Saturday, August 20, 2011

Messy Miracle in the Making. . . Sergio.

Since he’s the youngest and we’ve actually only had Sergio for 3 years, you’d think he would be one of the easiest Miracles to talk about, alas that’s just not the way it is.

Sergio, like Marriela, came into this world very undercooked. He was born at 24 weeks to an 18 year old mom who had made some bad choices in life. He was 1 pound 6 ounces and due to a severe lack of amniotic fluid, he had severe contractures of his arms and legs and a very misshapen head. I only know what I do, from the various nurses who had him in the NICU as well his foster parents. According to his NICU nurse (who is now our nurse who comes out weekly to do all of his lab work) Sergio was one of the most fragile preemies to survive. He coded multiple times a day and was virtually impossible to touch him without causing significant issues. He was vent dependent for months. His mother was initially a part of his life, and I think, had things been different, would have been a bigger part, but life is funny like that. Sergio was too much for her. She faded out over the weeks and months after his birth and eventually, he was placed in the care of the DSS. His foster mom to be, began visiting him daily to help him acclimate to being held. Each time a nurse tried, he’d code. They held little hope that anyone would be able to help Sergio and often pushed the state to put a DNR in his chart. Thank God, the state is not allowed to use DNR’s if the bio parents object (and Sergio’s mom refused to sign it). Maryann, the foster mom, slowly but surely was able to get Sergio out of the incubator, onto her chest and eventually, off of the vent. His nervous system was so hyper that the noise from a garbage can caused his heart rate to sky rocket and his breathing to fail. Everyone worked diligently to get Sergio to a point where he could leave the hospital one day, and that finally happened 7 months after he was born.

Sergio was severely compromised due to lungs that just refused to cooperate, thus requiring high doses of steroids and oxygen just to maintain his ability to breath. The steroids made him. . . for lack of a better definition, fat. He was so swollen from the steroids that he couldn’t move without assistance. When we met Sergio he was the length of an 8 month old, but weighed 10 pounds more than Cody, our homegrown 2 year old) who was 6 months older than him. He was huge in width. He had rolls in places I didn’t know could roll! He had at least 3 chins and well, breasts (or as the kids here call them, pecs) that I could only wish for. He was blowing out a size 6 diaper.

With the blessing of the doctors and the assistance of his foster mom, we began an aggressive and determined attempt at weaning Sergio off of his steroids. Though he didn’t get far while still in foster care, once he moved here, we went to work immediately. Though there were glitches along the way, it was amazing at how quickly Sergio began to thrive as the steroids were pulled away. His breathing improved rather than declined, he lost weight and began to roll, sit and interact in ways no one had predicted he could have done. He proved that he wasn’t blind and actually had great eyesight in his one good eye. He demonstrated that though he had huge challenges, he was determined to overcome them. We were so happy at how well he was doing. Soon he was off of his oxygen (a feat his pulmonologist had determined was virtually impossible) and the discussion about needing a trach was completely taken off the table. All was going well. Until. . .

March of 2009, Sergio caught RSV. We spent the night in the hospital, but they weren’t really doing anything for him that I couldn’t do, so we opted to go home later the next day. That night things went down hill and the next day I was in the doctors office holding a blue little boy who was struggling for every breath. Off in an ambulance we went. That admission was the start of many issues that continue to plague my baby to this day. While in the hospital, he contracted the Roto Virus, this normally harmless virus, completely shut down his stomach, we had to have a tube implanted in his intestines to bypass his stomach to feed him. He was back on steroids and oxygen was now a part of his daily life again. We worked hard to overcome these new challenges and just as we had made some head way, exactly one year later it all came crashing down again. This time he began having neurological issues, his intestines were no longer accepting the feeds and after a short time, he began having profound head pain that only morphine seemed to remedy and for only short periods of time. We were in the hospital for 3 weeks looking for elusive answers. In the end, we came home on pain killers, with no working GI tract, dependent on an IV surgically inserted for all nutrition and back on oxygen. He was so sick. He improved a bit but 6 months later a vicious cycle of infections, fevers, blood loss and contaminated central lines began to rule our lives. Sergio continues to confound the doctors and there are no real answers. It is suspected that he has a mitochondrial disorder, but what one is anyone guess.

However, Sergio is so much more than the above issues. He is fragile there is no doubt, but he lives as if there is nothing wrong. He has no issues with his issues, so we work hard to live the same way. He is who he is. Sergio can’t speak, but he sure can let you know what he wants. Sergio can only see partially with his left eye, yet he can find anything he desires. Sergio can’t eat, but that doesn’t stop him from touching and tasting every nasty thing that humans or God have created (including but not limited to, dirt, mud, bottoms of shoes, random discarded soda cans and bottles at local parks, the steps up to the slides, the screen doors or windows in virtually any house, the hospital radiator and last but not least, the cool feel of toilet water on his hands – clean or dirty is optional). Oh trust me, I know how gross that all is. . . come on, but it just goes to show, he’s not afraid to try anything once (or twice or even three times if I’m really slow getting to him!).

Sergio loves to blow kisses, can give the best high fives and knows the signs to all of the verses of wheels on the bus. He can manipulate and operate the iphone and ipad with remarkable dexterity and intelligence. He prefers to listen to Dr. Suess in Italian or French (don’t ask. . . he’s figured out how to go to options and change the language LOL). For all we know, he can think in multiple languages, but due to the area of his brain that was damaged, he can’t speak a single word. Sergio hasn’t grown since he was 18 months old and though he is 5 now, he still wears 12 – 18 month pants and 2t shirts. His favorite hangout is his swing which is really just a plan old baby swing that he fits just fine.
In the end, Sergio is a Very Messy Miracle in the Making. I pray that it is in God’s will to allow us to continue making this miracle into all that he is suppose to be.

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