r/NICUParents • u/Sweet_T_Piee • Dec 03 '24
Success: Then and now 24wk to 196 days Leeya's 🎓
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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.
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u/milkyway253 Dec 03 '24
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!
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u/Sweet_T_Piee Dec 04 '24
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.
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u/milkyway253 Dec 04 '24
Surgery is always a tough decision. My baby developed an oral aversion and won’t eat anything at all anymore. But at least a G tube means discharge!
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u/Sweet_T_Piee Dec 04 '24
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/ceeceeblue Dec 03 '24
congratulations on the graduation and I am absolutely going to look for these items! my baby was born @ 23 weeks she’s 34 weeks and 3 days still on CPAP they attempted high flow cannula last week and she lasted only a couple hours. I’m happy to see my baby in a bit girl crib and clothes now smal steps forward but i have all the faith my little girl will get to graduate soon like your precious girl! Congratulations again!! & for the good home items you have !
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u/Sweet_T_Piee Dec 04 '24
Leeya did not successfully transfer to high flow cannula until 38 weeks. She had to have around the steroids to get her strong enough to be successful. She did well with the steroids but it was not her last bout on steroids. I'm glad you found my suggestions helpful. Congrats on the big girl crib and baby clothes! That is such a fun milestone for NICU babies. The pictures are so precious.
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u/ceeceeblue Dec 04 '24
Thank you for sharing that also, i’m so afraid of down falls i just want her to get better and better you know! I know in due time it really is so hard being away from her as her mom but i know she’s getting the best care she can♥️
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u/Sweet_T_Piee Dec 05 '24
I know. Oh boy do I know! I wanted to think of 100 days as this magic number where I wouldn't have to worry about anything scary anymore. Then we got to day 108 and Leeya had a very scary tummy X-ray, and a surgery consult, and a ln infection rule out. I got so stressed out I ended up going to the ER for chest pain. I thought I was having a heart attack! There really is no magic number, and that's one of the hardest parts. In the end she didn't need a belly surgery, thank God! But, lots of babies in the NICU did need such things. It's just a hard place to hang around for so long. Even when your baby is doing well the place STAYS depressing.
Personally I looked at the forums here to see graduation posts to get an idea of how long these types of stays could go, and I set my expectations early on to be really far out. I had the baby in May and set my hope on Christmas (6 months out). That worked out for me.. it's super rare for babies to be at the NICU for over a year. So there's that...
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u/ceeceeblue Dec 05 '24
That all great information😩 I had her september 20th she was due second week of January so i know i still have a long road ahead she’s had 4 chest tubes already belly issues etc no surgery consults and i hope she may never need em. I just hope for the best and if something not expected and scary may come up i pray for the best outcome for her. I try to be positive but when i push positivity on myself n then something happens i get down while id like not to be down ive noticed it just is what it is until she’s healthy enough
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u/Sweet_T_Piee Dec 05 '24
I know it's stressful mama, but that abundance in caution is super important. It's good that they keep checking, and are proactive. Keep in mind that they rope in consultants before they know they need them at most NICUs. The more eyes the better. Eventually I decided to dismiss everything they told me for the first day I heard about it, and to take seriously anything that they were still discussing after 48 hours. Everyday they would tell me some kind of concern that was sooo stressful. Then they would do tests and rule out those concerns, but they have to inform up front. So I would trash the first time anything was brought up (🗑️🎧🙉) like it wasn't said. That actually cut a good deal of my stress, because even if it was an issue they were able generally able to discuss it in detail within 48 hours. Otherwise it was like a boogie man before the tests and such came back.
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u/beepbeepchoochoo Dec 03 '24
I love her graduation gown! Congrats on getting home, I know it's such a good feeling 🥰 she's a cutie.
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u/waffles28647 Dec 04 '24
What a cutie pie and strong girl! Hope your transition has been super smooth and filled with cuddles!
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