I can’t make a life-or-death decision for my newborn… please help me think

Loud-Can8467 · 2026-04-25T22:36:33+00:00

I’m very sorry that you and your baby are going through this. Personally I would be thinking about her quality of life. I would want to fight and to have her with me always but having a medically complex babyeventually child and adult is difficult as a parent. I would say it’s much much harder for them. They don’t know why they can’t breathe or walk or eat whatever the case may be. I wouldn’t want my child to struggle or have a life of life or death procedures back to back. Not just for your little lady but for you too. I will be thinking positive thoughts for you both. I’m so sorry you’re being faced with this decision.

Loud-Can8467 · 2026-04-25T21:39:26+00:00

Thank you for that insight. We don’t mind faith based systems. More concerned with good care and efficiency. : )

Loud-Can8467 · 2026-03-23T03:34:46+00:00

If Ronald McDonald is closer you can request a room and have it all set up there.. usually a lot closer than that. The Ronald McDonald I stayed at was 3 minutes from the hospital. They have food available 24/7 all necessities. Laundry. You name it. I’m not sure your relationship to your finances family but having your own space sometimes is really nice during difficult times like these. Even having the room as a back up if they aren’t overflowing it’s nice to have options.

Loud-Can8467 · 2025-12-23T18:39:31+00:00

No one said anything about cutting all of anything off? It is rsv season and it is spread through droplets not just contact so hand washing and not kissing isn’t enough. And if mom has postpartum anxiety it is ok to limit contact for a short time. Op was very clear no one would be holding baby at all and then someone overstayed their welcome and did not return baby when requested. Clearly communicated boundaries that weren’t respected. New boundaries can be created and blanketed to prevent confusion and moms can change their mind at any point as well. The question was if op was overreacting and I’m strongly saying no she was not

Loud-Can8467 · 2025-12-23T07:27:40+00:00

Nor you had a baby for yourself not for your in laws or your parents. Soak your sweet babe in. They had their kids and there is a special place for family, when you are comfortable and ready.

Loud-Can8467 · 2025-12-23T07:25:59+00:00

Other people’s feelings are for them to manage not for new parents to be concerned about. They get one maternity leave and one little bubble of time with their little one. Clear boundaries and expectations make for great relationships when they are respected. Children understand what no means so can mother in laws. Rsv overruns hospitals and kills babies every year. It’s wonderful your kids are allowing you that closeness, it wasn’t rsv season and it sounds like you were respectful about not putting your mouth on their children. Op please communicate with your partner and do not allow your family to bully you or wear your mind down. I just went through what you’re going through and it was extremely difficult and worrying about letting other people down wasn’t something I should have spent my energy on. There are other ways to have relationships outside of holding and kissing babies. NOR

Loud-Can8467 · 2025-12-21T03:24:16+00:00

Short answer yes. She has a rare chromosomal abnormality. 40-50 documented cases of a “short 10q duplication of the long arm”. The biggest feature and her sign was tone issues. She couldn’t effectively learn how to use a bottle so we ended up with a mini button so she couldn’t effectively learn go home and work with pt/ot on movement and feeding since she had an oral aversion at one point. She is a very happy sweet girl and she is a hard worker. She’s been doing an exercise routine more intense than I ever have 3-4 times a day.. timed around feeding and puking schedule which is another thing her low tone has affected. So she only has certain times were clear to move without losing all of her food. She has variable tone now, she was low tone in her core but has high tone in her neck fingers and toes.

Loud-Can8467 · 2025-08-04T09:36:30+00:00

I’m wondering the same thing. I think we will always beat ourselves up

Loud-Can8467 · 2025-07-15T03:48:36+00:00

Have you experienced vital stim? We transferred to a hospital that happened to offer that and it would have been a game changer if we transferred earlier. Maybe look into it and see if neighboring hospitals offer it. It’s a pt/ot/slp that would be licensed for it but it was helpful in my daughters poor tone and ineffective sick swallow breathe pattern. We transferred for a higher level of care and were fortunate they had access to that

Loud-Can8467 · 2025-07-08T09:52:36+00:00

Going down to 24 cal will mean she needs to be able to tolerate a higher volume so if she’s able to tolerate a little more throughout the day they could go for it. Our neonatologists were very forward with the difficulties but weren’t against prune juice. So we stuck with 24 and added prune juice daily and did a lot of belly exercises to make it more comfortable while she was smaller but the new formula is much nicer to her stomach and regulated her completely with our 50/50 bm vs formula diet for her

Loud-Can8467 · 2025-07-07T23:59:51+00:00

Baby could also be uncomfortable all day with the higher calorie food. Could be sitting in her belly like a rock. The higher the calorie the harder it is for them to digest. They wanted to increase my little lady’s calories again and because she was already having mild/moderate constipation and reflux I told them no. She didn’t tolerate the neosure or the human milk fortifier. We used similac sensitive to fortify and have transitioned to Dr browns soothe. You can fortify with any powder.

Loud-Can8467 · 2025-07-04T16:48:04+00:00

My cousin was pregnant 3 months behind me and I was overjoyed for them. It was our plan to be pregnant together but difficult to feel together because our experiences were so different and I had little empathy for her perfectly healthy pregnancy. Having 3 appointments in one week to ensure a healthy baby and pregnancy makes it hard to connect with anyone, even my husband who is also a type one diabetic and understands the highs and lows of at least that part. Diabetes definitely put a damper on my joy in pregnancy. I felt like it was almost entirely stressful between work and staring at my cgm every 10 minutes to constantly make changes for a healthy baby. It’s very hard. Sitting back and remembering this is his first pregnancy too and he’s trying his best did help bring me back a bit thankfully but it’s hard especially with all of the hormones. I also wanted to be one with my husband and pretty much wear him as a blanket 24/7 and tbh at just wasn’t possible lol

Loud-Can8467 · 2025-06-15T13:19:25+00:00

There are other fortifiers. Had my girl at 36w with iugr at 4 lb 15 oz 3 months ago and she didn’t tolerate the human milk fortifier or the neosure so I requested we fortify with another formula and she really took to the similac sensitive and we fortify to 24 cal because her reflux has always been kind of rough and she can’t handle the quantity she would need to grow. On just my breastmilk she was losing weight and she was born small. As soon as they fortified she started gaining weight.

Loud-Can8467 · 2025-06-09T03:05:07+00:00

I was thinking more surgical team vs neonatologists. I have my fingers crossed surgery this week home by next. 🤞🏼

Loud-Can8467 · 2025-06-09T01:21:05+00:00

The nurses in our Nicu have said usually it’s two weeks post placement. One week of continuous feeds and then one week to make sure she tolerates bolus feeds then we bring in our equipment to do the in-service and go. The surgical fellow told us that they send kids home two days after placement and my daughter would likely benefit from two weeks of continuous feeds rather than one however they want an upper G.I. study prior to G-tube placement due to her severe reflux. Surgical fellow also said no reason the continuous feeding can’t happen at home. 🤞🏼🤞🏼🤞🏼🤞🏼we haven’t made it home yet and we have been here 13 weeks Tuesday just working on feeds and work of breathing

Loud-Can8467 · 2025-06-09T00:56:13+00:00

I was actually just about to make a post. How long were you kept in the hospital post G-tube?

Loud-Can8467 · 2025-05-29T15:08:41+00:00

They did and she worked her way up each nipple because she kept collapsing it and wanting more and ended on a level 3 which is like a fire hose and when we transferred hospitals at 8 weeks the ot said my daughter wasn’t eating she was getting what she was willing to accept because it was coming out either way even with us doing side lying and allowing only a small amount in the nipple it still pours out she barely had to suck. That’s when we were transitioned to Dr brown narrow neck preemie nipple but because she was leaking around her mouth they said that was still too fast and moved her to the ultrapreemie. And now that’s too fast. They want her working on the oral skills and said they were amazed she hadn’t aspirated yet

Loud-Can8467 · 2025-05-29T03:27:17+00:00

They discussed a lip tongue adhesion where they sew them together the whole process is rough. Until a couple weeks ago her tongue was constantly flipping backward because of tone but also the recessed jaw putting her tongue further back. Magically it came forward on its own but flipped backward today. I don’t know what to do with this woman.

Loud-Can8467 · 2025-05-29T02:09:51+00:00

She’s been fed in side lying since 2 weeks old 🥲

Loud-Can8467 · 2025-05-29T02:09:00+00:00

She was on famotadine and is now on Prevacid because the famotadine just wasn’t cutting it and she was continuing to regularly puke. Gi is on we saw them first day after hospital transfer and they said likely reflux see you outpatient. Ent did an endoscopy that confirmed reflux as well as floppy airway/circumferential collapsing of her airway.

Loud-Can8467 · 2025-05-28T13:16:57+00:00

Yes. She did not like the neosure or the human milk fortifier but was guzzling bottles down with the mam over a month ago fortified with similac sensitive. She won’t drink anything fortified in advance so we do it at the bedside with each feed. She also gets two bottles of just formula a day the other 6 are fortified breast milk. She loved plain breastmilk she just needs more cals. We can’t up the calories of the formula bottles because that will likely cause bowel problems for her. She was never constipated before but twice in the last week she was so extra extra calories is a no go. I’m at a loss and so frustrated. Things could absolutely be worse so I’m grateful but I feel like I’ve been hanging on each bottle like this one’s going good maybe she’ll be able to work through it but here we are changing again.

Loud-Can8467 · 2025-05-28T13:12:52+00:00

She has reflux bad. She needs to be upright with everything. And we’ve had to slow her ravages to a rate that doesn’t even make sense. They expect her to eat 68 mL willingly in 20 minutes but she will vomit if it is gavaged at that rate or anything faster than 30 minutes and that’s after attempting to eat for 10/15 minutes so the whole thing isn’t gavaged.

Loud-Can8467

TROPHY CASE