We thank you from the bottom of our hearts

We have been overwhelmed by the care of everyone for little sebastian. Friends family all of you who have shown such human love and concern. Check out the art above which a friend Ivan made in Peru for Sebastian's cause. We love you all and are very grateful for all of your support.

Lots of love

Simon & Alicia

The Rise of the Frog

Little Sebastian is improving more each day. Here he is in his little frog swaddle, keen eyed and looking perhaps a bit hungry. He has been eating well and Alicia has been able to supply the little guy with a 100% mothers milk diet so far. Doctors say her milk is the best thing going for him and will improve his recovery time greatly! They say soon he will be off oxygen support. We are looking into the options for his next corrective heart surgery and thank everyone for your prayers. 

We send lots of love to your families. 

Grandfather Ernesto holds little Sebastian the first time

Ernesto can be classified "as good-as it gets" in terms of of earning his grandfather status. Ernesto has been instrumental in Sebastian's life from the minute he was born to the current minute he this photo was taken. I honor Ernesto today and thank him from one father to another for his care to Sebastian. Ernesto I love you like a father. Thank you 

The Agony of Waiting | Continued story after “The Longest Day”

These events took place September 14^th, 2013

I never knew the true meaning of the word “Wait” until I had to wait to see if my son would make it.

Prayers were streaming in from around the world as the doctors told us the first 12 hours were the most crucial. They said he would have to make it till 3pm then next day to be past his first step.

Little Sebastian the day after his surgeries. 

I woke early that morning after a restless 2 hours of sleep. But it seamed the prayers for strength I desperately prayed the day earlier were in effect. Strangely, a calm yet positive determination had come over me. My spirit was completely different today. “Tough little warrior I said, this guy is going to do it”. I mean, he made it through two back-to-back by-pass surgeries, and he was going to make it through his first marathon of his life; he will arrive a victor at 3pm. 

 

Alicia Comforting Sebastian

We consulted with the doctors, who much to our relief, told us his vitals were stabilized, although he is in critical condition and being administered a resparator. Ernesto and I were blown away, seriously, this little two day old warrior was showing us a lesson on perseverance and the fight for life.  He would not give up, even though every breath he took raised to a peak then sucked back with the force of a vacuum. It was agonizing seeing him fight for every breath as if it was his last, yet he kept beating, kept strong, kept moving towards his future. A future we wanted so desperately for him, and so passionately wanted to be a part of.

I wrote this midday. 

My little warrior

Your first meal you did take
Your fight for life you did make 

Proud I am of your fight
You have endured with might

But not by might found on this earth
But from above in you first birth

You have touched hearts abroad
Yet stayed here as you shod
Your spiritual armor tougher then those
Who would offend and tried to propose.
Offend they did, but won did not
As your special shield shone so hot

With God on your side they fight vain
With Gods awesome powers you sustain.

Mind you, at this point Sebastian had not had one drop of sweet milk from his mother, but rather had supped on the roadway of IV drips and medicine that pulsated through his tiny veins; his heart pounded hard.

Loved ones, friends, family, acquaintances called us to transmit their concern and bestow their prayers. The force-field was strong with this one; he received strength from above and it was showing.

3pm crept into reality. If the clock I was looking at could sound, it would have been the loudest bell. 3pm September the 14^th will forever be the most joyful day of my life, as I witnessed little Sebastian’s heart beat on, and on and on…..

 Thanks to all of you for your prayers and love for little Sebastian 

Stuffing his Face | Little Sebastian is eating so well!

Our little Sebastian is eating so well now, I have him swaddled and he is so happy and comfortable to be with his mommy and daddy. We love him so much. He still got a tough journey ahead Thank you for your continued prayers !

He's back!

After 9 days in the hospital, our little angel was allowed to come home. 

Still under oxygen and a nurses watchful eye, we now can hold our son for the first time. We thank everyone so much for the love and continued prayers. 

Longest day, Sebastian’s surgery | September 13th, 2013

Sebastian's Last photo before the Surgery

The morning broke to a series of events. Alicia, was checking out of the Metropolitano to come join us at  the “Base Camp”Ernesto and I had set up in hospital Integrate.

"Sebastian’s open heart 

surgery was to start at 11:30."

While I waited for my love Alicia to arrive, I could not help the feeling of helplessness a father feels when there a nothing he can do physically, so I prayed.

I stumbled over to the little chapel, kneelt on my knees and started to pray,  I wept bitterly as I prayed for the Lords will, and that the Lord would let my son stay with us so we can love and raise him. I prayed for strength for his loving mother Alicia, and that I would be strong enough to comfort her no mater the outcome.

Once Alicia arrived, we embraced then went up to see our little precious son before the big operation.  Alicia’s Mother and my mother were by her side and giving us comforting support and aid.

I remember writing this when he was about to be rolled into the operating room. I could hardly see out of my eyes because they were swelling with tears.  

Today We Fly

Your little body torn
Scars on you will adorn

My son I pray
with me will stay

But if be better
go back to his maker

My love will always for ever
Shadow him, On earth I guide him

But if conditions send him above
He will guide me with Gods tender love.

Your so precious to us I say
A gift of God, on this blessed day

The Time for the surgery came and went, as we watched the Little Sebastian disappear with our hearts behind the operation room doors.

Friends and Family around the world were praying for him non-stop. From as far away as New Zealand, where my mothers sister resides.

My brother James sent us this beautiful artwork, to signify the prayers and concern world-wide.

James Cox my brother's artwork signifying world wide prayer 

Hours crept by, and five hours later around 5pm we were told little Sebastian survived the surgery. Joy cannot be measured when these words hit our ears. He was out, but in critical condition. His oxygen levels had increased and his tiny heart, which had just underwent so much, was pumping more blood throughout his body.

The doctors monitored him intensely for six hours after the surgery. They were incredible, so concerned in caring for our little son, as the whole team stood by him.  We put Alicia back in the room to rest and Ernesto and I waited, waited and waited.

Doctors monitoring Sebastian after Surgery

Horror struck my mind when the doctors came out of the room with stark faces. They explained they suspect a “Clot” in the bypass tube from the surgery. Clots in the heart can lead to cardiac failure. They said they strongly recommend he goes back into the surgery room and that the operation is repeated.

The hardest choice of my life transpired in seconds. This was life or death, I asked the doctors if his chances were better in re-surgery then waiting to see if indeed he had a clot. They said “absolutely”, they recommend immediate re-surgery. I consulted with Ernesto for a second and then looked at the doctors and said, “where do I sign”, this was not a time to linger on indecision.

Prep work began instantly for the second surgery.

Little Sebastian so tiny, yet so strong and only a day old, went into his second open-heart surgery with arms raised fists clenched like he was a mini Rocky.

The second surgery was much shorter then the first, but seamed like days. Finally he came out, surrounded by doctors shuttling him into ICU. The beep of his pulse, was like something out of a fictional movie. Time seamed to pause, and I did not realize I was holding my breath as I watched him be secured.

The second surgery was a success, we took a deep breath as a doctor came out and explained it went well.  But they proceeded to tell us there was a time when we almost lost him. His heart started to decline but they brought it back to normal pulse and that he was stable.

We were so overjoyed our sweet little son was still with us. Now we waited in prayer and anticipation for our baby boy to recover.

Mother and Sebastian, after second open heart surgery

The happiest dad in the world!

The recovery was a journey in it’s self.

To be continued.

Thanks for reading this post, tomorrow I will write the next part of this story which transpired over the last several days. Once the blog gets up to date, I will write daily updates.

Please sign up to little Sebastian’s Email form above for his weekly Newsletter. Lots of love to you all and God Bless.

The Transport of an Angel | These events took place the same day of his birth.

 

Transporting Little Sebastian to the Hospital that would perform the heart surgery

Running from filling out his transport papers, I arrived in the last seconds to the Ambulance, as they closed the back door and were ready to leave Hospital Metropolitano. I asked them if I could sit in the back with him, they popped open the hatch, I jumped in and off we sped.

We raced down the streets with sirens screaming, cars honking in thick congested traffic. It was surreal as I watched the red lights of the ambulance paint abstract reflective patterns on the incubator where Little Sebastian laid. He was so peaceful, as if nestled comfortably in the hands of the Lord.

We arrived at the hospital, which was to perform the heart surgery. As Sebastian was rushed to ICU, I filled out his paperwork the best I could in my broken Spanish. Since Alicia had just had a C-section she had to stay at Metropolitano overnight, so was not able to be with him this night.

I checked him in, and soon after, my father in law Ernesto arrived. Ernesto was to play an important part in little Sebastian’s life over the next few days. Ernesto and I had decided back in the other Hospital, that Alicia’s mother and mine would stay with Alicia in Metropolitano to support her, and Ernesto and I would team up to council together in order to decided on crucial decisions for Little Sebastian’s life.

We decided to convince the hospital to give us a room, so we could set up “Base Camp”, for the immediate family, and facilitate Alicia, who would be coming the next morning. She would still in quite a bit of pain from her surgery and stress does not help with her recovery.  

Nervousness and worry was constantly trying to creep it’s way into my mind, like fly’s to a picnic, I fought them off best I could. Tears were like honey, which stuck to mine mind as I struggled to keep positive. Prayer was the natural weapon, as we knew we had to keep strong in order to make  proper rational decisions for little Sebastian’s life.

I read the verse in my bible “ He gives power to the weary and to him that hath no might he increases their strength” I asked God to give little Sebastian the strength he needed to go through a surgery that would be hard for an adult, and he was only one day old.

The doctors met us that evening and were so concerned about our little boy. They discussed in detail about every aspect of the surgery. Since Little Sebastian had Tetra of Fallot, there were several things wrong with his heart, so he would have to go through several surgeries in order to live a healthy strong life. This immediate surgery however, had the highest mortality rate out of the surgeries he would have to undertake, as he would be only 1 day old during the surgery. The crucial nature of the surgery is to increase blood flow in the pulmonary artery, which increases oxygenation levels in his tiny little body.

One of the amazing things the doctors mentioned is that aside from his heart, Sebastian was a good-sized baby, with good weight and was very health; in other words he was strong, which put him in good shape for the procedure.

It was also during this meeting that I learned my little son had to have a full invasive operation, where the chest cavity would be opened from the sternum (Center of the ribcage) in order for the doctors to get good access to his tiny little heart.  Tears streamed from my eyes as my mind immediately juxtapositions his perfect soft little body with such a dramatic operation. I prayed non stop and related a few of the facts to other members of the family. Prayer instantly started from members of the family and fiends around the world. I visited little Sebastian several times as I watched his cute little clam face and touched his soft brown hair.

The family was separated, Alicia, was going through the agonizing worry of a new mother and my heart went out to her even though I could not be with her that night.

I wrote this poem to calm my aching heart:

My sweet little son, 
my loved one


Eyes laid hold, 
never to let go.


I loved you when first I saw,

Your little face from afar.



Struggle you are as you cling to this life,

Married I am to your strife.



I feel your struggle deep in my heart,

If it would help, with my heart I would part.



I want you to know with every breath you take,
 you are mine 
In my heart only love you will find.


I think of you now,
your little body so strong.

Rest easy tonight,

Together tomorrow, we’ll take flight.

The night closed over the roller-coaster day, the following morning would be one of the most dramatic days of little Sebastian’s and our lives….surgery

Little Sebastian the night before his surgery

Thanks for reading, tomorrow I will write the next part of this story which transpired over the last several days. Once the blog gets up to date, I will write daily updates.

Please sign up to little Sebastian’s Email form above for his weekly Newsletter. Lots of love to you all and God Bless.