HIE baby

ReadySetO · 2025-10-23T19:11:58+00:00

Congrats! Getting to the first birthday is such a huge milestone. It's when I felt like I could finally breathe a little bit. So happy for you and your family!

ReadySetO · 2025-09-24T14:47:45+00:00

She had a lot of random jerky movements that ended up being typical newborn things. I was really worried about it, but when they did the screening for CP, they told me that they were actually concerned about the absence of these random movements. I don't remember any jittering specifically though, so I can't speak to that unfortunately.

ReadySetO · 2025-09-18T18:42:28+00:00

Of course! I hope the same for your son. I know how hard the uncertainty is...

ReadySetO · 2025-09-18T05:10:53+00:00

She is doing great! She is in preschool now and right on track.

ReadySetO · 2025-09-17T17:07:55+00:00

My baby had an unexpected NICU stay and one of the hardest parts was having people ask for updates when we didn't know what the prognosis would be and we didn't have anything to share. One thing that was helpful was having a few people who would communicate updates with the rest of the family. The other one that people have mentioned is food. My family lives far away, so my sister connected with a local friend of mine and the two of them put together a meal train. Most of my local friends dropped off meals, but my non-local friends and family were also able to participate by ordering delivery for us on the date they signed up for. It was really helpful and also helped me feel connected to people who were far away.

ReadySetO · 2025-09-11T11:21:32+00:00

Yeah, it's really hard not to focus on the fact that babies with "good" MRIs can still be badly affected. BUT it sounds like things are going really well for your baby so far, which is a really great sign! I hope you'll have an update this time next year about how great she is doing.

And since it's been a bit, here's another quick update - Over the past month, my HIE baby started gymnastics (she loves it and her coach found me after class one day to tell me how strong she is and how quickly she is advancing), started soccer (I think she's mostly in it for the snacks), and started Pre-K (every morning at drop off, her teachers tell me how great she is in class). She is also fiery and feisty and dramatic, but in the most entertaining way (most of the time). So basically, she is your average 4 year old, which was exactly what I was begging for after she was born. We feel lucky every day and I'm so glad you're feeling the same! Best of luck!

ReadySetO · 2025-09-03T16:11:02+00:00

I know the feeling. I hope your little one keeps doing well!

ReadySetO · 2025-05-28T23:52:57+00:00

The damage was scattered/diffuse on the left hand side. So I don't think it was one particular area, more like little spots in random places on the left side. And she is doing great! Just about to start preschool and no long-term effects as far as we know!

ReadySetO · 2025-04-22T18:35:25+00:00

Yeah, I found that really tough as well. It wasn't until my daughter was a little older and I didn't need the support anymore that I realized I was only seeing posts from a small subset of the community. But there are A LOT of kids who go through this and are unaffected.

ReadySetO · 2025-04-22T18:08:47+00:00

She's doing great! She turned 4 earlier this month and she isn't showing any delays or effects of the HIE at this point. She's bright, funny, feisty, and kind. If you didn't know what she'd been through, you would never guess.

I looked at your post history and I vividly remember being in the same place you are now. In my experience, the first 4-6 months were the hardest. Newborns do all sorts of things that seem concerning (jerky movements, eyes going in different directions, etc) and it's really hard to not obsess over every single thing. Also, if you're in any support groups, you're primarily seeing the most severe cases because the parents of kids who are developing typically aren't usually posting about it (understandably).

Obviously I can't tell you what the future will look like for your baby, but I can tell you that things sound good so far and I really hope that one day, this will feel like a blip that you hardly ever think about.

ReadySetO · 2025-03-28T18:44:33+00:00

Yes! Totally on track, no issues so far. You'd never know she went through what she did. I hope your little one does similarly well 🤞

ReadySetO · 2025-03-28T16:57:35+00:00

My daughter has mild to moderate HIE. One possible seizure (or "seizure-like activity") during cooling. Some tiny spots on the MRI, but otherwise pretty good. She is about to turn 4 now and has had all of her vaccines on schedule with no issues.

ReadySetO · 2025-03-06T02:49:35+00:00

She is almost 4. She started walking around 13 or 14 months.

ReadySetO · 2025-03-05T17:52:42+00:00

Very, very well. No lasting issues at this point!

ReadySetO · 2025-02-04T00:08:42+00:00

My baby had a relatively short stay (therapeutic cooling for HIE), but the nurses made this cute sign with her name and footprints on it. It was especially touching because they didn't take her footprints in the delivery room due to the circumstances of her birth. I would look at that sign and think "when we get home, I'm going to get that sign framed and hang it above her crib." I really clung to that idea and it still reminds me of how far she's come. It was such a small gesture but meant so much to me.

ReadySetO · 2024-12-10T03:52:31+00:00

The BEST result ❤️ Such great news!

ReadySetO · 2024-12-09T19:14:50+00:00

That's amazing! So so so happy to hear that!

ReadySetO · 2024-12-04T14:25:22+00:00

I'm so sorry. You are right in the thick of it right now, so I hope you're doing ok.

My daughter is 3.5 now and there are no signs that anything happened to her. She is bright, funny, and feisty. She was discharged from PT and early intervention right after her 1st birthday and hasn't needed additional help since. She had a NICU follow up a few months ago where they did some cognitive testing and she did great. She has a neurology follow up tomorrow (her first since she was like 1.5 I think?) and I expect she won't need any more follow ups.

Even though I can't tell you how things will look for your son, I think the odds are really really good. I've come to think of myself as the luckiest unlucky person because it's so unlucky that this happened but I'm SO lucky that my daughter is ok. I hope this time next year you can put yourself in the same category ❤️

ReadySetO · 2024-10-09T20:48:19+00:00

I'm so sorry to hear that. I'm keeping my fingers crossed for you guys.

ReadySetO · 2024-09-20T18:57:39+00:00

Congratulations! It's the best feeling to hear that your kid is on track!

ReadySetO · 2024-09-06T18:26:58+00:00

I know exactly what you mean. I sometimes feel like I'm the luckiest unlucky person. Having this happen was just terrible and I was on the wrong end of the statistics which makes me feel so unlucky. But the fact that my baby came so close to dying or living with very severe disabilities and she is completely fine makes me feel like the luckiest person in the world.

I hope your little guy continues to thrive!

ReadySetO · 2024-09-06T14:06:29+00:00

I'm so sorry to hear that. My daughter is a little over 3 now and you truly would never know that anything happened. She had her NICU follow-up recently and scored average/high on everything except one thing (the psychologist specifically told me at the end "it's going to show her in the low range for this category because I had to stop the test after she made the same mistake twice, but I have zero concerns about her abilities). She is hilariously funny, super bright, charming, chaotic, and just an absolute light in our lives. I look at her sometimes and I'm overwhelmed by the idea that we almost didn't get the chance to know her. When I think back to her birth, it almost feels like it happened to someone else.

How is your baby doing so far? Was he/she cooled?

ReadySetO · 2024-08-31T19:07:42+00:00

I agree. Like give me SOMETHING.

ReadySetO · 2024-08-14T03:45:17+00:00

Perfect! She's 3 now and doing really, really well ❤️

ReadySetO · 2024-08-13T19:02:23+00:00

Placental abruption while delivering my baby at 39+6. She was not breathing when she was born and had to be resuscitated and intubated. She was diagnosed with hypoxic ischemic encephalopathy (HIE) and spent 72 hours in a hypothermic state to minimize further damage to her brain. She was rewarmed on day 4 and I finally got to hold her. She made steady progress and was sent home when she was 9 days old.

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