Poem 

Sorry I didn’t get to stay,
To laugh and let you watch me play.
I know you need me by your side,
I’m sorry that I had to die.
I’m gone but please look up and see,
There’s a beautiful God right next to me.
God didn’t take me because he was mad,
God didn’t take me to make you sad.
But to give us both a chance to be,
A love so precious can’t you see?
Up here no trouble do I see,
And pretty angels sing to me.
The streets are gold where I play,
You’ll come to be with me some day.
Until the day you join me here,
I’ll love you deeply and I’ll be near.
Each breeze you feel and stars you see,
Bring hugs and kisses just from me.

Poem

God saw you getting tired
And a cure was not to be
So he put His arms around you 
And whispered “Come to me.”

With tearful eyes we watched you
As you slowly slipped away
And though we loved you dearly
We couldn’t make you stay.

Your golden heart stopped beating
Your tired hands put to rest
God broke our hearts to prove to us
He only takes the best.

Ethan is safe & healed 

When I was in the ambulance with Ethan, I remember asking God out loud. “I think is time for you to heal Ethan.” And he did. Ethan is now healed! And he is safe. He might have suffered on earth but now he is safe in heaven for eternity with no more pain. Ethan is my little angel. I Thank god for healing Ethan. #iheartethan 💙

Ethan’s Last Moments 

I was able to spend Ethan’s final hours by his side. I road in the ambulance with him on the way home which was about a 3 hour trip. We arrived to our home at 8:20pm I changed his last diaper and it was just him and I. I put him in his crib and he wouldn’t stop smiling at me. He said his last coo’s to me. At 10:40 Ethan stopped breathing and peacefully slowly closed his eyes. We tried getting him to breath by nudging him and asking him to wake up. We called 911 right away, laid him on the floor and began performing CPR as they instructed us. Ethan didn’t move at all, once he arrived to the hospital they intubated him but it was to late, his heart had stopped. Ethan was pronounced dead at 11:45. I’m glad I was able to have Ethan back home to say goodbye. I was able to hang out with him. I was able care for him for his last moments. I feel like my heart is missing a huge important peace to my happiness. I will never forget my little angel. I will see him again! Our little girl Lilian will grow up seeing Ethan’s pictures all over the house. 💙 Ethan will never be forgotten. I love you so much. I wake up every morning thinking its just a dream & you are still here with us. I go to sleep thinking of you, bawling my eyes out. I’m just glad you are no longer in pain.  It was just to much for you Ethan. This is Ethan’s last photo I took of him alive. You can barely see his little face. #iheartethan #findacure #EB

Norma Cruz(mom)

Ethan’s Life

Ethan was born on October 31st 2014. He had painful wounds on his buttocks and had only 4 finger nails that fell off in the few days shortly after, along with the set on his toes. He began struggling to breath his second week post birth with his chest retracting to move air through his down sized air way, causing a yelping sound called stridor at times. Despite his breathing his skin was together enough for us to care for him as a normal baby. All the hugs, kisses and cuddle time we could potentially have were treasured. As time passed his skin became more fragile and his breathing was unstable to say the least. Thanks to the NICU at Stanford’s Lucile Packards Children’s Hospital we were provided with the opportunity to give Ethan the care he needed for him to remain as comfortable and healthy as possible. We were able to master his skin care by mid December but were left with 3 big problems. It was difficult for him to ingest the amount of food he needed, his upper airway was unstable and he had problems passing stool. In early February, after a long battle with infections, a cold and upper respiratory failure we had a small window of opportunity to get Ethan a G-tube so we could have his nutrition under control. We were making progress but we still had 2 out of four main problems. Unfortunately they were problems we did not have long term solutions for. The short term solutions only help the decease compromise more of Ethan’s body. We tried all that we thought was reasonable and we were successful in doing so… Ethan passed away 02.27.15 a day short of his 4 months of life. We are blessed to not only have had this time with him but to have learned so much about caring for his condition. It was a learning curve we will never forget and we will not be letting it go to waste. With all donations given to Ethan that are not used to cover his medical bills, we will be using the funds to create teaching tools for Hospitals and families to use when caring for an EB child. 1 in 500,000 babies are born with EB according to Shriners Hospital in Galviston TX. We will be working with the EB clinic at Lucile Packards Children’s Hospital to create guides and videos to better spread the knowledge about EB care that we have derived from our amazing son’s life. Our efforts to bring our son to a sustainable health came with many life lessons and an exponential personal growth, despite it being so painful. We ask why did this happen. Deeply we know that certain levels of understanding can only be reached by the loss of your beloved child. Those lessons are crucial to level our capacity to our corresponding purpose. We will go through the head aches, random moments of branking down, crying and loosing our heads. Everything will remind us of the treasure we have lost, but we are also being filled with the strength of a lion. What would it mean to us to know that God gave his only son to save of us from the countless mistakes we make if none of us ever carried the weight of loosing our own. I can not begin to understand how tremendous God’s Love is for the world but today I am closest I have ever been to putting it into perspective. For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life. My last words to Ethan, “I love you so much, I would give the world for you my son.”

Marcos Cruz (Dad) 

Photo Feb 28, 11 03 12 AM

Reevaluating Strength

Ethan’s strength continues to amaze us. He has survived and is healing despite the expectations of all of his doctors. It doesn’t make sense medically. One of his doctors believed that if he were to be intubated he wouldn’t survive more than a day because of the extra trauma to his compromised trachea. Ethan has been intubated 3 times since then because problems with securing the respiration tube. The medication that was needed to reduce swelling in his airway, over stressed Ethan’s heart and was causing his heart rate to dip so low that if he didn’t have EB they would have performed CPR on him. The doctors were not sure what was causing his heart to dip and told us they would call us when it was happening again so he could pass away in the comfort of our arms. They also stopped the steroid treatments for the swelling and cut his pain medication in half. To every ones surprise his heart has been at a normal rate for a few days now. His nurses are filled with Joy, at the start of shift, to find out that he is still living and has recovered from the state they last saw him in. Ethan was only to be placed on the G-tube procedure waiting list if he could reach a point of recovery in which he could be extubated, rendered unlikely by a few of his doctors. To our amazement Ethan reached that point on Thursday the 5th. He was due to receive the G-tube procedure on Friday but was plagued with infections. In the last three days Ethan has had 3 different types of infection with fevers that exceed 104°F. Ethan has 3 tubes leading into his body that are all at risk for causing infection. Assuming that we are able to get the infections under control we hope to get the G-tube procedure done soon so we can remove his breathing tube. Prolonged intubation with a low dose of sedation lowers the probability that extubation will be even possible. The longer the breathing tube is in, the more area may get broken down in Ethan’s throat. Ethan’s skin and airway are healing very nicely though, because of all the extra energy Ethan has now that he is not working hard to breath. The situation is very complex but Ethan keeps us reevaluating the meaning of strength. His admirable strength is the greatest I have ever seen with my own eyes. I would have passed away with less than half of what he has endured. He has made people who are conditioned to be emotionally strong, break down in tears. How has he broken nurses, doctors and us? By having us be witnesses to the remarkable strength the Lord continues to bless him with. Ethan is awake for hours because he doesn’t share the same level of comfort of you and I but he doesn’t complain. His gauze changes hurt, especially his right leg, his heart rate races over 200, sometimes he turns red but he doesn’t cry or throw fits anymore. And in all of the chaos we have times of true peace and we thank God for never leaving Ethan’s side. We have all fallen short of deserving God’s mercy on our loved ones. With all the suffering in the world in perspective, I hope you take the time to thank God for choosing you to have such a blessed and abundant life. My father always said, “there is a different world for every set of eyes” and we all believe that what we perceive is true way to interpret the world, but we are all wrong. We can only achieve higher levels of understanding when we except that our interpretation of the world is not entirely correct. If we open our mind and our heart we can find the answers that we desperately need to fulfill our purpose. Where we see death the Lord sees life. Thank the Lord for having this life changing experience fall onto our shoulders… Jesus, if the rest of our lives we are to struggle to be pillars of foundation for your light house, we thank you for giving us the strength to endure the test of time and for distributing the weight among all of Ethan’s supporters. The Glory be to God in the Highest Heaven.

IMG_5513

IMG_5524

48 hours of Success (3 months)

Ethan is 3 months old today and we are very happy to see him healing. The past 48 hour have been all around medically successful. Ethan was using so much of his energy and calories to breath that it was severely hindering his ability to heal and grow. Ethan’s wounds are now healing at an astonishing rate. The Stanford team and The University of Minnesota EB Specialists have been in contact with each other and are now for the first time sharing EB protocols and data in the best interest of Ethan’s care. The Stanford team has adopted new methods of securing the breathing tube from burn victim protocols and the tube has been successfully secured. The right balance for pain medications and muscle relaxers have been establish to keep Ethan stable. It has been difficult to secure a central line (an artificial vein that enters from the leg or arm, directing fluids as close to the heart as possible), but the Stanford team was able to successfully place one yesterday and thankfully, correctly secured the line to his muscle. The last one moved out a couple of centimeters and when the line is not central the adequate amount of fluids can not be pushed through the line for Ethan’s Nutrition and Medication. If the line moves in, the bacteria is introduced into the blood stream at the pick line site, most likely causing another infection. The way that the pick line and breathing tube have been positioned and secured are incredible accomplishments by the combined efforts of the Doctors on site, Radiology and ENT teams. The Spinal Tap procedure also went well. Ethan’s test results for meningitis and infection are still negative. They also tested his immune system and found that he had adequate levels and was not immunoglobulin deficient.

IMG_4669