The wait is over - The day is upon us!

It all began only days after Mateo was born a cold morning in August 2018. Kyle and I woke up to a bunch of missed calls from SickKids. We were surprised to have received any calls from the hospital as you typically only get a call if something bad is happening. Right away we called them back and the doctor said, “you guys have to come here right away to sign consent, we found many holes in Mateo’s intestine and he has to go into emergency surgery now”. With tears in our eyes and fear in our hearts we ran as fast as we could to SickKids and into his room where they were prepping him for surgery. The doctor read the consent to us as fast as possible so we could sign, and Mateo could get on his way, as this was a life or death situation. When they took him away we were in shock. Mateo ended up with an Ileostomy and Mucus Fistula which means both his large and small intestines where now outside his body and he would now go “number two” in a bag. At this time we had to learn how to properly care for him, it was not easy as we had never seen anything like this before, or know that it was even possible for a human to live with their intestine outside their body.

Fast-forward to October 2018, the general surgery team thought Mateo was ready for them to operate again to reverse the previous procedure. Mateo went into surgery, we felt good about it and looked forward to Mateo not having an ostomy bag anymore and have him poop like a “typical baby”. The surgery went well and all seemed to be going according to plan, but only 3 days after his surgery he perforated, which means that the stiches that were holding the large and the small intestine together had opened inside of him, and he needed to once again go into an emergency surgery to save his life. This was heart breaking and extremely scary for us. We cried, we prayed, we pleaded to God to help Mateo survive another surgery. The surgery went well, and he came out once again with an ostomy bag. From there the surgeon decided that he would not attempt the surgery again until Mateo’s heart was better and the blood flow to the intestines was as optimal as possible.

This week we heard from the general surgery team, and they said that they had a date for Mateo’s surgery next week, October 13th, almost 3 years to the day when underwent his last bowel surgery. We have mixed feelings; on one hand we feel excited for Mateo as he won’t need to wear an ostomy bag anymore and he will be able to wear different types of clothes which he has never been able to wear due to his bag. He will also be able to go on his belly without us being scared that his bag is going to pop. One of the biggest things is that we will be able to teach him about a potty and hopefully start getting ready for school, not to mention not having kids/adults stare at him, and constantly ask what that bag is. On the other hand, we feel nervous about having him go under anesthesia after what happened during the attempted MRI procedure a couple weeks ago. As parents of a complex baby boy who needs multiple surgeries a year the mixed emotions, past trauma, and PTSD is something very real. Something that we are faced with every time we go to the hospital and hand our baby over to the nurses and doctors. Something that we struggle with in our daily lives is when the memories come rushing back. The fear and anxiety that we feel is real - as the brain does not differentiate between memories of traumatic events and the event itself. We feel all these emotions deep inside. Some people say that we are “superheroes and Super parents” but the truth is, we are just parents doing everything we can to love and protect our baby just like you. We have no special powers or thicker skin, or a magical ability to deal with difficult situations. We cry, we feel nervous, we pray, we plead, and sometimes we even feel angry at situations that happen to Mateo. The only thing that I think is different, is the way that we have chosen to deal with what we have been given. No matter the situation, we are GRATEFUL, HOPEFUL, and we are always faithful that GOD LOVES US AND THAT HE IS IN CONTROL. I wanted to share this because the reason why we put our story online is to hopefully provide people with perspective, encouragement, and maybe bring light and hope to people who are experiencing similar things in their lives.

Thank you again for our loving community who with their messages, thoughts, comments, and support give us STRENGTH, HOPE, LOVE, and celebrate with us in the good times, and PRAY, SEND GOOD VIBES, and KEEP US IN THEIR THOUGHTS during the difficult times. We will be going to SickKids on October 12th next Tuesday for a pre-op and Mateo will be the first case on the 13th. We will keep you updated on how everything goes.