Letters to Luca

I write daily letters to Luca, but last night I got to send one all the way to Heaven, among 20,000 other lanterns, at the RiSE FESTIVAL.

WATCH HERE

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RiSE elevates hope, ignites dreams, and creates memories you will never forget.

It’s a centuries-old idea that’s both simple and powerful. Thousands of lanterns, each representing a hope, a dream, a new leaf, or a forgotten wish coming together to form something beautiful. Your lantern means something unique to you. But together they give a collective voice to our dreams and challenges in a beautiful display—and one unforgettable evening.

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More Info: http://www.risefestival.com
Photo Credit: www.jenrobin.com

A Week with Luca

Luca was born on Thursday, August 28th at 10:35am.  My c-section was scheduled for 9:30am and I was to arrive at the hospital two hours early.  Both my parents and AJ’s dad flew in town for the big day. We were up late the night before as the LA Galaxy played DC United and dedicated the night and game to Luca.  More on that later. We left our house around 6am to get to the hospital in time, but needless to say we didn’t get much sleep with all the excitement and anticipation of meeting Luca.

At the hospital, everything was scheduled to happen on time. I was dressed in my super cute hospital gown (not) and pumped full of fluids. Shortly before 9:30am, I was wheeled back to the OR.  AJ had to wait outside the room while they prepped me and gave me the epidural. The room was freezing and I had these contraptions hooked up to my legs. The room so sterile and I remember seeing the little bed set up for Luca. The anesthesiologist talked to me about the epidural and how I would feel pressure, but no pain. I received a quick shot as a local anesthetic for the epidural, and right before it was given to me, someone ran back into the OR yelling that the OR at CHLA was not ready and to hold off on the c-section. The anesthesiologist was furious – he literally had the needle to my back to give me the epidural. Needless to say, I became a very quick emotional wreck. Why was this happening? The whole point of this scheduled and planned c-section was to have all the doctors and ORs and everything else ready to go for Luca’s arrival. So, they took off all the contraptions, put me back in a regular bed, and wheeled back down the hall to wait.

Once re-settled in a holding room, I was pumped full again with fluids. Just as I was re-situated, CHLA called and said they were ready and I was wheeled back again to the OR. I was reattached to all the contraptions and got the epidural. AJ still wasn’t allowed in the OR at that point. The anesthesiologist told the nurse to expand the IV port in my hand, and that was the worst physical pain I felt throughout the entire process. I was so overcome with emotion that the anesthesiologist yelled that they were going to have to sedate me. I begged him not to because I HAD to see Luca. I got it together and they brought AJ in the room and started my surgery. There were SO many people in that room and most of them were there for Luca.

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Luca is in a little bed somewhere between all those doctors.

At 10:35am, my little baby boy made his way into the world, crying and all. What a wonderful and relieving feeling that was. He weighed 6.61lbs, but there was no time to measure his length. I had a wonderful set of nurses who were there for me throughout the delivery. Because we knew that I wouldn’t get to see or hold Luca upon his arrival, one of the nurses took a ton of pictures on her phone. As things would happen, she would show me, and then go take more pictures. So, though I couldn’t see Luca as it was happening, I did see pictures right away. My first thought was wow, he looks just like me.

Once the team of neonatologists got Luca situated and ready for transport, they were off to CHLA with AJ.  As they wheeled Luca out of the room, they stopped by me head so I could get a quick glimpse.  I heard that Luca set the fastest transport record for Hollywood Presbyterian – 14 minutes from delivery to the OR at CHLA. (And the doctors tried to say he couldn’t compete… #winning!) By this time, I was so drugged up and really feeling loopy. My mom came into the OR for the remainder of my surgery. For those of you who know her, she is a saint and does not say bad words, but my first words to her were, “Mom, they’re trying to f*** me up!”. She responded with a quick and loud, “MEGAN!”. Everyone laughed, and apparently I said lots of other funny things, too. I knew the anesthesiologist already thought I was a nut job from my prior meltdown (but who doesn’t meltdown when they get to do almost do a c-section twice?!), and he clearly pumped whatever he had into my IV. No complaints. ;)

While Luca was at CHLA in surgery, I was in recovery back at HP. After a few hours, I was taken to my final room in the maternity ward.  HP set us up nice in a corner unit with panoramic views of LA with an extra room in the suite for my guest of honor – my mom. My dad and father-in-law were back and forth between visiting with me and Luca, but AJ spent most of his time with Luca at CHLA. Shout out to my mom who stayed with me 24/7 – or maybe 23/7, I think she got to slip out to see Luca for a little – and was my VIP caretaker. The next day, I was ready to try to start to walking because I wanted to discharge as early as possible to get over to Luca. I guess I learned to watch what I wish for because I got to discharge early alright.

That day, AJ visited with me for a little bit and when he left to go back to CHLA, he told me that he would FaceTime me with Luca. I spent some time trying to walk and then realized that I never heard from him. I know things are crazy at CHLA, so I figured he just forgot and called him. No answer. I called both my dad and father-in-law, who were both with Luca, no answer. I called Luca’s CTICU room. No answer (and there’s always an answer there). I was getting a little worried, and finally my father-in-law answered the phone crying. I knew something was wrong and I feared the worst. I began screaming please God, no. I thought Luca died and all I could think about was that I wasn’t there with him. I was never with him.

The nurses knew something was wrong and began doing everything they could to comfort me and get me out of there. I had to “officially” discharge before I left… and get myself together. I had just sat up for the first time only a few hours earlier and they had just taken the catheter out (TMI, I know, but that’s how “unprepared” I was to leave). They had the doctor on the phone giving me quick post-surgery instructions and were having me sign all the required paperwork. By that time, my dad and AJ got to my room. As we were leaving, the nurses were taking the IV port from hand at the elevator. That’s how quick the entire process was.

I was wheeled across the parking lot and taken up to Luca’s room. He was still in surgery. Thankfully, Luca did not die, but the next worst possible thing happened – his heart crashed (aka cardiac arrest). There are “Code Blue” buttons throughout the entire hospital and of course in each patient room. My dad was in Luca’s room when it happened. He recalled the nurse, Carlos, pushing the button and a stampede of people running to the room. The CTICU suites are designed to turn into ORs, so they performed surgery right then and there. As it turns out, AJ got to CHLA from visiting me at HP right as it happened. He was trying to be buzzed in through the doors to the cardiac floor with no response. He ended up letting himself in and saw all the doctors running to Luca’s room. That’s why he never FaceTimed me.

Once I got to CHLA, they were finishing Luca’s surgery. Before we went into his room, the surgeon, neonatologist and other nurses came to talk to us about what happened. Luca’s heart crashed and Dr. Nelson gave him CPR. I think she said maybe five compressions. I remember this fact because it meant that brain damage was a very real possibility for Luca. They told us that Luca was put on ECMO, that he had 5-7 days to “get better”, and if he didn’t, then we’d need to make some decisions. The surgeon didn’t think Luca’s prognosis looked too good. I needed to get to my baby.

I was wheeled into Luca’s room with AJ to see him for the first time. There he was, on his little bed with a 3″ chest cavity exposing his heart and two tubes coming out hooked up to a massive machine, the ECMO circuit. He was intubated through his nose with bright orange tape keeping the tubes in place across his face. I just caressed his helpless little body and began talking and singing to him. I sang Jesus Loves Me and he opened his eyes right away. What an emotional moment.

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My first time seeing Luca.

AJ and I stayed at Luca’s bedside all day and night. Our dads, “the grandpas”, took rotated for overnight stays so that Luca was never alone. The rest of us stayed at the Ronald McDonald House.  The ability to stay at the Ronald McDonald House was a lifesaver for us and it’s a charity that I now feel a strong calling to support. More on that later. Each day, we’d get a report from Dr. Nelson on how Luca’s night went and what the plan and expectations were for the day. We never really got a “good” report expect for one day. Things never seemed to get worse, but never better. Luca’s kidneys were having a hard time allowing him to urinate and his body just would not release fluid. He was given a ton of fluids and blood transfusions and his poor little body was so swollen.

We had a team of the most wonderful, attentive, and compassionate nurses caring for Luca. Two nurses were in his room around the clock. One at his bedside and the other monitoring the ECMO machine. Luca had daily head ultrasounds to measure the size of his brain to look for possible brain damage. Luckily, he never appeared to have any (which really is miraculous considering he arrested, had CPR, and was on ECMO for so long).

IMG_1025Luca’s CTICU room. The machines to the left are his medications, the machine in the middle is the ECMO circuit, and the machine to the back right is the ventilator. There’s a couch by the window and that door is a bathroom.

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Luca getting a head ultrasound. The nurses always gave him a cute combover after all the gel was in his hair.

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One of Luca’s best days. When we arrived that morning, the nurses had him set up with the puppy.

On Thursday, September 4th, the doctors decided it was the best time to take Luca off ECMO. His heart showed ability to function while resting (on the machine) and the benefit of being on the machine was starting to be outweighed by the harm. The surgeons were going to do a hybrid version of the Norwood surgery (the surgery Luca was supposed to have at a couple days old) because of some of the work they already did when they put him on ECMO. Dr. Nelson told us she would only come out to update us if things were not looking good. She knew that I needed to hold Luca while he was still alive if things weren’t looking good. I had never had the chance to hold him yet. Sure enough, about 30 minutes into the surgery, she came out and said that his pressures were dropping and he was not going to make it. They cleared the room and brought AJ and me in. They immediately placed Luca in my arms. His sweet little eyes were open for a short time and I just hugged him and sang Jesus Loves Me again to him. His daddy was right there, too. Luca passed away peacefully in my arms at 3:16pm.

Even though this is long, it is really just a brief version of our week with Luca. I often fear that our time with Luca will turn into a faded a memory, and I needed to get down the turn of events of his precious life. Though Luca was on ECMO, which is a form of life support, it is a heart-lung bypass machine. It takes blood from the heart, through a machine to be oxygenated (artificial lung), and goes back into the body for circulation. While on ECMO, the heart and lungs are given a break from supporting the body. That’s why Luca had heart function while on the machine. Luca was still very interactive with us. He opened his eyes when we talked to him, we just had to block the light. He kicked his little feet around and moved his arms. He squeezed our fingers. He moved his mouth and took a pacifier. We were with him around the clock at his bedside, reading to him, talking and singing to him, caressing and touching him, and helping the nurses as best we could.

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To my sweet Luca: I carry your heart. I carry it in my heart.

Thanks for reading and continuing to think of and pray for our family.

*** NOTE: We ask that images not be taken or reposted. Thank you for your understanding. ***

Wave of light at 7pm local time

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Today is Pregnancy and Infant Loss Remembrance Day. Please join us in the worldwide WAVE OF LIGHT by lighting a candle at 7pm local time. The result is a continuous 24 hour wave of light across the world to honor and carry on the memory of Luca and all the babies who’s lives were lost too soon.

This is something dear to my heart and would mean the world if you could participate. Please feel free to share!

Service Arrangements

Hi friends,

We can’t thank everyone enough for everything you’ve all done for us during this time. When the time is right, we want to share all our stories and pictures from the special week we had with Luca.

In the meantime, memorial service arrangements have been made for Thursday, September 11th at First Baptist Church of Waldorf, MD. A public viewing will be held from 11:30am-12:30pm with the service beginning at 12:30pm ET. Internment will follow at Trinity Memorial Gardens and everyone is welcome back at the church afterwards for food and fellowship.

In lieu of flowers, please consider donating in Luca’s memory to either the Heart Institute at Children’s Hospital Los Angeles or to the Ronald McDonald House charities, both linked below.

http://support.chla.org/pages/lucaknowsheart

http://www.larmh.org/donate.php

Please continue to pray for us.

First Baptist Church of Waldorf
10045 Bunker Hill Road
Waldorf, MD

He’s here!

Luca was born at 10:35am PT at 6.61 lbs, and came out crying, which is good. He just finished the septectomy and is getting settled in his CTICU room with all the cords and machines.

Now that we’ve made it past this, please continue to pray for the upcoming days we are all facing and for Luca’s next heart surgery, sometime within the week.

We are so overwhelmed by all the love and support leading up to today. Thank you all!

Helping Others + Final Update

People have asked how they could help our family, but there’s lots of other families who need our help as well. We’ve set up a fund with Children’s Hospital LA for tax-deductible gifts to go directly to their Heart Center. This will fund research in helping children like Luca live long and heart-healthy lives. We’ve been lucky to work with a team of renowned doctors and have received excellent attention and care at CHLA. This is how we feel best lead in raising CHD awareness at this time.

http://support.chla.org/pages/lucaknowsheart

For a quick update, I had my final perinatologist and OB appt last week. Baby weighs about 6.5lbs (yes!), but unfortunately they found some unusual blockage around his anus, suggesting intestinal problems. This has never been seen on our ultrasounds before, so it’ll be something they look for in his 5 minute evaluation before the septectomy. It could end up being nothing or it could mean additional surgeries. We won’t know until he’s here.

In all my frustration in switching doctors midway through my pregnancy and sitting 2 hours in one way traffic for weekly appointments, I had a good final prenatal appt with my OB. She reminded me that I’m the exact place I should be for the sake of the baby. She even shed a tear with me.

With that, we are 4 days out. We’ll be sure to keep everyone posted when Luca arrives. Please continue to pray for Thursday and beyond!

New Bday, Oxygen Test + Event

First –  A new birthday! After having a little chat with my team of doctors, we decided it might be good to have our heart surgeon ready and available for Luca’s birth.  Now reread with sarcasm. Therefore, the c-section has been moved to August 28th when Dr. Starnes will be ready and waiting for Luca’s septectomy. He will be born at 37 weeks and 2 days.

Second – I had a maternal hyperoxygenation test done which measures the baby’s vasoreactive response to the oxygen. Medical jargon aside, they are checking to see how muscularized the valves are from the heart to the lungs (remember, the atrial septum restriction is causing pressure back into those valves because the blood cannot flow freely between the right and left atrium).  The test is comprised of three phases while measuring the usual stats during an echocardiogram.  In the first stage, the measurements are taken as usual.  The second stage occurs after I’ve been on oxygen for 10 minutes and measurements are taken at that point while I’m still on oxygen.  The third stage occurs after a five minute recovery period post-oxygen where measurements are taken for the final time.  The cardiologist wants to see the baby’s valves “relax” (via measurements) during the oxygenation period.  Luckily, we saw a change in Luca’s stats! However, prior testing has indicated that any change <10% still requires immediate intervention (the septectomy).  Without officially crunching the numbers right there, Dr. Pruetz said we are right around the 10% mark.  I chose to do this test last minute and was forewarned that no matter what the results were that we should still plan for immediate intervention.  Also, this test has only been performed on about 50 mothers/fetuses, so it’s still somewhat experimental (also why we were still planning on immediate intervention despite the results).  We just went into it figuring that knowledge is power and were hoping for good news.  The good news is that Luca’s valves ARE able to “relax” to an extent, which suggests that some oxygen will have the ability to flow to/from his lungs.  The not so good news is that they’re not going to be totally open and we’re still looking at immediate intervention and a long, long road ahead.

Other good news from this appointment – Luca is 6.1 lbs! 6.5 lbs is the magic number for surgery, so he should be a good and hefty size by delivery.  Additionally, all other functions of his heart are working properly.

Third – Our Luca Knows Heart fundraiser last weekend was such a tremendous success!!!! We cannot thank everyone enough! From our friends who put this entire event together, to those who got tickets and came out to support, including our friends in town from DC and all of our SoMD friends who now live in Cali, to those who made donations for the silent auction and raffle items, to those who bid on these items, to those who made donations in general, including so many people who don’t even know us, just everyone! It was such an overwhelming success. We are surrounded by people who truly know heart. <3

If anyone reading this lives in SoCal, I would highly recommend any of the vendors below.  This list is just a start of those who contributed, and we’ll update as we get the entire list, but many, many thanks to…

Jen + Meaghan – You both need to quit your day jobs and go into event planning. You are two of the most selfless people and we can’t thank you guys enough for putting this entire event together. The Deck Hermosa – thanks for closing down business for our event.  We were at capacity with those who purchased tickets!  Karah Nall - graphic design for the shirts and invite. Robert Mora PhotographyThe Stylist LABacchus Wine Shop, The Yoga Loft, Simmzy’s, Tin Roof Bistro, Silvio’s Brazilian BBQ, Fresh Window Tint, My Happy Place Shop – the bracelets, which sold out so quickly!, all of our MLS friends who donated apparel and more, Passion Flowers, Anna Trebunskaya – private dance lessons, and anyone else we’re missing. THANK YOU!

LKH Fundraiser

For a blog that started out to keep our friends and family back home updated, we’ve had over 16,000 views.  We’ve had countless people wish us well, pray for us, support us, and check in on us. We’ve had so many people offer to do so much for us, and we are so grateful. The countdown is on for August 28th and we ask that you continue to keep us in your prayers – we are praying for a miracle, whatever it may be.

From the bottom of our hearts, thank you!

Just Keeping it Real

The cardiologist appointment we had yesterday was quick and to the point. Dr. Pruetz did the echo, got some good images of what he wanted, and informed us that nothing has changed. Though the septum is not fully intact, the restriction is still very moderate, the stats show that Luca’s valves are muscularized and that lung damage is to be expected.

I asked him about the c-section plan my other doctors discussed with me and found out that delivery was scheduled on a date that Dr. Starnes, the surgeon, is not in the hospital……… There may be a change in date now, but we won’t know until next week. I feel very adamant that anytime my baby’s heart will be open that Dr. Starnes will be the one working on it. It is one of the main reasons we chose CHLA.

This entire pregnancy has been filled with unknowns and it’s been hard for the doctors to give any clear and concise answer on what exactly will happen.  Now that we have a plan pretty much in place and we’re getting down to the wire, I got real with Dr. Pruetz. I asked him if this was his baby and I was his wife and he was sitting in this room with a heart doctor to get a clear picture of reality, what’s the answer he would expect.  He said, wow you’re tough, but I understand what you mean. And he got on with it.  This is where we are…

We can expect a very, very sick baby.  The baby will be immediately taken to the OR for surgery on day 1 of life. A septectomy will be performed to clear the blockage, not to be confused with a septostomy which is done via catheterization. This is a full on open heart surgery. We can expect the baby to be intubated and on a ventilator (breathing machine) immediately upon delivery and throughout the septectomy. During this time, he will also be on the heart-lung bypass machine. Once that surgery is complete, his chest will be left open and his body will probably experience severe swelling.  A primary concern will be renal (kidney) failure and should Luca experience any of that, he will not be a candidate for the first “re-plumbing” surgery, the Norwood.   Brain damage is a concern while on the bypass machine.  The doctors hope to get his swelling down in enough time to perform the Norwood surgery without having to close his chest. Best case scenario for the Norwood would be within a few days of the septectomy, but given the swelling they are expecting, it could take longer.  He will continue be on the ventilator throughout the Norwood and back on the bypass machine. More chance for brain damage. The moment of truth will probably come after this surgery. Luca will be recovering from two open-heart surgeries after the Norwood and we are to expect swelling, kidney problems, etc. post-op.  All of this doesn’t even matter if Luca’s lungs aren’t working properly to begin with. But, if he makes it through the Norwood, there’s a 50% chance he will come home.  If that’s the case, there’s a good chance he will come home with oxygen given the lung issues they anticipate, but they hope to have him feeding on his on by that time. We can expect at least a two month stay between the CTICU and step-down ICUs IF both of these surgeries go well without any additional complications. That’s best case scenario, though, unfortunately, not the expectation). Assuming we make it home, there’s a 50% chance Luca will survive to make it through to his second surgery, which would be around 6 months.  If we make it to the second surgery and beyond, that’s already considered a miracle.

So 2.5 weeks til delivery and that’s where we are. This is probably just really awkward and I know people don’t know what to say or how to even approach this. Neither do we.  Just please continue to pray for us and Luca.

 

FUNDRAISER EVENT!

It’s not usually sunshine and roses with Luca’s condition, but we do try to find the good in everything thrown our way. One of the most positive and humbling things we’ve experienced thus far is the love and support from our family, friends, and even people we don’t know.

Some dear friends have put together a fun event to support us and we would love to see you there!

August 9th from 6-9 at The Deck Hermosa . Food provided by Simmzy’s MB and Silvio’s Brazilian BBQ, specials on beer and wine, and amazing raffle/silent auction items!

If you can’t make it, there are still other ways to help.  Just click on the link below.

http://www.eventbrite.com/e/luca-knows-heart-tickets-12202402715

As always, THANK YOU. The love, support, positivity, check-ins, kind gestures, prayers, etc. mean the world to us!

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P.S. 26 more days!!!!!

Birthday

Quick update. We have a birthday and a plan! Luca will be born via c-section first thing in the morning on August 26th… aka 4 weeks from now (aka basically tomorrow). All of the doctors involved have met and planned for the c-section at 37 weeks due to my gestational hypertension (thankfully all tests came back negative for pre-eclampsia) and to have the team of doctors, surgeons, transporters, etc. ready and waiting. My OB has promised that 37 weeks is enough time for Luca’s lungs to develop as good as possible to prepare for the multiple surgeries. He has been growing as he should and is otherwise healthy, so he should meet the 6.5lb weight requirement for surgery by that time.

The neonatologists met with me separately from the OB and went over their role. They will have a team in the OR to stabilize Luca and pay special attention to his breathing. Upon delivery, he will be started on IVs immediately to administer a drug called PGE, which keeps circulation in the baby’s heart similar to the way it was in utero.  A common side effect of this drug is it stops the baby from breathing. Given the fact that Luca will probably already have trouble breathing combined with potential of this side effect, he will most likely be intubated and on a ventilator right away. Once he’s stabilized, the transport team will take him next door to CHLA and I’ll move to recovery. AJ can go with the transport team right away and will be with the baby.  I’ll follow once discharged, hopefully within two days, but was told to plan for three.

I was also able to get a clear answer on what the good stats meant at my cardiology appointment earlier this month. Below is a diagram – see if you can follow along. :)

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The first good thing was a ratio that went from 3:1 to 5:1. The higher the better.  Blood needs to flow through the right and left atriums (the upper red and blue sections) because it can’t go through to the left ventricle (bottom red section) as it is almost non-existant.  The flow through the pulmonary vein (the middle blue tube) drains into the left atrium and pressure builds because there’s restriction in the flow from the left atrium to the right atrium.  Blood flow through the pulmonary vein at a ratio of 5:1 means that the septum is moderately restricted versus severe.

The other number measures the different in pressure between the left atrium and the right atrium.  I believe the scale is 1-5.  The rating was originally a 3, but is now a 1. The higher the number, the more restriction of blood flow.  Therefore, the lower the better.

No sonograms or baby updates at this appointment, but we have a cardiology appointment next week.  We will see then how Luca is doing and are hoping for any positive news. We can’t wait to meet this little guy!

luca 33 wks

 

Here’s what you can pray for between now and August 26th:

  • A complication free c-section. The faster I heal, the quicker I can get to Luca.
  • That the neonatologists can quickly and successfully intubate Luca and get him any breathing assistance he needs right away. Any time spent without oxygen getting to his brain means brain damage. He’ll be checked before and after each procedure to monitor the size of his brain for damage. 
  • Continue to pray that Luca’s valves and lungs are not damaged from any pressure experienced from the restriction in utero.
  • That this baby will grow, grow, grow. As you know, the bigger the better for surgery.
  • The hands of the cardiothoracic surgeon. Luca’s heart will be smaller than a walnut and swift and steady hands can make all the difference.  For each heart surgery, Luca will be on the heart-lung bypass machine which also carries a high risk for cognitive damage. Luckily, Dr. Starnes and CHLA have a record of short time spent using the bypass machine.
  • All the doctors in general.  I was told to expect “a million people” in the OR during delivery, and while it’s obviously an exaggeration, there will be a lot of people and a lot going on.
  • Finally, for a miracle.  It doesn’t necessarily need to be for Luca to suddenly have a totally healthy heart, but there’s so many hoops for him to jump through that we’ll take a miracle anywhere in the process. 
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