Blog Archive

Tuesday, April 3, 2018

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.

Thursday, March 29, 2018

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. πŸ’—

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! 




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Wednesday, March 28, 2018

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! 

πŸ’—

This pushes back discharge a bit, but we still have Easter at home in our sights. πŸ’— 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! πŸ’—

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! 

πŸ’—

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.  πŸ’—








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Tuesday, March 27, 2018

Answered Prayers!

Tonight were having a party up here on the 6th floor, because IT'S DRAINED!! πŸ™ŒπŸΌπŸ™ŒπŸΌπŸ™ŒπŸΌ

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. πŸŽ‰πŸŽ‰πŸŽ‰




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Monday, March 26, 2018

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. 

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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Sunday, March 25, 2018

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. πŸ’—, Sara




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Saturday, March 24, 2018

Go Elizabeth, Go!

Today was a day of encouragement.  It began with a great night of sleep for everyone! πŸ™ŒπŸΌ 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. πŸ’—πŸ’—πŸ’—

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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. πŸ’—







πŸ’—, sara

Friday, March 23, 2018

New Day, New Mercies

This girl. What a rockstar! The two of us had a pretty rotten night. There was some confusion about her regimen, so she got behind on her pain meds, and as a result woke up every 30 minutes anxious, thirsty and in pain. She developed a low grade fever and we couldn't help but worry about a possible infection or developing pneumonia.
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All I can say is, Praise God for mornings!
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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.
~Lamentations 3:22-23
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This morning we were able to make some changes during rounds. Best of all, that means better pain management! We also have a super competent nurse and a support squad that arrived throughout the morning with coffee, snacks, hugs, lunch, some laughs, more coffee and prayers! As a result we got a pretty uncomfortable IJ Line removed, managed to get her up and walking...2 1/2 laps so farπŸ™ŒπŸΌπŸŽ‰...and then she sat up for 2 hours! As a reward for all that hard work, she got to introduce her OT to The Greatest Showman. 😍
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She's looking forward to hosting her sisters for dinner again, and we're even beginning to believe we might be home by Easter...what grace.
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Thank you so much for your continued prayers. As you can tell, there are lots of highs and lows and big swings between pain and comfort. This journey is not for the faint of heart, so it's a good thing our Joy-Child has a strong one! πŸ’—πŸ’—πŸ’—

Thursday, March 22, 2018

A Whirlwind Day

What a difference 24 hours makes! When I left Elizabeth last night to tuck in the girls at home, she was stable, but pretty miserable. She wanted water which she couldn't have, and no position was comfortable. His residency (read: sleep under any condition) training made Dr. Daddy the best candidate to sleep in the ICU meanwhile, I got to comfort sweet hearts at home and then had the luxury of my own bed.
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I arrived this morning to learn that today would less like a spa day and more like boot camp for our sweet girl. Her post-op chest x-ray showed her lungs hadn't fully inflated so she needed to take deep breaths (painful) to try to expand them, AND she needed to sit up and get moving a bit to help her get rid of some of the post-anesthesia air-bubbles which were pretty painful! Let's just say she was not excited about "the plan" coming from rounds.

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Fortunately, our girl does really well with incentives, so between daddy and I we got right to work: a sip of water after 3 deep breaths on the "incentive spirometer", a movie & a fresh set of french braids for sitting up in bed, another movie for moving to the chair! Well, her hard work paid off. She got through a bedding change, a surgical dressing change, fought through icky nausea all morning and finally held down a croissant! This afternoon she was delighted to talk all about E.T. with our sweet friend who arrived with lunch and treats in-hand, enjoyed some reading, snoozed through 4 movies, got her arterial IV taken out, moved from the "pain pump" to oral pain meds and she is now discharged from the PICU & resting comfortably in our private room in new Pjs after a dinner-time visit with Granna, Ruby & Hannah!

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You can imagine how tired she is! It was a banner day for our girl. It's hard to believe she's only 1 day away from open heart surgery and doing so well! God is so good!

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Please continue to pray for deep, restorative rest for our Weary Warrior and her exhausted parents. Pray for protection from infection, good pain management and for clear and healthy lungs. Pray for Hannah & Ruby's hearts to be filled with peace and assurance as they ride this roller-coaster with us. Finally, continue to pray for supernatural hope and trust surround and sustain us. We have been down many harrowing paths and it is easy to guard our hearts so we're not blindsided by heartbreak.

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We are so thankful for your emails, texts, messages of encouragement and prayers. We are so amazed at your care for us.

With so much love and humble gratitude,

Sara, for all of us

Wednesday, March 21, 2018

It’s fixed!

She's done!  The surgeon's report is that the surgery was successful. It was more complicated because her heart is "atypical" but he said, "it's fixed". So we'll take that! 


She's intermittently awake & vacillates between surprisingly coherent and cranky & uncomfortable. At the moment she's dozing through the end of ET. πŸ’—She's got a great team here in the ICU so I'm going to sign off and be with my baby girl. Thank you for your thoughts, encouragement and prayers for our family. 


 
πŸ’—Sara

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Checked In

We ran through the beginning of the snow to catch our Uber. Now she's all checked in and settled down watching ET for the first time. πŸ’— In good news, it looks like we may get bumped up and go back to the OR a bit earlier, which would be a huge blessing! The sooner she forgets that she's hungry the better!

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From where I sit, I can see two slivers of the nor'easter sweeping across the Northeast. But we're warm and cozy, the girls are warm and cozy at home with Granna and now we just wait. Thank you so much for your emails and texts, and especially for your prayers. πŸ’—










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Tuesday, March 20, 2018

T-minus 24 hours

So grateful for some one-on-one time with both Hannah and Ruby yesterday and today. Everyone is a bit on pins and needles, but overall, hearts are calm and we're all eager to get on the other side of the surgery in order to get the lay of the land.  We enjoyed a yummy dinner from friends and topped it off with Elizabeth's favorite: strawberries and whipped cream, to celebrate the first day of Spring. 


This afternoon we found out  we are scheduled to register at 9am. Elizabeth's the second case, so she'll go back to the OR in the afternoon. It'll make for a long morning of not eating or drinking, but it will be really nice not to have to rouse her at 5am to get there early. Also on the bright side, after years of pre-op eating and drinking restrictions, she's become a real champ and will hopefully be easily distracted by unlimited media time while she waits. 


Please pray for deep rest for all of us overnight and that this crazy nor'easter wouldn't cause any complications! So thankful we can trust in God's perfect timing tomorrow. I'll be posting updates via social media and on our blog. (Link in profile)Thank you for all your prayers and encouragement. They mean the world to us! 


PS -can you see that the moon πŸŒ™ is really still round 🌝? Still reminds me of our sweet Ava Bean and our Faithful GodπŸ’—










πŸ’—, 
Sara

Monday, March 19, 2018

Pre-op: ✅

Echo ✅
mama got coffee ✅
EKG ✅
a new book & art kit from the pre-op nurse ✅
urine ✅
blood ✅

lunch with daddy ✅
chest X-ray ✅
& now Home Sweet Home, where dinner from friends is in the fridge and where homeschool with Granna looks like math, piano, writing, games & sportsmanship & mani-pedi's!
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When Ava was alive, we held onto Deuteronomy 7:9. So often we needed to remember (and still do) that the God who was faithful during all of Elizabeth's hospitalizations was STILL the Faithful One who would guide and provide for us in all the unknowns. How fitting that today's verse in my Bible App was Deuteronomy 7:9. He is gently reminding me that He intends to be faithful once again.

Pre-Op Day

And we're off for Pre-op Day! We ran into our darling neighbors on our way out of our building and E got to walk toward the subway together with her friends. A sweet gift at the beginning of this long day.

Saturday, March 17, 2018

A *Date* of Sorts

Matt took the younger girls to baseball practice so thought I could take advantage of some one on one time with Elizabeth before Granna (my mom) arrived this evening. So I asked her if we could have a date.

She said no.

I reminded her that all 12 year olds love mother/daughter dates. She said "I don't". πŸ˜‚ #toomuchattention.

I asked her to pleeeeese let me take her and she said, "as long as we can call it an errand instead" πŸ™„ #fine #youwin #sheesh #notgettingmyfeelingshurt

We ran my errand and then visited Barnes & Noble for a chai latte and some time with books! Thankfully, she found one about the childhoods of over a dozen famous authors and she's as happy as a clam!

Note to self: books not clothes are the way to this girl's heart. πŸ’—πŸ’—πŸ’—

Tuesday, March 13, 2018

Overwhelmed, but Not

When you pass through the waters, I will be with you; and they will not overwhelm you. 
When you walk through the fire, you shall not be burned, and the flame shall not consume you.
Isaiah 43:2
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I find myself overwhelmed these days. 
Overwhelmed with gratitude for all the sweet encouragement, prayers and offers of support.

Overwhelmed with awe at how God continues to place our next steps before us. 
Overwhelmed with how to continue in the present, making faithful progress in school while knowing  a big question mark lies eight days ahead of us. 
Overwhelmed with how to best organize help and home care, a hospital stay and care for tender hearts. 
I told a friend, I feel like I'm waiting to go into labor, but with none of the happy reward.  I guess you can why we’re weary as we simultaneously try to remain present and thoughtfully prepare for the unknown.
Yet, though we feel overwhelmed, we are not overwhelmed.  
We have walked through so many fires. We have passed through so many waters and God has been present and faithful and carried us.  So amazingly, while we look ahead and wonder how it will all come together, we are actually feeling tremendous peace.
You, our friends and family have been a tangible expression of that sufficient grace that is promised to us every day. Please know that while my bandwidth to respond feels limited, I read every text and email and am humbled that you carry us in your hearts. So many of you have asked how you can help. Thank you. Here's what's coming...
My mom arrives on Saturday to help manage the girls and their school schedule and help keep things as normal as possible for them. 
Monday we'll spend all day at Children's undergoing pre-op tests and procedures. 
To help with meals at home, a friend has created a meal calendar for us at:
http://www.signupgenius.com/go/10c0844abac2ea4ff2-help
Last week a dear friend threw us a Heart Party. What a sweet time it was. 



Finally, in an effort to support us practically, other friends have given gifts through Venmo (@sara-harms-2) or Paypal (mattsaraharms@gmail.com) to help with hospital meals, coffee, laundry, grocery delivery and other needs as they arise.  More than anything we treasure your prayers and your friendship. 

Saturday, February 24, 2018

Fog and Sunshine

When we learned that she would need surgery, our first concern was how we'd share the news with Elizabeth.  She's been through so many surgeries and procedures and knows the reality of a painful recovery.  We both felt at peace about simply giving her the basic facts and not filling in too many of the harrowing details for her mind to dwell on, but were praying about the right timing.  Well, we've already seen our prayers being answered!  Early in the week, Elizabeth asked out of the blue if we'd gotten the results of the pulmonary stress test she had in January. 

That was the open door I needed to tell her that in fact we had! I shared that we might have an explanation for her low energy and stamina. I shared that her oxygenated blood isn't all getting to the correct side of her heart and by God's providence there is an expert at Columbia who can correct what needs to be fixed.  She was excited about the fact that both of her heart surgeons are Lebanese, but was not convinced that the surgery would give her more energy. In fact she argued that she might still want to be "couch restive", her word for just chilling on the couch instead of being up and active. HA! She keeps me on my toes, but that peaceful conversation and her calm response were pure grace.

This was one of many moments this week when God showed us that he is going to care for us and faithfully lay down the path before us one step at a time.  

"The Lord Himself goes before you and will be with you;  he will never leave you nor forsake you.  Do not be afraid; do not be discouraged." ~Deuteronomy 31:8

Though my heart feels at peace, my subconscious is clearly working on things because I'm foggy and exhausted! All I want to do is veg and binge watch Net-flix. Sigh. But that clearly wouldn't work for our school curriculum, so mid-week I did what would be good for my body and soul and joined our little crew for our Homeschool Running Club's 5K!



These mamas show up every week with their kids (babies and toddlers too!) to run with the girls and me at Riverbank State Park.  Over the past 6 months we've gotten stronger and even Elizabeth has worked her way up to jogging a mile! This is HUGE for her! On Wednesday we took advantage of a 70 degree day to walk/run a 5K along the Hudson. As we wait for surgery, we so appreciate diversions like this! 


We are so grateful for friends and sunshine and all your support and prayers. 
Goodnight Friends.