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. 💗
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!
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!
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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!
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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. 💗
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. 🎉🎉🎉
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.
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
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. 💗
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. 💗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.
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. 💗 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. 💗
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 🌙 is really still round 🌝? Still reminds me of our sweet Ava Bean and our Faithful God💗
