u/SandHarbor38

Hi! I’m so sad that my baby has to switch to formula at 4 months I no longer have a good milk supply (going to try and bring it back).

Today we switched my baby to almost full Kendamil, 3oz Kendamil & 1oz breast milk. He has tolerated the changes all week no spit up or belly issues but he seems extra sleepy today which is new.

Anyone else notice this extra sleepiness switching to Kendamil? Wondering if it’s a sign of not tolerating and I should try switch to another formula.

Hiii fellow nicu parents. My son born at 27+3 & is now 40+3 is about to get discharged and we have to decide between an NG tube or G tube due to silent aspiration he can only take 10ml by mouth. He has BPD & was on cpap up til 38 weeks then hi Flo & now lo flow. They think his lungs history & taking longer to come off support added to his inability to swallow.

They will reassess him with a swallow study in 3 months.

We are leaning toward NG because we believe he just needs more time, but the medical team is recommending G tube & their reasonings are all due to convenience (baby pulling it out, getting aversions from the stickers on his face, difficulty with hands to mouth). I’d rather not put him through surgery for convenience even if it requires more maintenance from us parents.

Anyone with NG tube for their babies can share pros & cons? Related to the tube, development, oral aversion or anything?

Thank you!!

My son born at 27+3 is now 40+1 & had a swallow study done today. We now need to choose if he’s going home on NG or G tube.

He’s been on respiratory support of cpap til 38 weeks, high flow for 1 week & low flow for 1 week.

He’s started bottles by mouth 4 days ago & due to decline in his respiratory status, they decided to go with a swallow study today.

The study showed he is aspirating once he is tired. So docs limited him to 10ml by mouth & the rest gavage with a repeat swallow study in 3 months.

They say he can go home now & we have to decide to do G tube or NG. He does have inguinal hernias that need to be repaired but was going to be done at 55 weeks, but if we go with G tube they will do both at the same time.

G tube seems like it would be easier & more comfortable for him, but I am SO worried for the surgery & it’s because they weren’t going to do hernia surgery on him until 55 weeks to prevent as much as possible any breathing complications so if we do it now, he will be under anesthesia for longer & worried about his breathing when he’s done with surgery. He also juuuust got off cpap a couple of weeks ago, so his lungs are still recovering.

Any opinion or advice?

My son was born at 27+3 & is now 39+4 & just weaned off of his respiratory support to room air (previously cpap > hi flo > low flo).

He’s had for a while what the docs are calling “baseline retractions”. Has anyone else seen this with their babies? His saturations, histogram & blood gasses are normal, which were not so good previously, so those are all better but still the retractions.

My concern is that the docs could be missing something else that is causing it & curious if anyone else has this happen or recommendations on what I could ask for them to check. I’m so scared to miss something & if I don’t point it out soon enough he could go back on hi flo or cpap.

I spent way too much time researching infant car seats and ultimately chose Clek Liing because of their reputation for safety & quality.

The seat arrived with multiple quality issues,

1. Misaligned canopy
2. Malfunctioning zipper
3. Open seams throughout
4. Wobbly handle

I contacted Clek expecting a straightforward resolution, but instead of taking responsibility for a brand new defective seat, I’ve gotten inconsistent answers about what they consider a defect and what they’re willing to do about it.

Initially, I was told I would have to pay a $65 return fee because they determined the issues were not defects. After pushing back, I was then told the return fee would be $40. Now, suddenly, they are saying the issues can be addressed under the warranty with replacement parts. I do not feel that I should be troubleshooting or fixing a brand new seat myself, I also don’t feel like I should be paying a return fee for something that should have arrived without issues.

I wish I had seen more firsthand experiences like this before purchasing. If you’re considering a Clek, I would do your research beyond the safety specifications and look closely at quality control and warranty/returns.

For me, the combination of the defects, the changing explanations, and the refusal to simply stand behind a $550 car seat has completely changed my opinion of the brand and I would not recommend Clek based on my experience.

Anyone have a clek in mammoth material? It seems very firm and not soft… worried about baby getting skin irritation or scratchiness. I initially wanted it for temperature regulation and FR free.

Does anyone have issue with the material or does it soften over time?

My sweet boy was born at 27 & 3, is now 36 & 2. He’s growing so fast, advancing quickly in some ways and others not so fast… like coming off CPAP. After all tests, ultrasound of heart, diuril, budesonide, etc DRs think it’s just prematurity of the lungs and he just needs more time. He hates the CPAP & desats more when he’s on it, but when he’s taken off to “sprint” he can only tolerate 3 hours before he starts to show “work of breathing” with moderate retractions and they put him back on.

I’m exhausted, and when I’m exhausted I feel the most emotional. Today it’s really just getting to me. I’m usually strong & keep it together but today I just so sad that I feel sick inside. I wish he didn’t have to be in the nicu. I wish my body could’ve held him in longer. And I just keep hoping and praying he comes home soon. 💔

Please excuse my word vommit. Just seeking advice or hearing anyone else’s experiences.

My baby is in NICU on cpap pressure of 5. A week ago he started “sprinting” off cpap once a day, starting with 2 hours, then 3. On the first day baby sprinted for the longer 3 hours, his sats on the monitor were normal however physically he looked like he was working hard- retractions, head bopping so they reduced him back to 2 hours. The first day he was reduced back to 2 hours, he couldn’t tolerate the full 2 so they reduced him to 1 hour. His sats are still normal, but still having retractions and little bopping. Not relaxed as he was in the beginning of the week when he very first started sprinting.

Doctors think he may be tired after having to work hard to sprint all week.

He is 36 weeks on Wednesday, and if he is still on cpap by then which he most likely will be, he will get a diagnosis of BPD.

This makes me sad & I’ve already felt guilt this whole time but him not being able to come off cpap yet makes me worried, even more guilt and just not sure how else to feel, help him or anything. 😞

On another note, he shows feeding cues but only when we (parents) are there. Because we can’t be there 24/7, the docs are basically saying well he’s not showing feeding cues so we aren’t going to move him to a high flo or cannula to start feeding yet. So how long is he going to be on cpap then 🤯 this makes me sad because he clearly wants to eat by mouth, at least he shows us when we are visiting him. But out of the 8 times he eats per day we maybe can be there for 3 feedings as they are every 3 hours which is not enough to prove to the doctors that he is really showing cues since he is not as active through the rest of them when we are not there.

I just don’t know what to do, how to help, constantly wondering am I missing anything, I’m exhausted already, don’t have other kids but we’re backed up at home, it’s all just feeling heavy this week.

Has anyone had their babies on diuril for extended periods and it helping?

My baby is 32 weeks & 5 days & has been on a low dose diuril for 1 week so far. I don’t like it because I believe it can cause dehydration even though so far they’ve checked his electrolytes & they have been normal, however with prolonged use I worry it can go south. There is no end date for the diuril right now, but they say he won’t go home on it.

They put him on it to help wean off cpap, along with budesinide. Xray showed hazy lungs, he has no swelling but just the fact that he’s still on cpap was the driving factor to put him on diuril. Cpap was able to come down from 6 to 5, and oxygen levels 21-23% instead of 23-28%. I don’t know if it’s the medication or just that he’s growing, but I don’t want him on medicine he may not necessarily need.

Hi! Anyone with the Clek Liing in mammoth can share pictures of it or how it’s held up over time?

The pictures online make it look black but I know it’s a gray, wanting to see how light or dark in real photos.

Also how has it held up for you? Trying to decide if it’s durable of a fabric compared to their Railroad ziip before I purchase.

Thank you!!

I was previously pretty set on the Clek liingo but then turned off when I found out the head rest doesn’t move or come out as they grow.

Looking for other infant seat recommendations for 4lbs & up.

I was looking at,

Nuna Pipa Aire rx - but read it could create a slouch that affects airways

Cybex Aton & Cloud

Uppababy Aria V2 - same headrest issue

Baby moved to a new hospital at 30 weeks gestation, is now 30 weeks & 3 days.

At the previous hospital, baby was in a Z Flo inside of his isolette, and the new hospital doesn’t use Z Flo so they switched him to a Dandleroo swaddle.

My baby seems so uncomfortable now-
moving around more, moving his head back & forth at times, more jittery, desats.

I learned from the previous hospital that desats can indicate discomfort and they would try different things including rotating his position to help before opting for a new medication to help.

Anyone experience any of this, or have any insights to make me feel better/not be a raging concerned parent 🙃

My baby was born 27w3d at a hospital over an hour away from home. After 2 & 1/2 weeks in that NICU & being stable, we had him transferred to a hospital within 10 mins drive to our house. Today is day 1 at the new hospital & I can’t stop crying at the differences in care & I wish I never transferred him. His nurse today was passive aggressive when I requested certain things be kept the same as it was at the previous hospital & I started crying after that too. The new nurse moved my baby so many times today when the previous hospital told me they want to limit movement to his care times to avoid stimulation. He’s on a cpap machine and hates prongs at the previous hospital, and the new nurse insisted he was fine and be left on prongs 24/7. His care times including diapers and feedings were every 3 hours at previous hospital, and today’s new nurse was like, I just do it when he cries. Are these things too unreasonable or something?

Looking at the Nuna pipa Aire, Urbn or Clek Liing.

Any recommendations or personal experiences with these? I just can’t decide.

Some of my research says Nuna is more comfortable & a better fit for small babies but Clek is safer although seems like baby could be swimming in it.

Can’t decide between these seats for preemie baby. Any suggestions?

Going with bugaboo or uppababy stroller.

Hi! I’m considering the bugaboo butterfly, Nuna trvl lx or Uppababy minu v3 & just looking for recommendations or even suggestions for others that are better.

I need a travel stroller mainly for road trips so it doesn’t need to fit airlines, we don’t have a lot of trunk space. Mostly city walking but occasional grass or light gravel or dirt at National parks (nothing off the main trails & doesn’t need hiking capability).

Would any of the 3 strollers I mentioned work for this or open to another suggestion!

Thank you!!

My son was born at 27 weeks & 3 days & is now 28 weeks & 3 days.

He does these shakes where his arms or legs will go up in the air. But today, during skin to skin I noticed his head started doing little shakes too. Not his head and body, but just his head would have a shaky movement and then stop its own.

The docs and nurses don’t seem to be concerned about it saying all his vitals have been normal and his brain ultrasound checking for bleeds was also normal. They also said seizure activity would cause something to be off on vitals, and that it was highly unlikely at his gestation.

Anyone else experience this with their babies or any idea what could cause it?

Just wanting to connect with others in the same situation or any feedback/suggestions or success stories to help me get through.

My son was born at 27 weeks & 3 days. He is now 5 days old. He is on cpap, oxygen levels go between 21-28%, jaundice lights, electrolytes. He starts fortifier in my breast milk tomorrow. He is doing good, but it still sucks & is so hard to not feel guilt. I was hospitalized with ruptured membrane at 25 weeks & I hated being in the hospital. So I feel like maybe my hormones or feelings made him come after barely 2.5 weeks hospitalized.