His Heart is Fixed - Against All Odds.

How to decompress from 15 days of complete stress, anxiety and exhaustion. The whole time being in the hospital is a roller coaster of ups and downs, high and lows, doctors, nurses, fellows, and so many specialties. You have to be ON the entire time you are there, making sure your baby is doing well, dealing with issues like high blood pressure, low blood pressure, pain meds, nausea meds, fevers, high heart rates, withdrawal from medications, electrolytes being off, blood CO2 levels being too high, issues with breathing, issues with IV’S and central lines, infections, and so many other things that go on when a baby as complex as Mateo is recuperating from a major open heart surgery. They like to say, “you are the parents you don’t have to worry about any of these things”, but how can we not when we understand what everything means, when things are going well and when things are not going according to plan. It is really the most intense roller coaster you could ever ride, but in this roller coaster there is no screaming, there is no getting off the ride, there is no relief because even when you are not at the hospital things are still happening, you are still worried, things are going well, and things are going bad.

It starts with the surgery day; you feel anxious but hopeful that everything will be okay. You wait and wait and wait for that phone call when the surgeon tells you that the surgery went well and that you can see your baby soon. You wait an hour and then you start calling the ICU, asking for permission to see your baby for the first time after surgery. You call over and over and the person at the front desk tells you to call back in 30 minutes, then 20 minutes, this time goes by so slow, each minute feels like an hour and of course your mind races and starts thinking of all the possible reasons why they are not letting you in. Finally, after waiting over two hours you get desperate, so you ask/demand to talk to the nurse and that you need some answers, and you need them now. Finally, the nurse comes on the phone and gives you a short explanation of what they are doing and allows you to come in. You don’t know what to expect when you walk into the room, you have been through this not once, or twice, but three times before and every time things have not been the same.

The first time, Mateo ended up on ECMO (a machine that works as your heart and lungs) essentially a bypass machine providing him with life support, he looked unrecognizable and I had an immediate panic attack. The second and third time Mateo came back with his chest open, and we could literally see his heart beating. This time, almost exactly 3 years after his first open heart surgery Mateo came back with his chest closed but “very sick” as they call it. He came back on huge amounts of medications that control your heart and your blood pressure. These medications are very intense and delicate as too much of one can make your heart rate and blood pressure spike, and too much of the other can make your heart rate and blood pressure plummet, sometimes so quickly that it becomes an emergency (both things that have happened to Mateo, so imagine my nerves). That first night is so intense and things are so delicate that I can’t even handle being in there, I wait for Daddy to send me pictures and updates and try to get some sleep to be ready for the next day. The next day I wake up early and walk to the hospital, not knowing what to expect or how I am going to react when I see my baby. Due to the covid restrictions Daddy and I can’t be in the hospital at the same time, so we pass each other like ships in the night and move onto our 12 hour shifts at the hospital with Mateo. We are so blessed to be able to stay 24/7 with Mateo. We are the only constant for him, as his nurses, and doctors change every day. So often we are the only ones who have the “story” straight of what happened from one day to another. It is difficult for doctors and nurses to give handover and communicate every little detail of what has happened in the past 12 or 24 or 48 hours.

As I walk into the room, I see Mateo laying in the bed completely paralyzed or as they like to call it “muscle relaxed”. So, he can hear me, and he is awake on the inside but completely paralyzed on the outside. At this point my only relief is knowing that he is not in any pain as he is on high levels of sedatives and opioids to make him comfortable. So, I grab his little hand and tell him how much I love him and that I will be there all day right beside him keeping him company. Then I get report from the nurse of what the plan is for the day and sit and stare at all the numbers on the monitors, heart rate, oxygen levels, blood pressure, C02 levels, respiratory rate, and Central Venus Pressure. At this point he still very critical and the best thing for him is to stay completely paralyzed and sedated so hopefully his numbers level out and get better over time. I sit there in the room beside Mateo scared that at any moment something is going to happen. They do blood work often and measure things to see how Mateo is doing internally, his liver, kidneys, immune system, electrolytes, blood oxygen and so on. These numbers are always varying sometimes getting better and sometimes getting worse. I ask the nurses to keep me posted on the numbers, so I am aware of how he is doing and if things are getting better or worse. If things are getting worse, I ask to speak with the doctor and get them to explain to me what they are doing or what they are going to do to make things better. I also get to see his x-rays and the progression of his lungs as they get better with physio, suctions, and inhalations. I am always in communication with the team, always recording things, remembering numbers, and making sure I get all the facts right so that when I update Daddy for the night shift, he can understand where Mateo is at and what the plan is to help him get better.

Both Daddy and I are in constant communication with the team, they have something called rounds where every morning and evening the team of doctors, fellows, nurse practitioners, RT’s and so on get together and go as a team to the bed of every patient and report where they are at, what has happened during their shift, and what the plan is moving forward. This is very helpful as it allows Kyle and I to meet the team that is taking over, as well as ask questions or voice concerns that we may have. Some days are good, some days are bad, some days are joyful, and some days are long and stressful. In the past we were able to each have a family member keep us company, so things were a lot better as they could be there for us emotionally as well as help us by getting food, or drinks or just allowing us to have a break and clear our heads while still knowing that Mateo had somebody beside him holding his hand. But this time we had to do it without any company, so we relied on the SickKids staff to keep us company and be there for us, from the PSA’s to the clown, to the music therapist, the child life specialist, the volunteers, our nurse friends, and doctors who have been there for us since day one. The SickKids CCU team has become like a family to us. They have been with us through the hardest times of our lives, as well as some of the happiest times of our lives. Because Mateo has a trach, and vent, and so many other complex issues he has to stay in the CCU for his entire recovery time, unlike most patients who go up to different floors after their acute phase of recovery. We actually get discharged home right from there, which for many nurses and doctors is a first.

Mateo is home now recuperating, he is on his vent 24 hours a day to provide him with the support he needs, as he recovers. Usually after a major surgery because of his trachea issues and all the anesthesia and strong medications that they give him, we find that he has more secretions than he would usually have, and it takes him a while to not need 24-hour support. Mateo’s heart has been fully repaired, which is a sentence that I only ever dreamed of saying out loud. Mateo’s journey has not been easy, at only 20 weeks we found out that his heart was different, at 25 weeks we found out that his diagnosis of Tetralogy of Fallot with Pulmonary Atresia with MAPCA’s was one of the most severe types of Tetralogy of Fallot and that he would need a five-step repair to fix his heart.

To be honest pregnancy was not easy for me. Our expected joyfulness at the 20 week ultrasound, when we learned that we were having a baby boy, was muted when we found out that our baby had a heart condition so severe I needed to be cared for by special obstetricians and a genetics team at Mount Sinai Hospital. This team also looked for any other genetic malformities in our baby boy. At around 30 weeks I had an MRI at SickKids and we found out that Mateo did not have a left ear which was emotionally overwhelming at the time. If I knew what was in store for us when he was born, that would have been the least of my worries.

I gave birth to Mateo at Mount Sinai with a planned induction, which became an emergency caesarean section. Mateo’s heart rate started to drop after 11 hours of labour, and they needed to take him out asap. Mateo surprised the doctors when he was born as they could not intubate him, and just hours after his delivery the ENT doctors had to do an emergency surgery on him after finding that he had glottic atresia where 80 percent of his airway was filled with cartilage, something no one knew about or could have seen on an ultrasound. From then on we stayed in the NICU until Mateo was 3 months old. We went up to a general pediatric floor until his first cardiac surgery. We got discharged from the hospital in May 2019, nine months after Mateo was born. He was still very sick, always vomiting, with oxygen saturations at 75% (we all saturate at 100%). We knew his heart was not yet fixed, but what we did not realized was that he was experiencing heart failure at this point. Due to the heart failure Mateo had an emergency second cardiac surgery in May of 2020, as he was needing 80 to 100% supplemental oxygen to keep up his 75% saturations. We were not in a good place then. After this surgery our cardiologists had a conversation with us regarding Mateo’s quality of life and about contacting the palliative care team at the hospital. We always remained faithful and hopeful that against all odds God would give Mateo a miracle and that he would be able to get his heart repaired and to live a long and happy life. Well, we got that miracle on November 19, 2020. A new cardiac catheterization doctor had come from the United States and was assigned to Mateo’s case. During the first cardiac catheterization that she performed on Mateo, she found our miracle - what we now call the tree of life. Below is a picture of Mateo’s lungs and the new blood flow connection that was opened (with a balloon) that day to the upper left lung. We called it the tree of life because it forms a perfect tree. This additional blood connection is what Mateo needed to have enough blood flow through his lungs to not need supplemental oxygen. On November 20th, 2020, Mateo was off oxygen for the first time in his life since he was born. This was life changing for him as he no longer needed to be attached to the wall for oxygen.

Mateo thrived that winter learning how to walk, and how to explore, something he was never able to do so freely before. Due to the miracle finding of that pulmonary blood flow connection in his lungs and the continued work and rehabilitation to that area from the doctors, for the first time in Mateo’s life the idea of having his VSD repaired (which would bring his heart as close to a “normal” heart as possible) was on the table. From November 2020 (when we got our miracle) to Feb 2021 Mateo had many catheterization’s and interventions which brought him to Feb 2, 2022, THE DAY HE WOULD HAVE HIS HEART COMPLETELY REPAIRED!

Today Mateo is sating above 95% with no need of oxygen and we expect that after this surgery Mateo will have more energy, grow tall, gain weight, and further develop as he will no longer be using all his energy to breath and make his heart work. Mateo has a bright future ahead of him and we will forever be grateful for every single person who has been part of his journey so far. Although this is not THE last surgery that Mateo will need, we remain faithful and hopeful for the years ahead. Mateo will still need another open-heart surgery in 5 to 10 years to replace his RV to PA conduit with a bigger one. As well as many rehabilitation procedures/catheterization’s for his pulmonary arteries as they continue to grow.

Mateo will continue to have his tracheostomy and need a vent overnight, as well as eat fully by g-tube. He still has many future procedures like MRI’S, Scans, ECHOS, ECG’s and so on. Congenital Heart Conditions are for life, and so is our love for Mateo which continues to grow with each passing day. We thank you so much for your love, support and for being here for us every step of the way. We love sharing Mateo’s journey with you and we will continue to do so, through the highs and lows that life throws at us. Always hopeful, always faithful, and appreciating every day as a gift and a blessing to be Mateo’s parents. We have learned so much from him., and we keep learning every day from his perseverance, joy, and determination! We love you Mateo to the moon and beyond.