Preemie Power Story Avery was born 3.5 months early and 1,000 miles from home in July of 2015. My husband & I were traveling for my sister-in-law's wedding when my water broke at 24 weeks with no explanation. Avery made his arrival 3 days later. When you hear about the NICU "roller coaster" you have no idea how crazy of a ride it can actually be. My little warrior has battled since the day he entered this world.



Some of our biggest obstacles have been:



An open PDA—he was on the cardiac schedule twice, but was never stable enough to have the surgery. We tried one last Hail Mary and gave Avery a dose of ibuprofen which ended up closing his ductus 24 hrs before he was scheduled to have it ligated.



ROP—Avery had a three hour long laser eye surgery when he was 4 weeks old and weighed around 2 lbs. Even though blindness was prevented, Avery will most likely have no side vision.



CLD & BPD—Avery has awful lungs. We were told by multiple doctors that they were the “worst they have ever seen”. For six weeks last year Avery was maxed out on vent pressures and required 100% oxygen while his lungs got stronger.



Tracheostomy--- since Avery’s lungs are so severely damaged, it will take years for them to grow enough for him to be able to breathe without a ventilator.



Hydrocephalus- The vent pressures that Avery’s lungs require cause his body to not circulate properly. This caused fluid to build up in his ventricles in his brain. Avery now has a VP Shunt to help with drainage.



Bilateral inguinal hernia—Avery had huge hernias that were very painful for him during his first four months of life. He had surgery to repair the hernias last December, but still has a hydrocele (collection of fluid) that never reabsorbed after the surgery. He will go back to the OR later this month to finish the job.



Severe tracheobronchomalacia--- Avery has 90-100% collapse of his airway when he cries or gets upset. He was on a paralytic agent and heavy sedation from January-June just so we could properly ventilate him.



Avery also has a few cardiac issues including: Pulmonary Hypertension, a VSD, and a narrowing in his SVC.



Addition to this we’ve dealt with: countless blood infusion, 12 PICC lines, a broviac central line, 6 CODE episodes requiring compressions, a G/J Tube placement, being septic, multiple cases of tracheitis



Even with all this going on, Avery still smiles every day. He is still inpatient after 458 days, but we are working on getting him stabilized on a home ventilator, weaned off his Valium, and transitioned to home care in the next few months.