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!

lucainvitefa6

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. :)

hlhs

 

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. 

When nothing is certain, everything is possible

Another month, another round of appointments down and we’re now heading into the home stretch. I’m 30.5 weeks, the baby weighs almost 4 lbs. and has jumped from the 40th to 60th percentile for size. He is one very active baby and despite the heart defect, this has been such an easy pregnancy.

Today’s visit included a scan with my new perinatologist and I met my new OB. All of this is done at the Institute of Maternal Fetal Health, a program partnered with University of SoCal and CHLA. My blood pressure is elevated and has been for the last few months, so I’m now on watch for gestational hypertension. If there are any signs of pre-eclampsia, they’ll plan to induce me at 37 weeks, pending nothing goes wrong earlier.  The baby needs to grow inside of me as long as possible to ensure that his little heart and lungs are ready for war when he makes his arrival.

I also met with my cardiologist, Dr. Pruetz and had a surprisingly good report from my echo! First, Dr. Pruetz found another defect in the atrial septum in the form of an extremely small hole in one of the bows of that septum. In a baby with a normal heart, this defect would not be good because it’d allow blood to pass through opposite of the way that it should. However, baby Luca’s heart already forces blood to pump the opposite way because there’s no left side of the heart. This hole just serves as additional opening to get the blood through, thus alleviating some of the pressure going back in the lungs. Because the hole is so very small, Dr. Pruetz said they probably wouldn’t have even picked it up as a defect on a heart healthy baby. But in our case, we’ll take whatever we can get. This is good!

Second, the numbers have changed for the better!  Since the problem has been that blood is pushing back through the septum the opposite of how it should, there’s been pressure on the valves going back into the lungs.  That was where the lung problems came in and why they wanted me to have the in utero surgery. Here’s the good news (and also where I lack the ability to explain all this medical jargon): there are two stats/numbers Dr. Pruetz focuses on during the echos.  In my last two visits, the first stat gave a rating of 3 and now it is a 1 (the lower the better). The other stat is something about the ratio of pressure going back to the lungs and has been at 3:1, but today was at 5:1 (the higher the better). Dr. Pruetz said that the restriction doesn’t look much different, aside from the newly discovered tiny hole, so he had no hard explanation for the change in numbers. I smiled and said “that’s God” and he laughed and responded with “it might just be”.

We’re grasping at any positivity we can, but our doctors always bring us back to reality. At the conclusion of the echo, Dr. Pruetz reiterated that the septum is still very restricted and that we should still plan for an immediate atrial septectomy surgery for Luca after birth, and, of course, gave a friendly reminder of where we stand with a shot at Luca making it through and after surgery. But, today’s echo showed such a sign of unexpected positivity and to think that he still has two months to go for more is a good thing!

I went into today’s appointments really hoping for some kind of base plan on what to expect for delivery. Although they’ve started to form our team of doctors and surgeons and we’re “on the schedule”, we still have to wait to know more.  What all the doctors have agreed on and confirmed is that once the baby is delivered, they’ll hold him up for me to see before they take him away, and that’s it. No holding, no touching. Since CHLA is not connected to the hospital, I won’t even get to see baby Luca until I’m discharged. If all goes well with my body, this can be up to three days. Though a c-section is not yet confirmed, they’ll definitely induce me.  So, if you think of it, here’s how you can pray for us in the coming weeks:

  • That baby Luca will continue growing. We need him to be 6.5 lbs. for surgery.
  • That my blood pressure would not get higher and that I am not heading in the direction of pre-eclampsia.  The longer Luca grows inside of me, the stronger he’ll be when he arrives.
  • That I’m not scheduled for a c-section and that when I’m induced, my body will move along in labor on its own in the timeframe given to me by the doctors to avoid an emergency c-section.
  • That Luca will do a quick somersault before birth. He is breech and has been at all my sonograms for the last month. Of course he still has plenty of time to flip around, but I’m not a candidate for external cephalic version, a massage that will assist in flipping him head down before delivery. If he’s breech, it’s just another reason for them to do a c-section.
  • The doctors and surgeons in general as they are starting to the plan for Luca’s arrival.
  • And selfishly, please pray for me. I am struggling most with the fact that the first time I’ll get more than just a glimpse of my baby with be in a CTICU while he’s intubated with an open chest and hooked up to all sorts of machines. And AJ, too, because though he’ll get to visit with the baby right away, he’ll have to face the same things all while having the pleasure to deal with me and my anxiety. :)

When nothing is certain, everything is possible… and the power of prayer is clearly working, so please don’t stop!

P.S. – Me or AJ?

image-2

 

Postivity + Perspective

Another round of appointments at CHLA are done. We spent the day in Hollywood meeting with my new perinatologist, the surgeon and had another follow-up echo done with Dr. Pruetz.  I’ll keep this short and sweet. Nothing is “better”, but nothing is worse. We’ll take it.  Our follow-up echo showed the same size restriction in the atrial septum and markers of the same amount of pressure into the lungs as our previous scans. The good news is Luca’s tricuspid valve is working properly and they don’t see any other leaky valves.

We met with my new perinatologist. Every single scan we get with an doctor, they say “he’s DEFINITELY a boy”. AJ laughs every time.  They also said he’s growing well and other than this (extremely major) heart defect, he looks to be totally healthy. All my OB care switches to that office at 30 weeks. Then we’ll be taking trips to Hollywood weekly. Yikes.

This was our first meeting with Dr. Starnes.  We already have a general understanding of the staged surgeries for HLHS, so he didn’t delve into technicalities there.  However, he did go into some detail about what to expect with delivery because of the restricted septum. We’ve already discussed the different scenarios and it’s looking like they’ll take the baby immediately after delivery to open the septum.  He’ll go straight to CHLA and I’ll be able to follow once discharged from the hospital where I’m delivering. Lots of things are up in the air: natural birth or c-section? get to hold the baby, even for a minute, after he’s born or take him right away? atrial septectomy (an additional open heart surgery literally right after birth) or just a catheterization? if there is a septectomy, do the Norwood (the first staged and planned open heart surgery) at that time or wait a few days (so two open heart surgeries in the first week)? At this point, the doctors say it’s too early to tell and everything will be solidified around 35 weeks.

My one hesitation of switching from UCLA to CHLA was that I loved our doctors so much at UCLA, and they took such great care of us there. I was nervous I wouldn’t feel the same about any other doctor, but I’ve been proven wrong. Dr. Starnes was so caring and compassionate. Most of all, he was positive. Our doctors always apologize for painting a negative picture of what to expect, but they say we’re asking the right questions.  Of course it’s important to be realistic, which all of the doctors have been, but Dr. Starnes reminded us to just relax and enjoy the pregnancy.  He reassured us that they can’t put a hard number on the chances of dying until the baby is actually here and even then, they can only give predictions.  When we discuss developmental delays, he gives us facts: about 25% of HLHS babies have severe brain delays.  But he also says he chooses to look at the other side of it, which is that 75% can function normally.  He also reaffirmed our decision of choosing to not have the in utero surgery. 

Of course we have our moments, but the positivity surrounding us means the world. And we feel your prayers. I know we do because we feel positive. 

I’ll close with this: Dr. Starnes said to us that Luca will probably never be a competitive soccer player. Sure, he’ll probably be able to keep up with his little friends on a playground and even get to play soccer recreationally as he gets older, but nothing competitive.  AJ’s response was that’s not true. He can be on a competitive team, sit on a competitive bench, and play the last 20 minutes of a competitive match. That, my friends, is positive perspective and that’s what keeps me going.

 

 

Bracelets

It’s been overwhelming to see my Facebook feed flooding with people sharing the post of Luca’s bracelet from our friends at My Happy Place Etsy shop.  If you’re interested in ordering a #LucaKnowsHeart bracelet, please click here.  As always, thank you for your kind words, positive thoughts, and prayers. Please keep praying!

Image


Photo Credit: My Happy Place Etsy Shop

 

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