Wednesday, November 7, 2012

Who Inspires Me

I am humbled that several folks have told me they are inspired by all that I have gone through recently to bring our family home. There were so many times I felt tired and weak and like I couldn't do it anymore, but one of the things that kept me going were the people that inspired me. So many others have endured far more than we have, and despite Tara's recent hospitalization overall we have been very lucky to avoid many common preemie complications.

I, like so many in the online surrogacy community, am in awe of Bernadette. She is the author of the Rasta Less Traveled blog. She also had boy/girl twins in India at a different clinic from ours in Delhi. They were premature, but not nearly as as much as mine. However, her son was not born healthy. He is medically complex, and it wasn't until her five month exile in India was over and he was medivaced to the US that he finally got a solid diagnosis. Chances are he will not live past the age of three, and she has recently been told he may not even live three more months. Despite the fact that he has chronic complications she is still fighting hard to find a way to bring him home with his sister. She is an amazing woman, and also an amazing writer. On my worst days I would always go read her blog and be uplifted, and her most recent posts have brought me to tears.

The other night I found the website for the Hand to Hold organization and their yearly Preemie Power contest. People nominate their preemies for the award, giving them superhero names and telling the story of of their super powers. I've gone into the archives and read them all, and included my favorite below along with the link to their website. Thundering Thurston was born at 27 weeks just like my babies were but 12 oz smaller than my daughter, so it goes to show you just how lucky we were.

Thurston M. – Thundering Thurston
Current Age: 8 months
Weight at Birth: 1lb.4oz.
Weeks Gestation: 27 weeks
Time in the NICU: 230 days and counting

Diagnosis, complications, surgeries?
IUGR, BPD, CLD, PDA, High Blood Pressure, Pulmonary hypertension, over 20 blood transfusions, multiple Nitric Oxide infusions, on the oscillator for first 4 weeks, on the cpap for a very long 13 weeks, on cannula for 4 weeks, aspirated(we think) and almost died again, back on oscillator for 2 weeks, cpap for 1 week and back on high flow nasal cannula, switched hospitals, gtube/fundo surgery, possible trach surgery, possible hernia surgery, ROP stage 2 zone 2 resolved, 4 rounds of steroids, on chronic diuretics, inhalers, and multiple other medications etc.

Why should your child be recognized as “Preemie of the Year”?
Thurston has been the most extraordinary little superhero ever and the best teacher anyone could ever ask for. He has taught me and my family numerous lessons, and in true superhero fashion, has shape-shifted all of us, warming and changing our hearts forever.
When we were told that Thurston was not going to even make it out of the womb, they sent us home for him to pass away quietly inside me. To try and cope with such a great and sorrowful loss, I kept thinking about how lucky I was to have known him even that much, to have felt his little kicks, to feel him inside me just even for a few more days. He taught me to carpe diem, or seize the day, and to enjoy what time I did have with him, however short that was to be.
When he hung on and was born, he taught me about patience. He taught me that things do not happen overnight. I really wanted him to come home around his due date and when that didn’t happen, I became frustrated. But after he continued on the roller coaster journey and went through some more harrowing dips, I realized how much I had to be patient, as with patience comes strength, calmness and happiness and that is what he needed his mother to be.
He taught me great humility. On this journey it is very easy to get caught up in thinking, “Why me, why my family, why my pregnancy, why my son?” As you begin to meet others on this journey, you realize there are so many others going through the same thing, and still others that are dealing with far worse tragedies than your own. Then the “Why Me’s” slowly turn into the. “Why them?” Thurston made me look outside of myself and my own problems and realize just how lucky we have been on this journey and has encouraged me to reach out to others who are hurting.
Most importantly, Thurston has taught me to hope more than I ever thought I could. In the beginning I believed so much of the worst case scenarios that were thrown my way. Just when I thought he was out of the woods, Thurston was again knocking on deaths door and instead of believing the worst would happen I clung onto the most amazing and overwhelming feeling of hope, realizing not only had he proven time and time again that he has the ability to overcome obstacle after obstacle, but that he deserved a mother that was as strong, as tenacious, as stubborn, as persistent, and as brave as her son had grown to be.

Using three or more typical characteristics of a Super Hero, please describe your child.
Adopting his secret Identity in the day, Glowie(pictured above), the great and powerful Thundering Thurston fights crime and grime at night to keep Nicutropolis safe from its evil enemies. He and his sidekick Mini-glow(also pictured above), take to the streets in search of virulent villains. So far he has defeated his arch enemies Rhett N. Opothy when Thunder zapped him with his laser eyes, and that dastardly Petey A. who didn’t stand a chance against Thunder’s powerful partner Dr. Mavericks poisonous concoction. But his most evil and dreadful nemesis, that ever chronic Lun D.Zeez has still yet to fall prey to Thundering Thurston’s superhero strength. He has used every weapon in his arsenal, the all powerful oscillator machine, the cpap snorkel of death, and the ever auspicious nasal cannula tube of life, and still Lun escapes time and time again. Thunder has thrown poisonous lightening daggers at his enemy filled with all sorts of concoctions, but to no avail, that Lun persists like a petulant plague. His last resort, like Popeye with his spinach, is to use his secret port, the gtuberon, and fill his belly with a magical potion of milk and great fortifiers pumping his body full of the strength greater than 100 steam engines combined. Thurston’s bravery is unmatched and has faced death nurmerous times especially at the hands of Lun and his gang yet he continues to fight day and night with great tenacity, vowing he will never leave Nicutropolis until Lun is finally defeated and the city is safe once again.

What advice do you have for future NICU parents?
Get a lot of rest if you can. Don’t be afraid to ask others around you for help. Keep your hopes up.

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