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:

• 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

Watch for pictures from the race on Saturday!

#LoveWins
#FinnStrong

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

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.

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.

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.

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

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!

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?

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!

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

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!

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.

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.

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."

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

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

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 a penthouse 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

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.

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 . . .

Groundhog Day

2 February 2015 7:00 p.m.

The words aren't coming easy tonight, at least as I sit down to write an update. I've got so many entries half written in my head. Stay tuned for "People of the PICU," "Love in an Elevator," and "Denali."

But, tonight I just want to write an update. We are in a slow, steady recovery with Finn. Based on our current prognosis, we have many more days ahead with Finn in the ICU.

On Saturday Finn's breathing tube was removed and he was placed on a high flow nasal cannula.  Praise the almighty! We held our baby. Hallelujah!

Then he dealt with some serious challenges as the sedation medications were adjusted.

Then, on Sunday morning he started to "desat" (the level of oxygen in his blood was too low). He was switched to a RAM cannula. We are grateful that he was not reintubated, as during the "desat" period there were discussions of reintubation.

Now it's Monday night. He's done well on the RAM cannula and they are starting to wean the levels. Then, he would move back to the high flow nasal cannula. Eventually he will be on a lower flow of oxygen. We won't be leaving the ICU until all of these steps are accomplished. They tend to make changes to the machines only once or twice a day. Meaning . . . as things continue to go well we still have many more days in the ICU. And, I've only discussed his respiratory health. I haven't even begun to explain the sedation medications and how much time it will take to safely wean him off of those drugs.

So, today's update is slow and steady. Today's update is that Finn is taking itty, bitty, teeny, tiny baby steps toward recovery. Today's update is still #FinnStrong and #LoveWins.

Today's positives:
1. I had some really great quality time with Everett last night. I went home for dinner, bath, and bedtime. Everett and I had a lot of special moments. We recorded videos of reading stories together. At bedtime I asked Everett if he had any "big feelings" he wanted to talk about. He said "no."

I asked if he had any questions he wanted answered. He said "Yes, I have a few questions."

Here's a recap of our conversation.

Jen: "Okay, Everett, what are your questions?"
Ev: "Want do you want to be when you grow up?"
Jen: "Hum. That's a great question. I want to be a mommy."
Ev: "But you are already a mommy!"
Jen: "Okay, I want to be Wonder Woman."
Ev: "What does Wonder Woman do?"
Jen: "She loves all the babies and delivers ice cream and cookies and has so much fun playing all day!"
Ev: "Oh, well you can be Wonder Woman now. But can you bring cookies and ice cream to our house first, before you take them to other babies?"

2. It's Monday. I never really cared for Mondays before. But, Mondays in the PICU seem full of energy. There is a different feel around here on the weekends. The hospital slows down. The staff changes. Monday was buzzing. Lots of docs on rounds. Nurses were full of energy from what I imagine was a fulfilling and relaxing weekend.

3. The Chapel. I've been going to the chapel everyday. It's a quiet space, an Interfaith chapel. The energy feels different there, than here. Sometimes Kyle and I go together, sometimes I go by myself. Today Kyle and I went together and we were able to release a lot of fear and anxiety. We were able to talk about the future and our family.

4. Support. Before this all started I was scheduled to return to work after a standard 12-week maternity leave. Finny Foo is 10 weeks old now, meaning that my return to work was imminent. Our nanny was to start her "On the Job Training" today. First, I am so thankful for the support from both of our employers and colleagues as Finn works to recover. Secondly, I could not be more grateful for the support of our nanny. Right now she is helping our family in ways she will never fully appreciate or understand. She is shopping for groceries and cleaning/sterilizing/organizing toys and doing laundry and communicating with grandparents. And, she's doing it with grace. She and her husband went to Everett's Smart Start basketball practice, just because he asked. She's creating crafts to do with Everett. She picks out movies, get the supplies for homemade pizza.

My mom looked at my a few days ago and said, "you got a good one, Jen."

This is not the job she signed up for, but she's risen to the occasion over and over these last 13 days. I know that good begets good. Good will come her way as a result of her altruistic actions these last few weeks.

Thank you, Ros.

#FinnStrong
#LoveWins

1 Feb 2015 update and Denali

Today's positives:

1. The nurse just came to the room to collect my most recent supply of pumped breast milk. She looked at me with bright eyes and said, "You've got sooooooo much breast milk in the freezer. 51 bottles. Well, 54 now. Good job, mama."

And those words will carry me through many more days of pumping. I was starting to worry about my supply . . .  I'll let that worry go, as we have plenty stored up here . . .  and I have quite the stockpile at home also.

I'm so grateful to all the people who've helped me maintain that supply. The lactation cookies, the mother's milk tea and herbal supplements, the healthy snacks and meals that are being delivered and mailed to us. Kyle, for making sure I rest when I can. Shoot, today I'd sing praises to the engineers at medela.

2. "That's what you do for family."

As we've been on this journey we've had multigenerational support. Everett's been in the care of grandparents since the beginning of this experience, and he will continue to receive outstanding care from some of the people that love him best. And, wow. Even in our, ahem, mid-30s, sometimes all you need is a big old hug from your mama and daddy. Grandparents are special. Aunties and uncles are special. Great grandparents are special.

Special shout out here to my sister, as I can send her disorganized text messages and she can turn them in to an eloquent update for this journal. And, it's her birthday today. #LoveWins. Happy birthday, sis.

#FinnStrong
#Farrell-Mattox Strong

3. Sustenance
Today we received some of the most beautiful gifts of food. Some USMC friends make a delivery of snacks and meals to me at the hospital. And this stuff is good. Corn dip and fritos . . . fresh fruit . . . delicious oatmeal . . . veggies . . . hummus . . . cheese . . . crackers. PICU diet back in full force. They even threw in a couple "Hungry Man" type freezer meals for Kyle. :)

Another friend delivered a fridge and freezer full of homecooked plant based preschooler friendly meals. I hope y'all had a good laugh with that one! We are so thankful for ready made food that will nourish our bodies through this continued battle.

4. Denali.

This journey has been full of peaks and valleys. That is an understandment. We enjoyed some beautiful peaks yesterday. But, today we are in a valley. Sometimes, recovery in the ICU is hour by hour. The medical team keeps saying, "kids show you a lot about their personality in times like this."

We know that Finn will be a fighter. We know that Finn will chart his own course. A couple of friends sent me inspiration today that helped while I sat in wait at my baby's bedside.

My sister sent a tweet "FIGHT LIKE HELL . . . . And when you get too tired to fight, then lay down and rest and let somebody else fight for you. - Stuart Scott"  Finn got tired. We are all fighting on our own front, in our own way.

Another friend reminded me that Finn seems to have a good day, a not so good day, then a great day.

And, finally, the cha cha. The dance we call life. I actually saw Finn performing a little Irish jig after I read this one.



5. The Luck of the Irish
You may not have realized this, but Finn's name is Irish. Sort of.

Inspired by the Irish folklore hero Finn McCool. And my family of origin.

Today we received a package from the moutains that was filled with Irish blessings. Matching t-shirts for Finn and Everett. Tokens for Kyle and I to keep in our pockets and grasp when we need strength. And a big, beautiful green fleece blanket covered in shamrocks.

We spend a lot of time singing to Finn, and one of our favorites lullabies is called Too Rah Lou Rah Lou Rah and it's an Irish lullaby. Give it a listen.

And the world stopped spinning...

Even in our darkest of days, it seems we have something to be thankful for, yet we are often so consumed by the fear, the pain, the suffering that we are unable to see the beauty and joy that surrounds us. Today, we take a moment to feel that beauty and embrace the joy--for today, Jen and Kyle were able to hold Finn again. This is Danielle writing again, but here's the updates I received from Jen:

- Today we enjoyed the highest peak in this journey. Jen and Kyle were able to hold Finn in their arms. It truly felt like the world stopped spinning, and nothing mattered but the love shared between parent and child, and husband and wife. 

- Finn's breathing tube was removed this morning, and he seems to look good from a respiratory perspective. The doctor has said that he's on the trajectory toward improvement. 

- The sedation medications continue to cause Finn a lot of pain and distress as his tiny body works to slowly eliminate them. 

- This journey is not for the faint of heart. We are certain we will all come out of this stronger, but tonight our hearts are heavy as our little boy hurts and our big boy misses us and his brother. 

- If you have a favorite passage or verse, a favorite poem or article, a favorite devotional or sermon, please send it to us. Those messages and words have provided so much comfort. 

Over the past ten days, I've been wondering how things like this can happen, and last Saturday night, I talked with a pastor friend of mine, asking him to explain how we are to have faith, how we are to believe in something greater, when moments like this exist. In my mind, it compromises the idea that there is an omnibenevolent (all-good), omnipotent (all-powerful), omniscient (all-knowing) being out there. Yet, my friend responded, "Suffering changes us. It makes us see what truly matters and cuts the clutter from our lives. We aren't worried about the laundry on days like today. So we love, we care for one another, we sit in silence and know that's enough."

In Jen's update to me, she shared that she didn't know this kind of pain existed. She immediately followed that up with, "but I didn't know this kind of love existed either." While there have been moments in the course of this war that have tested the strength, faith, and resilience of Finn and his team, we choose to see the fruits of the love that surrounds him, especially now as he begins to turn the corner. Collectively, the people near and far that have found a moment to pray, send positive energy, read an inspirational quote--whatever it may have been--are supporting Finn, but also Jen, Kyle, and Everett (and their extended family), and all of this is what life is truly about. Today may very well be the first battle that Finn has won, but there are still several battles to go and a very long "war" ahead (to remain consistent in my metaphors!). And yes, there is no doubt that the suffering has changed us--more than we may ever realize. Yet, so has the love, and that love is what we will continue to thrive on.

#FinnStrong

#LoveWins

Soon.

Finn has had an amazing day. He did outstading on the ERT this morning. Docs believe extubation is immient, probably tomorrow.

Please lift us up as we ask for a healthy, safe, and successful extubation (removal of the breathing tube).

#FinnStrong
#LoveWins

This will be the first of many milestones.

More Gratitude

Family.

Friends.

This journey continues, and we have so much comfort knowing that our big boy is taken care of. We've had to "raise our hand" a few times and ask for specific assistance. And we are grateful. So very grateful.

The continued comments, posts, notes, texts, and encouragement. I've received LOVE from people all over the world, from all phases of my life. So many of you shared your "I did it" stories. Stories about babies in the NICU. Stories about sitting bedside with a loved one. Stories of strength and love. And faith. And miracles.

An amazing team of gifted medical professionals. These people are brilliant. This facility is amazing.

Friday Update

Thanks to my sister for updating the blog last night. You've probably gathered that writing to process through this experience has been pretty cathartic to me. Yesterday I wrote, but not here. Instead, I wrote a letter to Finn. And I wrote a letter to my parents. And I wrote out some of my favorite words to really focus on as we hunkered down for another night in the PICU.

Sometime yesterday, just when I thought things couldn't get worse, they did. Our hearts were heavy. Morale was low. We were sad, scared, and tired. Our boy was fighting so hard, feeling so sick. My heart longed for time that Kyle and I could just be with each other and find strength in our love.

These words have carried us through the last few hours. Please join us in reciting these words. Add them to your prayers. Blast them on the radio. Enjoy them.

"Seems to me that God above created you for me to love
He picked you out from all the rest because he knew I'd love you best."
from the lullaby I See the Moon.

"Tell me everything will be okay if I just stay on my knees and keep praying.
Believing in something.
Tell me everything is taken care of by those qualified to take care of it all."
from Dive In by Dave Matthews Band

I've got pretty strong "anchors" to both of those songs, and the lyrics have provided me comfort and peace for many years.

Today's positives:
1. Acorn squah stuffed with wild rice and pecans for dinner (from the hospital cafeteria).
2. Kyle's exclamation, after he finished his dinner, "those brussel sprouts were actually really good."
3. A beautiful box of fruits and nuts arrived today. I've already devoured the greek yogurt covered almonds.
4. The Marines. Specifically, the Marines of Kyle's office. We needed helped with some logistics tomorrow, and within hours the Marines had a plan. We are so grateful for the command support that we've received during this time.
5. Smart Start basketball. Everett's at basketball tonight with some of his best people. I know he's having a great time, getting some of his "big feelings" out through gross motor activity, and enjoying the normalcy of Friday night.
6. Kyle and I found a lot of time to be with each other over the last 24 hours. Last night we sat together breathing and praying. We even spooned. In a recliner. In the PICU. I can't wait until Finn reads this someday and gets grossed out by that post. I can just hear him and Everett saying, "Eeeeewwwwww Mom!"

Keep Running

According to Robert Burns, even "the best laid schemes o' mice an' men/ often go awry," and today, Finn has reminded us of this. As Jen mentioned in yesterday's blog post, the doctors had a plan: today would be another ERT (Extubation Readiness Test) and they'd continue lowering the ventilator's levels while weaning him from the medicines easing his pain. However, just like Burns says, even the best laid plans often go awry. Today, Finn reminded us of this.

As an outsider who sits by the phone (or sometimes the computer) awaiting updates, this process has been difficult, yet I can't imagine what the battle is like on the front lines. Yet, as I keep trying to remind myself, we must all be patient. While plans are a often a good thing--they help us remain focused on our goals. They provide us with direction. And often times, they provide us with a sense of peace because we can see the destination ahead. Yet, as said, Finn told us that the plan that was in place wasn't the best plan for him, and now, the doctors are reassessing and changing course. This is a moment where our patience is especially important.

Because sometimes, this happens. We change direction. This might deter the focus a bit. It might create a hiccup in the timeline we had been planning to execute. It might give us reason to feel frustrated, disappointed, even angry. Yet, the destination still remains, and we will not allow those negative emotions to hinder the progress that has been made or that remains on the horizon.

For we know that Finn is a warrior. And warriors remain undaunted. 

As I am finding out secondhand, the process of withdraw that Finn is battling is excruciating and heartbreaking to watch. As many of you with children can imagine, it is quite possibly the most painful thing a parent can sit by and watch. The helplessness being nearly as heartbreaking as the visible pain the child endures. Unfortunately, this process is one that Finn must move past, no matter how undesirable the circumstances may be. Finn must safely process and eliminate the sedation drugs from his body before he attempts another ERT. Finn's infant body can only manage one battle at a time, and the lowering the levels of the ventilator to attempt another ERT will be a challenge enough. When Finn has conquered one battle, he'll move onto the next.

Despite these challenges, we (Finn's team) embrace the positives. Here are today's from Jen:
- Katie, today's nurse, was strong Midwest stock. She grew up in South Dakota, went to school at the University of Minnesota, and used to work at the University of Iowa's PICU. Finn's local team all laughed about the Iowa/Iowa State rivalry. All agreed that the Cyhawk trophy may make its home in Ames for most competitions, but it belongs in Iowa City when it comes to the PICU Cyhawk award...
- Katie continued on to say, "I'm a gopher, and I hate Wisconsin!"(I'm certain she done pissed off Grandpa Jacke with that comment...but then again, he probably would have already claimed that she was "his love," so it was likely a wash in the end.)
- Jen got to see Everett today. She picked him up from school, played games, and snuggled.
- The attending was pleased with Finn's level of alertness.

Jen listed one of her positives as "One day here is one day closer to recovery. One day closer to going home." And this is most certainly a positive. While the days are long, each moment testing the strength and resilience of those on Finn's team, we must find ourselves clinging to the hope and faith that this battle is progressing, even if we don't agree with its pace. We must comfort ourselves in the belief that the route the battle takes, albeit filled with challenges and obstacles, is the route that leads to the ultimate destination we are all praying for--Finn's full recovery and homecoming. As a runner, I very much know that the race does not always go to the most swift, but rather, sometimes, it goes to the one who keeps running. Finn is still running.

Despite the difficulties of today's battle, despite the changes in plans, despite the shift in direction, Finn runs. And he runs his own race, at his pace, the pace that his lungs will allow.

Tonight, we continue to pray that Finn takes deep breaths full of rich, nourishing air.

Tonight, we pray that Finn feels comfort and peace as his body works alongside the miracle of medicine to beat this illness.

But most of all, tonight we believe in #FinnStrong. Tonight we know that #LoveWins.

I appreciate a smile

28 January 6:00 p.m. update

Apologies for the delayed update today. Finn has needed me (and all of his local supporters) by his bedside for most of the day. He's starting to wake up and working really hard to breath on his own. He's making progress. He's coming off sedation which involves a whole lotta side effects and some pretty scary details. I'll spare you.

This morning, Finn completed an ERT (extubation readines test). He did well on the test, but I prefer to think of it as an assessment rather than a test. Test implies a "pass or a fail" result. Assessment means the team of gifted medical professional can better inform their plan for the day, after seeing the results. He did breath on his own for two hours during the test, but he was really working hard. The clear results of this assessment were that he needed more time to build strength and work with the machines. He's slated for another ERT tomorrow morning.

Kyle and I were on pins and needles as we prepared for the test. The moment the Respiratory Therapist turned down the machine I found myself wretching in the bathroom. I've never wretched like that before, but I guess the sakes have never been so high.

Finn has worked hard today, and he's making progress. He will have another ERT tomorrow morning between 0600-0800 ET. Please lift us up during that time. If nothing else, take a few deep breathes in Finn's honor. Send him oxygen rich breaths and imagine his entire lung rising and falling, filling full of beautiful air. I know your presence is with us, and we will really need your prayers, thoughts, words, and deeds tomorrow morning. Don't worry, I'll be sure let you know if I wretch again!

Right now the medical professionals are working to find the "sweet spot" as they wean him off sedation and adjust the ventilator settings. And, remember, he's still fighting a nasty virus. He's still got lots of junk in his lungs from the illness that put him here in the first place.

But, now, let's go to happy. Let's go to strength.

When Kyle was at The Basic School and we were engaged to be married, he would step outside his room to call as allowed. One of his friends joked that "Kyle was on post again," meaning that Kyle was standing outside of the barracks in the one little corner where he had cell phone signal. Another friend who overheard the joke about Kyle's post responded and said, "Yeah, but he loves, no, he really loves his fiance." So last night as Kyle and I sat together in the chapel, holding each and believing in Finn this memory came to mind. And we decided that we didn't just believe, but we really believed.

I appreciate a smile.

The professionals in the PICU speak a foreign language. Sometimes they translate. We had a pretty steep learning curve, but we seem to be tracking now. So, one of my favorite phrases the doctors and nurse use involves the word "appreciate." They don't use it like you and I use it. They use "appreciate" to me, "yes, I agree" or "yes, I've observed that and agree." But the first few times I heard it I thought is almost sounded condescending (because I was operating from my understanding of appreciate, not theirs).

This afternoon, with some of his very best people at his bedside Finn smiled. Earlier this week, when a little fear and despair found it's way in I wondered if I would ever see Finn smile again. And, just hours ago, while lots of love on his side, Finn smiled. I confidently looked at the nurse and said, "Susan, I appreciate a smile." She chuckled a bit, looked at me and said "Yes, I appreciate a smile." And then there were tears of joy.

Appreciate your smiles, folks.

I'll leave you with this, another bit of encouragement I've received in the last few days . . .  "You never know how strong you are until strong is the only choice you have."

27 January 2015 PM update

The words are not coming easy tonight.

I can tell you I had a great time with my big boy earlier today. We played "hot potato" and worked on a craft. We read stories together and rocked. I can tell you I was holding him so tightly.

We've learned a lot about the whole "breathing by a ventilator" thing. Today the team explained the phases of intubation, of which there are three. The first phase of intubation is the acute phase. Next, you reach the plateau phase. Finally, the wean to extubate phase. We are in the plateau phase. There are many extubation "trials" before the breathing tube is removed. We've also learned a lot about the "sweet spot" of sedation. Well, perhaps "sweet spot" isn't the right term. Basically, the body has to be awake enough to work the lungs and diaphram, but not so awake that the baby gets agitated by all of the tubes and lines running in and out. The nurse explained that we are at a point where they really have to perfect the "art" of the ventilator, sedation, etc. The science has been running things so far, and now is the time for art and science to work together.

We've had a lot of questions about the timeline for all of this. I wish we had a timeline, but Finn will tell us when he's ready. He and the doctors continue to work together toward a full recovery.

We are currently approaching the one week mark. And that's terrifying. A week since I held my baby. A week since I sat with him and nursed him in my arms. A week since Kyle and I slept next to each other and held each other in our arms. A week since our perfect little family sat together at our dinner table, joined hands, and blessed our meal. A week since I hollered at Rex for constantly being underfoot! We aren't there yet, but it's fast approaching.

Finn will tell us when he's ready.

One day at a time.

He made a lot of progress earlier, but maybe he was running sprints, and now he's taking some time to recover. Maybe he'll run a few sprints again in a bit.

A friend reminded me earlier "he's got a freaking army (errrr. . . Special Purpose MAGTF) of support behind him."

He's a strong warrior.

For now, Kyle and I are settling in for a long night. In a few minutes, we will sit together and breathe and pray.

Our nurse tonight is an "Army brat" and her grandparents live in Okinawa. She's telling us stories about spending her summers in Okinawa and working in her Obasan and Ojisan's (grandparents) sushi shop. Talking with her took me to a happy place. She's normally a NICU nurse, so she has a lot of experience with babies.

No Hill for a Climber

Update from morning rounds:

Finn is a setting trends. He beat yesterday's 24 hour goal by hours. He's kicking butt and taking names (they start with R, S, and V) right now. Remember the blog post "Lessons from the PICU?" It's all about trends.

Finn's working some more goals today. They include multiple ventilator settings, and a reduction of sedation. Please pray that our boy can be weaned off the sedation drugs naturally. There have been a couple discussions involving the drugs methadone and ativan. We pray Finn, along with the doctors and nurses, can do this without the support of withdrawl drugs.

Here are a few of my positives to start the day.

1. I slept. A lot. Well, a lot of 3-4 hours blocks. I feel more rested than I have in days.

2. Last night as I was drifting off to sleep in the recliner I heard the night nurse and Kyle giving Finn a bath. Kyle got to wash Finn's hair, and Finn's eyes were open ever so slightly. Kyle told me that Finn was tracking him with his eyes. Finny knew it was daddy who was washing his hair.

3. Finn's working his goals. He already BEAT the 24 hour goal from yesterday morning! I could tell you all of the numbers and settings, etc, but it's a lot of jargon and medical terms. The docs will set some more goals today, one of which may include reducing his level of sedation. (Wow. Could that goal be more vague?!).

Hallelujah. Glory to God in the highest.

4. I had a delicious dinner last night. Vegetable lentil soup made from my own home. It was so hearty and filling.

5. Kyle spent a lot of time with Everett yesterday. They played games, ate dinner, played monster trucks (talk about a trend!), had a bath, and read stories.

6. Kyle just served me breakfast in bed. Well, bagels and coffee on the rolling tray table that fits nicely in front of the recliner. So, breakfast in bed. :-)

7. DC is having a snow day. Iowans, don't get confused. DC snow days are a bit laughable. But, even though we are having a snow day and schools are closed, nurse Susan is here. And, nurse Susan is the one who feels so confident in Finn's ability to slowly wean off sedation.

8. Day by day in every way Finn is better and better.

9. 1st Corinthians 13.

Finn Strong
Love Wins

Gratitude

Friends and Family.

Wow. I feel so much gratitude for your thoughts, prayers, words. I received so much encouragement today from people all over the world, and from every phase of my life. I'm feeling truly humbled by y'all.

Finn has had a good day. Sue, our day nurse just left, and she was very positive about Finn's progress. He's still working toward a big goal, and we should know more tomorrow morning about his progress. We are still days away from extubation, but he's doing great.

And . . . just cuz in this situation I'm completely okay with being "that mom" . . .  I'll tell you that Finn pooped TWICE today! Yeah!

I thought I would mix it up with this evening's post and share some humor with you. I'm not sure if this stuff is actually funny, or if it's only funny when you are in PICU delirium.

* This morning on rounds the Attending asked the Pharmacist if she had any concerns or suggestions. This was after a discussion of the sedation drugs (narcotics), the antibiotics, the diuretic, and all of the other stuff they are administering as needed. The Pharmacist said, "Let's get him started on a multivitamin." Kyle and I had a little laugh about that. So . . . take your vitamins!!

* Sue is our day nurse. We really like her. She's another one of those "gets sh*t done" people you want on your team. Her eleven year old son is a wrestler and he had a meet yesterday. Another staff member was talking about her days (in the 70s) as a wrestling cheerleader. I had a good laugh thinking about my mom's and aunties' stories of their days as wrestling cheerleaders. So . . . I looked up YouTube videos of wrestling cheerleaders. My favorite was D-E-T-E-R-M-N-A-T-I-O-N, Determination. I couldn't quite get the hand clap down, but I tried. Finn needed a cheerleader today, and doing it with a little levity was fun. Sue was even cheering about his "peak pressures" (ventilator jargon) and his "tidal volumes" (more vent jargon). She stood at the end his bed and had arm movements and everything.

* Okay . . . this one's not so funny, but is a good reminder about basic tact. I got on the elevator to go get a cup of tea and this woman looked at me and said, "we are you due?" OMG!!! I looked her square in the eyes and said, "I'm not pregnant. My baby is eight weeks old and in the ICU." She was stunned. If only I had been quick enough on my feet to tell her about the PICU diet.

* Speaking of the PICU diet . . . Kyle's been munching on my lactation cookies. I understand he wants to do EVERYTHING he can for baby Finn, but lactate, really?! Just saying.

Family and Friends,

During this morning’s “rounds” we received encouraging news. The doctor who was the first to see Finn when he arrived, and who knew him at his worst, gave us a very big and reassuring full face smile after looking over all of his charts today. He is not out of the woods yet, but he is on the mend and the doctors are very encouraged.

Finn has been making slow but steady progress in beating this virus, and he is approaching a major milestone. Pray for continued progress toward that goal.

Thank you all for the continued prayers, love and support. Hug your babies tight and give them big kisses.

Love Wins!
Kyle and Jen

25 Jan PM updates

25 January p.m. updates
today's positives

Kyle and Everett spent the day together at Monster Jam (a monster truck show).  Upon his return to the hospital, Kyle shared pictures and videos and stories relaying the joy in Everett's eyes and the enjoyment Kyle had with our first baby.

My best people were here with me to hug me and hold me and make sure I ate and help me leave the building for a little bit. We couldn't feel more supported right now

Finn has had a really uneventful day which in the ICU means it's been a good day he is resting and working and fighting . I know that the light and love and prayers and hope are here with him

Our birth Doula just met me in the hospital chapel and offered a massage and some reflexology to help me relax, help me sleep, and help me make milk. She's working with Kyle on relaxation massage now.  Both mama and daddy will get some sleep tonight.

We have pictures of Finn pre-RSV hanging in our room. And, we have a focal point. One of our bucket list family vacations is a hiking/camping trip through Denali NP. More on that focal point later . . .

Tony
Tony, a navy veteran, was our day nurse. Tony was a great fit for Kyle and a great fit with our family. He was organized, clear, and concise. He had a method. He got sh*t done. We didn't feel like he was sugarcoating anything, so when he said goodbye at the end of his shift and said, "Finn had a great day" it meant a lot. Getting to know Tony yesterday was great -- he's one of our country's successfully transitioned veterans. He made a drastic career change after the military. He used his Post 9/11 GI Bill to do it. Meeting him yesterday just reminded me that Kyle and I have been living right. We do good, and good begets good.

Love Wins.

Finn Strong.

FAQs

Yes, I did that. Here are some answers to the your most asked questions.

Q: Any idea when he will be coming home?

A: No, no idea, no timeline. We'll got a lot of milestones to reach before we will have an idea of his recovery timeline. But, we do know he will come home. Whatever that looks like and whenever that happens will be just fine. Because he will come home.

We do know that Finn works on his own timeline. It took more than two years to conceive our little Finn. His labor and delivery was much longer than Everett's. But . . . when Finn decided he was ready to enter the world he came with gusto! We hope he'll do the same when he turns the corner of this illness.

Q: How long had he been sick?

A: He'd been congested with "just cold" for a few days. We were not concerned about it until Monday night/Tuesday morning when I took him in to his primary clinic. We saw a doc and explained the symptoms. The doc examined him and said his "lungs were clear." He did not have a fever. The next morning I took him to the ER. Multiple docs examined him in the ER and multiple tests were conducted (including an RSV test). All of the tests were negative and the doc interpreting the chest xray said, unequivocally, "this is not a pneumonia. It's 'just a cold'." We were discharged. Less than 6 hours later he had spiked a fever and was in complete respiratory failure. Less than 10 hours after our initial discharge he was in a trauma room, surrounding by 14 docs, nurse, techs, etc and they were saying things like "ma'am, were doing everything we can" and asked me to summon Kyle to that ER immediately. Something like "your husband needs to be here with you as soon as possible." It was the stuff that parents' worst nightmares of made of, but worse than that.

Q: What can I do to help?

A: Keep our family in your prayers, thoughts, words, and deeds. Do what you do when someone you love is hurting. Send us encouragement --- a note, text, Facebook post, comment on the blog. We kept this information private for a few days, but all of us need support. We have a network of friends and family all over the world. So, if you think of us, reach out. Trust me, you aren't "bothering me." I will respond if I can, but do know that I have reach and appreciated every single message we've received.

Choose love. Hug your babies. Then hug 'em again. One more time for good measure. Pick up the phone and call that person you haven't spoken with in awhile. Choose love.

If you are nearby and can offer support to Everett and our team of people back at the house let me know. If you can reasonably meet Kyle or I at the hospital (or home) for lunch, coffee, or to drop off a meal, thank you! Most of you reaching out have beautiful babies of your own, and the PICU during cold/flu season is no place for visitors. We have a long road ahead and look forward to our playdates after Finn is recovered and far, far away from the hospital.

Remember us in six weeks, when we are still coping with this experience. Check in with us then.

Wash your hands. Cover your mouth (with your elbow, not your hands). Listen to your gut and your mama's (or daddy's) intuition.

Hug your babies.

Q: What's the set up at the hospital like?
A: Real answer -- the PICU is the saddest place I've ever been. So many kids with so many different critical illnesses. I wouldn't wish this experience on my worst enemy. Well, unless my worst enemy's baby was critically ill, in which case I'd pray that my worst enemy's baby recovered.

I can't stay in that sad place for long.

So, let me tell you everything that is great about our set up. We have a recliner in Finn's room, where we can sit, and sleep. There is a sleeping room down the hall (more of the same recliners) and it is pitch black 24/7. We have access to a washer and dryer, refrigerators, microwaves, keurigs, showers, towels, and fresh linens. I have a hospital grade breast pump and can sit near Finn when I'm pumping. Often, when I start pumping he starts moving his little mouth and has a sedated version of his natural suckling reflex. I believe he can smell the milk and is dreaming of being in mamas arms with those big, giant milking machines near him.

Q: How are you and Kyle holding up?
A: We have faith that Finn will go home. And most of the day, most of the night, through most of the conversations with docs, nurse, and techs we hold strong to that faith. But we break. We cry. We question. We pray. We breathe. In the early moments of this crisis we promised each other that no matter what happens we will be stronger parents for this. No matter what happens we will be stronger partners for this. And, no matter what happens our family will be stronger for this experience.

My eyes are more bloodshot than I even knew was possible. We're both on different versions of the "PICU Diet." Kyle's relies heavily on potato chips, hot dogs, coffee, and chocolate. I'm sticking to small meals of yogurt, granola, fruits, veggies, bagels, hard boiled eggs. I don't either of us has much of an appetite. Yesterday I didn't have a ounce of coffee. That won't happen again.

We have a lot of support here right now. Kyle and I are both resting as much as possible.We are trading shifts at the hospital. So far, at least one of us has seen Everett every day since this started. I'm pumping every 4-5 hours, so my rest is in small stretches. Last night, our birth doula came to the hospital and gave each of us a massage. Another friend is working on a healing and restorative yoga series for me.

Kyle and I turned toward each other and chose love a long time ago. That doesn't mean our marriage is perfect, but we know how to choose love, and we know the power of love.

Don't get me wrong . . . this sucks!

Q: How is Everett?
A: He is in the best hands. He's doing okay. We have a strong vernacular to discuss fears, concerns, questions and I am confident in the foundation we've given Everett. He will talk to us (or his people) when he's having "big feelings." He loves Finn so much, and he asks about when Finn will come home every day. There are some outstanding professionals here who will help us help Everett with this.

25 Jan AM updates

Morning positives

1. Night nurses give baths. Last night I got help with Finn's bath. I rubbed lavender lotion into his sweet skin, and rested my hand on his legs. Finn has always loved baths -- even as a 5 day old newborn we would just look around and listen to the water and enjoy the experience. He doesn't love PICU baths, but thinking about him bathing back at home was pretty powerful. So, lavender lotion and mama's touch.

2. Hemoglobin levels are borderline, but okay for now. No need for a blood transfusion this morning.

3. The docs adjusted the vent and are trying to back him off some other settings and let his little body do some work. Time will tell.

4. Kyle and Everett are at Monster Jam, a monster truck show (and Kyle's birthday gift from Everett) today. They should have a great time together.

5. Some of my favorite people are coming to hang out with Finn and me. I'm pretty sure one of them will get me out of the hospital for a few hours . . .  while the other sits with our boy.

6. Mama got some sleep. Daddy racked out hard (something about Marines being able to sleep anywhere).

7. He's still on max feeds, and today during one of my pumping sessions the milk went directly from my pump to Finn's pump. So, right now he's enjoying mama's warm milk. He actually starts moving his mouth a little bit when I'm pumping, so I'm convinced he can smell the milk.

8. I was issued my "Parent Extended Stay" security badge yesterday. Add that to the list of things you are so glad to have when you get them, but never really wanted in the first place. Sort of like the Deployed Spouses Card. (Right, Megan?!).

#LoveWins
#FinnStrong



7.

24 Jan PM updates

Positives
1. completely normal EKG!
2. lots of wet diapers!
3. good toleration of the vent changes and he's taking a few breaths on his own!
4. I had a group hug with some of my best people when I went home for a few hours!
5. Homemade lactation cookies from not one, but two, of my neighbors!
6. Almost a thousand people have read this blog today. Wow. I am so humbled by the outpouring of support and filled with gratitude.
7. When I sing to Finn, his heart rate calms down a bit. Those of you who've heard me sing know how positive that is . . . tone deaf and off key he still likes what he's hearing!

Lift us up! We ask for improvement in Finn's hemoglobin levels. Please heal Finn's blood and help it to be strong again.

Off to close my eyes and quiet my mind (Kyle's already there).

#FinnStrong
#LoveWins

Lessons from the PICU

If you've ever held vigil, by the side of a loved one in the ICU, you already learned these lessons. You might even have more to share. 

So far, here are my Lessons from the PICU . . . 

1. Everyone else works in 2 or 4 or 6 or 12 hour blocks of time. When you sit bedside 24/7 you are waiting, hoping, wishing for information every time a medical professional walks in the room. You want to ask: "How'd those labs look?" "What's that alert sound?" "any update on the xray?" "how'd the EKG look?" And you want to ask these questions every time someone walks by the door, peeks their head in, or just comes in to check vitals. 

So . . . Patience. 

2. We are looking for trends. We need our boy to be a trend setter! Once a trend is established by the docs a real move toward recovery is made. Baby steps. One step forward, another step laterally, there might even be a step "backward" sometimes. 

3. A day in the PICU that's not a BAD day is a GOOD day. So, we've been fortunate. One Thursday, after about 12-14 hours of "we don't know what is making him so sick" we got a diagnosis. Just knowing what we were dealing with was a huge win. On Friday he started receiving breastmilk by feeding tube. He's been taking up to max feeds. On Saturday we started getting rid of a lot of the junk that's in his chest. He's getting a lot of suction, which means all that gunk is coming up. Sometimes something GOOD might look BAD . . .

4. The nights are hard. I'm exhausted. Stuff happens, but I'm alone in the room with Finn (Kyle's down the hall in the sleeping room). I've waited all day for that "news" (see #1). The nights are hard.

5. Our support team is amazing. We've got a support team near and far. People have done amazing things to take care of us. Everett has been in the very best care from the minute we put out the calls. People have delivered food, processed military base access passes, cleaned our home, picked up our dogs and cared for them, baked me lactation cookies, driven hours to spend a few minutes talking and laughing with us. People are making immediate plans to be here for support, other people make the genuine offer to be here for support later as this battle will take some time.

6. Love wins.

24 January 2015 AM positives

Today's chest x-rays look better than yesterday's. Yesterday's were better than Thursday's. X-rays are trending in the right direction.

Finn's been on his "max feedings" for about 18 hours nows. He's receiving all breastmilk and as much as possible given the condition and situation he's in.

 Momma's still making lots of milk, pumping, and storing.

 Kyle's having lunch with an old friend. A couple of Everett's favorite people are here with him.

 Momma slept last night

#FinnStrong

We spent a looooooooong time naming Finn when he was just a few days old. We discussed lots of options and had a lot of criteria to find the 'perfect' name. (Kyle even developed a decision matrix spreadsheet on the marker board in our postpartum room). And we settled on Finnegan. We always knew we would call him Finn. Some of you probably scratched your heads and chuckled a bit. His name isn't exactly "normal" or "classic." But, we always knew we loved the meaning. According to Nameberry, "Finn is a name with enormous energy and charm, that of the greatest hero of Irish mythology, Finn MacCool (aka Fionn mac Cuumhaill), an intrepid warrior with mystical supernatural powers, noted as well for his wisdom and generosity." Our Finn is a strong warrior. With big beautiful blue eyes, and a giggling oohing and cooing personality. The last few days have been tumultuous. What started as "just a cold" quickly became respiratory failure involving a trauma room at the Ft Belvoir ER, hours to stabilize and transport his perfect little body, and now a stay at the Pediatric ICU in one of the finest children's hospitals in the country. Kyle and I (along with our support team) will focus on the positives, and are really trying to avoid spending much time in the "what ifs." The worry and fear won't help. So, each day I will update you with the "positives." Some days we may need to focus on a "what if" or pull for a particular outcome, but for now we just count the positives, no matter how small. The team of docs, nurses, technicians, and support staff is amazing. The support received near and far has been amazing. Our "boots on the ground" support here in DC has been awesome. I never once had to bat an eye and wonder how Everett was doing. Food deliveries, friends to laugh with, and all kinds of errands and favors to support our Farrell-Mattox family. For now we agree that a day in the PICU that isn't a bad day is a good day. So, using that definition all of our days here have been "good" days. The docs look for trends, and we take baby steps to recovery. Right now we need your support through your thoughts, prayers, deeds. Take us with you to church if that's what you do. Take us with you to the yoga mat or on your long run or during your WOD, if that's what you do. Take us to your temple, or sangha, or favorite spot in nature. I know some of you want to visit, but the PICU isn't a place for many visitors. We will move to a regular hospital room soon, and then we will transition back home eventually. We'll visit then! When you wonder, "what can I do" please just hug your babies a little extra, trust your gut instinct, take care of yourself if you are ill, and WASH YOUR HANDS!! Today's positives coming soon .