We are home for 3 days now and finally got some time to write something. Little Aaron was born at 24 + 1 after my wife's sudden placenta abruption and was intubated immediately. He was on various ventilators during the first month of his life (1 week on HFO, 3 weeks on JET, and 1 week on CMV). He developed severe Pulmonary interstitial emphysema (PIE), a large PDA and dangerously low blood pressure after a week on HOF and had to be transferred to a LV 4 NICU, at which point we were told he might not make it. Turns out our LO is a fighter- the PIE was gone after two weeks on JET and the PDA also closed by itself. He had two extubation trials- the first one when he was 4 weeks old, he lasted about a week and had to be reintubated due to an infection. The second was at 5 weeks old, and this time he didn't go back. After that, our stay in NICU became mostly uneventful. He did have a NEC scare that turned out to be nothing and stage 3 ROP that needs laser surgery. He stayed on bubble cpap for almost two months and then high flow and low flow cannula. The last month we were in NICU mostly working on his feeds. He was able to finish about 85% of his feeds orally almost right away, but then had some major setbacks after an oral thrush. He was eventually able to get back slowly to almost full oral feeds, however not without lots of struggles and frustrations. We were finally able to bring him home on 7/1, after 150 days in NICU. He came home with 1/8 L oxygen- he was ok-ish with room air (sats around 90-93%), but the provider wants him to sat above 93% all the time to treat his mild pulmonary hypertension. I visit this sub almost daily during the last five months and learned a lot from other people's experience. It gave me hope and allowed me to advocate for my LO. I would like to share our own NICU experience hopefully it would be useful to others.
How it started
How it's going
How it started
How it's going
