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ON OCT 15TH, MY WIFE GAVE BIRTH TO OUR SON, WHO WAS 2 MONTHS PREMATURE. AS IT WAS EXPLAINED TO US, WE WERE EXPECTED TO RIDE THE ROLLER COASTER. I AM FINDING THAT OUT NOW. SO FAR HE IS DOING GREAT, NO VENT TUBE AND NO O2 ONLY THE CPAP. WE JUST FOUND OUT THAT HE HAS A GRADE 4 BRAIN BLEED ON HIS LEFT SIDE OF THE BRAIN. I HAVE NO IDEA WHAT TO EXPECT, PLEASE IF THERE IS ANY FEEDBACK LET ME KNOW. HE IS 1 WEEK OLD.
Surgery Failure to thrive Falls GERD Hydrocephalus CPAP Anemia Cerebral palsy Stress
There are others who can help you with this better, but since you have no responses yet I can tell you some. My daughter was a 25 weeker who is 23 months old now. She was in the NICU for 183 days. She had many issues but only had a grade II bleed on the left and grade 1 on the right. She is globally developmentally delayed- she started walking at 21 1/2 months and she still falls a lot. But, she is wonderful, beautiful, intelligent and the light of my life. She has a very small chance of having mild CP from her brain bleed. I hope all the best for your baby.
thank you so much for your input. it is still sinking in and from what i understand only time will tell.
Wanted to share a bit about our DS's podmate (from the NICU). He was born at 27w 2d (our DS was a 27 weeker too). He had a Grade 3/4 bleed that required a VAD and later a shunt. Respiratory wise he was great, just needed a bit of O2 for a week or 2. Our DS had a lot of respiratory issues, he was in the NICU 4 months. His podmate was in about 3 months. Both DS and his podmate are now 19 months / 16 months old and are doing really well, hitting all of their milestones for their corrected age and some for their actual age
I am sure you are really scared right now, the NICU is such an unpredictable place. Hang in there and best wishes.
I wanted to share my story with you since when I was in the NICU almost 6 years ago I would have loved to have heard stories from those who were further down the road. My daughter, Katelyn, was born at 25 weeks weighing 15.5 oz and given a 5% chance to live. She was in the NICU for 159 days. She had a Grade I IVH on the right side, several lesions at various places, and a very large bleed that basically destroyed her left cerebellum. We didn't find out about the damage to the cerebellum until she was almost 3 months old because she wasn't stable enough for an MRI until that point (ultrasounds through the fontanel don't penetrate that deep into the brain). We were devastated and told about all the possibilities of her not walking, talking, having CP, etc. However, despite these things she has progressed beautifully and is doing wonderfully today. She is developmentally delayed and has some learning difficulties and suffers from very slight CP on the left side of her body, but it is hardly noticeable. She didn't walk until she was 3 or talk until she was 4, but you would never know that now at age almost 6 and later in life no one is going to be asking her when she started walking and talking. She is as smart as a whip. Early intervention made all the difference. We started early intervention as soon as she was out of the hospital and also supplemented with private therapy (ST & PT) as well. She still receives therapy (both at school and privately) today and it has made such a huge difference in her life. I cannot stress enough how important this is. If you would like to see a video of Katelyn check out the video posted at www.marchofdimes.com/katelyn (she is the 2009 National Ambassador). Life in the NICU is rough, but hang in there and take it one day at a time. I'll keep you, your wife, and your son in my prayers.
Our son was born at 26 weeks and had a bilateral grade III/IV brain bleed. His bleeds caused hydrocephalus and he needed a shunt/resevoir placed about 2 weeks after. He was in the NICU 79 days and it was a roller coaster. Someone just used an analagy about the roller coaster that I love. When you're standing in line and they tell you you're going to get on, it's a lot different than when you're at the top headed for the bottom. So knowing you're in for the ride, and going through it are two totally different things. There are so many unknowns about the outcomes of babies with brain bleeds. The brain is able to recover from a lot at this young age. Our son is now 5 months adjusted age and doing very well so far. He smiles constantly, yells for our attention when we walk out of the room, puts everything in his mouth, and acts like a "normal" 5 month old baby. He is followed by early intervention services and a visiting nurse as well as his nerologist and neurosurgeon all to catch problems early if they arise. Get informed, try to stay positive, be a strong team, and enjoy your new little boy.
Two of mine had leved 4 bleeds. They are 8months old now and doing great. We were told that our boy most likely wouldn't make it and if he did would have a high high chance of cp. No cp has been dianosed with either yet (they are still kinda young to tell) however they do show small delays physically. I don't have time to write a ton more but feel free to check out our blog at www.coxquads.blogspot.com to read more. You can click back to Feb when they were born to see how we coped with 3 month preemies. Hope it helps.
Congrats and don't give up on that precious baby :)
and feel free to write and/or ask questions should they come up!
Thank you for all your help and encouragement. i am thinking very positive about this and hoping for the best. i do understand the worst too. So far he has amazed all of up and at day 8 he is on a cpap with no 02 and is now eating milk. I found out this morning that he is now in his own little baby condo and out of the open heat lamp. a small victory and i will take it. i will see him later and tell him again that i am very proud of him and to keep up the good work.. Thank you again
My son had bilateral grade IV IVHs. He has hydro and a shunt. We were given a very grim prognosis for David, but he is doing better now than we ever dreamed. He is by no means unaffected by the bleeds. He has CP and other developmental issues, but he is an amazing, happy, loving, funny child. He is almost 3. You can check out his website chronicling back to his NICU release date.
www.caringbridge.org/visit/davidlang1.
Hi. My daughter suffered grade 3 IVH aside from the bleed was born with feet deformities, all of which have caused significant motor skill delays. She is cognitively on track and her pediatrician says she is acting like a typical 18M old.
There are lots of IVH kids that have surpassed everyones expectations! My daughter's ENT said he has a patient who suffered a bilateral 4 bleed who is playing football in high school :)
Cathy
First and foremost congratulations on a precious baby boy!
My Ava is a former 29/30 weeker (depending on who you ask) currently 30 months old. She was vent dependent forever and had a rough run of it in the NICU- anemia, PDA wouldn't close, ROP, transfusions, GERD, Failure to Thrive. Her bleeds weren't diagnosed until her delays became significant. The ultrasounds in the NICU showed no bleeds, but as someone else noted only an MRI shows the deeper bleeds and you have to wait on those. Ava has PVL from the bleeds, a thin corpus collasum and hypotonic hemiplegic CP. BUT! Thanks to all the hard work from therapists and the family she is fully functioning- walking, talking, using both sides equally to the untrained eye and has managed to stay away from feeding tubes, etc. She looks 100% normal (if there is such a thing) and although she suffered everything the NICU has to offer except NEC - she is healthy, happy and constantly surprising us with her intelligence. She wears low profile AFOs that are hardly noticed and loves them because she can now kick balls really far! She climbs everything and runs, skips, dances and even speaks in complete sentences using multi-syllabic words. Really, she's too smart for me some days. Just goes to show you that these babies have amazing capacity to heal.
My advice is simple- educate yourself enough to be an advocate but don't scare yourself with too many "what ifs" or definites. Your son is beautiful! Good luck and we're here for you.
Rhonda
Just 4 days ago I gave birth to two beautiful baby girls 25 weekers. Yesterday I was told that one of my girls has a grade 3/4 bleed. I was scared but thanks to your story you make me more at ease and give me hope that with faith everything will turn out ok. Thank you so much
I am little late here, but I wanted to welcome you to the site. Congratulations on the birth of your son!! Please keep us updated on your son's progress!! Good luck!!
My daughter was born at 25 weeks and is now 7 weeks old. Since birth she's had a grade II on the left and a grade IV on the right. It is just starting to absorb. No signs of hydrocephaly.
so far so good. a lot has changed over the past couple of weeks. sorry for getting back so late.. well after the doctors reread the results of the ultrasound, they declassified the grade 4 brain bleed to a venus bleed. the second ultra sound showed that the bleed had gotten smaller. great news. as for my son's progress. he is doing awesome, he is 4 weeks old and has gained a pound and is soon going to be off the iv. thank you for all your stories and encouragement. it made me stronger for my wife and son.
Hi there!
Congrats on your baby! Here's our story. :)
My little girl Sophia was born at 26weeks. She is now 5 months (2 months corrected). She had a IVH, grade 3 on the left and grade 3 on the right, after she had heart surgery to have her PDA (heart valve) repaired. When the Neonatologist brought me into her office and told me the news, it was THE worst day of my life. She told me that this was the worse case senario. She told me that her recommendation was to quit life support. Sophia was still intubated after birth. She told me that she has a 95% of having cerebral palsy and will have problems walking, talking and cognative abilty.
I went back to Sophia's bedside, just looking at her, crying. I thought I was loosing my baby. I drove home and told my family the news. We all got together and went back to the hospital to sit with her. There were 6 of us at her bedside..only 2 are allowed.....lol. While sitting there the head Neonatologist came to speak with us. He said "let's not make any hasty decisions, and talk in a few days". The next day they were able to extubate (take out the breathing tube) her. She was was put on a CPAP and was mostly breathing on her own!!! I decided not to stop life supprt. Sophia wasn't giving up so I wasn't going to either.
The next week she was seen by the Neuro-Surgeon. He told me yes this is the worse bleed possible. BUT, some children who have these types of bleeds grow up to be completly normal. He told me even if we get an MRI to see the amount of damaged brain matter, you still can't tell what, if any problems she'll have. He said, we can see a lot of damaged brain, where you think this poor kid will have lots of problems, and they are 100 normal. Or you can see a healthy brain and that child has problems. He told me if someone tells you that a certain child will have these problems for sure, they are lying to you. He said that even in some cases the ventricals will come back to the original size, after the blood clots have resolved, and start functioning again on their own.
Sophia has had 3 surgeries for this problem (6 total) and is developing normally. :)
I also met a little boy the other day who is 5yo. He had a grade 3 and 4 bleed. He still has a shunt. By watching him I could never tell he has any problems. He does get PT and OT but that has been what has helped him.
I'm so happy that I decided to listen to myself and not give up on Sophia. She's my miracle baby. Please listen to yourself and stick to it. Again congats on your baby!
Ashley & Sophia
aplus67,
I couldn't help but read your story and watch the video of your precious Katelyn.
Your story has given me hope for my own daughter.
I couldn't help but cry when I watched your little Katelyn on the video, what a bright and beautiful little girl!
I think what you and your husband and Katelyn are doing is remarkable and I wish you all the best of luck!
Our twins were born at 24 weeks.
Baby Girl had a Grade 3 on one side and Grade 4 on the other. She had a VAP and then a shunt before she left the NICU. The day before she left, her ultrasound showed both hemmorhages resolved, no swelling of the ventricles and a "normal" brain scan. We meet with her nurologist on the 13th.(she was just released after 120 days 2 days ago.
My only advice...STAY AWAY FROM THE STATISTICS!!!!!
All babies are different and if I believed all the stats for babies born at 24 weeks, I'd go crazy.
Babies are stronger than any grown folk...
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