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Pray for Lilly Joy

$63,502 of $60,000 goal

Raised by 747 people in 7 months
Created July 11, 2018
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On Monday July, 9, 2018, Brandon and Abbie Wentzel welcomed their baby girl, Lilly Joy, into the world.  After Abbie's nurses/doctors had a difficult time finding a heart rate and then realizing that it was very low, Abbie had to perform a miracle and push with all of her might while the doctor used suction to deliver Lilly.  Lilly was not breathing when she was born and was rushed to the NICU.  Her cord was pinched, and it was evident that she had ingested meconium in the womb.  She was intubated and multiple tests were run, with results showing that Lilly's body was fighting a deadly Group B Strep infection.  That evening she was transferred to Seattle Children’s Hospital after she failed to improve, and is currently in a fight for her little life.  She has been septic and has the odds against her.  She has been struggling with low pH levels, a fluctuating heart rate and low blood pressure, as well as an inability for her blood to clot without medical intervention. She is in need of a miracle that only God can perform.  At this point, doctors are unsure of what long-term damage may have occurred. We know God can heal Lilly Joy fully and completely.  We pray He will.  Regardless, we trust His character; that He is always good, right and perfect; that He is always faithful, and that he loves Lilly more than we could ever fathom and that His unfailing love endures forever.

As a community, we are coming together to ask for prayer and financial support to help the Wentzels through this very difficult time.  Not only would we like to help lift their financial burden from hospital bills, but we would also like to help raise money to cover the costs of repairs for their home, as it was damaged due to the failure of a main sewer line just a week prior to the birth of Lilly.  Unfortunately, insurance will not cover all of the costs, so we are asking our community to come together and lift this family up with prayer and generosity.  They approximated 18k in unexpected out of pocket expenses for the sewer line breakage.  All together, they have a very hefty financial burden.  Let's help to alleviate this worry, enabling them to focus solely on supporting their little girl. 

Thank the Lord for the mountains that have already been climbed!!  Please continue to pray fervently for the mountains ahead of Lilly, as she has a long road ahead of her!  We trust a BIG GOD who can overcome the impossible.  He is our sustainer! 

From Abbie: "When you pass through the waters, I will be with you;  and when you pass through the rivers, they will not sweep over you.  When you walk through the fire, you will not be burned; the flames will not set you ablaze."  Isaiah 43:2

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Update 7/13/18:

We want to thank everyone who has so generously donated to the Wentzel family. We are all amazed and beyond grateful for the outpouring of love and support the family has received from each and every one of you. We have officially met and exceeded our original goal of $30k!! As God has so graciously given Lilly another day, we want to continue to provide for that. The longer Lilly requires specialized care at Children’s Hospital, the more bills and expenses (such as childcare for their other children) add up. We have decided to raise the goal to $60k to continue to help provide for their needs and ease any financial burdens along the way.
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8/27/18 Update from Abbie:

This is it. Today is the day. We are going home.

49 days. Exactly 7 weeks ago we arrived at Seattle Children’s, terrified. A car seat installed in the back of the van that we questioned if we would ever bring our child home in. The same car seat we are about to fill with little Lilly Joy. She is not the typical squinty-eyed newborn traveling home from the hospital on day one. She is a strong, resilient 7 week-old—still tiny, but somehow wise. Small, but somehow stronger than I will ever be. And she is headed home. A baby that could have been in her Heavenly home, but by God’s mercy is rooted here on earth—a long, beautiful life ahead of her.

On our third day in the NICU, I met a lovely mama and her two or three month-old son. He looked a lot like Lilly does now—full of those early half-curled smiles and smirks, an NG tube taped to his cheek. It was his first visit back to the NICU. His mom was bringing him back to Seattle Children’s for a clinical follow-up. She stood with me at the front desk and encouraged me on my long and weary road ahead. She told me to hang in there. To stay positive. To keep going, though the outcome was completely unclear. She told me, “If I could have just been told, ‘You won’t be here forever. You will go home,”…and then she started to tear up. Tears turned quickly into a sobbing cry. “I still can’t hear the sound of the hand sanitizer,” she said. “It’s too much for me.” Post-traumatic stress. Understandably. I get it now. I am sure we will have a lot of emotions to unpack and sort through in the days, months, even years to come. But, along with the hard there is so much good. She was right. We weren’t here forever. We ARE going home.

I could see how this place could be a trigger. Any place of pain, when revisited, is. But it is so much more. The gratitude and love we have for this place is so much greater than the hurt and sadness we experienced in it. This care team—these amazing people—gave us the greatest gift we will ever receive: a hopeful future for Lilly. This place was not just a hospital, it has been our home. This care team was not just medical staff, they have been our community. A community full of specialists ranging from Respiratory Therapists and Neonatologists to Registered Nurses and Nephrologists that have become so much more than the titles on their badge. They were our advocates, leaders in the storm, supporters, caretakers, and friends. When we revisit Seattle Children’s, I don’t envision the reunions like the reopening of a wound. I see them being more like a display of a scar. Not one that you try to hide behind clothing. One you take pride in—a significant marker of the journey. This place has changed our lives and given life to our daughter. We are forever grateful.

And where would we be without prayer? It is a sobering thought. I am convinced that the outcomes for little Lilly would have been radically different if there were not so many people crying out to God day-in and day-out the past 49 days. Prayer worked in cooperation with the work that happened here. As the care team worked tirelessly on Lilly’s physical body, thousands of people prayed tirelessly. And God heard. He showed up and he showed off. He answered our prayers, fulfilling our desires far beyond anything we could have expected. Far beyond anything anyone could have expected. He blew us away. One doctor said early on, “We don’t make miracles here at Seattle Children’s, we create the space for them to happen.” That is exactly what happened. A beautiful harmony of experts creating the space and God making the miracles.

Looking back on January 1 of this year, as many made resolutions, I chose a word. I choose a word every year as a theme. Something to focus on, to strive for, an area to see change and growth. The word I chose this year? Calm. At the time I thought “calm” was all about not yelling at my kids. I wanted to grow in controlling my temper and allowing God to ease my anxiety. I asked in prayer for “many lessons in calm and trusting God with my whole heart this upcoming year.” LITTLE DID I KNOW. But He did. He knew so well. And he fulfilled my desire. I have learned and grown so much in “calm.” I have found God to be the only calm in the midst of uncontrollable chaos. His calm is all we need. With it, we can survive any storm and travel any road of suffering, emerging from the other side with a greater understanding of His goodness. It sounds completely backwards, but that is how He works. He is comfort in tragedy, beauty in disaster, love in pain. He is not the cause of suffering, but the safe shelter in the midst of it. Even when he doesn’t remove us from the thick of it, he is there with us to guide us through it and provides us with the gift of endurance. I have never experienced this truth so fully as I have these past 49 days. My worst nightmare—literally, the worst thing I could have imagined happening—has just happened. If I would have been warned in advance, I would have fallen apart. But, HE KNEW. And he gave me the gift of calm in the middle of it all. Unbelievable, unexplainable calm. I did not create it or muster it up. That would have been impossible, given the circumstances. It was a gift. A precious gift.

As we walk away from Seattle Children’s today, I am filled with a host of emotions: relief, gratitude, joy…but where there are nerves of the road ahead, there is a greater, overarching sense of calm. We made it. And more importantly, SHE made it. Lilly is victorious. Lilly is an overcomer. Lilly is coming home.
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8/24/18 Update from Abbie:

If we were to revisit to the analogy of Lilly climbing Mt.Rainier, the summit is definitely in sight! Today, Brandon and I learned how to place Lilly’s nasogastric (NG) feeding tube. And while shoving a medical spaghetti noodle down your six week old’s nasal cavity as her hands are pinned to her head isn’t exactly a pleasant milestone in parenting, the fact that we did it with relative ease was so encouraging. It’s certainly not fun, but it’s an awesome tool for supplemental nutrition while Lilly builds her strength and coordination to feed orally. Many thanks to YouTube tutorials (that I probably shouldn’t have watched while eating breakfast) and awesome nurses that showed us their “tricks” and lended their expertise. The more we learn, the more confident we feel in bringing Lilly home. HOME. How awesome to say the word.

Before placing the NG tube, we gave Lilly’s skin and nose a little break, gave her a cozy bath, and took a few photos. I’m praying the next time she has her picture taken without the NG tube is the time it comes out for good!

There is so much to be thankful for today. Lilly and I feel well rested. Our sleep has improved substantially over the past couple of days, and whatever was bothering Lilly has seemed to disappear. Thank you, Lord! As I mentioned before, Lilly had been “maxing out” at around 30 mL while feeding orally, but the past two days she has been taking closer to 45 while breastfeeding! Huge progress. The adequate rest has played a major role in her strength and ability to feed well. Another praise: the ENT (Ear Nose and Throat) doctor came by today. She was very impressed with Lilly’s loud cry. She said, while she can’t verify anything until Lilly is scoped again (three months from now), that it sounds like that right vocal cord is likely working again!

Thank you all for your prayers, thoughts and love. We’d appreciate your continued prayers regarding Lilly’s strength, feeding capabilities and preparation for our big transition to home. I think we are all a little flustered thinking about Brandon starting work, the kids starting school, and balancing it all while taking care of Lilly’s special needs. Three kids feels like a big transition regardless. I think I may need a feeding tube placed myself just to ensure I get a chance to eat while balancing it all. Only kidding, ofcourse. We completely trust in God’s provision as we walk into our new “normal”.

God is amazing. Lilly is getting ready to summit!
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8/22/18 Update from Brandon:

Just a quick update:

Despite all the progress and being medically stable, Lilly has been really fussy the last two days. Fussy to the point that neither Abbie nor her slept more than 30 minutes at a time. This has been a bad deal for both Abbie and Lilly’s physical and emotional well-being. Please pray for my girls to get some rest. For Lilly to continue to improve upon the volume she can take with each oral feed and for us to learn and feel confident with all we are learning in prep for our transition home (which is likely in the next 3-5 days)...we think.

Thanks for all the love, prayers and support!!
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8/19/18 Update from Brandon:

Lilly graduated a couple days ago. She made the move from the NICU to the general medical floor. This was a big step in the right direction, but bittersweet. Two doctors that were the most instrumental early on stopped by to congratulate us. Several nurses that were a critical part of Lilly’s care team paraded through as well. I didn’t want to be done with the comfort of their care. They have been AMAZING! Thanking them was humbling and emotional as you might imagine.

We have had our older two kids the past three days without the support of our parents (by choice). Abbie has been staying at the hospital with Lilly and I have been with Elliot and Annie at night and we are all together at the hospital during the day. Abbie and I have been overwhelmed and stressed at times wondering how this transition to three and transition home and back to work for me is going to work.

Abbie and I have been a strong team, and we still have great support everywhere we turn, but I have been thinking, “this is hard.” And while I don’t think anyone would question that statement, I have been confronted at every turn by harder. The teen across the hall bound to a wheelchair unable to control his drool. The curious, but respectful eyes of Elliot wandering and then questioning, “why doesn’t that little girl have hair?” The friends we have made who are facing scary days and months ahead with uncertainty about their baby’s medical future. The faith-filled friends who are months into their stay here, divided as a couple by work requirements, balancing big faith belief in their son’s healing with the present reality of his health in the waiting. I’m humbled by my own perspective of “hard”.
I pray that my perspective is always filtered through a lens of gratitude and empathy for the situations of “hard” around me. When Elliot is throwing a fit about not getting to visit the playroom, I must remember that he doesn’t understand that his struggle is laughable in comparison to that of the little boy in the room next door. That is still his hard.
I want to walk so closely with God that I am always reminded of what is temporary and what is eternal, what is important and what is trivial. I want God to give me His eyes to see the “hard” in the lives of those around me and His heart to care enough to enter in and do something about it. My eyes well up with tears now as I write thinking about the countless number of people who have done just that for my family. You’ve entered into our hard and said we are with you. I cannot thank you enough. How could I? Please know that you’ve impacted our hearts in a way we will never fully be able to express. My gratitude will never stop, but when I look at my daughter I will always be reminded.

Can you believe this journey we’ve been on together? It’s been unbelievable. I remarked that I felt at times that I was living a movie. God’s story playing out over time as a reminder to His children (all of humanity) that He is here! That He is listening, and that He loves us. All of us!

Please pray for this last leg of the journey before we take Lilly home. The main prayer requests are for her tolerance and continued strength in feeding. Also pray for complete healing over all that we can not see: her vocal chord, kidneys and liver, specifically. We are both excited and a little scared as we look forward towards going home. It will be wonderful, but it’s bound to be hard. So thankful we are never alone in the “hard” and have a God who promises to walk with us through it all. #lillybundleofjoy
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$63,502 of $60,000 goal

Raised by 747 people in 7 months
Created July 11, 2018
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