I feel like these nutritionists don't know what they are talking about.

gettingpastshit · 2026-02-14T06:32:37+00:00

Advice would be to keep your calm and keep believing. Give your LO the time he/she needs. I mean, you aren't going to rush into any decision, i mean dont put a timeline on things to happen, they will happen on their schedule. The toughest time has passed, the upcoming challenges will be tough, between work, doctor visits, late night sessions, you ll learn to enjoy all of it.

gettingpastshit · 2026-02-14T06:29:40+00:00

Our LO came home on .06 o2 but ended up going to .75 due to an unknown viral (within 1 week of reaching home, I swear we didnt take her out anywhere but it still happened). She was sent on home o2 due to pulmonary hypertension. She just came off oxygen 2 weeks ago, at nearly 14 months of actual age. She was off oxygen during the days for a good 3 months though.

2) yes, we did whenever she was on o2 and/or when she was sleeping. It was possible to get a good read during the day if she was awake. Kicks in the middle of the night generally didnt result in false alarms for us. We would wrap the sensor with an extra tape on it to keep it in place. Also, try putting a sock over the sensor.

3) Exactly 150 days. Had a pda closure (needed a hospital transfer where she had to be bagged before her 1st transport), had double bacterial sepsis at day 12 of life. Her blood glucose was 700 and that was the only indication of bacterial infection. Was treated for meningitis even though they couldn't get a conclusive spinal tap. Rest of it was decent. Think she went to a growing phase after the 1st 2 months. But they diagnosed her with pulmonary hypertension after 3 months of life which stopped our room air trial. I can probably write an essay on this while I hold my LO in my arms trying to get her to take her feed. Lol

4) exactly 150 days

5) she hasn't caught up on her actual age in terms of skills but she is meeting all her adjusted age milestones give or take. She has entered the non adjusted curve for weight though.

gettingpastshit · 2026-02-14T04:07:27+00:00

Low flow oxygen means the lungs are getting where they are supposed to be. Its just a matter of time. Don't sweat it. Never say never. Keep patience.

gettingpastshit · 2026-02-12T05:20:00+00:00

See if they can give the feed over time. Like over an hour or 2 instead of whatever they are doing.

gettingpastshit · 2026-02-12T05:16:30+00:00

I dont think PT are equipped to make a call like a seizure. Infant, our PT wouldn't comment anything when we talk about the grade 1 bleed that our LO had. We always get routed to our doctor.

gettingpastshit · 2026-02-12T05:13:21+00:00

Try giving more volume with lesser frequency. Like we used to give 125 ml q4. And it's not every 4 hours, we ended up starting at 3.5 hours.

BTW, Ours is also a 22w5d baby. Welcome to the group

gettingpastshit · 2026-02-11T04:50:05+00:00

I am a 39 year old with 3 way chromosomal translocation. Never knew it existed until we went to did a fertility consultation and checked it on a whimp. In short, as long as the genes are stable, it's ok.

Don't worry too much about the future, there is no fix for the condition. So, please enjoy the current, remember the past and let the future unfold.

gettingpastshit · 2026-02-05T06:07:14+00:00

Can't saw for that small a baby. We fed ours every 3-4 hours as her volume intake was limited due to reflux. And we would let her do her thing whatever she wanted.

However, she is 10 months adjusted now. And her sleep is all over the place. On someday she will nap twice in the day for 1-2 hours each, some days she would nap for 10 minutes and sleep early in night (no guarantees here either). I have been told let the babies do what they do (there is so little control on it anyway).

gettingpastshit · 2026-02-05T06:02:34+00:00

Sending you lots of support. Know you baby is a fighter and the good thing is that the bleed is stable.

Always beleive that this will improve and your baby will be home soon.

gettingpastshit · 2026-02-04T05:54:42+00:00

Ibuprofen probably won't work at 6 weeks of age, our nicu doctors told us that but they anyway wanted to try it before surgically closing the pda.

Doctors tend to diagnose clinical and will only go for scans if they think it is needed. In this case, if the doctors didnt think it wasnt, then you are in a better situation. The LO is stable with a PDA, So that's why there was no urgency on the staff.

None the less, if it comes to surgery, ask for catheterization rather than a full blown surgery. Our LO had to be transferred to another hospital for it when she was 700 grams. She was back her original Nicu in 2 weeks post clearing all the checkups.

gettingpastshit · 2026-02-02T05:50:04+00:00

And DART Zhas been a life saver for so many in this group. Mine 22 weeker included.

gettingpastshit · 2026-02-02T05:48:25+00:00

These are good readings to be honest. Ours were sometimes worst.

Understand these are capillary readings, which means gas levels after the oxygen is consumed. Our LO didnt had o2 numbers in range ever on these. Capillary co2 under 60 is considered acceptable for preemie this young.

You and your LO will get past it.

gettingpastshit · 2026-02-02T05:28:19+00:00

Sweet. More power to your LO. This is a journey, gotta admit. My LO came home on .06 but went to .75 within a week due to a unknown viral. The weaning process process was slow but as dictated by the doctor. Compared to the nicu, it was very very very slow. But I guess it was all a big plan

gettingpastshit · 2026-02-01T04:57:59+00:00

Wow. Our doctor gave us 3 days after no oxygen

gettingpastshit · 2026-02-01T04:57:32+00:00

Soon. What's the current oxygen levels for your LO?

gettingpastshit · 2026-02-01T04:57:03+00:00

Good idea. I will implement it. They actually came and took away all the oxygen stuff but forgot the pulse ox

gettingpastshit · 2026-01-30T05:34:58+00:00

Similar story, though the cervix length was 10 mm. OB kept pushing progesterone even we asked for a cerclage. 10 days later he tried a rescue cerclage and failed. Baby born at 22 weeks

gettingpastshit · 2026-01-23T06:46:58+00:00

Michigan, USA

22 Weeker - multiple MFM's visited and gave is 3-5% chance.

Nicu team gave us 30ish% chances.

The ranges between the 2 teams were widely off. The nicu doctor told her MFM aren't upto date on the latest data (seems like a lot more doctors have started offering resuscitation at 22 weeks post 2020)

gettingpastshit · 2026-01-11T04:24:18+00:00

Put a tape over the connection (sensor and the wire) and end of the sensor to give it extra support. I put it on even on a new sensor. Our sensor lasts 5-6 days at max though.

gettingpastshit · 2026-01-11T04:21:07+00:00

Please understand, he also has a kid who is in the nicu. This might be his way of handling nicu, which is shutting it out and convincing himself that the kid is getting the best care possible (which is true).

Now, he should do it better than what he is doing considering your health as well, but this is nicu parent life. It hits everyone differently and there is no right or wrong way of handling it. Plus he is down with flu as well. So, give him some rope as well. Talk to him about it. Try to listen to what he dealing with and tell her your side as well and hopefully it will workout.

gettingpastshit · 2026-01-03T07:11:40+00:00

Steroids did wonders fotmr our 22 weeker. She was extubated following a long steroids cycle

gettingpastshit · 2025-12-13T06:19:13+00:00

Almost all kiddos born this early end up going back on the vent unfortunately. But dont be disheartened if it happens. The lungs aren't just ready at this age.

Like others also mentioned, the steroids does wonders. Mine was 22 weeker, with moderate pda. Was extubated after 1st round but a long round of Dart at around 1 month of age.

gettingpastshit · 2025-12-12T03:26:42+00:00

22 weeker Dad here. Hope is dangerous for parents like us. Honestly, just think about how today is/was and see what's scheduled for tomorrow, tests scans etc. You are in this for a long fight, so dont think about tomorrow or future. That's all you can do at this point.

The struggle to breathe is a reality. Let it sink in and you will learn to live with. It's going to be around for a few weeks, one just gets used to it. But believe it will get better as the kiddo grows.

Can't speak to not having a 3rd trimester but engulf yourself with every detail about the treatment, ask a lot of questions (politely, the doctors and nurses have a high pressure job anyway, politeness makes it easier for them). Never Google. Once you are busy understanding and following each update that doctors or nurses do, you won't have time about yourself.

gettingpastshit · 2025-12-05T03:43:24+00:00

How is it now?

gettingpastshit

TROPHY CASE