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Diego Eduardo’s Story

Site created on March 25, 2018

Friends and family,

Welcome to our CaringBridge website. As most of you know, Rob and I have another beautiful baby boy on the way who we've named Diego Eduardo Maresh. Diego is active, is overall very healthy and is doing great in utero. We can't wait to welcome our sweet baby into the world around the second week of June.

A few weeks ago, Diego was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), a rare congenital heart defect in which the left side of the heart is underdeveloped. This means he will have to undergo 3 major open heart surgeries at 2-5 days old, 4 months old and 3 years old.

He has an additional heart complexity called Restrictive Atrial Septum that only 10% of children with HLHS have. This means that when he is born, depending on his oxygen levels, he will most likely need immediate emergency intervention because his heart might not be able to pump blood to his lungs. He will either go through a catheterization procedure or an open heart surgery as soon as he’s born. He will then need to recover before the 1st major surgery at 2-5 days old. This additional complexity puts him at a much higher risk to make it through and recover from the 3 major surgeries.

The cardiologist at Children's explained that they won’t really know the exact condition until Diego is born. His case will be reviewed with all the Cardiologists and Surgeons at Children’s and they will come up with a recommended plan and procedure for his birthday. He will not be going to the NICU after birth. Instead, he will go directly to the Cardiac Intensive Care Unit, where he will receive attention directly from many specialists. As for next steps, we will have our next ultrasound April 2nd, we will meet with the surgeon and take a tour of the facilities where Diego will be for about a month. At 32 weeks, we will go in every week to monitor Diego's heart and I will most likely be scheduled for induction at 39 or 40 weeks or a cesarean if needed.

We found out some great news at our last ultrasound: Diego is bigger than average (he’s 80% on the sizing scale) weighs over 2 lbs., and seems to be doing very well in utero. This is great news because it will help him go through the big surgeries and recover from them. He is kicking and moving a lot. We think he’ll like to wrestle with Sebastian and all of his cousins.

Rob and I are trying to focus on living one day at a time and enjoying our sweet Sebastian. We are scared and are in disbelief, but we’re trying to keep each other focused on positive outcomes.

We pray that baby is born full term and is otherwise healthy, that his oxygen levels aren’t low at birth and that his lungs are strong and healthy. We pray that he is strong enough to receive and recover from his multiple interventions and surgeries.

We love you all so much and appreciate your support and words of hope and encouragement. Thanks for visiting our site. We will be using it to keep everyone updated. If you want to receive updates, click "follow" on our site. If you are interested in learning more about Diego's heart condition, here are a couple of links that have great information:

https://www.childrensmn.org/services/care-specialties-departments/cardiovascular-program/conditions-and-services/hypoplastic-left-heart-syndrome/
http://www.childrenshospital.org/conditions-and-treatments/conditions/hypoplastic-left-heart-syndrome/overview

At this time we need your prayers and good energy. As we approach our due date (June), Rochelle will create a food train that will help us greatly during the month that Diego stays in the hospital. More to come.

Love,

Rob, Liliana, Sebastian and Diego

Newest Update

Journal entry by Liliana Maresh — Nov 1, 2018

Hello everyone,

Diego came home from the hospital yesterday afternoon. We are so excited to have him back!!
Diego is doing well. He is so happy; he smiles all the time (even in his sleep!) and loves to snuggle and be hugged.

Diego went through his second out of three open heart surgeries called The Glenn Procedure. His heart is now under a lot less pressure and doesn't have to work as hard as it was during his first 4 months. He now has a break between now and surgery #3, which will be in a couple of years.

Diego will continue to take some heart medication and see his Cardiologist on a regular basis. We have had an amazing experience at Children's and are so thankful Diego is so loved.

Thanks everyone for your prayers and support, we love you all so much!

Diego, Sebastian, Rob and Liliana

Read More of the journal titled "Diego is home!"

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