TWO WEEKS IN. Or has it been two years?

February 7, 2019

Has it really been two weeks since we made it home? Here is what I have learned: Newborns want to eat. They also like to sleep, pee, and poop. Those three actions do not change when your child is sightless. Given this information, that is what we have been doing: eating, sleeping, and changing diapers with the occasional tactile playing in between. I am happy to report that physically, I am doing much better. It is hard to believe just how resilient our bodies are. I am almost back to normal; although, nothing feels “normal” anymore. I cannot believe that it has almost been a month since Santiago’s birth. It feels like he arrived last weekend and also feels as though five years have passed.

Santiago’s Overall Health, Post-NICU: We have had two pediatric follow-up appointments with Santiago’s neonatologist, and Santi is doing great. He has surpassed his birth weight, and Dr. Suterwala gave me permission to let him struggle through breastfeeding so I can get away from the vicious cycle of pump, feed, pump, feed with little time for anything else in between. Nonetheless, he still needs a nudge with feeding to continue to gain weight so pumping and bottle-feeding will continue, but hopefully not nearly as much. Thankfully, women are finally speaking up about how difficult it can be to nurse a child. For me, it has not been some glamorous, bonding experience. There has been thrashing at my breasts; there have been private lactation consultants and night nurses; there have been numerous opinions and perspectives offered by friends and family—many helpful, others judgmental. We have tried tube feeding with supplemental nutrition systems, nipple shields of different sizes and shapes, and various other interventions. Ultimately, everyone has to decide what works for their family and their child—an important parenting lesson.

Santiago is finally “off” the oxygen! YES! We continue to do spot checks throughout the day so he is not “wire free,” but it is nice to have a child who finally decided to breathe on his own. It is, after all, a requirement for living.

EYES: We had our first few appointments regarding Santiago’s eyes—or lack thereof. I expected to cry through the appointments, but that shockingly didn’t happen. I didn’t cry at all. Perhaps I am worried that once I start I won’t stop, and quite frankly, I don’t have time for that. Perhaps it is because I feel guilty for crying. This is who he is. This is how he developed. One day, when he asks me if I wanted him to be something else, I will have to answer that question. It isn’t that I haven’t cried. Sometimes, out of the blue it hits me, and I burst into tears. Other times, I can do nothing but laugh. Seriously, God. Are you kidding? If I am honest, the tears most often are linked to self-pity and frequently come when I am overwhelmed by how much work he is going to be for us. Then again, what kid isn't? Over the last four-and-a-half years, I have learned that the best gifts require hard work. And, I have never been one to shy away from that which requires hard work. Some of my sadness stems from the need to grieve the loss of our Plan A. Santiago mandates that I get on board with God’s Plan Z. Seriously, God. Are you kidding?

A good friend asked me last night if I am or was mad at God. It’s a perplexing question. Sure, I have been mad at God, and probably will be again regarding Santiago’s lack of vision. (Again, it’s more work for us.) But like sadness, I don’t have time to dwell in anger. It doesn’t change anything. And, more than being angry, I am bewildered. Given what it has taken for us to grow our family, I am utterly dumbfounded that we landed here. Again, the anger and bewilderment leave me feeling guilty and somewhat ashamed. Am I angry at God (and science for that matter) for giving me one cool kid? Am I angry at God for allowing me to carry this kid without incident and without the worry had I known he was blind? All of these emotions are coupled with extreme gratitude for my son, and consequently, all that is left for me to do is stand in awe before God.

Back to Santiago’s eyes…We met with a leading Ocularist, Randy Trawnik, and he gives me hope. He has worked with hundreds of babies and kids just like Santiago from all over the world, and he is 15 minutes from our house. Thank you, God. He will be responsible for continuously expanding Santiago’s eyelids / orbital areas using custom conformers as Santi’s tiny little face grows. Eventually, he will create Santiago’s prosthetic eyes. His work is amazing. In the beginning, Santiago will have new conformers that double in size weekly. He had his first set put in on Monday at just three weeks old. His body will decide how often and what size it needs. It is terrible to watch anyone poke and prod on your child so this piece of the puzzle is very difficult for me. Fortunately in our marriage, we divide and conquer. Cesar handles odd instruments going into our child’s eye sockets; I kill the roaches and stink bugs at home. #Fairtrade.

We also have met with an oculoplastics specialist that works with many infants and works closely with Trawnik. He will help shape eyelids, oversee the medical care, and plan for future interventions. Fortunately, it doesn’t look like Santiago will need surgery right away. We want to avoid unnecessary surgeries when he is so young because it just means scar tissue build-up and potential problems later. Some doctors will try to operate multiple times as the child grows because it gives relatively immediate aesthetic results, but we don’t think this is the best course for our little guy.

So that is it for now. I attached some photos for those interested. You might see that Santi has little pegs coming from his eyes. This gives the doctors easy access to change the conformers as needed.

We are so appreciative of the love and support we have received. People have brought countless meals, come over the walk the dogs and change the sheets. I have managed to get a few showers in because we have had help. Thank you. I would be a mess without this help.