Mateo means "God's gift" and that is truly how we describe our baby boy. Juan Mateo Castro (we call him Mateo) was born on Sunday August 5th at 10:29pm. He was born two months early and weighed 1lb and 2oz. He was tiny but very mighty. On August 5th 2019 our family celebrated Mateo’s first year of life. And what a year it has been. After 261 days in two different NICUs, a tracheostomy, countless procedures and many fights for his life we were able to take Mateo home. Here is the story of our son’s journey and how he is still beating all the odds.
Our son Mateo was born at 30 weeks but was the size of a 23 week baby. We found out midway through the pregnancy that my placenta wasn’t providing the nutrients necessary for Mateo to grow. He was diagnosed with severe IUGR (intrauterine growth restriction). We still do not know the cause. I had been monitored by weekly Doppler ultrasounds until finally the doctors felt it was safer for Mateo to be delivered by c-section. We were terrified about the risks of our baby coming so early and being so small. Once he was 500 grams the doctors scheduled a c-section. On the night he was born I remember finishing my dinner and trying to relax before our world was about to change the following morning. Mateo quickly let us know how he does things on “Mateo time.” Suddenly 10 nurses rushed in and pushed me on my side while putting an oxygen mask on my face. Mateo had to be delivered in the following hour. And what a miracle, to hear his first cries over “Hotel California” being played by the physicians. Our newborn son had to be intubated immediately but there wasn’t a dry eye in the room.
Then we began our NICU adventure. No one can ever prepare a parent for the rollercoaster of the NICU life. The heartache of not being able to hold your baby the first few weeks ...while rejoicing in the touch of your child’s tiny hand grabbing on to your finger. Or watching helplessly as every nurse in the unit rushes to save your child’s life when they suddenly extubate themselves and change color......while being overcome with emotion the first time you get to hold your baby’s chest against yours. Or the agony you feel as a parent watching your child in pain from being poked for labs or a central line.....while also being overwhelmed by the experience of a first bath. Or going from sleeping next to your babies crib everynight....to a new hospital that doesn’t allow that since there are six babies sharing a pod. Or the exhaustion and frustration you feel as your child is spending every moment at the hospital instead of home......while realizing you have a partner by your side every step of the way.
Mateo has been diagnosed with chronic lung disease, pulmonary hypertension, liver disease, and has had issues with digestion. After 135 days at the hospital Mateo was born at we had reached a point where Mateo wasn’t comfortable. He was finally extubated but could not get past high flow. The difficult decision was made for him to get a tracheostomy and gtube. He was transported to another hospital right before Christmas. There were complications with his feeding tube but otherwise it was the right decision. We realize now how the Trach saved our son’s life. He has been able to come home, go to the park, meet his fur family, and strive outside of the hospital. We never would have guessed that we would be responsible in changing Mateo’s Trach biweekly but we are ....and feel comfortable with our training. We are also prepared for emergencies and some emergencies have occurred (which we were able to handle).
During our extended stay in the NICU we were able to meet amazing nurses, respiratory therapists, and doctors that always had Mateo’s best interests at heart and they took amazing care of him. We are forever indebted to these wonderful angels that treated our baby like he was their own. Of course there were some that didn’t. We even had a few doctors (even a specialist during my pregnancy) who gave up on Mateo and didn’t think he would make it. Or the nurses who didn’t listen to us and let us be included in the process of helping our child. But we learned to speak up and as one doctor told us “YOU Are Your Child’s Advocate!” We have definitely been scared and upset at times while Mateo has been fighting for his life but we have never given up hope and have always believed in our child.
During the passed year we had so much support from family and friends. We are so amazed by loved ones that took time to visit Mateo and loved ones from far away that sent special care packages and prayers. We also received generous support from The Care Fund Organization and Lily’s List Organization. Both organizations assist families in unique situations and we are so grateful for their generosity. The Care Fund Organization made it possible for me to stay with Mateo at the hospital every day and Lily’s List made it possible for our home to be ready for Mateo.
As I write this blog Mateo is asleep next to me in the PICU. Mateo has so much strength and he is such a happy boy. The reason we are here is because he is active and growing. We have had Mateo home for almost four months and while we have had some hospital stays and other emergencies Mateo is still thriving. He is needing less oxygen and vent settings have been lowered, his pulmonary hypertension is almost all gone, his heart is strong, and his liver has improved dramatically. He wears a DOC band but has no neurological concerns. We are currently here to switch his gjtube to a gtube. Mateo was rolling side to side and practicing physical therapy movements in his crib, causing his gjtube to come out twice this week. It did mean two ER visits but the doctors were planning on switching the tubing later this month (again, “Mateo time”). Mateo is now one step closer to starting oral feeds. We have so much to celebrate. Two weeks ago we had a huge celebration at our house for Mateo’s first year. It was a day filled with love and joy and so many loved ones were in attendance that we also decided to have our wedding that day too! We know the future is bright for our Mighty Mateo. For all the NICU moms and dads reading this......please know how strong and resilient your baby is. You can do this!!!!
Follow Mateo’s detailed journey at www.mightymateo.net