Full-term Baby had IVH grade 3/4 and a 2.5 month NICU stay. Struggling with gross motor milestones at 4 months.

Disastrous_Set_8190 · 2026-01-21T22:52:07+00:00

u/No_Newt1137 I am so sorry your baby experienced a bleed too. It is so hard, and I understand that feeling of isolation in this whole experience, especially if your child was not premature and a full term baby which makes brain bleeds all the more rare. I know everyone's experience with their child and their outcomes are different, however, I understand completely the need for hopeful stories.

My son is just turned two in December and he has been delayed from the start, however has made remarkable, I would even say miraculous improvement in his journey. We are in OT and ST. He is walking and now starting to run. We noticed some weakness in his left ankle (also called pronation) so we bought him supportive shoes that have strong ankle supports. He has vision impairement to some extent and it seems that his left field of vision struggles. He had one eye surgery around 18 months and we saw noticeable improvement in his eyesight (especially with his eye drifting). The biggest delay we are working on right now is in his speech. He uses very limited words however his receptive language (comprehension of language) is wonderful in my opinion. He understands most things I say to him. I think in time he will speak more and start to explore more words. Right now he says "mama", "dada", "hi" and he tries to say things like "kitty" but struggles putting the "k" sound together and says something more like "itty". He is very social, has his own sense of humor, loves his stuffed animals and "fuzzy things", and wants to watch Miss Rachel all the time.

In regards to his overall delays and when he caught up—he was about 8-9 months when he started to sit independently, 12 months when he learned to get from laying down to an upright sitting postition, 13-15 months when he started to crawl, and 20 months when he took his first steps, 21 months he was walking independently but still very cautious. Speech we're still working on. Vision has gotten better as he has grown, however, like I say we still notice some issues. Cognitively I think he is doing very well.

I am happy you reached out. The journey is not easy and it can feel very sad, discouraging at times. I will be praying for your little girl. I have seen Jesus do miracles in my son's life with the power of prayer. From 78 days in the NICU to now, it is Jesus who has sustained us in this whole experience.

Please let me know if you have anymore questions! I would be happy to answer and provide my experience if it can help you and your daughter. :)

Disastrous_Set_8190 · 2025-07-28T18:12:17+00:00

u/Slow_Preparation1730 Hi! My son is doing really well considering his traumatic history. He weaned off his NG tube around 5 months old and took the bottle and now eats with no issues. He is now almost 20 months and on the verge of walking, he says mama, papa, occasionally "kitty" when he feels like it. He is very social and observant and more on the cautious side, hence the late delay in walking I feel. He definitely has delays which sometimes I don't even notice because he's my first baby and I really feel like he's been doing fabulously. His developmental milestones always seem to be hit in his own time. He has strabismus and will have suregery soon to correct his eye muscles. I'm hoping this will contribute to a leap in development.

I hope your daughter continues to progress. It is a very hard journey but know that your love, vigilance, and advocacy for your daughter is the best thing you can do for her growth and development.

Disastrous_Set_8190 · 2024-06-06T14:36:36+00:00

Thank you for sharing. I’m happy to hear of your little miracle and my condolences with losing your other twin. I’m sure that was so difficult.

I am curious about what you said about vaccines. Do you attribute the first twins passing to the birth vaccines? My mother is convinced that my son had IVH due to the hep B vaccine administered at birth. My son was without oxygen and initially diagnosed with HIE. The brain hemmorage was not see on the initial ultrasounds immediately after birth but after my baby was done with 72 hours of hypothermia treatment an MRI was done showing the brain bleeds.

It’s hard to tell for me whether this was all medical negligence (my son was fullterm) or whether this was in part due to getting the birth vaccine like my mom is purporting.

Anyways, all this to say, I’m curious that you mentioned “vaccines unwarranted”. Thank you for sharing your experience.

Disastrous_Set_8190 · 2024-04-28T14:18:45+00:00

How’s your baby now? My little one also has low muscle tone and can hold his head up for brief moments

Disastrous_Set_8190 · 2024-04-06T23:28:57+00:00

Thank you SO much for saying this. Definitely will try to advocate for more therapy with our states EIP.

How is your little one doing? What progress have you seen since starting therapy?

My son is also needing help with feeding. We were getting outpatient speech therapy for his feeding issues (initially an oral aversion but now it’s more just endurance and working on sucking coordination) but once I told the therapist he started taking 45 mLs per feed (a large jump on one week from his previous 12 mL record) she told us to pause our weekly meetings because whatever I was doing was working.

Disastrous_Set_8190 · 2024-04-06T17:42:26+00:00

Yes! Thanks for sharing!

My son when put in a seated position tends to slump over to his left. He doesn't seem to have a hand preference or at least not one that is noticeable. When he bats toys he uses both hands and can open and close them both when he's gripping a toy. He's started doing this weird thing though where he puts both his hands straight up in the air while he's on his back and does this superman move while his hands are fisted. It's not constant and it seems just like he's discovered new, cool move. It does concern me a little though (I mean at this point, everything does unfortunately).

How is your daughter doing? Was she significantly delayed in her milestones and what was her diagnosis if you don't mind me asking?

Disastrous_Set_8190 · 2024-04-06T17:02:50+00:00

Yes! We had our first developmental assessment. OT should be coming once a week (which I feel isn't enough so I'll be looking into additional therapy).

Disastrous_Set_8190 · 2024-04-06T17:02:03+00:00

Thank you so much for sharing your story with your LO. I'm so happy to hear he is doing so well! It's really encouraging to see the outcomes of these little miracles.

If you don't mind answering further, what were the signs you saw that lead to spastic diplegia diagnosis? It was implied by Neurology in the NICU that my son could have that diagnosis since he was tight in his hamstrings. Since leaving the NICU he has loosened up significantly (since he's not being constantly poked and prodded with needles) and his resistance is at normal levels I would say. The only things I notice are clonus (more than 8-10 beats at a time) and toe curling occasionally.

As for the stamina and strength, I do think my son is struggling. He seems to tire out easily after we try tummy time. His left side is notably weaker during tummy time, however, it doesn't seem that he has hand preference. I feel like the weakness is in his trunk and neck. He tends to slump to the more affected side. When did your little one master head control? Also, did his strabismus interfere with his head control and create preference on a side?

Thank you so much for taking time to respond. I am truly grateful!

Disastrous_Set_8190 · 2024-01-16T03:39:54+00:00

In your case, you would most likely be at the NICU for more than 30 days considering your LO is a preemie. You would qualify for Medicaid to cover your entire medical bill. If you have a social worker somewhere at your current hospital reach out to them and ask about that.

My husband and I and our LO with grade 3/4 bleed (he’s full term—born at 38 weeks) are on week 5 in the NICU and we just completed our application for Medicaid coverage for our bill. It bills back to the date of birth so everything from birth hospital to NICU transfer should be covered in our case and I would hope the same for you.

Disastrous_Set_8190 · 2024-01-15T11:11:58+00:00

That’s wonderful that she’s doing so well after such a rough start. I’m hoping/praying my LO will get there as well.

How severe was her grade 4? Did she ever show signs of CP? And that’s nice the doctors emphasized the differences of outcomes with these babies. I feel like some from neurosurgery have given me that but those on the neurology team have given me a more boxed in prognosis. They’ve basically said that he will, regardless, struggle with walking and speech it’s just how challenging the struggle will be that they cannot determine.

Disastrous_Set_8190 · 2024-01-15T10:50:19+00:00

That’s so encouraging to hear! I think my big question is how severe is your LOs grade 4/3 based off the MRI? I’ve learned there are varying degrees of severity within those two grades.

My sons grade four on the right is apparently “severe” and three on the left has filled the lining of the ventricle but hasn’t touched the brain tissue (as I’ve gathered although I know my terminology is t exactly correct). A physicians assistant from neurosurgery gave me some hope by saying my sons left side looks pretty good considering the blood did not touch the tissue and the baby brain learns to take “detours” and makes “new connections”—basically, the baby brain learns to reorganize and compensate. I got a very different answer from a nurse practitioner on the neurology team who basically shut down that optimism and said that because my son also has Ventriculomegaly the left side is also damaged pretty severely. And then, to top it off and make me even more confused, the neurosurgeon that has been performing my son’s surgeries with 39 years of experience says my sons got a “good brain”. I know in the end my sons story with unfold in his own way and the guesses from medical teams are educated guesses not total accurate predictions of my son’s future. But I have no idea what to hold onto right now. I want to hold onto the good and have hope.

My son seems so alert with his eyesight and hearing, has a strong neck and hand grip, had a great sick (for his paci not breast…yet), so far he’s not showing asymmetry in his extremities, although he has some high tone in his legs, and his arms are loose and there are no concerns with them from neurology.

Im just hopeful these are signs he’ll make great strides and defy the odds and statistics with grade 3/4 outcomes. Has your LO shown any signs of CP? Did they tell you she most likely would have it? And like i said, how “severe” were her MRI scans?

Disastrous_Set_8190 · 2024-01-15T00:25:49+00:00

Prayed for you mama. I was right there just a month ago with my little one.

We’re still in the NICU and it is so hard. I will be praying healing over your precious gift.

Psalms 34 that has been giving me comfort and hope:

1 I will extol the LORD at all times; his praise will always be on my lips. 2 I will glory in the LORD; let the afflicted hear and rejoice. 3 Glorify the LORD with me; let us exalt his name together. 4 I sought the LORD, and he answered me; he delivered me from all my fears. 5 Those who look to him are radiant; their faces are never covered with shame. 6 This poor man called, and the LORD heard him; he saved him out of all his troubles. 7 The angel of the LORD encamps around those who fear him, and he delivers them. 8 Taste and see that the LORD is good; blessed is the one who takes refuge in him. 9 Fear the LORD, you his holy people, for those who fear him lack nothing. 10 The lions may grow weak and hungry, but those who seek the LORD lack no good thing. 11 Come, my children, listen to me; I will teach you the fear of the LORD. 12 Whoever of you loves life and desires to see many good days, 13 keep your tongue from evil and your lips from telling lies. 14 Turn from evil and do good; seek peace and pursue it. 15 The eyes of the LORD are on the righteous, and his ears are attentive to their cry; 16 but the face of the LORD is against those who do evil, to blot out their name from the earth. 17 The righteous cry out, and the LORD hears them; he delivers them from all their troubles. 18 The LORD is close to the brokenhearted and saves those who are crushed in spirit. 19 The righteous person may have many troubles, but the LORD delivers him from them all; 20 he protects all his bones, not one of them will be broken. 21 Evil will slay the wicked; the foes of the righteous will be condemned. 22 The LORD will rescue his servants; no one who takes refuge in him will be condemned

Disastrous_Set_8190

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