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. 💗

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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. 💗



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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

A Walking Miracle

Thank you to everyone who prayed for Elizabeth’s night! It was so much better. Matt thinks he gets at least *some* of the credit, and in exchange for staying again tonight, I’m gonna let him. 😉   Long story short, she slept well, wasn’t as agitated and let everyone get good sleep! What mercy.
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Today was pretty eventful for her. We’re making baby steps toward getting transferred out of the PICU. In fact, she’s a walking miracle. And by “walking” I mean, literally, standing up and taking a walk to the far wall! 🤯🙌🏼 a little more than 48 hours have passed since she received a liver that “doesn’t know it’s been transplanted,” (I’m looking at you normal liver function tests!?) and she’s doing brilliantly! (Swipe to see the proof!)
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She also was able to graduate from a bunch of her IV meds. She’s a pro with pills, so once her blood thinners reached the right level, they were able to take out all this hardware!
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Please pray for another night of good sleep, protection for all of us from the winter bugs flying around, 😷 and for her pain to continue to improve.
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Thank you precious friends. Your prayers and support are lifting such a heavy burden off our shoulders. 💗

Liver Love and Some Ups and Downs

The last 24 hours have been both really good and really hard. First the good: medically speaking, Elizabeth is doing amazingly. Her liver is acting like it didn't know it was transplanted! 🙌🏼So many numbers are coming back in the normal range. She *sat up* today, got a dressing change and finally bit of a spa treatment courtesy of her awesome nurse. So thank you for all those prayers! They really are sustaining her. Also in the "good" column is: a nap and a short for Mama; E got a visit from Granna & the girls; a visit from our pastor; meeting the newest @torrejonclan baby, born a few floors up from us on the same day as Elizabeth's new liver! We really have so much to be thankful for. 💗

Now the hard: Last night was pretty miserable for E. She was in a great deal of pain and was extremely uncomfortable and discouraged. Neither of us slept much, which made it all feel worse. Mid-afternoon her dressing became loose and without going into a lot of details, it was really stressful for her for a number of hours.
Tonight we've gained some ground on her pain management, and Matt has worked up a satisfactory cover for her wound dressing so please pray for deep rest for both of them, as well as all of us at home.

Rest & Recovery

Friends, she’s out of surgery, and recovering in the PICU. We are blown away by God’s mercy.  Everything went so smoothly! The precious gift liver was a perfect match. They had to do some work-arounds, and as a result she has a “temporary closure”, which will be replaced in a week or so once the swelling goes down. But everyone is really happy with how the day has gone. 

I’m going to put my phone down for a while, but I must tell you how faithful our God is.  Yesterday, in the early hours of the day I was reading my bible and reflecting that in Acts 12, scripture says that Peter was sleeping in prison, chained between guards and likely aware that he could die the next day. Meanwhile “the church was earnestly praying to God for him.” I recognized the trust required for Peter to sleep and leave the outcome of the next day in God's hands. But after more reflection I realized how Peter was *resting* and it was the church who was doing the work. Peter wasn’t the one interceding for himself, he wasn’t *acting out* his faith. He was resting.  

Yesterday, when the hope of transplant was still a month away, God gave me the grace to believe HE &; YOU, our friends and family, would do the work. We could rest and receive His care. 

All through the day there were little nudges that made us see that God was working. Matt ran into our surgeon on the train and he let Matt know E was at the top of the list in the region. This didn’t guarantee her anything of course, but after weeks of not seeing any possibilities, we felt hopeful again.

Later in the morning we had an orthodontist appointment and I followed my gut and we removed her braces.  This was a sweet moment of celebration and makes her oral hygiene so much easier in the hospital! It also meant she had pizza as her last meal before we had to stop her food and drink. 

As I mentioned before, we had weekend childcare in place, so the race to the hospital was offset by a fun night for Hannah & Ruby. The Chandlers brought their A Game and hosted both a cupcake bake-off and a building competition today. To have Ruby and Hannah loved so well is just priceless.

While waiting in the ER to be called for surgery at 4am was so painful, once we got upstairs, Matt and I were able to crash in an unused pre-op room. The sweet nurse wheeled in two gurnies, and we got a couple of hours to sleep!  

After the shift change a new nurse  brought us to a room with a door! #itsthelittlethings and we were able to wait there for the whole day. Lunch & dinner from a friend, so many texts and calls and prayers and offers of support from all of you made such a hard day, so much easier. 

Elizabeth came out of the ICU with amazing stats. In real time she’s miserable (she deserves to feel awful), but on paper, she’s doing an A+ job of being a transplant recipient! My mom hopped on a plane and will be here for the next few weeks. Friends, we are so very thankful. We’re exhausted, overwhelmed, amazed and humbled by the mercy and grace we’re experiencing. Thank you for continuing to do the work while our family rests in such beautiful provision. 

Rest & Recovery

Friends, she's out of surgery, and recovering in the PICU. We are blown away by God's mercy.  Everything went so smoothly! The precious gift liver was a perfect match. They had to do some work-arounds, and as a result she has a "temporary closure", which will be replaced in a week or so once the swelling goes down. But everyone is really happy with how the day has gone. 

I'm going to put my phone down for a while, but I must tell you how faithful our God is.  Yesterday, in the early hours of the day I was reading my bible and reflecting that in Acts 12, scripture says that Peter was sleeping in prison, chained between guards and likely aware that he could die the next day. Meanwhile "the church was earnestly praying to God for him." I recognize the trust required for Peter to sleep and leave the outcome of the next day in Gods hands. But after more reflection I realized how Peter was *resting* and it was the church who was doing the work. Peter wasn't the one interceding for himself, he wasn't *acting out* his face. He was resting.  

Yesterday, when the hope of transplant was still a month away, God gave me the grace to believe HE & YOU, our friends and family, would do the work. We could rest and receive His care. 

All through the day there were little nudges that made us see that God was working. Matt ran into our surgeon on the train and he let Matt know E was at the top of the list in the region. This didn't guarantee her anything of course, but after weeks of not seeing any possibilities, we felt hopeful again. 

Later in the morning we had an orthodontist appointment and I followed my gut and we removed her braces.  This was a sweet moment of celebration and makes her oral hygiene so much easier in the hospital! It also meant she had pizza as her last meal before we had to stop her food and drink. 

As I mentioned before, we had weekend childcare in place, so the race to the hospital was offset by a fun night for Hannah & Ruby. The Chandlers brought their A Game and hosted both a cupcake bake-off and a building competition today. To have Ruby and Hannah loves so we'll is just priceless.

While waiting in the ER to be called for surgery at 4am was so painful, once we got upstairs, Matt and I were able to crash in an unused pre-op room. The sweet nurse wheeled in two gurnies, and we got a couple of hours to sleep!  After the shift change a new nurse  brought us to a room with a door! #itsthelittlethings and we were able to wait there for the whole day. Lunch & dinner from @eliswads, so many texts and calls and prayers and offers of support from all of you made such a hard day, so much easier. 

Elizabeth came out of the ICU with amazing stats. In real time she's miserable (she deserves to feel awful), but on paper, she's doing an A+ job of being a transplant recipient! My mom hopped on a plane and will be here for the next few weeks. Friends, we are so very thankful. We're exhausted, overwhelmed, amazed and humbled by the mercy and grace we're experiencing. Thank you for continuing to do the work while our family rests in such beautiful provision. 💗

It’s happening!!

It’s amazing how quickly things have moved! Two weeks ago we got a call that moved up Elizabeth’s living donor surgery to December 3.Recognizing that Elizabeth might miss out on some Christmas fun this year, we were delighted when sweet friends gave us tickets to see the Rockettes’ Christmas Spectacular last night!

What a treat to have some girl time. 💗 Then this morning, we decided to wrap up this phase of Elizabeth’s orthodontia to make her hospital stay that much easier. No more braces for her! We were so thankful things were falling into place. 🙏🏼💗

....but before the dust could settle, we got the call we’ve been waiting for tonight! 

Friends. It looks like we have a liver for Elizabeth. 💗😭😭The whole healthy liver and all its vessels will be collected in the next several hours, and Elizabeth’s surgery will take place about an hour later. We are amazed by God’s provision. Our friends had already made arrangements to stay overnight with the girls while Matt and I attended a wedding, so they are already here with the girls and no extra planning was required.  Needless to say, we raced home, and it’s been more seamless than we could’ve hoped for. It won’t be 100% until they get the liver out, but join us in praying that the liver is a perfect match for Elizabeth. 🙏🏼🙏🏼🙏🏼

If you want to get more time sensitive updates, find me on Facebook or instagram. We are so thankful for your prayers for our brave girl and our whole family! 
Love,
Sara

A Health Update

It's been a while since I posted an update about Elizabeth's health...

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While we have known for a while that, due to both longstanding and more recent health problems, Elizabeth would likely need a liver transplant, the timeline has been moved up rather suddenly.  Due to medical necessity, she has been moved higher on transplant list, which means we could receive a liver donation at anytime now.  Her surgical team is hopeful that she could receive a whole liver and the adjoining vessels via the transplant list before the end of the year. In the event that a liver doesn't arrive this fall, we are simultaneously making plans for her to receive a partial liver from a living donor at the beginning of January. 

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Because God is merciful and kind and loves to supply everything we need, he and a generous friend arranged for me to get some space to process this news last month.  I am reminded once again that though our journey takes us off the beaten path, we are never alone, and his goodness and faithfulness WILL be revealed, even in this. 

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As always, we covet your prayers. We know the gift of life for E will mean great loss for someone else. And we know our precious altruistic donor (and her family) has willingly stepped onto this roller coaster with us.  So many generous friends are already reaching out to support and offer help and financial contributions. We are humbled. 

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For now, we stand on today's path. Even before this news, it was truly all we were given. 

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*The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. "The Lord is my portion," says my soul, "therefore I will hope in him." —Lamentations 3:22-24

And we’re outta here!

Chick fil-a for my birthday dinner, strawberry pie for dessert...and breakfast. A morning FaceTime with Grandma...discharge paperwork...and we're home! For my birthday, my sweet Ruby re-made a broken necklace I couldn't bear to toss, and now I have these cool new earrings! It's been a pretty awesome 24 hours if you ask me. 💗💗💗

Grace upon grace upon grace

This is the face of a happy Hepatologist! Elizabeth is doing so well! She came directly to the floor (no ICU stay) and after just 18 hours, they've removed her pain pump because she's not using it! Her ultrasound and bloodwork look great, so we're looking at going home sooner than we expected! It's been such a smooth hospitalization so far and we have much to be thankful for:

💗clinic coverage for Matt so he could be present all morning

💗Granna in town, who somehow made doing laundry fun!

💗spicy dill pickle chips and Oreos...to keep our brains distracted

💗a glowing report from the team (the first pic shows the area of abnormal tissue (adenoma) and the 2nd shows the "white cloud" of tissue which is no longer getting blood flow. That's a good sign!

💗a visit from friends to hand deliver drawings and a chai latte

💗supportive texts and calls to remind us of so many people praying for and loving us!

💗a friend to sit with E so I could enjoy dinner at home with R & H

💗Dinner delivered 💗

💗a private room🙌🏼

💗Minimal nausea, minimal pain, so much grace!

💗A pretty comfortable couch/bed for Mama 

💗beautiful bloodwork & post-op ultrasound

💗 birthday Starbucks hand-delivered by my handsome hubs

💗birthday spicy Italian sandwich delivered by my favorite ladies

💗so much grace

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