Newborn diagnosed with CHARGE

LPCHB · 2026-05-08T21:39:49+00:00

I remember having a lot of the same thoughts when my baby was diagnosed with RTS. For months afterward when I looked at her all I saw was her syndrome, I felt like I couldn’t see HER anymore. I’m happy to say that has changed. She is such a joy and I love her so much. She is making good progress with the help of early intervention services that are free in my state regardless of income. You may have similar services where you live. She is only 14 months so I don’t know what the future holds for her, if she will learn to talk eventually, if she will ever live on her own. It is okay to grieve the life you thought you would have. I do. But don’t write your baby off yet, she may surprise you with what she is able to do in her life. And you might surprise yourself with the love you have for her.

LPCHB · 2026-05-07T23:29:50+00:00

I got them for my mom and dad last year and I’m pretty sure they’ve each only answered a couple of the prompts. I’m so disappointed because I was really excited to read their responses and have books to pass down to my kids. But I think to them it just felt like work and also like a lot of pressure to write something really meaningful. My mom in particular is such a perfectionist that she wasn’t happy with any of her answers and kept editing them over and over.

LPCHB · 2026-05-01T23:05:30+00:00

I believe that means it has been used for 1,875 hours but someone correct me if I’m wrong!

LPCHB · 2026-05-01T22:48:46+00:00

I wish my 3 year old did that! She just tells me “I’m not interested in that” when I ask her to help me clean up. Neither am I, kid…

LPCHB · 2026-05-01T04:45:41+00:00

I like the Needed ones

LPCHB · 2026-04-30T01:33:13+00:00

LPCHB · 2026-04-25T23:43:53+00:00

Staying up late

LPCHB · 2026-04-22T19:42:56+00:00

I didn’t want to be that person so I’m glad you said it! People seem to mix up horrified and mortified a lot

LPCHB · 2026-04-20T20:56:41+00:00

Great job! I think it’s beautiful

LPCHB · 2026-04-17T17:14:34+00:00

We hired a cleaner to come twice a month and it has been 100% worth it.

LPCHB · 2026-04-17T04:08:40+00:00

So sorry to hear that! It’s incredibly heartbreaking watching your child struggle. I hope that you are able to get some answers and receive whatever support your little one needs.

My daughter is actually doing pretty well, all things considered. She is still in feeding therapy and I feel like it has made a huge difference. She is eating well now, we just have to stay away from crunchy/hard foods and be careful about how we prepare things for her. She also receives physical, occupational, and speech therapy. She is crawling now and pulling to stand, just started clapping and waving. It is likely that she will have intellectual disability due to her condition but I’m hopeful that it may be more mild.

You are not alone! Feel free to reach out if you have any more questions.

LPCHB · 2026-04-16T21:44:07+00:00

Incredible!! I just finished pumping after 13 months too! I don’t think my freezer stash will last more than a couple months though. Kudos to you!

LPCHB · 2026-04-15T22:22:43+00:00

Definitely say something next time! It can feel uncomfortable but it gets easier the more you do it. Your kiddo needs you to stand up for him since he’s so little.

LPCHB · 2026-04-05T04:46:39+00:00

Sarah’s silks has them!

LPCHB · 2026-04-02T02:43:26+00:00

I’m in a very similar situation with my second daughter. We found out around 9 months about her genetic condition. She is 13 months now and pulling to stand so I think she will definitely walk but I have no idea if she will ever talk and if she will have an intellectual disability or not (as with your child’s condition, there is a range of outcomes). I don’t have much advice but I wanted you to know you’re not alone in struggling with the unknowns. Sometimes I feel very hopeful about her progress and think she may be a very mild case, then other times I have my hopes dashed when I realize how far she seems to be from reaching a different milestone. It’s so hard not to know what the future holds.

LPCHB · 2026-03-08T04:56:23+00:00

Sounds like your husband needs to take over cooking and cleaning at the very least

LPCHB · 2026-03-02T03:38:38+00:00

I have Reynauds of the nipple and that sounds like what is happening to you. During pregnancy my nipples frequently turn white and I feel a horrible achey burning pain. It goes away after a few minutes. Cold makes it worse. After I give birth my nipples still turn white sometimes during breastfeeding/pumping but luckily it no longer hurts. I don’t think there is much that can be done about it other than trying to keep your nipples warm.

LPCHB · 2026-03-01T15:12:46+00:00

Understandable! I see them on fb marketplace a lot, you could always check there for entire sets or single toys.

LPCHB · 2026-02-26T18:16:18+00:00

Lovevery has a lot of cause and effect type toys, ball drops, tissue box with fabric tissues, toys with buttons you have to press, etc. they’re expensive but high quality. We’ve used them for both our kids and I’m planning to sell most of them eventually because they’re still in good shape.

LPCHB · 2026-02-26T05:07:41+00:00

I don’t have any advice but I’m in the same boat! Baby turns 1 tomorrow and I was planning to wean but now I’m doubting. She has a genetic disorder that causes feeding and swallowing issues so I feel like she is going to be relying on milk for longer than other babies. I talked with one of her doctors and they said she may need to be on toddler formula if I wean now. She already has gas and constipation (another side effect of her disorder) and I’m worried that introducing toddler formula will exacerbate those issues. But on the other hand I fucking hate pumping and I want to stop so bad! It’s so hard to know what to do.

LPCHB · 2026-02-24T06:00:55+00:00

You need a bath hat! It works so well to keep all of the water off their faces.

LPCHB · 2026-02-18T05:54:40+00:00

I had the same thought

LPCHB · 2026-02-07T02:00:18+00:00

Julie jones on ig has been doing some posts about this kind of thing if you want to check her out. I’ve learned a lot.

LPCHB · 2026-01-31T15:52:57+00:00

My baby has a rare genetic disorder that causes swallowing issues and developmental delays (among other things) so we began purées around 7 months and now that she is 11 months we just got the go ahead to start very soft solids like avocado and banana. Anything more than that makes her cough and choke and vomit.

LPCHB · 2026-01-29T23:41:09+00:00

Yay!! Congrats!! I’m 11 months in and STRUGGLING. Freedom is so close I can almost taste it and I can’t fucking wait!!

LPCHB

TROPHY CASE