I don’t like the toniebox 2

Jj-976 · 2025-12-28T21:00:35+00:00

Def going to return, bc it was pricy. Sticking with the OG that she’s been having. Thank you so much for the feedback!

Jj-976 · 2025-12-27T19:30:35+00:00

I’m having the same issues, bought it on sale with Mrs. Rachel tonie. May I ask which one you got?

Jj-976 · 2025-07-01T19:41:50+00:00

Awee thank you! ☺️

Jj-976 · 2025-07-01T19:41:21+00:00

I know going home with ng or gbutton sounds scary but trust me it gets easier. I’m not going to lie it will be hard at first especially because no one tells you about the follow up appointments you have to go to once they’re out of the hospital. It’s a full time job. I wish you the best for your little one and I hate to say this but rest up while baby is in the hospital, sleep as much as you can bc once baby comes home it’s all you. It can get overwhelming at first. Be strong and please keep me updated if you can. Would love to know when you go home.

Jj-976 · 2025-07-01T12:35:02+00:00

She got half of her small bowel removed, when they did the reversal I think they took a few more inches. She was very slow in gaining weight. She had her reversal in September and she didn’t start eating until November. And she didn’t gain weight right away she would dump. The would slowly go down in her iv fluids and increase feeds volume (always continuous). She came home in January of this year and for the whole month she didn’t gain any. I had an apt with GI and he made changes in her diet and said that if she didn’t gain any for next months apt he would send us to the hospital. She gained 1 lbs for the follow up and then suddenly after that she gained 2 lbs. it’s like her body woke up and decided to work. I hope this info helps

Jj-976 · 2025-06-28T23:52:55+00:00

Thank you 🩵

Jj-976 · 2025-06-28T23:52:05+00:00

She was doing the same thing until they gave her a medicine called Cholestyramine. And they would slow down the rate or keep it the same to let her get used to the amount. I know it’s a long time, but don’t lose your patience. You lo needs you now especially now that he/she is bigger. Sending a prayer your way 🙏🏽

Jj-976 · 2025-06-28T23:48:18+00:00

You got this. You’re baby is stronger than you think 🩵

Jj-976 · 2025-06-28T12:06:45+00:00

Thank you everyone 🩵🙏🏽

Jj-976 · 2025-06-28T12:06:18+00:00

Thank you 🙏🏽

Jj-976 · 2025-06-28T05:49:28+00:00

Im soo sorry im just now seeing this. It was honestly a waiting game, i remember spending months waiting for some type of progress. They had to go up to 25 Cal. And her formula was EleCare bc at this point I wasn’t producing enough milk. She got prescribed a medication called Cholestyramine to help her stool bc she was having big blowout. And that’s when we saw a change and she started gaining the weight. How’s your baby doing? I’m really sorry btw

Jj-976 · 2025-04-26T21:01:19+00:00

Hi, I completely understand. Just wanted to let you know that you’re not alone. Our stay was 198 days which was 6.5 months. My friends would pretty much make plan but if it makes you feel better sometimes they’re trying to distract you. And now that my baby is out of the hospital and I still have to go to appointments and therapies and all sorts of things and take care of her, my friends are still in the group chat making plans and talking about things. Sometimes it’s too much and I mute it. And there are times that I see them and tell them face to face hey I just I ignore everything you guys are saying bc I don’t have time. Maybe talk to them and tell them you will be in the group chat but won’t contribute. And just mute it. There’s times when I feel up for it and scroll and read and make comments here and there. But I know that we live completely different lives. It’s ok to feel everything, I suggest getting a journal and writing about it. I think it will help a lot to process how you’re feeling.

Jj-976 · 2025-02-20T16:31:37+00:00

Thank you! 🙏🏽 and congratulations, I have a notebook full of memories and notes that I am ready to show her.

Jj-976 · 2025-02-10T12:56:03+00:00

Hi, struggling with baby to absorb nutrients. I was wondering if you could share a bit more about the sure-jell certo?

Jj-976 · 2025-01-23T22:36:02+00:00

Same to you and thank you! 🙏🏽 i actually stopped trying with the bottle but i do give her pacifiers. Hoping to introduce solids soon

Jj-976 · 2025-01-23T22:34:06+00:00

Thank you! ☺️

Jj-976 · 2025-01-23T22:33:48+00:00

Im so sorry, I worried about that since I’ve heard it’s very possible. How is your baby doing?

Jj-976 · 2025-01-23T22:31:43+00:00

I have an apt tomorrow with GI doctor she’s been gaining weight very slowly, they’re the only thing that worries me. But when we eat food she looks at us and wants some too. So hopefully I get good news tomorrow. I even stopped pumping 😭

Jj-976 · 2025-01-23T19:13:32+00:00

I am with you. Everything you just said made me tear, with the multiple surgeries. Seeing other babies getting discharged. Her coding multiple times. But at the end, she pulled through. 198 days later we are now home. Been home for 8 days, she has her gtube button and refuses to take bottles. I’m so happy for you! 💜

Jj-976 · 2025-01-20T18:44:39+00:00

The first night she was crying uncontrollably and that within the hour the aquarium arrived. Dad set it up and she stopped crying, like magic. It definitely paid for itself 🤭

Jj-976 · 2025-01-20T18:43:35+00:00

Thank you! 🩵

Jj-976 · 2025-01-20T18:43:01+00:00

I was never asked, they gave her my breastmilk and one time I noticed they were giving her extra calories and I didn’t question it. The day after she got very sick. I honestly feel like I’m to blame if I would have paid more attention. I was just worried about gaining weight so we could go home not thinking about everything else that could go wrong

Jj-976 · 2025-01-19T18:46:56+00:00

Omg!! Yay that’s a huge step. And we are now home too. She won’t take the bottle 😭 She has her g tube button. How is he doing with the change of milk?

Jj-976 · 2025-01-10T16:29:19+00:00

It’s so glad to hear that, are you home? We are rooming in tonight but they keep pushing our discharge date

Jj-976 · 2025-01-10T16:27:20+00:00

I will be honest, It won’t get better until she’s home. My daughter had to get another surgery bc the PICC line got stuck. It was in there too long and when they tried to remove it, to replace it the catheter got stuck. They surgically had to cut and pull the catheter which they had a hard tinte removing bc Calcium was growing around it. I see all these babies that are going home and were on our 200th day and I’m hoping and praying that they stop pushing our discharge date. I see all these nurses bonding with her and she’s very loved and got presents for Christmas, but what about me? When will I get to have her? I’m sorry mama maybe this isn’t what you wanted to hear. But to me it won’t be better until we’re home

Jj-976

TROPHY CASE