0-1 Year Old
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.
Describe how Hand to Hold’s services are meaningful to you and future families.
It is important to constantly be abreast of upcoming conferences that will help your baby’s future.
1+ to 3 Years Old
Bryce M – The Bryce-anator
Current Age: 16 months
Weight at Birth: 1 lb. 8 oz.
Weeks Gestation: 24 weeks
Time in the NICU: 150 days
Diagnosis, complications, surgeries?
Bryce was born at home in our bathroom one short minute after my water broke and just a couple of minutes after I realized I was in labor. We gave him CPR until the emergency responders arrived and took us to Cedar Park Regional Hospital. There they spent a long time trying to intubate and stabilize Bryce, eventually stabilizing him enough to transfer him to Dell Children’s NICU where every day for weeks we had no idea if he would make it to the next. We learned that Bryce had developed stage III and IV brain bleeds which lead to hydrocephalus and many brain surgeries to pull the extra fluid from his brain. Bryce also had heart surgery at a week old to close his PDA but his biggest struggle may have been his inability to breath independently. Bryce was on a ventilator for four long months until yet another surgery was able to open his airway enough to finally get him off the ventilator for good. Bryce came home on nasal cannula oxygen and a nasal gastric tube for feeding. Bryce also developed ROP (retinopathy of prematurity) which was surgically treated to keep him from becoming blind. As a result of the surgery he is near-sighted and will need corrective eye glasses for the rest of his life.
Why should your child be recognized as “Preemie of the Year”?
In Bryce’s short life he has overcome so much adversity. He has surpassed all expectations and continues to amaze not only us but his doctors and specialists. But Bryce isn’t defined by his Cerebral Palsy, his poor eye sight or his week immune system. He is so much more than any medical condition – Bryce epitomizes strength, hope and a real zest for living life with a smile on his face.
Using three or more typical characteristics of a Super Hero, please describe your child?
Bryce’s super hero strength is demonstrated by his amazing ability to overcome adversity. And while Bryce may not be able to fly he does have superhuman hearing. Bryce’s poor eye sight keeps him from seeing people approaching but he makes up for it by hearing even the quietest parent coming to check on him when it’s night-night time. We don’t allow Bryce to carry a weapon but his extreme slobbering has been known to scare off a few strangers and land in the eye of some evil tickle monsters. Bryce laughs in the face of medical danger!
Describe how Hand to Hold’s services are meaningful to you and future families.
My mentor, Stephanie, has proved absolutely invaluable. I wonder how I ever got through the life of a micro-preemie mom before I had her to call in a panic.
3+ Years Old
Kate R. – Kate the Great
Current Age: 6 years
Weight at Birth: 3 lbs.
Weeks Gestation: 31 weeks
Time in the NICU: 3 months
Diagnosis, complications, surgeries?
Born with BPD needing a PDA. O2 sats in the 40′s. Malrotated bowel requiring surgery. Exclusively tube fed until age 3. Mild CP.
Why should your child be recognized as “Preemie of the Year”?
Kate has faced pretty much every challenge that has been thrown her way. On the night that she was born, the doctors came to us and told us that she most likely wasn’t going to make it though the night. They told us to contact our pastor to prepare for the worst. We went back into our room and waited to hear that the end was almost there. However, that never happened. Instead, Kate amazed everyone, even on that first night, by not giving up. She astounded all of the doctors and nurses, who all said they’d never seen a baby come back from where she’d been. They also told us that she’d most likely be deaf. Before we left the hospital, we were greeted with many more dire predictions: severe mental retardation, inability to walk, blindness–the list goes on and on.
Kate’s challenges have been plenty. She has done physical, feeding, and occupational therapy twice weekly since she was 6 months old. She didn’t eat anything by mouth until she was 3 and had a feeding tube until she was 4. She wears glasses for an abnormaly small left optic nerve and has mild cerebral policy due to a cyst in her brain.
Despite all of that, her progress has been nothing short of spectacular. She attends a regular first grade (with assistance in some areas) and keeps up pretty well with her twin. She does get frustrated that she can’t do everything that her sister can, and has started to understand that her body works differently from the other kids. Sometimes, she asks us why, and we just tell her it’s because she was sick when she was a baby. Of course, we wish we could make things easier for her, but we wouldn’t change a thing about Kate for all the world!
Using three or more typical characteristics of a Super Hero, please describe your child.
Kind: Kate can be the kindest child that we have. She is one of 6 children and is always willing to share. She looks out for her younger sisters and is a great helper around the house.
Strong: Recently, my partner had to do 6 weeks of therapy for a back injury and was amazed that this was something our daughter had been enduring for 5 years. Kate rarely complains about therapy and usually comes out with a smile on her face. It’s a testament to her great spirit and the wonderful therapists we’ve had.
Lyrical: I have never met a child who loves music more. When Kate was in the NICU, we had a small radio next to her and had the nurses play music for her almost constantly. We think something must have sunk in, because she loves music. She’s been able to carry a tune since she was very young, and if she hears a song–even once–she’s able to remember the words and repeat them.
What advice do you have for future NICU parents?
Ask questions and seek a second and third opinion as necessary. You are your child’s best advocate. The doctors are knowledgeable, but you are your child’s parent. If you don’t feel a doctor is answering your questions or giving you what you need, seek out one who is.
