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Challenge: NICU Parenting

508 days

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I am the mother of 2 five year old miracles, Dustin and Conley. We tried for years to have children and after our first round of IVF we found out we were expecting twin boys. We were elated but our excitement was replaced with worry early on as Dustin's scans showed he had IUGR (intrauterine growth retardation). He was significantly smaller than his twin Conley. Furthermore my cervix was shortening and I was placed on strict bedrest at 20 weeks gestation. At 24 weeks I went in for an ultrasound only to find out I was 1cm dilated. I was taken to a Boston hospital where I would remain until the boys were born. Labor was stopped with medication and the boys held on for 3 more weeks. At 26 weeks 6 days they made their appearance. Conley was 2 lb 2 oz and Dustin was 1 lb 4 oz. we had the usual preemie complications - PDA, apnea, oxygen desaturation, etc. Conley's biggest struggle was feeding which kept him in the NICU past his due date. He came home after 112 days. Dustin wasn't so lucky. He started having something call bronchospasms, aka death spells. Several times he needed chest compressions. A bronchoscopy was done and the doctors discovered Dustin had tracheomalacia (a floppy airway that would collapse when he tried to breathe) as well as sunglottic stenosis (scar tissue blocking his airway likely as a result of multiple intubations). Dustin needed a trach. We were crushed. We knew it would be a long road ahead. We were hopeful though that Dustin would make progress now that we knew his diagnosis. Unfortunately that wasn't the case. Dustin continued to decline and his lungs got worse. He developed pulmonary hypertension and pulmonary vein stenosis. He was working so hard to breathe it had put a heavy strain on his heart. The doctors wanted to sedate and paralyze him so that his body would relax and not fight the ventilator. It didn't help and Dustin continued to get worse. At this point we made a tough decision to switch hospitals. It was risky to move Dustin but we felt it was his only chance. I thank God every day for helping us make that decision. I'm confident it saved his life. Dustin began to improve. We saw him smile. We had never seen him awake and comfortable before. My husband Sayer and I took turns each night visitIng with Dustin. I had to return to work by this point and we had another fragile infant at home to take care of. Finally at seven months old Dustin was stable enough to move to a rehab. He was still vent dependent and the rehab's goal was to first wean him off of all the sedating drugs, then begin to wean him from the vent at around a year old Dustin was finally breathing on his own. We took him home at exactly 13 months old - 396 days. He came home with his trach, a gtube and on oxygen 24/7. His room looked like an ICU for several years. At 2 years 10.5 months, Dustin was decannulated. In June he had surgery to close the stoma in his neck. All things considered he's pretty healthy today. Dustin is still gtube dependent. He's nonverbal, has cortical vision impairment and global delays. He is the cuddliest, sweetest five year old around. Everyone who's ever met him has fallen in love with him. Conley is a typical developing five year old. He loves Spider-Man, riding his bike, and playing outside with friends. Dustin and Conley go to separate schools but they are very close - although they definitely fight like brothers at times!! So many times I look at them and just cannot believe what they e overcome. I feel so proud and honored to be their Mama.

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