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
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