The Tiger

 January 20, 2019

This is a letter we sent out shortly after Santiago was born. It provides a little context about his birth, his stay in the NICU, and what we knew then about his long-term status right after he was born. For now, the CaringBridge site is still active while we figure out what kind of support will be helpful as we work on his medical care.

Hi everyone,

We have wanted to give a thorough update to family and friends but haven’t had a chance. As some know from texts and social media, Cesar and I had our little boy, Santiago David Lugo, on Saturday, January 12th at 9:53 p.m. I can’t believe he is already a week old. He looks just like Cesar did as a baby—incredibly adorable. We are over the moon happy he is here and have so much gratitude given all we have been through this last week. Life certainly changed in an instant in more ways than one when he entered this world.

Mom’s Status: We are not really sure how or why, but after I delivered Santiago, I had some serious complications. I ended up with a uterine inversion that they were not able to fix in the delivery room. Therefore, about an hour after Santiago was born, they took me in for emergency surgery. This process resulted in significant blood loss in the operating room. Thanks to modern medicine, the doctors were able to stabilize me, but it was touch and go for a few hours. I was moved to the ICU after surgery and monitored closely until they felt comfortable enough to transfer me back to L&D recovery so I could be with our babe. They kept me in the hospital the week, and I was officially discharged yesterday. However, I am “rooming in” at Baylor Hospital so that I can be close to Santi as doctors continue to evaluate him this week. With this information, we will make decisions about next steps and how long I will “stay” in the hospital.

Santiago’s Short-Term Status: While I was in surgery, Cesar was able to spend quality time bonding with our little dude. Again, we are not really sure why, but when they took him to be evaluated as standard protocol, his temperature ran a little cold, and he also had minor fluctuations in his oxygen saturation. The pediatrician made the call to transfer him to the NICU early Sunday morning as a precaution. Since being there, his temperature has been fine, but his food uptake has been a little slow and oxygen has been fickle. However, he has progressed significantly, and we are hopeful they are going to be able to release him sometime this week.

While we are appreciative for the amazing care, the NICU sometimes feels like a merry-go-round that keeps on spinning, making it impossible to get off. Nonetheless, we are trusting the doctors and remembering to be grateful that we have around the clock care for our guy, giving us small windows to rest and recuperate.

Santiago’s Long-Term Status: Completely unrelated to the reasons Santiago is in the NICU, we also want to share other news regarding his long-term condition. We have been waiting on test results to fill people in because there were and are still a lot of questions, and we wanted more information from the medical community before sharing anything.

Santiago was born with bilateral anophthalmia, which means he is completely sightless without any form of eyes or optical nerves in both eyes. His lids are fused shut for now, but that will change as he receives prostheses. The numerous, numerous test results (MRIs, scopes, x-rays, sonograms, etc.) thus far reveal that this is an isolated genetic anomaly. We are still digesting the news and remain thankful that tests thus far are presenting the best-case scenario out of all the possibilities. Brain is fine. Hearing is fine. Heart, kidneys and lungs: all okay. Every step we feel relieved that his health, outside the context of his eyes, appears to check out. We will be meeting with geneticists and ocular specialists over the next few weeks and will keep people posted as we continue to collect answers.

We are terrified and excited with many other feelings that all the words in any dictionary of any language can’t touch. No. Words. Because there are no words, it is all very jumbled in our heads. The terror comes from the obvious: the unknown. How does one raise a blind child? What will his obstacles be? How can he overcome them and how do we help? … And so on. The excitement comes from those same factors. We will get to learn and grow with this little dude, letting him show us what is possible in this world. He is not going to know any differently, and our job now is to parent him the best we can and love him unconditionally.

God is good. We love Santiago so much we can’t even stand it, and Cesar and I can do hard things when we do them together. This kid is special; it’s hard to describe. Cesar says it best: “When I am around him, I get the feeling that Santiago is thinking, ‘Dad, you are just a zebra, but I am a tiger.’”

So, Cesar calls him Tiger, and I call him Twenty-Five. The latter moniker comes from the statistical odds of me going through what I did delivering him, living through it, and Santiago’s anophthalmia: one in 25 million. These odds don’t even account for having bilateral anophthalmia (both eyes). Santiago is obviously supposed to be here.

Needs and Support: We have a CaringBridge site that will contain more information over the next couple of days along with how people can help as we transition home. The site is https://www.caringbridge.org/visit/santiagodavidlugo. With time, we will create a website or blog where people can go to find out more about Santi’s latest medical updates, his progress, and our overall process. I hope that it will be a place for us and others to post resources and information as well. Right now, we are just getting through Week One and trying to make it home from the hospital.

We have already received so much love, support and encouragement from our family that it is overwhelming. The saying “It takes a village” is no longer a trite expression for us. Thank you so much for all the continued support and prayers. If we don’t respond, we are probably changing a diaper or panicking. We’ll get there!

There are more details to share—many, many “God winks.” As I continue to write, I will continue to share.

Love to all,

Leslie, Cesar, and Santiago

Post-Script: It was recently pointed out to me that if you look carefully, Santi’s full name has GOD in it (SantiaGODavid). No, that wasn’t planned, but we believe that God is quite literally in the middle of this boy’s life and has great things in store for him—as He does for us all if we just get out of the way.

“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.”—James 1:12 (Santiago: Spanish for James)