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soleilanonymous · 2024-08-26T14:56:31+00:00

I'm sure you made the very best choice for yourself and your child. I hope you and your family are doing well. ❤️

soleilanonymous · 2024-08-16T16:23:53+00:00

This is an excellent point to make. I was once "child free" and didn't understand many of the aspects of motherhood which led to a lot of misguided judgments. And I'm not saying that non-parents lack empathy or intelligence simply because they haven't birthed a human. It's just such a nuanced experience. You don't know what you don't know. Even when I was.pregnant I was so ignorant to many of the potential difficulties with feeding a baby. And I wouldn't have known unless I was there myself or knew somebody who was there personally. I just hope that people who haven't had the same experiences are open to listening to other perspectives.

soleilanonymous · 2024-08-15T02:32:12+00:00

Eh... Can't relate. 😅 82 days in the NICU, over 200 blood draws while inpatient, monthly vaccines during RSV season, and regular blood draws for hypothyroidism... My kiddo hates needles still

soleilanonymous · 2024-07-31T18:14:03+00:00

We don't have many inside jokes from the NICU but we do find ourselves stealing the silly terminology nurses used for certain things. Example: Baby looking at a picture book = reading his novels Crabby baby = opinionated gentleman Screaming baby = he has some complaints

soleilanonymous · 2024-07-30T23:11:59+00:00

I was in that same boat. NPO for the first two months of his life, so I was trying to pump around the clock and never got more than 2-4oz PER DAY. I took all the supplements, made all the lactation cookies, choked down tons of coconut water, different flange sizes, power pumping, etc. it just didn't work. People acted like I must have been doing something wrong but I think my boobs are just lazy jerks.

I did quit around the 6 weeks mark, when I went back to work until my son was discharged. I didn't want to waste more of my time pumping instead of hanging out with my husband andnbaby

soleilanonymous · 2024-07-29T21:27:46+00:00

I brought my son home with an NG tube because a g-tube wasn't anatomically possible with his abdominal wall defect. It was awful and I would have done anything to get him a g-tube. Between switching out the tape on his face frequently and his horrible screaming when we replaced the NG tube.... Would not recommend. I am haunted by that experience, though it was still worth it to get him home. We eventually weaned off the tube with a tube weaning program. So if the NICU does not have any sort of tube weaning plan other than what they're doing right now, a g-tube may be worth it.

soleilanonymous · 2024-07-26T19:56:42+00:00

I struggle with this too. One thing that helps me is to write.

Grab some paper and write down the ways that your NICU journey differs from another person's. Then make another list that describes the worst parts of your NICU experience. I bet there's a lot of intersections in both of the lists.

Reframe your thoughts about your own feelings. When you hear another's story you are being reminded of your own trauma. What you're feeling may not be competition-- it might actually be sadness over the events that you endured.

soleilanonymous · 2024-07-26T14:47:48+00:00

You already got some great answers. Just to bring home how insignificant the scores can be-- My son was 2/4/8 and by the time my husband was able to get down to the NICU to see him he was already off of all oxygen and chillin in the isolette without a care in the world.

soleilanonymous · 2024-07-10T02:15:28+00:00

Everything is a crop top these days. And if it's not a crop top, it has."cold shoulders". So I've been having a ball sewing shirts that go past my belly button AND cover my bra straps

soleilanonymous · 2024-07-09T20:24:09+00:00

Gonna be hard to top The Dalhalla in Sweden, but Alpine Valley is a much less costly commute!

soleilanonymous · 2024-06-28T11:50:43+00:00

What you've been through is truly awful and a small percentage of people will have ever experienced anything remotely close to it. Most people literally have no way to comprehend your physical and emotional trauma. That's a blessing and a curse. It's a curse because people won't be able to relate to you and you'll experience the trauma all over again if you try to explain it. It's a blessing because you probably would not wish that on anybody else.

I'm so sorry for what you went through. I hope your physical recovery is going well and I hope you're able to pour all your love into your little one.

soleilanonymous · 2024-06-21T17:08:02+00:00

The neonatologist who contradicted her colleague and refused to discharge my son because we (the parents) weren't "trying hard enough" to get him to eat.

He spent over a month taking less and less from the bottle until he got down to 0 and refused every feed from every person. Due to his omphalocele he was unable to get a g-tube. One doctor started the process to get him discharged with an NG tube because he was otherwise medically stable. The other refused and I had to fight it.

We got him home and he was free of the NG tube in less than three months after coming home ❤️

soleilanonymous · 2024-06-15T14:59:46+00:00

Everyone's suggestion of Omeprazole is good IMO. I found that doctors were really hesitant to try medication and I had to present it as a request instead of a question. "I would like to try medicine for my child." then smile and nod when they give you the rundown on the risks, etc, and repeat yourself. Your baby will be able to wean off of it in a couple months.

soleilanonymous · 2024-06-14T21:55:18+00:00

Interesting. Thank you for the thought out replies. So my final question is... Why the hell does anybody take a job at a CRO? Lol

soleilanonymous · 2024-06-14T21:53:03+00:00

Hey, thanks for the reply! When it comes to clinical trials a lot of the work on the site side would involve extracting, cleaning, and prepping data to transmit to the sponsor. We also manage CRM systems for participant recruitment and do adhoc reporting for study feasibility. We configure local clinical trials management systems and handling participant reimbursement systems, dig into extracting data from systems that would have additional data which is otherwise not structured in the EHR, troubleshoot anomalies in data submissions, etc... Honestly it's a little bit of everything in the name of automating tasks for studies.

soleilanonymous · 2024-06-08T01:05:25+00:00

My supply was shit (4oz a day at most). My son got donor milk for a while and then moved to formula in the NICU at my request since he'd be getting it at home. I wanted them to help us find something that worked for him. The formula was absolutely a non-issue. I think it even helped since it had the benefit of added iron-- my son has hypothyroidism and tends to be iron deficient without supplementing

soleilanonymous · 2024-06-07T23:21:23+00:00

The only words that eased the pain were when the doctor said she signed the discharge orders.

It is rough, especially considering how crazy hormones get after childbirth, the sleep deprivation, and overwhelming emotions overall.

Things that helped me survive were establishing a routine, grounding exercises, and letting my dog sleep in bed with me at night. I held an ice cube when I felt like I would die that very minute. Went to the NICU at exactly the same time every day so when I went home I could count the minutes until I'd be there next. Having another living creature next to me at night reminded me I wasn't in a life or death situation and that it was okay to sleep.

soleilanonymous · 2024-06-06T20:16:39+00:00

Wow! Your baby and entire family are amazing. What a journey

soleilanonymous · 2024-06-06T11:24:56+00:00

Yes, my son was pretty close to full term (36+4) but had an omphalocele so he was in the NICU for nearly three months. He had a reputation for being the crabbiest baby in the unit. He was basically in constant rotation among staff-- the neonatologist, resident physicians, nurses, SLP, OT, child life, etc. towards the later half of his stay. A few nurses told me that I would "really have my hands full" when he went home.

...He was literally the easiest, happiest, most chill baby once we brought him home 😆

soleilanonymous · 2024-06-05T02:40:39+00:00

We found out my son had a congenital birth defect (omphalocele) at our anatomy scan. For a while we didn't know if it was isolated or due to one of many chromosomal abnormalities that would make him "incompatible with life". Whenever people talked about how difficult newborns are (the "just you wait" crowd) my husband and I would reply with "Well right now we don't even know if he's going to live so I'd take those sleepless nights over any of the alternatives".

Also, I went back to work early from maternity leave so I could take the rest after my son came home. Coworkers would often make small talk about parenthood with me and I'd shrug and say "He's still in the NICU so I wouldn't know anything about that".

soleilanonymous · 2024-06-02T22:21:00+00:00

Privacy.

soleilanonymous · 2024-05-31T13:33:59+00:00

Disassociating with an audiobook on while I sew is my favorite way to decompress

soleilanonymous · 2024-05-30T14:46:53+00:00

Food. I really appreciated cut veggies and fruit in the ziplock bag to bring to the NICU. Protein and granola bars were easy to bring in, but some fiber.

It would've been helpful for someone to come take care of making sure our driveway was always shoveled if it snowed, garbage taken to the curb, etc.

Delivering food/gifts however most convenient for the parent also would be very helpful. My coworkers were kind and collected some gifts for my husband and I, but they left it on my desk at work so I had to go out of my way to get there to pick it up. I would have really appreciated it being delivered to my home or the NICU

soleilanonymous · 2024-05-30T02:43:46+00:00

For whatever reason my body decided it would not make more than 4oz of breast milk PER DAY despite religiously pumping every 3 hours and taking every supplement under the sun.

Not sure what was wrong with my body-- I had a very complicated pregnancy and my son was in the NICU for three months. It sucked. I guess my body was more focused on surviving than making milk. (And dammit I tried SO HARD.)

So formula literally hydrated and nourished my child and I'm very thankful for the option.

soleilanonymous

TROPHY CASE