https://www.compatiblewithlove.org/blog daily 0.75 2026-03-04 https://www.compatiblewithlove.org/blog/advocacy monthly 0.5 2026-01-31 https://images.squarespace-cdn.com/content/v1/66a7021d285ceb351f6862b2/005c5dd4-c4f7-4873-92ca-3d260e614144/149649.jpg Blog Posts - Good Care, Bad Care, & The Advocating Parents - Two years ago today, we saw firsthand the challenges that many children with life-limiting disorders often face. Teddy was only 6 months old when he went in for a fairly minor ENT procedure (a bronchoscopy) to get a closer look at his known airway obstruction. He had to be taken off his blood thinners for a few days beforehand. Those blood thinners were extremely important for keeping open the PDA stent he had, which provided the only path for him to receive oxygenated blood due to the way his heart was structured (he had RV-to-aorta with pulmonary atresia and VSD). The bronchoscopy revealed moderate to severe tracheomalacia. We already knew he had an airway obstruction since birth. We just didn’t know its exact location or severity. We were relieved when the procedure was done quickly and without any issues. He didn’t even need the supraglottoplasty or trimming of airway tissue that we had expected might be necessary. Teddy was taken to recovery. My husband went home to be with our daughter since everything had gone well. As Teddy began waking up, his oxygen saturation started to drop fairly quickly. The medical team said everything was fine. I immediately expressed concern that his PDA stent might be closing due to being off his blood thinners for so long. They dismissed my concerns. https://images.squarespace-cdn.com/content/v1/66a7021d285ceb351f6862b2/de64f1f0-2073-4191-b1f9-74849ad44a94/149653.jpg Blog Posts - Good Care, Bad Care, & The Advocating Parents - I was beside myself. I called my husband as he was on his way to work and told him to turn around and come to the hospital right away. We didn’t know what was going to happen next. They called in the on-call interventional cardiologist and had to do a very risky, stat procedure. Last time, they had prepared Teddy and done imaging to see exactly what he needed - but there was no time for that now. I shouted, “I love you, Teddy,” as they rolled him away for what I knew could have been the last time, hoping somehow he could hear me even while sedated. https://images.squarespace-cdn.com/content/v1/66a7021d285ceb351f6862b2/6e5bc1d2-774c-47cb-8aad-b169dd6f877a/149651.jpg Blog Posts - Good Care, Bad Care, & The Advocating Parents - And to those in the medical field: I get it. Your schooling and experience are invaluable, and patients often don’t respect your expertise, or they think they know better because of their self-taught Google-searching skills. I know firsthand how frustrating that can be from my own work in the medical field. But please, don’t disregard parents’ instincts so easily, and always push yourself to think critically. Just because one answer seems most likely, doesn’t mean it’s the only answer. Don’t be too proud to consider other options, especially when your solution isn’t working. Always be ready to keep learning and listening. https://www.compatiblewithlove.org/blog/josie monthly 0.5 2026-03-05 https://images.squarespace-cdn.com/content/v1/66a7021d285ceb351f6862b2/5a7cc7d6-648a-484d-bf2d-4d4d42e1cc1b/IMG_5144.jpeg Blog Posts - Meet Josie: Trisomy 4p https://images.squarespace-cdn.com/content/v1/66a7021d285ceb351f6862b2/81c2fbb3-bb77-4053-824c-294eca66d42c/IMG_6214.jpeg Blog Posts - Meet Josie: Trisomy 4p https://images.squarespace-cdn.com/content/v1/66a7021d285ceb351f6862b2/93f52d5c-a709-4a70-a66c-ddd522d4fc22/IMG_7730.jpeg Blog Posts - Meet Josie: Trisomy 4p https://www.compatiblewithlove.org/blog/nicu monthly 0.5 2026-01-31 https://images.squarespace-cdn.com/content/v1/66a7021d285ceb351f6862b2/55d23aa2-f9fe-4fe0-9efb-de34113d2179/4C3A745F-76A3-48B4-93CA-BCE3FDB783752023-07-17_16-26-05_428.jpeg Blog Posts - “Are we doing the right thing?” - First day in the NICU 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