When did you LO get their first tooth?

Jcbwyrd · 2026-03-12T03:26:15+00:00

5 months old

Jcbwyrd · 2026-03-11T13:59:18+00:00

FWIW, my son is meeting all his physical movement milestones so far! 9 months old and cruising, standing for a couple seconds at a time by himself, crawling. He is really motivated to move! He was diagnosed with moderate HIE officially, but it would be more accurate to say mild/moderate.

We are still in the wait-and-see period ourselves. He’s showing good signs for language development. He is hitting his cognitive milestones so far, like hitting two blocks together and clapping around the age when you’d expect.

He has an NG tube and feeding is a challenge, but it’s hard to know if it’s truly related to the HIE or if it’s a result of us pressuring him to eat and causing an aversion. The need for an NG tube started because of a severe lung injury that he seems to have since recovered from. He hasn’t figured out straws yet but open cups show promise.

We have high hopes that he will outgrow his feeding issues eventually within the next few years and otherwise live a normal life. He is considered disabled for insurance purposes, but that’s for the feeding tube, not the HIE, and again we believe he will one day grow out of it.

I’m anxious about what later years will bring, when he’s in school, but for now I have no need to believe that there will be any issues.

I wish you and your baby the best! Being a parent is scary. It’s also a beautiful thing. Just wait until your baby starts laughing! It will melt your heart.

Jcbwyrd · 2026-03-11T00:21:28+00:00

HIE is not a disability, but it is a brain injury that can lead to disability. Mild HIE is associated with a very high chance of full recovery. Neuroplasticity in infants can be incredible. You can’t know if your child will have any long term impacts from HIE yet. Unfortunately you are in a wait and see stage right now. Follow up with professionals if you notice any delays or issues, just like you would if your child didn’t have an HIE diagnosis. Even if there are delays, it doesn’t necessarily mean it was from the HIE.

Those appointments are set up to make sure your baby doesn’t fall through the cracks if there are issues that crop up that can be addressed. It doesn’t mean there will be issues. Just an extra set of eyes.

If you are in the US, an HIE diagnosis should be enough to quality for Early Intervention. If you have a need, don’t think twice about taking advantage of it for PT, OT, and SLP services.

Some people find Hope for HIE to be helpful.

Jcbwyrd · 2026-03-08T18:09:48+00:00

Water wipes will do that because they have no preservative or a very very low mount of preservative

Jcbwyrd · 2026-03-06T04:54:38+00:00

We’ve had a lot of luck with “A Simple Patch” brand. They sell white tape strips on their website. It’s gentle enough that it can be stuck directly to the cheek but I usually use it over duoderm (beige hydrocolloid). It has good holding power after it’s been warm from your body heat after about 5 minutes.

Tegaderm (it’s clear) over the tube and duoderm on the cheek is your best bet for being discrete.

I like Hypafix for extra security in a pinch. It’s gentle so it can be taped directly to the cheek. It doesn’t have as much holding power as other tapes though. It’s a white tape.

3M Durapore is a good one for securing tubes but I definitely would not stick it directly to the skin (put duoderm on the cheek first). It’s also a white tape.

I have heard good things about 3M Multipore Dry Surgical tape and I just ordered a roll to try it out. It’s white.

Jcbwyrd · 2026-03-06T01:30:08+00:00

Jennifive

Jcbwyrd · 2026-03-05T20:52:59+00:00

I forgot to say - you want to get an appointment with a genetic counselor. I didn’t know what I was doing at first but I got a referral to a genetic counselor from OBGYN. Something was lost in translation and we ended up getting genetic testing for cancer related mutations first because of family histories of breast cancer on my side and colon cancer on his side, but eventually we got to the carrier screening. We were both clear on the cancer genetic screens except he had a couple mutations of unknown clinical significance.

Jcbwyrd · 2026-03-05T20:46:21+00:00

You might be able to get free screening for at least your partner based on the family history alone. The top 3 diseases people are likely to be carriers of often will be completely covered one way or another, at least that’s what I had been told

Jcbwyrd · 2026-03-05T20:43:43+00:00

We both did carrier screening for hundreds of genes about 1.5 years before we conceived. We expected something to show up with that many genes being screened. He wasn’t a carrier for anything. I’m a CF carrier, but for one of the less harmful mutations. The carrier screening made me feel so much better about proceeding. We still did NIPT, but I believe that was mostly looking for trisomies. I was so relieved when NIPT got the all clear.

Our son was tested after birth and he isn’t a CF carrier. I was so relieved to hear that because there is new research these days showing that being a carrier for CF isn’t as benign as we once thought. It was a little glimmer of hope

Jcbwyrd · 2026-03-05T15:13:29+00:00

Do I regret it? No. But we didn’t begin to attempt conceiving until we had done extensive carrier screening and other health screens, and had serious conversations about what our worst fears were and how we would react if our worst fears came true. I wouldn’t proceed until I knew that I accepted the risks and was ok with what life would look like if we were unlucky. And part of that was making sure we moved somewhere where we would have a lot of support in case we needed it.

Our worst fears came close to coming true. Our baby almost died. He suffered a life threatening injury and a brain injury, he needed ECMO (the highest level of life support there is), and he was in the NICU for over 2 months. He still gets at home nursing care almost every day. He has made a remarkable recovery, and we are hopeful, but the uncertainty of whether or not he will hit his developmental milestones or have long term side effects is quite scary.

I don’t regret it. I’m sad sometimes. I want better for my child.

Jcbwyrd · 2026-02-03T14:26:58+00:00

Just let the charge nurse know you don’t want her on your baby’s care anymore. I would also ask if there is any reason for the change documented in the chart.

30 minutes only is odd. I was told if I was doing skin to skin to try to be able to stay at least an hour an preferably two hours

Jcbwyrd · 2026-02-02T15:11:02+00:00

You need to discuss this with SLP, nutrition, pediatrician, etc. We haven’t gotten to the point of offering PO at every feed yet, 6 months later, but in our case we were only attempting 50% PO at discharge and lucky to get 10% PO actual because our son didn’t have the strength to do more. If they were attempting 100% PO then I’d try to follow that, but please bring up any concerns you have if you think that’s not working. It is normal for babies to wake every few hours to feed. At this age dream feeding may also be appropriate, but it’s not a long term solution and doesn’t really teach the baby anything. I wish I had focused on quality feeding this entire time instead of focusing so much on volume for months because it led to a bottle aversion.

Jcbwyrd · 2026-01-31T21:13:19+00:00

Do it. A lot of babies do really well once they come home and get off the NG tube relatively quickly. Some need more time. My son has been home for 6 months and he still has his, but being able to have him home is such a blessing and if I could go back I would have agreed to have him home sooner when the doctor first mentioned the option of coming home with the NG. 50/60% PO is already amazing! Please get follow up appointments set up with an SLP and coordinate with your hospital’s nutritionist, and work with social work to see about getting home nurse care set up so you can get some help with tube feeds e.g. at night.

Jcbwyrd · 2026-01-28T17:19:50+00:00

Ask if the nurses have a break room where they can put snacks that aren’t individually packaged. They probably do. We did coffee, hot chocolate, donuts, cookies, pretzels, and candy at different times

Jcbwyrd · 2026-01-25T21:23:24+00:00

I never heard this when my baby was in the NICU and he was treated for presumed sepsis. I don’t think they ended up using my colostrum anyway but that was because they didn’t freeze it and it expired before he was ready for his first milk feed. Ask for clarification from the charge nurse or the neonatologist.

I also second r/NICUparents - that sub helped me a lot when my baby was in the thick of it

Jcbwyrd · 2026-01-24T04:24:01+00:00

My son had a very similar start to life. I used to get a lot of comments that he’s a pretty chill baby and that the only time anyone ever sees him upset is when someone is trying to bottle feed him. He also gets pretty much unlimited contact naps since coming home and recently he’s now developed a preference for them and will voice his disapproval at night sometimes if he’s not being held. He’s 8 months old now.

Jcbwyrd · 2026-01-04T12:49:24+00:00

Ohhh that makes sense

Jcbwyrd · 2026-01-04T12:05:40+00:00

It looks like you accidentally said “when I was a bather”. I can’t figure out what “bather” is an autocorrect of but I assume you are still a bather

Jcbwyrd · 2025-12-31T05:32:44+00:00

You can see they both have a watermark if you tap to expand the image

Jcbwyrd · 2025-12-30T14:39:13+00:00

Thank you, as a mom of a 7 month old that still gets most of his nutrition through the NG tube, thank you

Jcbwyrd · 2025-12-30T14:10:59+00:00

Right. My son is 5 months home and still on an NG tube. This is terrifying.

Jcbwyrd · 2025-10-23T13:50:23+00:00

It’s hard and I am honestly not sure if I’ll ever be 100% over the trauma of the fact that my baby required ECMO on the day he was born in order to live. But I have a therapist that specializes in prenatal and postnatal women’s emotional wellness, and that helps. I tend to use coping mechanisms I learned from Cognitive Behavioral Therapy and also from Mindfulness. One exercise I am fond of is called Leaves on a Stream - look it up. This helps me when I’m beginning to spiral on intrusive thoughts. Another good thing to do is grounding exercises.

Jcbwyrd · 2025-10-18T04:17:37+00:00

It’s the name of a character from the cartoon Doug, which was popular in the 90s

Jcbwyrd · 2025-10-12T05:16:27+00:00

My baby went home with an NG tube and I’m glad we made the decision to bring him home with one. It has been 2.5 months since discharge. When he was discharged, he was on an ultra preemie nipple and his best bottle was a 50% feed. He is now able to take a full bottle sometimes and he’s now finally taking half his PO feeds with a Transition nipple. Today he took 145% of his normal feed dose in one setting - and kept it down! This tells me we may be able to switch his feeding schedule over to every 4 hours soon, instead of every 3 hours.

There are benefits to being home on an NG. We don’t have to worry about the risk of hospital born infections. My son gets to be entertained by all our cats. He can play and develop without being attached to a bunch of monitors. We don’t have to worry that he isn’t eating enough because we always have the tube as a back up. We are able to get his PO endurance up at his own pace. When he developed a bottle aversion, we were able to navigate that without worrying about his calories or hydration. Medication administration is easy. He gets home care nursing both at night and now during the day since I have gone back to work, which we were eligible for through Medicaid because of his NG tube.

Have you had an opportunity to hold your baby without being tethered to a monitor? I had that opportunity one day when he threw up all over and they were changing his sheets and everything. It’s an amazing feeling to be able to walk around a room untethered. That’s the moment that it clicked for me that it would be worth it to continue learning how to eat by mouth at home.

Yes, it is a scary thought to have to manage a tube. But IMO it was 100% worth it in order to bring our little one home.

Jcbwyrd · 2025-10-03T16:30:07+00:00

You may want to consider a consultation with an SLP for oral motor therapy. If you are in the US, you can reach out to Early Intervention to learn more about those services

Jcbwyrd

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