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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Sister support

Elizabeth is off in dreamland after a very uneventful morning. My mom is home with Ruby & Hannah and Matt and I are busy waiting, and trying not to eat everything within reach! 😬  Today is the first time Ruby has wanted to FaceTime in during Pre-op, and she and a Elizabeth had a sweet time distracting one another with silly sister antics. I'm so thankful for Ruby & Hannah and pray daily that God would redeem these moments in their stories too. In moments like this I feel the weight of what they miss out on, or what I can't provide and I'm tempted to worry.  But I cling to the truth of God's redemptive power, and over and over I come back to his ability to work ALL things together for good in *each* of our lives. 

   

Ruby and Hannah are not left out, and His grace is sufficient for them too. Thank you so much for your prayers! They are such a gift! 💗

A Plan!

These past few months have been quite a test of our sea legs! The reality of a transplant is sobering and we have been eager to consider any alternative that might delay it! In March, We had the opportunity to visit Children's Hospital of Philadelphia, and our smiles are genuine because they convinced us of the feasibility of treating her adenoma with a Hepatic Angiogram! 

Long story short, this is a fantastic alternative! Now, after weeks of waiting and discussing with our team and meeting with more doctors, we finally have a plan! 

Elizabeth will undergo her embolization procedure this Wednesday, followed by a (hopefully) short hospital stay. We are so thankful for your prayers and encouragement, for childhood friends who would willingly pursue becoming an altruistic liver donor, friends-of-friends who deliver hugs in far away places, for friends who drop off meals, for Instacart & bagged salads for easy dinners, for friends who watch my kids and then graciously deal with the stomach flu we gave them 🤒, and for the anchor of peace we have as all the plans and possibilities have been tossed about! 💗💗💗 

***CLARIFICATION: I inadvertently made it sound like we were having her surgery in Philadelphia! Fortunately, the team here at Morgan Stanley Children's Hospital is able to do the procedure, so we're able to stay close to home***

Happy Heart 2.0 Anniversary!

A year ago, we were running through the snow to catch a cab to the hospital, so world renowned surgeons could reconstruct Elizabeth's heart. 

She was out of the ICU in under 24 hours and discharged 1 week later! Happy Heart-2.0 Anniversary Elizabeth!! 365 days later, we're on the second of a two-day marathon of liver transplant evaluations. The road ahead is still unclear, but how could we not laugh at the days to come, when God has such an awesome track record of faithfulness??

Listed

Welp, it's official. Elizabeth is on the liver transplant waiting list.

So now we do what the list tells us to...we wait!

Yet even as we wait and look to doctors, we don't want to forget that we have a God who heals! Chronic illness is its own version of Chinese water torture. At times, hope differed, discouragement and despair threaten to snuff out any flame of hope and faith for the possibility of Elizabeth's physical healing. But even as we have heard, "not yet" countless times, we continue to ask for her body and all of its broken parts to be made whole this side of heaven. Would you join us?

We're so thankful to be at a world class hospital, but we're sobered by the reality that a transplant is not a lifelong fix. We can get lost in the weeds if we try to look too far ahead, so instead we fix our hearts and minds on our true Source of peace. A thousand times a day, we remove tomorrow's concerns from today's playlist and live in today's provision:

While as we explore living donor options for Matt, the team is continuing to leave no treatment option unexplored. So today we're taking a look at the possibility of a non-surgical approach to shrinking the tumor. More appointments, more blood draws, more waiting, still no concrete next steps.

And yet..His grace is truly, amazingly, profoundly sufficient. A friend brought her kids over and is doing school with Ruby & Hannah at home. E and I snagged some treats between appointments at the Hospital Safety Fair...(hey, you grab fun where you can!) and then we had a little bit of quiet reading time at the library near the hospital and I got to close my eyes and rest for a few minutes in the sunshine streaming through the window. (Sweet and simple pleasures!) Now we're finishing our last appointment and will head home in a bit. Still no clear answers, but lots of clear and present peace.

Thank you for your prayers friends. They are a gift. 💗

Post-Procedure Panini

A pizza panini was Elizabeth's chosen reward for making it through this day! Could she look any more in love? 😍😂
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THANK YOU for your prayers. We had such peace all day long. The consultations and appointments went so smoothly, and we were able to have so many of our questions answered. There was a last minute switch due to a transplant surgery, and we ended up consulting with the chief of transplant surgery! It was so helpful to be able to go through all of her imaging together. At the end of the day, we feel so thankful to be at such an incredible hospital and to be cared for by such a wonderful team. And Instead of doing math in the waiting room, 😬 while we were busy with the team, Ruby and Hannah were loved on by sweet friends a few blocks away. Such grace! *
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We have more to consider, and continue to ask for wisdom for the road ahead, but tonight we are all ready to get some rest. Goodnight friends. 💕

Growing our Grace Muscles

These girls of ours are troopers. Some days they're working on math in the ski lodge, others, they're managing school work in waiting rooms, walking to countless doctor and therapy appointments or simply adjusting to the *many* plan changes in our already full days.

Daily Brownies....(ahem) Bread.

Nothing like a little (or a lot of) stress to reveal that I'm a comfort eater. Following the discovery of a benign but growing tumor in her liver, tomorrow is our appointment with Elizabeth's surgical team. With all the questions yet to be answered, over the past few days I've felt like chocolate was just a really good idea. And coffee. And carbs of all sorts. Sigh.
Tonight I sat in a planning session for school and I could feel fear squeezing my heart. For a moment I wanted to let the *what if's* rattle around my head. As if thinking through the possibilities would give my mind something to tether itself to.
But then I remembered: He has not given me a spirit of fear. My good shepherd, who clothes the lilies of the field with extravagant colors knows what we need tomorrow. He knows our dear girl more intimately than any expert physician and he has her. And Ruby. And Hannah. And he has Matt & I too...all safe in his strong hands.
I'm convinced he wants me to trust him for my daily bread. He knows just what we need for tomorrow. So tonight, I can rest.

Light for the Path

In 2013, in the midst of a deep depression, struggling with anxiety and slogging though daily life with three small kids and a difficult season of our marriage, I sat on the phone listening to a friend whose marriage was on the brink. I knew I didn't have answers or quick fixes, but I did have words of hope. I did have experiences to share...times when God had met me in dark places, when I'd seen God sustain our marriage and family through betrayals, brokenness and heartbreak. We were not yet "out of the woods", and yet I could see very clearly that God wasn't waiting for our marriage or my life to be "fixed" or "perfect" before using our story to encourage someone. I saw how, through my own experience with depression and anxiety, God was allowing me greater connections with my neighbors who struggled with depression and mental illness.  I was humbled.

My broken places, and OUR broken places had become cracks through which His comfort and hope were now streaming.

In that time and place, God graciously gave me eyes to see a spiritual reality of his work.

 

*****

In my mind, Matt and I were walking through a forest on a dark night. There were roots and branches and obstructions in our path, and our only light came from a small lantern, which we each carried.  I looked around me & noticed others with lanterns scattered throughout a mass of people who were all walking with us. We were holding hands and slowly, step by step making it through the forest, finding our footing, then turning back to shine the light for our neighbor.  It was slow, messy work, but I know we were all making it through the forest together. I also knew it would be much easier if there was someone perched atop a mountain looking down on us who could shout out directions! However, it was clear to me then, that this slow path was the means to get the most people through and to the other side.

God wasn't giving either me or my friend the whole picture. Neither of us could rely on verbal directions from an expert or book or blog to orient us ahead of time to the struggles and trials we'd encounter or guarantee us safe passage.  Instead he'd placed us together. Each one who had a light was sharing their own light with those closest to them, and that light, that truth, that revelation about who God was for us there, was helping and was enough.  

*****

Many friends, mentors and family members have shared their lantern-light with us over the years. They have stood with us in the dark, taken us by the hand and walked with us through the forest of loss and suffering and brokenness. And it has been a profound and humbling honor to share the light of truth and life and hope we've been given with those near us.

 

Last Sunday, during a teaching series on suffering, we had the opportunity to share our journey to date with our NYC church family. It was as honest and raw a conversation as we've ever been able to have, and for both Matt and I it was a moment of holding out our lanterns to light up the forest for those nearest to us. In many ways, with Elizabeth's recent surgery, and two more scheduled for this summer, we remain in that forest. God continues to make us dependent daily on His mercy and grace, invites us to travel by the lantern light of those around us, and share our light with others. We've never been made to do this alone. What a privilege.

If you would like to hear the recording of our conversation, you can listen to it here. If you're in New York City and would like to be part of a community of Jesus followers who would love to share our lanterns with you, please come visit us at Trinity Grace Church, Westside.

Love,
Sara & Matt

Elizabeth's Heart is Lookin' Good!

With all the social media spots to update, I sometimes drop the ball.
I'm sorry I have been AWOL here! Those of you who read these updates
and pray for our Joy Child and our whole family are precious to me.
Thank you!

We just returned from Elizabeth's THIRD follow up echo/ekg/cardiology
appointment with very good news!

To back up, Elizabeth went to the ER with symptoms of post-operative
pericarditis. Fluid had collected around her heart as a result of
inflammation from her surgery. Since she has such a high pain
tolerance, she didn't mention the pressure and pain until it was bad
enough to give her high fevers...which resulted in a trip to the ER
for a complete work-up.

The treatment--high doses of anti inflammatory medications--is not
complicated, however, because she still has the clot in her liver, the
veins around her stomach and esophagus are enlarged and under
pressure, so until now, anti inflammatory meds have been off limits.
But after weighing the risks and benefits, we began the meds and
agreed to watch her closely & repeat the echo.

Well, today's echo showed that the fluid has completely resolved!
We're all thrilled! We're so thankful she's been able to be home this
past week instead of hanging out in the hospital waiting for progress.
We're so grateful for her cheerful attitude, her courage & resiliency.
And we're thankful for your prayers. These last few weeks have been
exhausting. Another round of emergencies means more missed days of
work for Matt, more projects pushed aside and more strain on the girls
as we juggle immediate needs and a desire for normalcy.

Praise be to the Anchor who holds us in every high and stormy gale!

Prayers for Elizabeth...

6 years ago this morning, we were saying goodbye to our precious Ava Bean. In the midst of that, Elizabeth had been fighting a respiratory virus that had finally turned problematic. In the darkest moment of or lives, Matt took Elizabeth to the ER, where they planned to admit her for pneumonia. After learning about Ava's death, we worked out a solution to being her back for IV meds over the next week, and we were able to bring her home. 

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Friends, this day is already complicated enough. However, this week Elizabeth has had around the clock fevers with no clear source, and when she started having some trouble breathing last night, Matt took her to the ER. There, they found some fluid around her heart and are still working to assess the source of the her infection. Our hearts are so full right now. Please Pray. 

💗

Happy Easter!!

What a full and wonderful weekend. We are thrilled to have all our chicks back in the nest! We are savoring the time to reconnect, even while there are the obligatory emotional bumps along the way. E slept well her first night home and woke up with a craving for Rockland Bagels! A 30-minute drive seemed doable and E enjoyed a quick tour before needing a bagel break. 😊 #worthit 

While E-bug rested with Grandma, Matt and I got to spend Saturday with Hannah & Ruby and thoroughly enjoyed the TGC egg hunt in Central Park. 

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However, the highlight of the weekend was Easter Sunday. While I'd prepared myself for her to decline, Elizabeth decided that if Grandma would be her "wing-man", she would, in fact, want to brave the crowds of loving friends and head to church! It was incredible to celebrate our risen savior with family and friends. We finished the day with some read-aloud time and games with friends, and then shared a meal, lovingly delivered by yet another generous friend. So much grace. 

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It is impossible not to recognize that Elizabeth is alive today, both in spirit and in body, because JESUS is alive! What a happy homecoming. We are humbled and beyond grateful to experience this miracle.

Home!

Birthday Dreams do come true! It took a whole day full of tests and procedures, but Elizabeth managed to get discharged in time to celebrate Grandma Harms' birthday in person and in the comfort of our own home! God is GOOD, and we are tired! Laundry, and snuggles, unpacking and re-entry await....but first, sleep. 💗

Freedom!

We're tube-free!! After a beautifully clear chest X-ray this morning, CT Surgery came by first thing and slipped it out! Amazing. Ruby & Hannah have whisked Grandma off for a birthday adventure and Elizabeth and I plan to do as much walking around as possible now that she doesn't have to lug her IV pole around. In fact, she just declared she needed to use the bathroom and was waiting for me to get up to help her. The look of delighted surprise when she remembered she was "unattached" was priceless! Happy Day! 

Sent from my iPhone

Holding Steady

Elizabeth's chest tube drained nearly 400ccs overnight and through the morning and her early morning chest X-ray showed that her fluid pocket was about 50% improved! So since her tube was finally working, they left it in for another day, and in the early afternoon it appeared that the drainage was done! We'll know for sure after the X-ray tomorrow morning, but we're hopeful that she could get her tube taken out tomorrow! 

💗

This pushes back discharge a bit, but we still have Easter at home in our sights. 💗 Meanwhile, she's lost 9 pounds and is pretty wiped out, so pray that her lack of appetite and lethargy are simply the result of that pesky tube and the heavy diuretics! We're certainly happy to fatten her back up at home if they let us take her! 💗

While E has been laying low, her sisters have been having precious time with my mom all last week, and now Matt's mom. They've been doing school, sewing, making cards for E, and enjoying the sweet care packages friends have sent. I'm so glad they have each other and such attentive, intuitive grandmothers. Their hearts are also weary of the long separation, but everyone seems to be doing well and I'm proud of the way they are handling it. They've both expressed a desire to spend more time in the Hospital with E, (free snacks from her untouched meal tray, the child-life play room are a big draw!) so we've had the chance to play lots of games and process how their hearts are doing. One day at a time, we're doing it! 

💗

We are incredibly humbled by the amount of support and encouragement, the meals and coffees and offers to visit, the notes and gifts, the prayers and expressions of love...were overwhelmingly thankful.  💗

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Answered Prayers!

Tonight were having a party up here on the 6th floor, because IT'S DRAINED!! 🙌🏼🙌🏼🙌🏼

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Of course there are many details I want to go back and recount but I'm about to fall over so they'll have to wait. To make a long story short, her tube started draining more & I was concerned with the change, so I pestered the nurses and Matt pestered CT surgery and they finally came and worked on the line for 30 minutes and in the process, doubled her drainage from the last 6 days! 

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So I'm the end, it's drained!! If her pneumothorax is unchanged, and her fluid hasn't reaccumulated, if her labs look good and the draining has stopped, they'll remove the tube tomorrow and she could be discharged by Thursday! God is so good! There simply aren't enough words and exclamation points. 🎉🎉🎉

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Ups and Downs

These two pictures bookended a difficult day for E. She was up early for a chest X-ray and a blood draw for labs, and then learned not only is the fluid still there, but she's now developed a pneumothorax (a small hole in her upper left lung) thanks to the therapy she endured to try to re-inflate it. Ugh. 

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This was followed by the news that she was to be NPO (couldn't eat or drink) and might go for surgery in the afternoon. While both of those decisions were eventually delayed by a day in favor of increasing her diuretics, it made for a hard morning of frustration, disappointment, sadness and anxiety. 

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Now that she's 12, she knows the pain that she's facing. She realizes that Dr.s smile and are friendly, then have to poke and prod. And she knows that she feels crummy and it feels like it's never going to end. 

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The afternoon improved with the visit of her sisters, a winning game of Hospital Bingo, a short visit by a doting friend and the arrival of BOTH of her grandmas into her room for "the changing of the guard"! (My mom leaves tomorrow and Matt's mom is here for the next 9 days. 

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Obviously, she ended the day on a much higher note, but we would appreciate continued prayers! That pesky fluid is still hanging around. She'll have surgery tomorrow if it isn't resolved. She is on large doses of diuretics, so pray that she would be free of complications! Pray for grace for Matt as he has to see patients 3 days this week. And pray for continued health and restorative rest for all of us. 

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Though this feels difficult, there are many ways in which we feel so blessed...available grandmas, healthy bodies, stable work and living situations, incredible support from friends and family, our church and colleagues. May we continue to find and receive the nourishment of peace and grace from this, our daily bread. 

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Day 5 and counting...

Today the adrenaline officially ran out. 

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As if He knew it would happen, God filled our day with many sweet graces. I will share more tomorrow, but tonight I'm out of words. 

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We continue to need prayer for Elizabeth's chest tube to drain all that excess fluid. Elizabeth is doing her very best with all the exercises and therapies, but it's simply not budging. Before it can get infected, the team will want to place an additional tube, which would require another surgery and a return to the PICU, and were eager to avoid that if possible. Tonight she developed another fever, and that always puts us on pins and needles, so please continue to pray for protection from infection! 

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Finally, we all need stamina and grace for this journey. Matt will be back to seeing patients this week, so the juggling of time and attention will continue. As we fall into bed tonight, I'm thankful for the sufficient grace that is promised to meet and fill our moments and hours tomorrow. 

Goodnight precious friends. 💗, Sara

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Go Elizabeth, Go!

Today was a day of encouragement.  It began with a great night of sleep for everyone! 🙌🏼 when I came up for Dr's Rounds, I brought up all the cards, notes & pictures I've been accumulating, and now her room looks super cheerful! She said, "wow! There are a lot of people who love our family!" Wow, indeed. 💗💗💗

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What you can't see is our dear angel-auntie Elisabeth, who brought lunch and showered our Elizabeth with attention and conversation. Meanwhile, Matt got a shower and a date with Hannah Mae to baseball practice while I was able to pay some bills and catch up on work & Granna and Ruby got some one on one time together, so it was a blessing for ALL of us! 

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Thanks to generous friends, we enjoyed our favorite pizza from @antika_pizzeria for dinner and then got to take our first family walk with Elizabeth's new and improved heart! Her sisters enjoyed driving the IV pole and holding the telemetry monitor and she was a good sport, pointing out the playroom, the room where her new three week-old friend is staying, and her absolute favorite, the Kosher Kitchen!  Because it is Shabbat, there were many men gathered to pray and she thought that was super interesting! 

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While she's healing well, she's still got almost a kilo of extra fluid sitting around her lungs and heart, so we need that to start draining so she can get her chest tube out, the last major hurdle before discharge. Would you pray that she would have stamina to do all the activities to help it drain? Also pray that her chest x-ray tomorrow morning would show that improvement! We are still hoping and praying that we're home in time for Easter, so fluid, "be gone!"

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Thanks everyone. As Elizabeth appropriately observed, we know that there are a whole lot of people praying for and loving on us, and we sure feel it. 💗

💗, sara