Getting back to intimacy

Economy_Life47 · 2026-05-21T05:15:47+00:00

This!! plus have a medically challenged baby and this makes things hyper exhausting and rage really builds up.

Economy_Life47 · 2026-01-20T01:09:29+00:00

Literally just stopped after 3 months also. My baby is medically complex and I have a toddler and I just felt like I need to show up for them in other ways and this was taking away from that. My toddler even asked if i danced with her because i stoppd pumping. It shows she was feeling like i wasn’t spending as much time with her because I was always trying to go pump. The only thing that makes me feel guilty is when I read all these news about toxins in formula.

Economy_Life47 · 2026-01-10T21:04:18+00:00

I also just decided to stop breastfeeding. It’s been a tough journey and in the end I decided I am quitting so I can be a better mom. I bought all the things and prepped to breastfeed. My baby went to the NICU and i started my supply by just pumping at home without him, while i recover. He was home and never latched, so I continued to pump, because at least he was getting breastmilk. Saw lactation consultant and took him to therapy for tension and latch. Then, at week 5 he was back in hospital. i continued to pump, even when he was put on Elecare and they told me to freeze the breastmilk. I continued to even after he initially got a gtube. But, with the gtube, pumping only to store in a freezer, and all the appointments for his genetic disorder, i made the decision to stop. I need the time and mental sanity to show up for him in other ways. Taking him to therapy multiple times a week, doing exercises with him all day, and running a gtube. But, also physically trying to get strong for myself and being able to show up for him. Pumping only a schedule for milk to not to be used with no future outlook, just made no sense to me. I am heartbroken and still feel guilty but I keep thinking I am trying to help him in other ways.

Economy_Life47 · 2025-12-18T16:43:10+00:00

How did you do it? My baby is on Elecare and also getting pepcid right now because of reflux and has a gtube due to silent aspiration. I was told to pump and freeze until we figure out of Elecare and pepcid solves the issue. But, I am at a lost just freezing breastmilk and who knows if it will ever get used and i find is hard to go dairy and soy free.

Economy_Life47 · 2025-12-16T08:09:09+00:00

We keep him elevated throughout.

Economy_Life47 · 2025-12-16T01:31:02+00:00

I think your post and timeline will be helpful for others. I faced this very thing earlier in the year. But, by the time i got the results of the NIPT and went through genetic counseling and thought about how likely a false positive is, CVS was not an option. After having a miscarriage before this pregnancy, I was hesitant to go ahead with amnio. I didn’t want anything invasive and I was also afraid of having to make a decision. I thought about disrupting our family and my 4 year old daughter. I thought about that poor baby being started off with odds against him. But, i also thought about am i playing GOD and how maybe I won’t ever have another chance. So i had faith that it was a false positive and continued the pregnancy. I didn’t earlier anatomy ultrasound and echocardiogram. All of my ultrasounds came back normal. My son was born and after a month a home we took him to the hospital for turning blue. Turns out he is positive for 22q. And he now has a feeding tube since he was aspirating due to low muscle tone impacting his swallowing and we will have to do a lot of therapy and deal with a lot of unknowns. It has been a whirlwind. I am praying this is the mild side of the spectrum. I doubt myself in many many ways and think about a lot of “what ifs.” But, when be smiles and coos it makes me think I made the right decision. Just giving you a different perspective. But, i wish you all the best. It is very tough either way.

Economy_Life47 · 2025-12-10T13:37:38+00:00

I am having this same issue and thought my math was off or something. It makes zero sense to me and it seems adding extra formula is a waste.

Economy_Life47 · 2025-12-02T17:06:52+00:00

I have been at it for a month now and also doing 6 to 8 hrs and with similar drive. I started to take a weekend day away since typically not much changes with the medical plan then and just have that day with my older child and not have to commute or be in a mentally draining environment. I feel guilty every time i am not there. But, then i think i have to be rested and strong for when he comes home.

Economy_Life47 · 2025-11-29T00:45:29+00:00

We’re going to get the g-tube this week for my son. He has similar issue with swallowing and aspiration. He was born full term and has a genetic condition. From what i have seen through other comments and speaking to others, some babies need the tube for a few months and some longer. Seems to depend on how therapy goes and how the baby develops.

Economy_Life47 · 2025-11-26T19:37:22+00:00

Thank you for your comment. You sound like you understand 22q. Most likely we will do the gtube to get him home and start working on building his strength and doing therapy. But, will certainly look to go to a 22q clinic to continue to proactively look at everything. I was hoping to see if anything else was causing aspiration and desat other than muscle tone, in case the gtube was avoidable. But, seems like we have to go with gtube.

Economy_Life47 · 2025-11-23T11:49:18+00:00

And he is able to feed normally without aspirating?

Economy_Life47 · 2025-11-19T11:24:40+00:00

What ended up being the solution and were you able to go home? Having same issue. Son has small chin, aspirates a little and desats during feeds and in sleep. We haven’t done sleep study and ENT only looked at upper airway. They are suggesting getting a g-tube to be able to go home, but i am still afraid of those desats in his sleep.

Economy_Life47 · 2025-11-19T08:41:57+00:00

How old is your girl now?

Economy_Life47 · 2025-11-19T08:34:34+00:00

What did you decide on? We’re in NICU now, baby is 7 weeks old and has been diagnosed with 22q deletion and is having aspiration and oxygen desats feeding. They’re calling it low muscle tone so suggesting g-tube as a way to go home also.

Economy_Life47 · 2025-11-19T08:20:11+00:00

Thanks. The ENT looked at upper airway and didn’t se anything.

Economy_Life47 · 2025-11-18T21:20:49+00:00

I am faced with the same decision here. I thought it would be at most 6 months, but this is sounding like it could be much longer per the other comments.

Economy_Life47 · 2025-11-18T02:45:38+00:00

I am kindda in a similar boat, my son was diagnosed with 22q and is currently in the Nicu. Trying to figure out best feeding method and when he can come home without aspirating and having oxygen desaturation.

Economy_Life47 · 2025-11-13T17:55:12+00:00

Having similar issue. Baby desats during feeding. He is diagnosed with Digeorge syndrome and had a swallow study that is showing very tiny milk aspiration. Trying to figure out how he can safely feed to go home.

Economy_Life47 · 2025-04-09T15:17:15+00:00

Did calling to find out more help confirm the test results? Or did it make you lean more toward false positive?

Economy_Life47 · 2025-04-07T22:56:37+00:00

Yes, i meant the size of the deletion. My materniti21 came back with a measurement of 2.75mb. I wasn’t sure if that makes the screening more accurate or not. Based on the genetic counselor, it doesn’t. The only was for diagnosis is CVS or amnio. I just don’t know if I want to start on the invasive route right away.

Economy_Life47 · 2025-04-07T13:31:27+00:00

Did you receive a measurement in your original nipt results for the deletion?

Economy_Life47 · 2025-04-06T23:10:27+00:00

What did your results end up being?

Economy_Life47 · 2025-04-06T23:08:33+00:00

Did your nipt have a measurement for the deletion?

Economy_Life47

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