Traditions

For Ava's 3rd Birthday, friends gave us their timeshare in Timber Creek, MO, allowing us to began this precious tradition of getting away together. Over time, Ava Day has become a weekend filled with permission to dwell on all the moments we had with our Bean, intentional reflection on the countless ways God has provided for us, and heaps of family time to snuggle, practice our harmonizing while we make and clean up meals, read aloud and PLAY. I always go back and read our blog and remember what God has done. Gosh it's been a crazy journey...and He has truly sustained us.
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Ava Day 2020

Friday night we left the city for our annual weekend to celebrate Ava Day. May 24 marks the day she was born at a mere 2 lbs 11 oz, and the day she died, after only one year with us. We are forever marked by her life and this weekend has become a treasured family time. We gave each of the guests at Ava's first birthday party a peony bulb and have since developed such a love for these delicate, beautiful, fleeting flowers. We usually go see the peonies blooming at the botanical garden, but due to Covid-19, we had to skip that this year....then these beauties greeted us at our friend's home. 💗I'll be posting more pictures and reflections throughout the weekend. If you have memories you'd like to share, I'd love to hear them! 💗

Happy Easter!

What sweet mercy to spend Easter together. We are socially distant and masked up for another week, but at least we're in the same apartment! 😍 since both Matt and I tested positive for COVID, we need to keep Elizabeth a safe distance away for another week, but she's assured us she's having a grand time, (swipe for evidence 🤩) and I think we now see the bigger challenge will be convincing her when it's time to come home. 😅. God is so kind, and we are on the road to complete recovery. Happy Easter friends! He is risen! He is risen indeed!

Looking to the hills...

“I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth.”
‭‭Psalms‬ ‭121:1-2‬ ‭

On Thursday afternoon, the girls and I enjoyed #paintingwildflowerslive.  Thursday night I developed a tickle cough and wheezing.  So yesterday morning we had to activate our “worst case scenario” plan to protect Elizabeth in the event both Matt and I got sick. We thought it would be a disaster. We wanted to avoid it at all costs. Yet in the end, there is sufficient, inexplicable grace.

💗I had just laundered the few sets of clothes we have with us in our *annex* apartment, so I donned gloves and a mask and was able to pack Elizabeth easily and send her to stay with dear friends Andrew and @hannah_lou_chandler.  After some initial anxiety and sadness about being separated from Hannah, she rallied and was so brave.

💗in a miracle twist, a friend of a friend who had already had covid and Is now safe from sharing it, took our car and delivered Elizabeth safely, avoiding her the risk of riding Uber. This angel-friend also picked up a box of surgical masks from a neighbor and delivered them to a dr who needs them at his Bronx Hospital. She then took my grocery list and got our refrigerators stocked for at least the next week. What grace.

💗we decided to move Hannah back home, since the front of the house is now clear of germs and Matt’s quarantined in the back.  After a rough start at bedtime, she’s done much better today.  Neither of us will be ok missing those bedtime snuggles, but Ruby is quickly becoming a good stand in.

💗So here we are doing the very thing that a week ago was unthinkable. Both Matt & I seem to have relatively mild symptoms, and are praying for new mercies, sufficient grace and peace that surpasses all understanding for each member of our family.

💗 Gosh I wish this were playing out differently. But even this would be impossible without incredibly generous neighbors who handed over their apartment, extraordinary friends who welcomed Elizabeth with open arms and are loving her well, and if not for the trust muscles ALL of us have developed over years & years of seeing God provide.

A slight delay

“For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.”
‭‭1 Corinthians‬ ‭13:12‬ ‭(KJV‬‬)

There is so much we don’t understand.

This verse has been whispering in my ear over the past few days, when I wake up, when I lie down at night, and a dozen times in-between.  The window faces west...giving a perfect view of an oncoming storm.

I sit in our neighbor’s cozy quarantine apartment with two healthy girls, and look through this window multiple times a day.  There are beautiful springtime views that catch my attention even through the city grime on the glass, and at other times the sky is cloudy and all looks grey and foreboding.

There is so much we simply can’t see clearly right now. But we don’t have to. That’s not the point. The one who DOES, calls himself our refuge and our strong tower. I look to him and trust, even when I can’t quite make out what’s coming.

We were so looking forward to a family reunion in 4G on Saturday. Ruby has been well and we’re ready to be TOGETHER again.

Sadly, it’s not going to happen this weekend.  Matt has developed wheezing and flu-like symptoms, so we’ve had to start our COVID clock over again.

We definitely didn’t think we’d be spared, but to have this happen while we’re still separated is wearying.

We would covet your prayers for a mild case and quick recovery for Matt, for sweet Rubykins as she is isolated in the front of our apartment, (thankfully with plenty of access to zoom and FaceTime. 🤗 and for wisdom as I parent and shepherd my girls hearts through the disappointment and homesickness we all feel.

Success!

She did it! They were in and out in 20 min, home before Matt's virtual ALS clinic started at 8:30 and we got to spend the afternoon #paintingcats with the incomparable @amanda_evanston. What a treat!

Venturing out

Today Elizabeth had to venture out from our quarantine cocoon to get her blood drawn. Matt took her into the hospital and without touching any surfaces, whisked her in and out so later today her transplant team can make the necessary adjustments to her immunosuppression based on the results. Will you pray for her protection, and specifically for her Tacro levels to be optimal so we can space out her blood draws and limit her COVID19 exposure?

God has sustained her life for 15 years now, and we know he will be faithful to continue.

Coming up for air

Hello! I’m finally coming up for air! 😅 Quarantine has been for us, like it has been for so many. We’ve relished in even more together time with Matt working mostly from home.  We’ve played games, worked some puzzles, read some books, taken a few walks at a safe distance from friendly neighbors. We’ve FaceTimed or Marco polo’d, or zoomed to stay in touch with friends, our church family and our family-family also sheltering in place around the world.  I’ve taken up stress-baking & stress-eating...just to keep balance. 😉

We’ve also struggled to find a rhythm for our new normal...just when I thought I’d found my footing, Ruby spiked a fever on Wednesday night and we found we had to separate her from Elizabeth both for the risk of COVID19 and honestly the risk of ANY exposure to ANYthing now that she’s so immunosuppressed. 

Mercifully, a neighbor on our floor is out of town for the next month, and we were able to schlep ourselves to their apartment! 🙏🏼🙌🏼 Such grace. 

Now we wait. E needs to be away from Ruby for 14 days...so we’re counting down to a week from this Saturday...until then, we FaceTime and zoom and I get coffee delivered to my door every morning by a handsome delivery man. 💗

Social-distancing & an update

It’s been so long since I’ve posted any updates about our family or Elizabeth’s transplant recovery. Honestly, I’ve been battling with low-grade depression since E’s surgery & it’s been easier just put my head down & deal with the urgent needs in front of me.  With COVID-19 in the forefront of all our minds, some of you have been checking in & I wanted to let you know how we’re doing. 

Social distancing has been our middle name since November! After two glorious weeks in February when we got to visit colonial Williamsburg mostly mask-less & attend a class for school IN PERSON...we’re back to our old routine of self-quarantining & keeping Amazon & Instacart in business. 😷. The GREAT news is, Elizabeth is doing brilliantly from a transplant recovery perspective. Following months of tinkering with her meds on a weekly basis, her labs all look  great, & she’s once again gaining weight, & is fully off the additional immunosuppression required for the first 3 months post-transplant.  She got a mild cold and handled it like a champ, so that bodes well! She’s been having a mysteriously high heart rate for a few months now, so we’re investigating that, but all-in-all, she is doing so well. 

Many of you have asked...Matt’s still working in the hospital, but they are pushing off any non-urgent patient visits they can & utilizing tele-medicine whenever possible.  He had his first “possible exposure” experience last week and it really drove home the reality that for him, and us, if feels like it’s only a matter of time. 

I’m not exaggerating when I say this only feels a *bit* different than how we’ve been living for the last 15 years.  So much of our future has been uncertain for so long. “Through many dangers, toils and snares” we have seen God’s daily bread provided so faithfully that we know he will continue to meet us where & when we need him.  We have learned, even without certainty of our future, we have deep & abiding hope & it is our prayer that we can share that peace & toilet paper 🤗 we have with our neighbors during this scary & uncertain time. 

Please pray for our protection & for joy to abound in our home.  How can we pray for you?? 💗

Thankfulness Abounds

If our best laid plans had worked themselves out, we would be sitting in the hospital waiting area today while Elizabeth underwent a living donor liver transplant. Instead, I woke up with thanksgiving on my lips and got to snuggle with My firstborn, a cup of coffee and my journal. 💗Because God's ways are infinitely better than our ways, we have been home for TWO WHOLE WEEKS and Elizabeth's liver has had 24 days of its second life. 💗Ruby turned 12, Thanksgiving came and went and Elizabeth's recovery has been so very smooth. Sometimes when the weight of want to say is so great, I simply can't find the words. The reality that we are home and enjoying these precious and mundane moments together is a miracle and a tremendous gift. Words seem too small, but I will try to express what's in my heart.💗Life was shared with us, at great cost to someone else. We owe such a debt of gratitude to our precious donor.  We pray Elizabeth's second chance life will bring some measure of comfort to a family walking through great loss. 💗Today also looks very different for our living donor family. Lisa is a childhood friend of mine, who willingly put her and her family's life  onto the rollercoaster our family was on when she offered to share half of her liver with Elizabeth. Lisa and her husband spent a week here this summer undergoing tests to make sure she was a perfect match. She began to up her exercise and even completed 3 triathlons to give Elizabeth the strongest liver possible! Our initial date of Nov. 7th, was postponed to Jan., then moved up to Dec. 3, and Lisa was gracious and patient with all the changes, expressing that her priority was "for Elizabeth to get the best possible liver".  Lisa's family was totally on board and ready to spend their holidays here in post-op recovery. When we got the call, their family did too. Their family stood on the sidelines and cheered us on, even as they processed that their precious gift wasn't going to be able to be shared. 💗Lisa's commitment to be available whenever we needed her allowed us to have incredible peace about waiting and hoping for a deceased-donor transplant. The stress of not knowing if and when our lives would changed was mitigated by the knowledge that we had a transplant date on the calendar. 💗💗Lisa and Jared, are heroes to our family. Generous, gracious heroes. We love you

Instead of heading into a transplant, we headed to our weekly bloodwork and follow-up appointment. Elizabeth's liver continues to thrive. She's stopped losing weight and is no longer dehydrated. She's been off pain meds entirely for over a week. Her spleen (impaired by the clot in her portal vein) is working perfectly now & she no longer has neutropenia! She's a walking miracle. 

To say we are thankful is an understatement. To say we are tired,  is a fact. 😳😂 God has been so faithful. Happy BELATED Thanksgiving. 💗

Sent from my iPhone

Home and Healing

I'm sorry I seemed to drop off the face of the earth as soon as we hit the front door! After a few days of adjustment (read a little less TV, a smidge more sleep, & lots more family time) Elizabeth is in her happy place. She's still pretty fragile, so God forbid she get any school work done, :) however she's got plenty of energy to take short walks around the apartment to earn her TV time, (Mom's a drill sergeant) and she's got Grandmas and Sisters to keep her supplied with treats. Her first follow up appointment went well. She's lost quite a bit of weight, so we're trying to get her appetite back, but her liver is still very happy and overall, she's recovering so well!

My mom (Granna) left on Friday morning, and Matt's mom (Grandma) came Friday evening. We're so blessed by Grandmas who travel and jump right in to support and encourage us!

Home!

She's home! First the girls had to soak he every minute of media time (notice the 👀) 😂, then we got the third rundown on all her medications, set up our clinic appointments, packed our bagels and hailed a taxi! Clearly she's a New Yorker. 😍 so so happy to be home sweet home. 📷 credit: @suzie.peterson

Miracle of miracles!

Thank you so much for reading these updates, and responding with your encouragement and prayers! Your support during this time has been an incredible gift. 💗

It is a marvel to see how far our Joy-child has come in such a short time:
💗10 days ago we received the call. 
💗9 days ago someone gave us the greatest gift, and 10 hours later she was recovering in the PICU with a perfectly-matched, healthy new-to-her liver! 
💗4 days ago she underwent her closure surgery. 
💗Today, she worked with OT, PT, got in and out of bed without help, took a shower, climbed up and down a flight of stairs, walked 6 laps around the fourth floor,sailed through a chest X-ray & abdominal ultrasound confirming her lungs have fully recovered, and had both of her drainage tubes removed. Her abdomen is officially “sealed up tight” and if all goes well tonight, her team would like to send her home tomorrow! 😭🙌🏼🎉💗
FRIENDS!! I’m speechless. And eating celebratory strawberry pie! #itwasawholepie #nowitsnot
God is so so good! 

Happy Sabbath

Visits from two different therapy dogs 💗
Breakfast treats sent from a friend 💗
Having two new friends from @tgcwestside as part of Elizabeth’s care network at the hospital 💗
Retro bingo complete with the ball tumbler makes for a sweet girls’ afternoon 💗
Get well cards from friends at @tbt.nyc  to cheer Elizabeth’s heart 💗 
Happy Sabbath 💗

What a Difference a Day Makes!

If I tried to give you the play by play, it would take me 6 paragraphs, so I'll simply say, praise be to God, Elizabeth is on the mend! 

* She has been fever free for over 24 hours
* Though she still has significant chest pain due to her collapsed lung, her hatred of the high flow oxygen 😅 has motivated her to practice slow deep breathing, 🙌🏼 and she is slowly improving!
* Her abdominal pain is so improved that she no longer needs her pain med pump. Oral meds means she can get transferred out of the PICU 🙌🏼
* She took 2 walks and sat up for about 4 hours in total today! 🤯 Remember how she had abdominal surgery only 48 hours ago?! Between the physical therapist and the respiratory therapist and the nurse, she had quite an adoring entourage! 
* Her appetite is slowly returning and she enjoyed both pizza and a friend's homemade Mac and cheese! 🍕 🎉 #ispydaddystealinghermuffin 😜
* Because her heart rate, oxygenation and respiratory rate were stable, we gave her a trial off of her oxygen & she did amazingly! 
* Because she'd spent all afternoon off her oxygen and was maintaining her sats, she was cleared from respiratory therapy, another hurdle to leaving the PICU

Finally...just after shift change, we got assigned to a room outside of the PICU! And by 9pm, we were making ourselves at home on the 4th floor! 

Needless to say, it's been a wild ride, and we go to bed with thankFULL hearts. 💗



Sent from my iPhone

A Bump in the Road

After almost a week of steady improvement, today Elizabeth hit her first significant bump. She began having heart rate spikes, then developed a low grade fever and trouble breathing. Based on her bloodwork, cultures and the chest X-ray, her left lower lung is collapsed and she has a pulmonary embolism. Both of these can be side effects of abdominal surgery (No one wants to breathe deeply when their belly hurts!) but it's terribly uncomfortable. They also saw some fluid in her abdomen and her white blood cell counts indicate she's got a bug brewing, so she's in the right place to be taken care of quickly. As of late this afternoon, she's definitely more comfortable with high flow oxygen, we've ruled out the terrible things (the liver is still happy) they've tinkered with her meds and now we wait. 🙏🏼🙏🏼🙏🏼💗💗💗
As I walked from home to the hospital this afternoon, this song (Be Still my Soul) came to mind. I drew so much courage from knowing the One who was there when she came into being, is with her now. Her body still knows it's Maker and will listen when He says "Peace, be still".

Surgery 2 Update

She's back from surgery, mostly comfortable after some big bumps in her pain support, and now we're starting the last leg of Phase 2 of our transplant journey! Shockingly, she could be home before thanksgiving! My brain is still not computing that possibility, but that's what I'm praying for! 💗

Closure Surgery

Elizabeth is back in surgery to close her abdomen this morning. They expect it to last between 1-3 hours. Leaving is the worst part. I snapped this pic last Saturday morning as we were heading to her transplant. She was wheeled away on her bed this time...anxious but brave as always. So much has happened in less than a week! Praying for sweet dreams wisdom for the doctors, and a successful closure. 💗🙏🏼💗

Hard days come too

Fun Memories

Tbt The girls' first Scout overnight camping trip! 🙌🏼 We were only 13.1 miles from our front door, we were gone for exactly 24 hours, and we broke down camp and hiked out in the rain, but it was a blast! Scouts is just one of the activities we've intentionally added to our family schedule this year. We were so thankful the camping trip took place just weeks before the transplant! We're thankful Ruby & Hannah can still participate while E is recovering, and we're especially thankful for precious family time.
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Today was another great day for Elizabeth. She still has bouts of severe and distracting pain, but she's also acting more and more like her healthy self. She's such a trooper. Her overcoming joy, amazing tolerance and quirky sense of humor amidst all the poking and prodding and invasion of her physical space is inspiring, and brings out the best in me when I'm with her. She's a rock star patient. Meanwhile Ruby & Hannah are troopers too! Pray for all the tender, tired hearts. It's hard to be outside the eye of this emotional hurricane. 💗🙏🏼💗
Thank you friends