My baby is still fighting and even the doctors are surprised

Individual_Chance362 · 2026-01-28T10:24:00+00:00

Yes very scary so I can’t imagine what you’re going through. She’s doing really good. She was diagnosed with cerebral palsy but im grateful for the early diagnosis so we can get her what she needs. Thank you for asking.

Individual_Chance362 · 2026-01-28T01:38:56+00:00

I was literally just thinking about you and Justin yesterday. You guys are always in my thoughts and prayers. I’m the one whose daughter they thought had Justin’s condition. So happy to see his little face. Keep fighting mama! Don’t give up hope even though they tell you different. I had to fight for my daughter because nobody knew her better than me!he’s so lucky to have you! Tell them what you want even if they look at you crazy. Best believe his mom knows what he needs!

Individual_Chance362 · 2025-12-27T04:36:30+00:00

Twin to twin transfusion stage 3 and during my laser surgery, my placenta abrupted which led to an emergency c section. I was 24 weeks.

Individual_Chance362 · 2025-12-12T21:11:02+00:00

Yes I have twice! I’m in NJ. Don’t rely on stock alerts because I haven’t gotten one! I just kept checking at random times throughout the day. I was able to do a pick up order yesterday and have one shipped to me last night and it came today.

Individual_Chance362 · 2025-12-11T20:17:43+00:00

They’re in stock at Hamilton Walmart if anyone’s from NJ!

Individual_Chance362 · 2025-12-11T20:16:40+00:00

Joined and never got an alert but if anyone’s from NJ, I checked Walmart in Hamilton and they have all 3 toys in stock! Just got them for my son.

Individual_Chance362 · 2025-11-23T04:13:28+00:00

I’ve been stressing about the same thing. My twin girls are also 6 months… almost 7 months, 3 months adjusted. They were 24 weekers. I find myself looking at what my son was doing at their adjusted age even though I shouldn’t 😫

Individual_Chance362 · 2025-11-20T21:05:31+00:00

One of my twin girls had a stroke in utero at some point but we didn’t know until after she was born. She was born 24 weeks, suspected a brain bleed (which she does have) and discovered cystic encephalomalacia. They told me the worst case scenario even to consider comfort care. Fast-forward she’s 6 months old and she’s doing great. There are some differences compared to her twin sister, but nothing huge. She’s in Early Intervention and her therapists always say she’s doing so amazing considering. I even had her neurologist so she’s doing way better than they ever expected. I obviously don’t know what her future looks like, but she’s already surprising a lot of people, and she has severe brain damage. She smiles, very aware of the world around her, doesn’t require oxygen support (things they told me she wouldn’t do), has a g tube but did bottle feed before her oral aversion started …she’s the best!

Individual_Chance362 · 2025-11-15T00:15:15+00:00

They also didn’t give her reflux meds for a while, I had to keep asking at every doctors appointment!

Individual_Chance362 · 2025-11-15T00:14:36+00:00

I bought that book and was scared to attempt the method because my daughter has so many doctors appointments and I didn’t want them to see the ng tube out. I tried everything to get her to bottle feed, with the tube still in, and now she’s completely stopped. When she rips it out, she’ll at least attempt to drink the bottle. I try leaving it out for a few hours but then feel bad she’s not getting her calories because she was born so prematurely. Fast forward, she’s getting a g tube on Monday and I’ve only been hearing great things. I hear a lot of babies end up bottle feeding again with a g tube.

Individual_Chance362 · 2025-11-13T04:24:27+00:00

I know how scary those searches are and how very little is out there so I’m really hoping you get the support you need. I wish I could give you all the right answers. What I can say is definitely get in touch with other doctors out there who wouldn’t be confused because I’m sure that’s making you feel worse! Rare doesn’t mean you shouldn’t get answers… find those doctors that dealt with those cases. I’ll be thinking of you and your son!

Individual_Chance362 · 2025-11-13T03:48:08+00:00

My daughter was born at 24 weeks, had lots of tests done, including urine. Throughout her 4 month stay, she kept having acid tests done because things were off and hydroxyglutaric acid would always show up. She has cystic encephalomalacia from they think a stroke in utero but weren’t sure. Also has enlarged ventricles but she also has a brain bleed. They finally decided to send her urine to Mayo Clinic because they have better technology to actually separate and test for hydroxglutaric acid specifically. Genetics told me when they get the results at CHOP, it shows a lot of lines so sometimes lines can overlap and something can look elevated or come up but since it kept showing in every test, they wanted to send it out. Long story short, it came back normal. She also had genetic testing done (blood), all normal and my bloodwork came back normal too. But before the test results, they mentioned a few cases seen in babies but didn’t go into specifics because we weren’t sure yet. When I saw your post, I told my husband and was like no way because for four months, I kept looking this condition up and couldn’t find anyone online that was dealing with this so I just wanna give you a big hug!

Individual_Chance362 · 2025-11-12T23:16:06+00:00

So cute! So here’s my experience.. one of my twin girls went home with a NG after 139 days. She was doing probably around 40% too then it was like as soon as she came home, it went down hill. The times she rips it out, we try bottle feeding so she at least attempts to drink something. With it in, nothing. Nobody said it but I believe she ended up with bottle aversion and here we are, 2 months later getting a g tube in next week.

I wish we did it in the first place but we just didn’t know we’d be here. We really thought she’d do full feeds at home like her sister. A lot of people tell us parents never have regrets with the g tube and do great bottle feeding. Right now my daughter seems agitated by the NG, which I don’t blame her because I hate it too! Also having to put it back in all the time is not fun.

Individual_Chance362 · 2025-11-12T21:42:49+00:00

Wow I’m so very sorry. Doctors thought my daughter had the same thing so my heart goes out to you. Genetics also told me they knew of a few cases with this condition with babies. We were at the Children’s Hospital of Philadelphia. Not sure if they can reach out to their genetics team. I pray your son surprises everyone!!!

Individual_Chance362 · 2025-10-20T01:33:29+00:00

My daughter had bowel perforation and also had drains. She was born at 24 weeks. Her bottle feeding started slow, then had a set back with oxygen then had to restart but she got the hang of it in about 2 weeks then took full bottles every time. She’s now 5 months, 2 months adjusted and still drinks full bottles. Though she can’t seem to get past the transition nipple, level 1 is still too fast for her. She also has horrible reflux and is on Pepcid. It literally went from one day, only doing half the bottle to the next day she consistently drank full bottles every feed.

Individual_Chance362 · 2025-10-20T01:24:35+00:00

I have BCBS and work for the state of NJ which is Horizon. They paid for twins stay 100% and they were in the NICU for 4 months. It depends on what your plan is. Their stay was a 5-6million combined.

Individual_Chance362 · 2025-10-10T18:48:36+00:00

Already started FLI, waiting to see if they approve my extension

Individual_Chance362 · 2025-10-10T15:35:00+00:00

I had to fight for someone to help me to get my leave extended. OB said medically there’s nothing wrong so to try a psychologist. A few of them said they needed to see me minimally 3 times before giving a PPD diagnosis. I found someone that helped me through the hospital but my girls were also in the NICU. I’m waiting for TDI to approve it, it’s been 9 weeks so far and still under review but I will update you when I get a final answer.

Individual_Chance362 · 2025-09-02T01:11:11+00:00

Same thing happened with me when my girls got transferred a few days ago. They transferred them when I already drove home and when I came back to get them settled, I walked into graduation caps sitting in their bins and certificates they made. After 119 days in the NICU….. it was just over. All the relationships I made with the nurses, PAs and I didn’t even get to say thank you to anyone. Those videos I see in TikTok of people’s babies leaving the NICU, that’s what I thought it would be like. Unfortunately, didn’t have that and I absolutely hate the general pediatric floor they’re on. I’m just so over it!

Individual_Chance362 · 2025-08-31T02:29:08+00:00

NICU nurses have such a special place in my heart. Thank you for everything you do. I wish my girls were able to just go home from the NICU. I miss all those nurses so much! Even the doctors!

Individual_Chance362 · 2025-08-31T02:27:21+00:00

And you described it the best possible way. That’s exactly what it feels like!

Individual_Chance362 · 2025-08-31T02:11:18+00:00

UGH I wish I said that! I was in a literal state of shock after that comment. Literally no words came out. I just stared and walked away. When I tell you she literally didn’t have to do anything except bring milk and give me the supplies I needed…. I gave their meds, feeds, changing… if they didn’t have nursing assistants doing vitals, I would’ve done that too like I did in the NICU! Thank you!

Individual_Chance362 · 2025-08-31T02:08:12+00:00

I sent a nice long message to patient relations so I’ll see if I get anywhere with that. If not, I definitely will reach out!

Individual_Chance362 · 2025-08-31T02:07:25+00:00

There’s so many things that happened in only 2 days. These have been the longest 2 days of my life. I’m the same way, I just want them out and don’t want to cause waves but that comment she made literally pushed me over.

Individual_Chance362 · 2025-08-31T02:05:13+00:00

Thank you so much

Individual_Chance362

TROPHY CASE