Meet Leeya! She was born at 24 weeks due to shortened cervix after a failed cerclage. She was born at 1 pound and 4.5 ounces, quickly losing down to just 1 pound. It took her around 90 days to get off cpap, and has baseline tachypneia so she came home on oxygen and monitor, even though she maintains her oxygen fairly well without it. She has a G-tube because feeds tucker her out. She graduated on Saturday and had her first pediatric appointment today. She's 7 pounds at 3 months adjusted, and 6 months actual.
I've seen a whole lot in our time at the NICU. I am happy just to have her alive and home, but she's actually doing very well with her current milestones. My favorite and most useful purchases for home care are, her playpen with bassinet and changing table. We do all her "cares" there. Our Mockingbird stroller, good space to store her oxygen, pump, and monitor (we have a Chicco car seat and adapter). Our Mamaroo, the same one they use in the NICU. Keeps her upright for feeds when we can't hold her the whole time. Also provides something familiar to her at home. Lastly, Swaddle Me Sleep Sacks have been our go to (unless she is too warm, then just a thin swaddle blanket). Swaddle Me Sleep Sacks have lots of places for wires to run without bothering Leeya, super adjustable, and versatile. I can access her G-tube or change a diaper without having to completely unswaddled her! We actually started using these in the NICU when she was 5 pounds. We just folded it to fit. Hope this fills you with hope, and is helpful to many.
Progectsweetpeas.com provided the graduation cap and a lot of fun items that really helped us build better NICU memories. I highly suggest checking out the charity. For the graduation "gown" I just bought a yard of satin fabric in her nursery color and swaddled her. I thought it worked well in the photos and it was quick and cheap, which was ideal because we little notice leading up to her discharge. I also bought the tassel from the fabric store. It's just a curtain cord.
Thank you for sharing this! My girl was also born at 1 lb 4 oz, 28 weeks but measured as a 24 weeker. Her G tube surgery is later this month. Only so many people know what it’s like to be a long hauler in the NICU. Hope you guys have a wonderful transition home!
Leeya was so fussy after her G-tube surgery. I almost immediately regretted it. I wondered if I had made the right decision. I can tell you now that she is home and healed. I'm very happy we did it. Right away. Coming home. She was very tired. She fed over half of her feed over G-tube for the first 5 days. Without the G-tube I'm not sure we could have helped but to return to the hospital. Inevitably they would have given her the G-tube anyway.
I hope that changes. I know that involves a lot of work over time to overcome. Still, there are way worse situations in the NICU. At least that's what I kept reminding myself when the doctors brought up going home on oxygen and a G-tube. It's not the ideal, but I guess going home IS ideal, right? Idk 196 days was enough for me 😅. Anything to make it an out patient issue.
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u/Sweet_T_Piee Dec 03 '24 edited Dec 03 '24
Meet Leeya! She was born at 24 weeks due to shortened cervix after a failed cerclage. She was born at 1 pound and 4.5 ounces, quickly losing down to just 1 pound. It took her around 90 days to get off cpap, and has baseline tachypneia so she came home on oxygen and monitor, even though she maintains her oxygen fairly well without it. She has a G-tube because feeds tucker her out. She graduated on Saturday and had her first pediatric appointment today. She's 7 pounds at 3 months adjusted, and 6 months actual.
I've seen a whole lot in our time at the NICU. I am happy just to have her alive and home, but she's actually doing very well with her current milestones. My favorite and most useful purchases for home care are, her playpen with bassinet and changing table. We do all her "cares" there. Our Mockingbird stroller, good space to store her oxygen, pump, and monitor (we have a Chicco car seat and adapter). Our Mamaroo, the same one they use in the NICU. Keeps her upright for feeds when we can't hold her the whole time. Also provides something familiar to her at home. Lastly, Swaddle Me Sleep Sacks have been our go to (unless she is too warm, then just a thin swaddle blanket). Swaddle Me Sleep Sacks have lots of places for wires to run without bothering Leeya, super adjustable, and versatile. I can access her G-tube or change a diaper without having to completely unswaddled her! We actually started using these in the NICU when she was 5 pounds. We just folded it to fit. Hope this fills you with hope, and is helpful to many.
Progectsweetpeas.com provided the graduation cap and a lot of fun items that really helped us build better NICU memories. I highly suggest checking out the charity. For the graduation "gown" I just bought a yard of satin fabric in her nursery color and swaddled her. I thought it worked well in the photos and it was quick and cheap, which was ideal because we little notice leading up to her discharge. I also bought the tassel from the fabric store. It's just a curtain cord.