Just lost baby at 77 days old
On 4/13 my beautiful baby boy suddenly passed away at 77 days old (2 days before his due date). He was born on 1/26 at 28+5 due to my severe preeclampsia. He was 1lb 15 oz. He had a PDA that they were able to treat but he ended up with BPD in the process. Even with lung issues he was doing well in all other aspects and had gotten up to 7lbs. He was on Cpap 8 for a month and he was finally able to wean down to Cpap 6 on 4/10 and we were discussing the road to discharge. On 4/12 the nicu team discovered an inguineal hernia. The surgeon determined it wasn’t emergent, they scheduled him for surgery in two days, put him on antibiotics, stopped his feeds, and watched him closely in case anything changed. I visited my baby in the nicu every day and called the nurse in the evening and confirmed baby was alert and sucking on his paci. I woke up to a call in the middle of the night (later discovered I slept though a couple calls) and they said “it’s emergent you get here, we’ve been doing chest compressions for an hour”. My husband and I got there as fast as we could and they were still doing chest compressions but he was gone. They explained that they tried to intubate him because the gas in his belly related to the hernia was making it difficult to breathe. Then they tried multiple times to intubate and called the pediatric ENT doctor and he was finally able to intubate but it was too late and my baby’s heart rate never recovered. We got an autopsy so that we all could understand why he died. He had a subglottic stenosis (a rare narrowing of the airway) which made it difficult to intubate this time (even though he had been intubated before). What was surprising was his cause of death was sepsis. 7 cm of his intestines were injured from the hernia and they think he might have had a tiny perforation that wasn’t showing up on x-rays. Our baby showed no signs of infection and the nicu team did everything right. It was the perfect storm of a few issues that were just too much for my baby to handle. We’re shocked and devastated by this loss. I guess I’m looking for support. Anyone suddenly lose their baby in the nicu? Have you had another baby after losing your first? If so, how do you share the memory of them with your other children? Any other advice or support? The photo is the last photo of him alive. Such a sweet baby boy that was so loved and is deeply missed.