- Pregnancy
- Baby & Toddler
- Parents
- Getting Pregnant
- Baby Names
- Product Reviews
-
Registry
- Community
-
More
Want a personalized experience?
Download the free app
Preemies
Anyone familiar with bleeds?
Our peanut was born at 24.3 and now is 26.1 . Had head ultrasound showing a small bleed in the right side of the brain hard to diagnosis as a 3 or 4. To make a long story short her second ultrasound had no change which was excellent newss. Met with neuro md today and he had postive feedback which was good. Said she may have a limp or weakness to one side . Too early to diagnosis. Or it may be worse. no one knows. Does anyone have any feedback RE: bleeds and outcomes? I'm praying with all my might that nothing increases. I'd enjoy any stories anyone Has and please keep us in your prayers!
This discussion has been closed.
Re: Anyone familiar with bleeds?
We are still very early in this journey but my daughter was born at 26+3 a month ago and she has a level 4 on the right and a level 2 on the left. She also developed hydrocephalus but so far has not needed surgery to drain any CSF. The bleeding in her brain matter on the right side has developed into pvl and porencephaly, which basically means that the tissue affected by the bleeds had died and turned into cysts. She will probably lose most of the right side of her brain. No brain matter is affected on the left side.
Her neo was very straight with us and let us know that the damage is severe and, although no one can tell us now what she will be capable of, she is certain to have problems such as cerebral palsy and/or impaired cognitive ability. He gave us the worst case scenario, which would be that she may never walk, talk, eat on her own, or be able to interact with us in a meaningful way, and presented the option to discontinue care. I think he had to do this, but it is not a choice we were prepared to make given the level of uncertainty.
We found the neuros are much more "we can wait and see" and though I wouldn't say they are more optimistic, they weren't the ones presenting us the option of discontinuing care. But that's not really their role, it is the neos role to think about her quality of life. I just say this to remind you to think of who you're talking to and what role they have in your daughters care.
Seeing as how right now, the brain bleeds are our Anna's only issue and she is not suffering, we will keep fighting for her and her care team is supportive. I have done a great deal of research on the subject, but the fact is, NO ONE will be able to tell you for certain how your precious little one will be affected in the long run. Right now, we are just taking it day by day! She gets weekly ultrasounds to check the status of the hydrocephalus and cyst formation, but once the bleeds stop that is usually the extent of the damage.
My 26 weeker had a grade 3 bleed on one side. I absolutely hated hearing about it and I was expecting the worst. It didn't help that I was using google as my resource to find out more about it. That is good that the neuro md had positive feedback about it. Preemies are much stronger than I ever thought they were.
For my son, it never got worse and it was closely monitored the whole 4 months we were in the NICU. He is now 4.5 and has shown absolutely no signs of being behind. Actually, I am a teacher and he is reading better than some of my first graders. DH's old boss had twins at 32 weeks (although this was 30 years ago) and only one had a bleed. The one who did not have a bleed was actually the one that ended up being delayed.
Keeping your LO in my prayers!
When my son was in the NICU and was diagnosed with a bleed the neonatologist told me she had seen Grade I's cause issues, and Grade III and IV's not cause issues. It is a guessing game this early. I think it is positive you are not seeing any changes. Praying for you and your LO that everything continues to stay stable.
Just a side note...When my son was little I started with early intervention very early. I truly believed this form of intervention helped, especially with gross motor skills. I think it is something worth looking into when the time comes. Today you would never even be able to tell that he was a preemie besides his scars. Good luck and keep positive.
My son was born at 35 weeks via emergency c section because an ob specialist found a bleed while doing a cord doppler ultrasound. The bleed was also hard to diagnose, grade 2 or 3. The NICU doc did not agree with the radiologis on which grade. The bleed cause hydracephalus, a mild case and he does not have a shunt at this time. The right lateral ventricle is much larger than the left and the nuerologist did tell us there is a possibility of cerebral palsy on the left side.
I have learned a lot about hydracephalus but I'd say one of the biggest things I've learned is that you just have to wait and see. There is no answer today and probably not tomorrow either. It's so hard to do but only time will tell. I can tell you that my son is doing far better than what we were told to expect right before delivery. The head ultrasounds showed no change in the bleed and fluid while he was in the hospital. He was monitored monthly with head measurements and ultrasounds. He had a ct scan done at 5 months and although there was not much change with the bleed, the fluid is not increasing at a rapid rate so it is able to drain somehow. He has to have an MRI next month.
My heart breaks for you as you have to go through this. I suprised myself at how well I handled the NICU and the overload of info that you are given. However, I am still dealing with the emotions of it. Please try not to google too much, you will only scare yourself. I will be praying for you and your baby as you go through this. I'd love to hear an update from you soon!!!
Chris