Riding the Rollercoaster

Almost three weeks into our adventure with our little one Milagros, I figured I would reflect on how our life has changed and how we are coping. Let start with: Its not easy. It in fact does feel like we are riding a rollercoaster. As Mili has good days and setbacks we go through a whole gamut of feelings. But, as I reflect- the whole time I feel like I am holding my breath.

We are learning what triggers changes, mostly for the worst for her and it seems her situation can turn on a dime. The doctors are very quick to tell us to brace for the worst, which while good advice- makes my stomach turn over every time I hear it. Then, she stabilizes due mostly to the great care she is receiving and my stomach touches down again. She just has so many hurdles to leap. Some she has not been able to overcome yet, and some she seems to leap- just for her to reset and have to leap again. And since we are discovering the path as we walk it, it seems the finish line is a million miles away.

Lets talk about the many machines she is connected to. Well, less about the wires and machines and more about the reporting screens. Being a techie, slightly ADD and always scared of what the blinking lights and alarm beeps might be saying- watching the screens is almost a necessity. Its a drug. I have to watch. I usually look at the numbers before I look at Mili when I arrive at the NICU. Its something I try not to do, but I cant help myself. Now, I have to say that if you have never been to the NICU where Mili is, at times there is a cocophony of beeps and blinking lights. All of them dont come from the machines around Mili, they come from the 25 other babies that are there with her. Out of a need to understand whats happening to mini Mili, I have learned to read most of the screens and what they mean. I can look for a minute and know how much oxygen she is getting, how fast her heart is beating, if her blood pressure is high or low, how much oxygen is in her blood, and sometimes, if they have left the right screen up- the amount of pressure they are using to force her little lungs open. All of this info can be good, empowering even. But it can also overload you and make you feel worried when you shouldnt. So… its good and bad and all part of riding the coaster. I wish I had a better way to sum that up. Unfortunately. I. Dont.

This is not to say that she is doing badly. She’s not. She really is living up to her name. When I think of how early she started this journey I am amazed. We were barely into our 23rd week when Milagros was born. Every time I read a pamphlet or book on preemie babies, they all talk about a preme beginning at week 24. She was more than at the edge, she was beyond it. She is doing a great job of fighting. Part of her tenacious personality can also be bad, and make her rebel when the nurses and doctors touch her too much or try to push her to do something before she’s ready. But her bad attitute I can deal with later. For now I just tell her to “fight Mili, fight!”

Okay, tried to go over the good in the last paragraph. Lets try that again, maybe I will do a better job.

1. She is handling Mama’s milk exceptionally well. She poops a lot! I am very happy to say that I have changed many a diaper. I love that, gives me a chance to get some time with my little one.
2. Also, she opened both eyes in the last 5 days. Today she was looking at me and Geli while we touched and spoke softly to her. Talk about cool. We have been looking longingly at her through the plastic for 3 weeks, just sitting with her. She doesn’t know we are there, probably cant hear us talk through her bubble. It seemed that she could recognize Geli’s voice when the top was up. Now I’m sure. When Geli spoke to her today, Mili around for her- following the sound of her voice. Mili was kind of agitated that we were taking her temperture, changing her diaper, etc. But when me and Geli were touching her feet and head and speaking very softly to her, her oxygen saturation and blood pressure both normalized. Wow, that was cool.

Its probably pretty obvious that we cannot wait until we can hold her in our arms. Im hoping that day is soon. Enough for now, I will try to write another post in a few days.