers. And I asked Everett what we should have at the party. He drew a picture of Everett and Finn. He was holding Finn. He's certain we need balloons. And cake. Not cupcakes, cake. And lots of presents. What are your ideas? How can we celebrate brotherly love, enjoying Finn's homecoming and honoring Everett's bravery and courage these last THREE weeks?
Cheers for Finn!
I hope you enjoyed the videos my uncle sent a few days ago. Over the weekend, he visited the wrestling meet and the cheerleaders sent a couple more cheers! One is called "Everett's a Superman" and Everett absolutely loves it! Our next goal is to get a video of Everett watching the video of the Superman cheer.
And, Come On Finn, You Can Do It! Put a little power to it! Go! Go! Go!
And, Come On Finn, You Can Do It! Put a little power to it! Go! Go! Go!
Monday, February 9, 2015
Walk a mile in my shoes
9 February 1900 update
Good evening FinnStrong Family! Well, we seem to have settled in to a "new normal" that we expect will be the "normal" until Finn is discharged from this hospital. I've been at the hospital since early Friday morning, and I'm pumping and nursing around the clock (every three hours, or q3 for you medical types). Finn is working to wake up from the sedation medication. The medical team adjusted his dosage and wean schedule today, so we should start to see some progress on his level of alertness. Over the weekend Kyle's visits to the hospital were less frequent, as he was home caring for Everett. Now, Everett is back in school Monday - Friday, so Kyle is able to spend a little more time here.
Today was sort of a doozie. It was our first "business day" on the new floor. So, we met a new medical team -- new residents, interns, students, nurses, technicians, pharmacists. Kyle has a really great description of the trust that we've established with members of the medical team throughout this journey, but suffice it to say we will be working on trust building with the new team. When I worked in Higher Ed we always talked about helicopter parents -- you know, the parents that just hover, non stop, over their children? One of my colleagues and I used to joke about "cutting the cord" . . . well . . . Kyle and I officially classify as helicopter parents. Or maybe today's term is "drone parents?" We have a lot of questions, a fair amount of opinions, and we just want our boy to be healthy and to take him home. I never longed for "normal" so badly before in my life! One of these days we will tuck both of our boys in their beds, and finally rest our weary heads on our pillows, in our home, together. One of these days.
Our big boy is being so brave. Last week he started to show his feelings with his actions -- he was running and hiding, he was pushing and shoving. This week he's started to verbalize his feelings. We've started to share pictures with Everett, and we've even let him see Finn on FaceTime. Everett misses Finn. Everett wants to know when he can hold Finn again. Everett misses me. We've done everything we can think of -- recordable storybooks, videos of me reading stories, a visit to the hospital atrium (Everett is not allowed to visit the hospital proper), lots of open ended questions about "big feelings." My uncle even had the cheerleaders make a cheer for Everett.
Each day here is one day closer to recovery. Tomorrow marks 20 days in this hospital. Tomorrow marks 4 days since I've stepped outside the doors of this building.
Today's positives (Today Kyle and I actually had to sit down together and brainstorm ideas for this list. We really needed a moment to center and sit together and sort through the junk to find the positives).
1. Finn has tolerated .3 liters of oxygen most of the day. They tried him at .25 and he just didn't tolerate it. We'll try again tomorrow. So . . . we have to go to .25, and then .12, and then ROOM AIR!!
2. The medical team developed a new wean schedule for his sedation medications. Hopefully he will tolerate the wean schedule and also start sharing more alert time with us!
3. We had a couple of "moderately successful" feeding sessions.
4. We ordered Everett's birthday present! Our big boy will turn four in less than two weeks. He's getting a big boy bike. He mastered the balance bike a few months ago, so now he'll have a bike with pedals. It's blue, because Everett's favorite color is blue.
5. We spent a couple minutes talking about celebrating Everett's birthday. Bowling, pizza, and cupcakes are in order for our favorite almost four year old!
6. Walk a mile in my shoes. Today I walked a mile on the 7th floor of Children's National. The Charge Nurse told me that one lap around "the floor" was a sixth of a mile . . . six laps later I had walked a mile. I'm hoping to do two miles tomorrow.
7. Our new med student is named Kat. She's chipper. She's fun. She thinks Finn is suuuuuuuuuuper cute. My college roommate is Cat. So, Kat makes me think of Cat. And thinking of Cat makes me smile.
Finn is Strong and Love is Winning.
Tonight I will pray for sleep. And milk production. And that my boys (my infant, my preschooler, my 36 year old, and four legged pups) rest easy. And, I will dream about the day that our entire family of six (four plus two dogs) are together, under one roof, surrounded by love (and a little chaos)!
#FinnStrong
#LoveWins
#Trendsetter
Good evening FinnStrong Family! Well, we seem to have settled in to a "new normal" that we expect will be the "normal" until Finn is discharged from this hospital. I've been at the hospital since early Friday morning, and I'm pumping and nursing around the clock (every three hours, or q3 for you medical types). Finn is working to wake up from the sedation medication. The medical team adjusted his dosage and wean schedule today, so we should start to see some progress on his level of alertness. Over the weekend Kyle's visits to the hospital were less frequent, as he was home caring for Everett. Now, Everett is back in school Monday - Friday, so Kyle is able to spend a little more time here.
Today was sort of a doozie. It was our first "business day" on the new floor. So, we met a new medical team -- new residents, interns, students, nurses, technicians, pharmacists. Kyle has a really great description of the trust that we've established with members of the medical team throughout this journey, but suffice it to say we will be working on trust building with the new team. When I worked in Higher Ed we always talked about helicopter parents -- you know, the parents that just hover, non stop, over their children? One of my colleagues and I used to joke about "cutting the cord" . . . well . . . Kyle and I officially classify as helicopter parents. Or maybe today's term is "drone parents?" We have a lot of questions, a fair amount of opinions, and we just want our boy to be healthy and to take him home. I never longed for "normal" so badly before in my life! One of these days we will tuck both of our boys in their beds, and finally rest our weary heads on our pillows, in our home, together. One of these days.
Our big boy is being so brave. Last week he started to show his feelings with his actions -- he was running and hiding, he was pushing and shoving. This week he's started to verbalize his feelings. We've started to share pictures with Everett, and we've even let him see Finn on FaceTime. Everett misses Finn. Everett wants to know when he can hold Finn again. Everett misses me. We've done everything we can think of -- recordable storybooks, videos of me reading stories, a visit to the hospital atrium (Everett is not allowed to visit the hospital proper), lots of open ended questions about "big feelings." My uncle even had the cheerleaders make a cheer for Everett.
Each day here is one day closer to recovery. Tomorrow marks 20 days in this hospital. Tomorrow marks 4 days since I've stepped outside the doors of this building.
Today's positives (Today Kyle and I actually had to sit down together and brainstorm ideas for this list. We really needed a moment to center and sit together and sort through the junk to find the positives).
1. Finn has tolerated .3 liters of oxygen most of the day. They tried him at .25 and he just didn't tolerate it. We'll try again tomorrow. So . . . we have to go to .25, and then .12, and then ROOM AIR!!
2. The medical team developed a new wean schedule for his sedation medications. Hopefully he will tolerate the wean schedule and also start sharing more alert time with us!
3. We had a couple of "moderately successful" feeding sessions.
4. We ordered Everett's birthday present! Our big boy will turn four in less than two weeks. He's getting a big boy bike. He mastered the balance bike a few months ago, so now he'll have a bike with pedals. It's blue, because Everett's favorite color is blue.
5. We spent a couple minutes talking about celebrating Everett's birthday. Bowling, pizza, and cupcakes are in order for our favorite almost four year old!
6. Walk a mile in my shoes. Today I walked a mile on the 7th floor of Children's National. The Charge Nurse told me that one lap around "the floor" was a sixth of a mile . . . six laps later I had walked a mile. I'm hoping to do two miles tomorrow.
7. Our new med student is named Kat. She's chipper. She's fun. She thinks Finn is suuuuuuuuuuper cute. My college roommate is Cat. So, Kat makes me think of Cat. And thinking of Cat makes me smile.
Finn is Strong and Love is Winning.
Tonight I will pray for sleep. And milk production. And that my boys (my infant, my preschooler, my 36 year old, and four legged pups) rest easy. And, I will dream about the day that our entire family of six (four plus two dogs) are together, under one roof, surrounded by love (and a little chaos)!
#FinnStrong
#LoveWins
#Trendsetter
Sunday, February 8, 2015
8 February 2015
6:00 p.m.
Today the nurse and attending doctor wrote "Discharge Goals" on a marker board in Finn's room.
The goals are pretty simple:
1. breathing room air
2. tolerate oral feed
Wow. We are getting closer. Finn is still on .5 liters of air, and is receiving most of his sustenance through a feeding tube. Each day we breathes a little better, and each day he nurses a little more. Today's nurse seems to think we are still 3-5 days away from discharge. Today Kyle and I were able to give Finn a bath, and I even trimmed his hair. He's wearing a cute little romper from home and his beautiful blue eyes are shining.
A few folks on "the floor" have used the term "sub acute care facility" as a discharge option. Others have said we could be discharged even if Finn still had a feeding tube. Apparently parents can learn how to insert and check feeding tubes. I'm still praying for a full recovery and a discharge from Children's National to our home.
I know that #LoveWins! Perhaps as we creep closer to Valentine's Day we also creep closer to Finn's full and complete recovery and discharge.
There were so many positives this weekend. I don't want to leave anyone out! We've been feeling the love from all of you!
Kyle, Everett, and Bob were greeted by lots of packages and deliveries the last few days. Y'all are taking care of us and our big boy more than you know! And, I received this really cool bracelet with a metal stamped charm that says "LOVE." It will always remind me of our family's strength and support during this journey.
#FinnStrong #LoveWins t-shirts! Yesterday I had a surprise visit from a friend and she came with matching #FinnStrong t-shirts for Kyle and I. Back in the homeland my sister coordinated a t-shirt order as well! One thing is for sure . . . FinnStrong is alive and well.
I enjoyed a visit with an old friend -- we talked about her upcoming wedding and she brought Finn the cutest little outfit for Valentine's Day!
A surprise grocery delivery from a true Good Samaritan. Lots of good food for us this weekend!
6:00 p.m.
Today the nurse and attending doctor wrote "Discharge Goals" on a marker board in Finn's room.
The goals are pretty simple:
1. breathing room air
2. tolerate oral feed
Wow. We are getting closer. Finn is still on .5 liters of air, and is receiving most of his sustenance through a feeding tube. Each day we breathes a little better, and each day he nurses a little more. Today's nurse seems to think we are still 3-5 days away from discharge. Today Kyle and I were able to give Finn a bath, and I even trimmed his hair. He's wearing a cute little romper from home and his beautiful blue eyes are shining.
A few folks on "the floor" have used the term "sub acute care facility" as a discharge option. Others have said we could be discharged even if Finn still had a feeding tube. Apparently parents can learn how to insert and check feeding tubes. I'm still praying for a full recovery and a discharge from Children's National to our home.
I know that #LoveWins! Perhaps as we creep closer to Valentine's Day we also creep closer to Finn's full and complete recovery and discharge.
There were so many positives this weekend. I don't want to leave anyone out! We've been feeling the love from all of you!
Kyle, Everett, and Bob were greeted by lots of packages and deliveries the last few days. Y'all are taking care of us and our big boy more than you know! And, I received this really cool bracelet with a metal stamped charm that says "LOVE." It will always remind me of our family's strength and support during this journey.
#FinnStrong #LoveWins t-shirts! Yesterday I had a surprise visit from a friend and she came with matching #FinnStrong t-shirts for Kyle and I. Back in the homeland my sister coordinated a t-shirt order as well! One thing is for sure . . . FinnStrong is alive and well.
I enjoyed a visit with an old friend -- we talked about her upcoming wedding and she brought Finn the cutest little outfit for Valentine's Day!
A surprise grocery delivery from a true Good Samaritan. Lots of good food for us this weekend!
Semper Fi.
Always Faithful.
Today I said something to the Charge Nurse, Liz, that I figured needed posting here.
My exact words were, "I'm just so grateful for the Marine Corps. They've been so supportive through this crisis. We are so fortunate that Kyle has been able to be away from work and here with his family."
As I walked the halls of the PICU, and now "the floor," I gazed in on many, many children who had no visitors. There was a noticeable difference on the weekends -- some kids' visitors would start to arrive on Friday evening, and stay through Sunday evening. We've been fortunate, as both parents and partners, to be here together. And, when we couldn't be here together it was only because our big boy needed one of us at home.
This journey has taught me a lot about gratitude. And grit. And faith. And hope. And love. And sleep deprivation. :-)
When we first got married Kyle always told me "we take care of our own." There is no doubt about that.
To our USMC family, near and far, thank you! We received calls, texts, packages, deliveries, thoughts, and prayers and we could feel the extra Oorah being sent on Finn's behalf.
To the Prince, Frog, Big Duck, Analysts, and spouses of RPD, thank you.
Today I said something to the Charge Nurse, Liz, that I figured needed posting here.
My exact words were, "I'm just so grateful for the Marine Corps. They've been so supportive through this crisis. We are so fortunate that Kyle has been able to be away from work and here with his family."
As I walked the halls of the PICU, and now "the floor," I gazed in on many, many children who had no visitors. There was a noticeable difference on the weekends -- some kids' visitors would start to arrive on Friday evening, and stay through Sunday evening. We've been fortunate, as both parents and partners, to be here together. And, when we couldn't be here together it was only because our big boy needed one of us at home.
This journey has taught me a lot about gratitude. And grit. And faith. And hope. And love. And sleep deprivation. :-)
When we first got married Kyle always told me "we take care of our own." There is no doubt about that.
To our USMC family, near and far, thank you! We received calls, texts, packages, deliveries, thoughts, and prayers and we could feel the extra Oorah being sent on Finn's behalf.
To the Prince, Frog, Big Duck, Analysts, and spouses of RPD, thank you.
Saturday, February 7, 2015
From the PICU to the Penthouse
Last night, around 7:00 p.m. we were notified that we "had a bed" on "the floor." We were leaving the PICU. After almost 16 days in PICU room 320, we were moving on up. At that point Finn was on 2 liters of oxygen and working slowly and steadily to eliminate the sedation medications from his body. His feeding schedule was changed -- instead of taking continuous feeds to his intestine, they switched to feeds every three hours, directly to his stomach. The changing feeding schedule should help him start to recognize that he's hungry, and start to show signs of hunger, too. Soon, hopefully, our natural rhythm of hunger, supply, and demand will return.
Day by day
in every way
Finn is better and better.
Day by day
in every way
we are better and better.
I've recited that poem over and over throughout the past sixteen days. Usually, I would gently rest my hand over Finn's precious little chest while reciting the prayer. I suppose I've meditated on that verse at least five hundred times in the last few weeks.
So, how does it feel to leave the PICU and head to the "step down floor?" Hum. I'm still not sure. Of course it feels good -- such a sense of relief! We've hit a monumental milestone. He's on the "last mile" of the race to a full recovery. After we packed up our PICU room and waited for the official transport from one floor to another, Kyle and I stood in a long embrace, and I uttered, "I still don't know how we got through this."
Finn still has some pretty significant milestones to meet. He's got to start breathing "room oxygen" rather than through a nasal cannula. He's got to start taking full feeds by mouth, rather than through a feeding tube. He's got to come out of sedation completely and safely. While we are on the "last mile" it's usually the "last mile" that takes grit. It's the "last mile" where you show what you're made of.
On "the floor" I get to care for Finn -- diaper changes, clothing changes, sponge baths, breast feeding attempts. In the PICU the medical team did most of the care taking while Kyle and I stood by to support our boy.
Another big change as we moved from PICU to "the floor" is our co-parenting arrangement. Kyle is back at the house caring for Everett. Our 24/7 home support ends tomorrow, at least for a few days. So, Kyle and I are splitting shifts. We'll be "high fiving" on the 295 as we trade posts. We are so grateful that we were able to spend so much time together, often in each other's arms, these last few weeks.
Day by day
in every way
Finn is better and better.
Day by day
in every way
we are better and better.
I've recited that poem over and over throughout the past sixteen days. Usually, I would gently rest my hand over Finn's precious little chest while reciting the prayer. I suppose I've meditated on that verse at least five hundred times in the last few weeks.
So, how does it feel to leave the PICU and head to the "step down floor?" Hum. I'm still not sure. Of course it feels good -- such a sense of relief! We've hit a monumental milestone. He's on the "last mile" of the race to a full recovery. After we packed up our PICU room and waited for the official transport from one floor to another, Kyle and I stood in a long embrace, and I uttered, "I still don't know how we got through this."
Finn still has some pretty significant milestones to meet. He's got to start breathing "room oxygen" rather than through a nasal cannula. He's got to start taking full feeds by mouth, rather than through a feeding tube. He's got to come out of sedation completely and safely. While we are on the "last mile" it's usually the "last mile" that takes grit. It's the "last mile" where you show what you're made of.
On "the floor" I get to care for Finn -- diaper changes, clothing changes, sponge baths, breast feeding attempts. In the PICU the medical team did most of the care taking while Kyle and I stood by to support our boy.
Another big change as we moved from PICU to "the floor" is our co-parenting arrangement. Kyle is back at the house caring for Everett. Our 24/7 home support ends tomorrow, at least for a few days. So, Kyle and I are splitting shifts. We'll be "high fiving" on the 295 as we trade posts. We are so grateful that we were able to spend so much time together, often in each other's arms, these last few weeks.
Friday, February 6, 2015
Determination for Finn
Last night, after a very long day and a roller coaster of emotions, we received a gift from my uncle. Last night's tears were that of gratitude, comfort, and hope. Our boy is steadily improving.He's still got a team of supporters all around the world hoping and praying for him.
This particular gesture of support hit home -- it came from the place that I called home for many years. It came from the family that has stood by me (and my family) as we traipse around the world at the direction of the Marine Corps. It came from my high school -- the school that I attended from kindergarten until graduation. It came from strangers, people who don't know me personally, but they know my extended family, and they know of our story.
I hope you enjoy this video of the Saydel High School cheerleaders performing "Determination for Finn."
This particular gesture of support hit home -- it came from the place that I called home for many years. It came from the family that has stood by me (and my family) as we traipse around the world at the direction of the Marine Corps. It came from my high school -- the school that I attended from kindergarten until graduation. It came from strangers, people who don't know me personally, but they know my extended family, and they know of our story.
I hope you enjoy this video of the Saydel High School cheerleaders performing "Determination for Finn."
Faith, Hope, and Love
6 February 0800
Have you seen the movie Wild? Read the book? If not, you should. Read the book first, if you can. A few weeks ago Kyle, Finn, and I enjoyed a "day date." I was so excited to see Cheryl Strayed's story depicted on the big screen. Kyle was excited to see Reese Witherspoon hike the PCT. Finn slept and nursed the whole movie. Win. Win. Win.
This quote caught me hard during the movie:
“There’s a sunrise and a sunset every day, and you can choose to be there for it. You can put yourself in the way of beauty.”
We had another beautiful sunrise this morning.
And Finn is well on his way to another great day. Finn is receiving 2 liters of oxygen through a small nasal cannula. Today, Finn and I will start breast feeding again. Finn's sedation medications continue to be weaned at a slow and safe pace for his body. There's a buzz in the air about "moving to the floor" and out of the ICU. Wow. Amen. Hallelujah. Wow. Our boy is starting to look like himself again.
Please continue to lift us up in your thoughts and prayers. Finn and I will be getting to know each other again. I'm certain our mother-child bond and instincts will return quickly. I'm also scared. Will his "oooohs" and "coos" mean the same thing they meant three weeks ago? Will a red face and active legs still indicate it's about time for massive diaper blow out? Will his gaze follow mine? Okay. Enough of those questions.
#LoveWins
#FinnStrong
Have you seen the movie Wild? Read the book? If not, you should. Read the book first, if you can. A few weeks ago Kyle, Finn, and I enjoyed a "day date." I was so excited to see Cheryl Strayed's story depicted on the big screen. Kyle was excited to see Reese Witherspoon hike the PCT. Finn slept and nursed the whole movie. Win. Win. Win.
This quote caught me hard during the movie:
“There’s a sunrise and a sunset every day, and you can choose to be there for it. You can put yourself in the way of beauty.”
We had another beautiful sunrise this morning.
And Finn is well on his way to another great day. Finn is receiving 2 liters of oxygen through a small nasal cannula. Today, Finn and I will start breast feeding again. Finn's sedation medications continue to be weaned at a slow and safe pace for his body. There's a buzz in the air about "moving to the floor" and out of the ICU. Wow. Amen. Hallelujah. Wow. Our boy is starting to look like himself again.
Please continue to lift us up in your thoughts and prayers. Finn and I will be getting to know each other again. I'm certain our mother-child bond and instincts will return quickly. I'm also scared. Will his "oooohs" and "coos" mean the same thing they meant three weeks ago? Will a red face and active legs still indicate it's about time for massive diaper blow out? Will his gaze follow mine? Okay. Enough of those questions.
#LoveWins
#FinnStrong
Thursday, February 5, 2015
Words Matter - a working vocabulary for PICU parents
Today we wake up to a beautiful sunrise and a day filled with the promise of continued progress. I think I might have truly, actually exhaled fully this morning. The medical team has great things to say about Finn's respiratory health. Nurses are starting to remove machines and equipment from Finn's room, confident he won't need it again.
We've been in the PICU for exactly two weeks. It's Thursday morning, and Thursday morning two weeks ago was the first time we stood at the threshold of this room and listened to a medical team of 14 people discuss Finn's case. We didn't even know what we were hearing. They were speaking a foreign language filled with acronyms, medical terms, names of medications, possible plans for treatment, possible diagnoses. Now, we could nearly recite Finn's history for the resident. Sometimes we even supplement the overview. We could tell you his doses of medication -- how much, when, and how he reacts to it. We could probably guess what the plan for the day would be before the Fellow or Attending announces it. Doctors, nurses, therapists we are not. But, we will be damn good at Jeopardy the next time "Critical Care" is a category.
PICU Vocabulary*
duodenum (duh-wad-den-um) : the first section of the small intestine. Finn has an ND feeding tube -- meaning it starts in his nose (N) and ends in his duodenum (D). The desired placement of a feeding tub for a baby who needs assistance to breathe is ND, because it's past the stomach and in the intestine which greatly reduces the risk of aspirating.
extubate: to remove a breathing tube.
febrile: fever. afebrile: no fever
tachycardic: high heart rate.
tachypnic: rapid breathing. (hyperventilating)
tolerate: the medical team has a peculiar way of using the word "tolerate." Similar to the use of the word "appreciate" I wrote about earlier. Every time they make an adjustment to Finn's recovery course they say "we'll see how he 'tolerates' it." There have been many adjustments that he did not "tolerate" during this multi-day journey. But, each day is a new day, and each day he tolerates more and more.
WAT Score: withdrawal assessment tool. Used to determine how a patient is reacting to the reduction of sedation medications.
*This PICU dictionary is brought to you by the letters K and J and the numbers 2 and 3. If you are one of our strong supporters from the medical field please forgive our layperson's understanding of some very technical medical terms.
#FinnStrong
#LoveWins
We've been in the PICU for exactly two weeks. It's Thursday morning, and Thursday morning two weeks ago was the first time we stood at the threshold of this room and listened to a medical team of 14 people discuss Finn's case. We didn't even know what we were hearing. They were speaking a foreign language filled with acronyms, medical terms, names of medications, possible plans for treatment, possible diagnoses. Now, we could nearly recite Finn's history for the resident. Sometimes we even supplement the overview. We could tell you his doses of medication -- how much, when, and how he reacts to it. We could probably guess what the plan for the day would be before the Fellow or Attending announces it. Doctors, nurses, therapists we are not. But, we will be damn good at Jeopardy the next time "Critical Care" is a category.
PICU Vocabulary*
duodenum (duh-wad-den-um) : the first section of the small intestine. Finn has an ND feeding tube -- meaning it starts in his nose (N) and ends in his duodenum (D). The desired placement of a feeding tub for a baby who needs assistance to breathe is ND, because it's past the stomach and in the intestine which greatly reduces the risk of aspirating.
extubate: to remove a breathing tube.
febrile: fever. afebrile: no fever
tachycardic: high heart rate.
tachypnic: rapid breathing. (hyperventilating)
tolerate: the medical team has a peculiar way of using the word "tolerate." Similar to the use of the word "appreciate" I wrote about earlier. Every time they make an adjustment to Finn's recovery course they say "we'll see how he 'tolerates' it." There have been many adjustments that he did not "tolerate" during this multi-day journey. But, each day is a new day, and each day he tolerates more and more.
WAT Score: withdrawal assessment tool. Used to determine how a patient is reacting to the reduction of sedation medications.
*This PICU dictionary is brought to you by the letters K and J and the numbers 2 and 3. If you are one of our strong supporters from the medical field please forgive our layperson's understanding of some very technical medical terms.
#FinnStrong
#LoveWins
Wednesday, February 4, 2015
4 February 2015 PM Update
Greetings, FinnStrong supporters!
Today is another day of steady progress from the PICU. Our little man is working well with the high flow oxygen, and has come down two settings today. He's currently at a level 8 and we need to get to level 2 before we can move out of the PICU to apenthouse suite regular hospital room. As we know, Finn makes his progress one day at a time, slow and steady. Isn't there something about the tortoise and the hare that might help in times like this?
Finn also reached another milestone today as the medical team was able to safely discontinue the use of one of the pain/sedation medications. Overall, today has been a good day!
He still has many days ahead of steady recovery, but we are pleased with all of the progress he's made today.
Today's positives:
1. Rest and reprieve. I slept at home last night, and I slept hard.
2. Support for the mind and body. Our birth doula came by again today and offered massage therapy for both Kyle and I. She is such a healing spirit and her knowledge of massage and reflexology is amazing. And, she brought me a green smoothie! It was delicious.
3. My grey minivan. Kyle and I bought a minivan a few months ago. Yep, that's right. I cruise around DC in grey minivan with a "baby on board" caution sign hanging in the back window. I am that mom. And I freaking love it! The functionality of this vehicle is unmatched, and we are so happy with our purchase. Kyle could be a minivan salesman. He's always standing out in our driveway showing the neighbors all of his favorite features -- automatic doors, magic seats, "cool box," built in window shade, all weather floor mats. It is the ultimate in comfortable family transportation. When I was home last night Everett and I took the mini to the park. It was so fun! However, I found the "oil change" light on display, so today Kyle's dad took the van in for it's first oil change. My "mom mobile" is serviced and ready to roll just as soon we life gets back to normal.
4. QT with my FIL. That's quality time with my father in law. Papa Bob hung out with me at the hospital this afternoon and evening. It was nice to have company and to spend time with him while Kyle was at home with our big boy.
I'm going to do some more writing tonight, but here's an update to get you started.
#FinnStrong
#LoveWins
Today is another day of steady progress from the PICU. Our little man is working well with the high flow oxygen, and has come down two settings today. He's currently at a level 8 and we need to get to level 2 before we can move out of the PICU to a
Finn also reached another milestone today as the medical team was able to safely discontinue the use of one of the pain/sedation medications. Overall, today has been a good day!
He still has many days ahead of steady recovery, but we are pleased with all of the progress he's made today.
Today's positives:
1. Rest and reprieve. I slept at home last night, and I slept hard.
2. Support for the mind and body. Our birth doula came by again today and offered massage therapy for both Kyle and I. She is such a healing spirit and her knowledge of massage and reflexology is amazing. And, she brought me a green smoothie! It was delicious.
3. My grey minivan. Kyle and I bought a minivan a few months ago. Yep, that's right. I cruise around DC in grey minivan with a "baby on board" caution sign hanging in the back window. I am that mom. And I freaking love it! The functionality of this vehicle is unmatched, and we are so happy with our purchase. Kyle could be a minivan salesman. He's always standing out in our driveway showing the neighbors all of his favorite features -- automatic doors, magic seats, "cool box," built in window shade, all weather floor mats. It is the ultimate in comfortable family transportation. When I was home last night Everett and I took the mini to the park. It was so fun! However, I found the "oil change" light on display, so today Kyle's dad took the van in for it's first oil change. My "mom mobile" is serviced and ready to roll just as soon we life gets back to normal.
4. QT with my FIL. That's quality time with my father in law. Papa Bob hung out with me at the hospital this afternoon and evening. It was nice to have company and to spend time with him while Kyle was at home with our big boy.
I'm going to do some more writing tonight, but here's an update to get you started.
#FinnStrong
#LoveWins
Tuesday, February 3, 2015
3 February PM updates
Greetings, faithful readers! I know some of you are wondering if I'm blogging for you or for myself. Trust me . . . I'm blogging for myself, but the encouragement we receive from you all is very helpful.
Today was another day of slow and steady progress in room 320. Finn was downgraded from a Ram Cannula to a high flow nasal cannula. He just has a tube in his nose blowing oxygen in to his little body. He's getting better. Slowly but surely. We still have many days ahead of us in the ICU. After our time in the ICU we will stay in a regular hospital room where he can still be monitored. Finn is starting to look like himself again. He's handsome little face is more visible. He's able to turn and move a lot more. He's not swollen and puffy anymore. We are getting closer, but he still has many days of recovery ahead. After his respiratory health is fully improved then minor adjustments will be made to the sedation medication until he can safely be awake.
Here are today's positives:
1. Vegetable venison soup. Homemade. Hand delivered to the PICU by a pal who I can say anything to . . . and that I did. It was great to just sit with a friend and talk about something other than the happenings of room 320. Sure, we talked a lot about that, but we had time for some other conversations as well. Kyle enjoyed the soup with venison. I enjoyed mine without! YUMMY!
2. A moment of normal. I came home to spend the afternoon with Everett. We knew he'd been having some "big feelings" but he probably wouldn't let them out with anyone but me. So, I left the hospital and spent the afternoon and evening with Everett. We had an AWESOME time enjoying the treats from his care package (see #1), playing at the park, eating dinner, and going through bedtime routine. We were playing at a park when Everett exclaimed, "look mom, the neighbors!" Our next door neighbors surprised us at the park so the boys could play together. It was so great. It was truly a moment of normal. I took a deep breath, grabbed my neighbors hand, and made an anchor to that moment.
3. Xa-Lights.
The other day the child life specialist (social worker) brought us a gift for Everett. These lights are made by a family who had a very long PICU experience. Everett has a light in his room, and Finn has a light in his. I explained that the lights were bonded together just like Everett and Finn are bonded together. I told Everett that if he was missing Finn or worried about anything he could just tell his light. Everett was really excited and liked the idea. And . . . the light serves as a night light which helps with some of those "big feelings" (see #2) I mentioned earlier.
As soon as we turned the light on Everett left a few messages for Finn. And then he left a few messages for our dogs (they've been with a dog sitter since this whole thing started. He really misses them).
#LoveWins
#FinnStrong
And, now, sleep.
Today was another day of slow and steady progress in room 320. Finn was downgraded from a Ram Cannula to a high flow nasal cannula. He just has a tube in his nose blowing oxygen in to his little body. He's getting better. Slowly but surely. We still have many days ahead of us in the ICU. After our time in the ICU we will stay in a regular hospital room where he can still be monitored. Finn is starting to look like himself again. He's handsome little face is more visible. He's able to turn and move a lot more. He's not swollen and puffy anymore. We are getting closer, but he still has many days of recovery ahead. After his respiratory health is fully improved then minor adjustments will be made to the sedation medication until he can safely be awake.
Here are today's positives:
1. Vegetable venison soup. Homemade. Hand delivered to the PICU by a pal who I can say anything to . . . and that I did. It was great to just sit with a friend and talk about something other than the happenings of room 320. Sure, we talked a lot about that, but we had time for some other conversations as well. Kyle enjoyed the soup with venison. I enjoyed mine without! YUMMY!
2. A moment of normal. I came home to spend the afternoon with Everett. We knew he'd been having some "big feelings" but he probably wouldn't let them out with anyone but me. So, I left the hospital and spent the afternoon and evening with Everett. We had an AWESOME time enjoying the treats from his care package (see #1), playing at the park, eating dinner, and going through bedtime routine. We were playing at a park when Everett exclaimed, "look mom, the neighbors!" Our next door neighbors surprised us at the park so the boys could play together. It was so great. It was truly a moment of normal. I took a deep breath, grabbed my neighbors hand, and made an anchor to that moment.
3. Xa-Lights.
The other day the child life specialist (social worker) brought us a gift for Everett. These lights are made by a family who had a very long PICU experience. Everett has a light in his room, and Finn has a light in his. I explained that the lights were bonded together just like Everett and Finn are bonded together. I told Everett that if he was missing Finn or worried about anything he could just tell his light. Everett was really excited and liked the idea. And . . . the light serves as a night light which helps with some of those "big feelings" (see #2) I mentioned earlier.
As soon as we turned the light on Everett left a few messages for Finn. And then he left a few messages for our dogs (they've been with a dog sitter since this whole thing started. He really misses them).
#LoveWins
#FinnStrong
And, now, sleep.
Mothering (and Fathering)
On Sunday we had a first in the PICU. The charge nurse, Janice, pulled me to the side, squared up, looked in my eyes and said, "You need to let him chill today. Don't stimulate him. Just let him rest." And, because I truly believe each of us on Team Finn supports him in different ways, I listened.
In short, she told me to leave him alone. Stop touching him. Don't sing to him. Maybe he shouldn't even hear your voice. Wow. That was a blow. I wasn't ready for that dose of "reality."
The day before Janice had connected with us by talking about her daughter who spent 10 weeks in the NICU. So, when Janice pulled me aside on Sunday I knew she wasn't just speaking to me as a nurse. She was speaking to me as a mother. Those of you who've endured a NICU/PICU experience in the past probably aren't surprised by this conversation. A parent's touch (voice, presence) is instinctively the most natural way to soothe a child. Janice asked us to set our instincts to the side.
But, damn. I wasn't ready for that. She shook my confidence.
I'm not sure how Kyle took the instruction from Janice, but it hasn't seemed to shake his confidence.
This morning, as I said goodbye to our night nurse she said, "Tell your husband thank you. He was amazing through the night. He knew exactly what Finn needed and how to comfort him." So, as soon as Kyle comes back from the sleep room I will tell him "thank you."
P.S. The coffee I'm drinking right now tastes like plastic. It's time to get some coffee from the outside. Maybe after morning rounds . . .
In short, she told me to leave him alone. Stop touching him. Don't sing to him. Maybe he shouldn't even hear your voice. Wow. That was a blow. I wasn't ready for that dose of "reality."
The day before Janice had connected with us by talking about her daughter who spent 10 weeks in the NICU. So, when Janice pulled me aside on Sunday I knew she wasn't just speaking to me as a nurse. She was speaking to me as a mother. Those of you who've endured a NICU/PICU experience in the past probably aren't surprised by this conversation. A parent's touch (voice, presence) is instinctively the most natural way to soothe a child. Janice asked us to set our instincts to the side.
But, damn. I wasn't ready for that. She shook my confidence.
I'm not sure how Kyle took the instruction from Janice, but it hasn't seemed to shake his confidence.
This morning, as I said goodbye to our night nurse she said, "Tell your husband thank you. He was amazing through the night. He knew exactly what Finn needed and how to comfort him." So, as soon as Kyle comes back from the sleep room I will tell him "thank you."
P.S. The coffee I'm drinking right now tastes like plastic. It's time to get some coffee from the outside. Maybe after morning rounds . . .
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