Happy Thanksgiving | Little Sebastian's First Thanksgiving

2 Months and Still Fighting.

Little Sebastian getting his check ups, nothing gets past this guy he is alway so aware of whats going on!

Two months ago baby Sebastian blessed us by coming into this world. Although he would enter this world under difficult circumstances, his fight has been heard around the globe as a testimony to life.

Sebastian reached two months old, he is one tough little guy. This past month we have watched him get stronger, eat more and start to put on weight. He has had numerous doctors visits, all going quite well. They say his little heart’s pulmonary artery is growing well, which puts him in good shape for the corrective surgery. Overall they say in the scope of conditions as serious as Tetralogy of fallot, Sebastian has “Good anatomy” among the cases they have seen. We are thrilled they are saying this, as this means after the corrective procedure his prognosis is positive. 

Sebastian is such a special little baby, he is very keen, rehabilitation has shown no signs of any brain damage, despite his early on low oxygen levels and  his near death episode during his second surgery.  He continues to amaze us with his sweet happy personality. He laughs and smiles a lot now and even tries to communicate in his baby language.

Sebastian did the most amazing thing the other day, at only 6 weeks old, we were feeding him and he put both hands on the bottle picked it up and started feeding himself. This is so encouraging for us as it shows his brain is developing good motor skills, which is always a concern when babies have gone through low oxygenation levels as Sebastian has.

Sebastian with his favorite animal Mr. Monkey   |   Sebastian with Alicia "self feeding" holding the bottle on his own!

We are so very thankful to all of you for your support and loving care to baby Sebastian as he fights this battle for life. We are getting closer to the date in which he needs to get his final corrective surgery, and he still needs your help to get the proper care he needs. If you feel inclined, please help him by asking your friends to donate so we can reach the goal. We so greatly appreciate all you have done.

God Bless you and your families.

Sincerely

Simon, Alicia and Sebastian.

1 MONTH OLD | Sebastian is past his first major life marker

The little Sailor Sebastian has made it past his first month of life! This is a major life marker for him, as generally if they make it past the first 30 days they become significantly stronger and more resilient to what life brings their way. We are so so overjoyed to be able to celebrate his one month marker with him in good recovery and health. Thanks to all of you for your prayers and support. He is getting stronger (And Fatter) each day as we progress to his next surgery.

Happy Sunday to you and your families.

In the Name of the Father, The Symphony of Healing

Peacefully sleeps during his blessing

A tribute to the prayers and care of friends and family worldwide, lay witness to baby Sebastian’s recovery from his first surgeries. God is our chef maestro, as he plays his symphony of healing.

Little Sebastian craves all the prayer he can get, which nourishes his soul like his mothers milk fuels his flesh. Father Guillermo came to our home yesterday to lay his hands on Sebastian in a prayer of healing. As we gathered around, Sebastian laid softly in his crib in a deep sleep; oh how sweetness feels my soul to see him sleep peacefully without forceful breaths. As he laid, Father Jose, Alicia and I stood by his bedside, laying our hands his soft red hair. In glorified silence the father prayed for his healing.  He gave us a blessed handkerchief blessed by Padre José Guadalupe Santos, which we laid over the sleeping angel. Protected by love, which transcends from above, and flows from the hearts of people who care, Sebastian forges on. 

We want to thank all of you not just for your support but also for your thoughts and prayers. So many of you have reached out with encouraging words, we are so touched by the warm kindness and care each of you have shown for our precious little baby. We flight the battle side-by-side the little warrior as he continues to impress us daily with his resilience and fortitude. Life is such a beautiful thing, God gives us the patience and strength for each moment, he engineers our bodies so strong, yet at the same time so fragile that only he can fix them. The pride we have he often burns, so that only his power stands in our ashes. We are grateful for this experience, howbeit difficult, so that through it, his greater purpose may be revealed.

We send you all our warmest regards and love to each member of your family.

Sincerely

Simon and Alicia.

Sebastian is doing better then ever…..he is off Oxygen support now!!

Leaving the hospital oxygen test without Oxygen support!

Since 20 minutes after his birth little Sebastian has been on some form of oxygen support. But not anymore,  he is finally off oxygen after the 24 hour observation oxygen test at the hospital, the little warrior passed with flying colors. He is in around 85% oxygenation, which is excellent considering he has been in the low 70% even with oxygen at times before (Normal percentage is 97%). We have him home now, and it’s a blessing to see him without the tubes in his nose, such a handsome little guy with a full head of hair. I joke that he has more hair then his daddy, ha . Thanks to all of your prayers. After his final surgery he should be in a normal % of Oxygenation, which we are really looking forward to.

Just look at how much progress he has been through, from hand pumped respirator to breathing snuggly in his mothers arms on his own!

Little Sebastian has progressed so much

The Snuggle of a mother

First Time Alicia has been able to lay side by side with little Sebastian. 

First we want to thank each of you so much for your kindness and support for little baby Sebastian. We are truly grateful and amazed at the sympathy in everyone’s hearts.

Big day, today we are in the hospital for 24 hours to test how Sebastian responds without oxygen support. So-far-so-good. Also it’s kind of cool because at home we have him always in a crib or nursing on the coach, and since we have to have him in a sterile room, he is confined to only his room, so Alicia has never laid next to him.

Like in the photo above the crib in the hospital room is huge, so mother and child are now joined for the first time in a soft side-by-side snuggle. It’s so sweet I love it! 

Sebastian is such a warrior his oxygenation level so far is great, without oxygen support he seams to be doing fine. If the oxygenation stays the same throughout the 24hour test it will show that he is getting way stronger after his second surgery. Specifically it would mean his lungs have recovered by the damage he undertook when they had him on the respirator after his second surgery. It also shows that the blood flow hemodynamics are stable, meaning the second surgery outcome has been exceptional. All this is excellent news in preparation for his second surgery.

Alicia’s mother “Grandma” is here, she has been a huge logistic support during the entire journey of little Sebastian. We love you Dona Alicia!.

We are looking into more details of his next surgery and evaluating the best options for his care. We will update everyone on this and details of how the fundraiser supports every aspect of his healthcare.

We send lots of love to all of you

Sincerely

Simon & Alicia.

Alicia holding Sebastian for the first time.

The anticipation was cut once Alicia was finally able to hold little Sebastian 9 days after he was born. You can't imagine the emotion she felt as a mother. Before this blessed moment, we were scarcely allowed to be with him for a few minutes at a time and were forbidden to hold him. As a new father, seeing Alicia so many times hovered over her little baby as he suffered, weeping yet not being able to hug him, made my heart grieve bitterly inside. Seeing her so happy with our son was the greatest gift of life I could ever ask for.

Thanks for all your prayers and support, you all show the goodness that is embedded in the human heart.

Simon & Alicia

Prayer that saved a life | This post precedes after “The agony of waiting” post

Sebastian's mother Alicia comforting him after his second surgery. 

These events took place late at night on September 13^th, 2013.

Prayer was a constant companion of little Sebastian and still shadows over him. Friends and family across the globe in a chain of prayer combined the best in surgeon skill with Gods mighty strength.

We were privileged to have my Mother Hazel here in Nicaragua while Sebastian was born. She had come down to be with us for three weeks for what we thought would be a “normal birth”. It was anything but that. However my mother has a special calmness about her which no doubt comes from the fact she has had 10 children of her own, in addition to being a devout believer in our Lord and savior.

Photo I took in one of the hospital's chapels. 

She was my only blood related family member that was in Nicaragua during Sebastian’s first two surgeries, however I must say Ernesto and Dona Alicia although are not blood relatives are as close to being my father as any.  She brought a peaceful trust in God demeanor throughout the entire ordeal.  In one instant after we learned Sebastian would have to go into his second emergency open heart operation in the same day. she noticed even the veteran surgeon was nervous. I mean, originally in his first surgery there was only a 15% mortality rate, but now with him not even recovered from the first open heart surgery, having a second surgery would certain make his chances exceedingly more slim. All we could do was pray, but we were also fortunate that all the doctors on the team were such strong believers in Gods power. My mother asked the Surgeon if she could pray for his hands before he went into the operating room. With a pleading face he complied, and they prayed together in the dim lit hallway adjacent to the operating room at 11:45pm. God was no doubt the chief of the operating team. He blessed our little warrior with the strength he needed, when it seams little Sebastian would have only a pint-sized portion left.

My beloved son 

We slowly retired back to our base camp (the room), which was packed full of  loving family members who wanted to pray for our little Sebastian during these wretched hours.

You hear this phrase many times used casually, “felt like my heart has been ripped out”, however I believe Alicia and I experienced just that. If we let our minds wonder into the dark road of negativity about the future of our beloved son, it would become too much to bear. Even with our minds on the Lord, there was a paralyzing sadness and pain that seamed to resonate through us, as if our very bones were gelatinized. We found comfort during these excruciating hours in God and the warm embrace of friends and families. 

Sebastians Grandmother finally holding him after he came home to recover

The road to the following day dragged onward in a haze. However the next morning when our little warriors heart beat on, joy was like a mist in the air; cooling the nostrils of our soul in a soothing euphoria.  God was with our son the entire time.

This is one of the poems I wrote for him while he was in surgery.

My heart is weary
My love is strong
Tears stream.....
My son be strong

You are so small, 

weak and meek,

But your fathers strength I bestow
Your mothers love lightens your hard tow

With you we are now
Forever to be
Loving you now,

our tiny member of the family.

Beat on through this challenging hour
Beat on through this breaking life
Beat on though your heart be weary
Breath strong and step into your life