grade 4 bleed

Hello, my name is Tonia. I had my little baby girl on jan.30th at 24 weeks. she had a grade 4 brain bleed. Althought I have been given my baby's possible future, I insist on fighting for her life. She has been on and off the ventilator and the doctors say its due to her brain bleed. Does anyone else have or have had this problem. Has the baby grown out of the apnea or

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congratulations on your baby girl ! my daughter and your daughter share the birthday besides my daughter was born in 08. i would say keep fighting for ur daughter and put it in gods hands for what her future holds.

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On and ofof ventillator due to her brain bleed??? My baby was born at 24w2d and had a Grade 2 brain bleed on one side.....She was on hi fir for 5 days, ventillator for 4 weeks. and is now on CPAP for 5 days....In the begining it was her lungs were not developed, then the only think keeping her on the vent was her A's and B's which is very typical of preemies....I am not sure if your bleed is bliateral, and I am not a Doctor, but if shes a rue 24 weker her lungs would most likely not be mature ebough to breathe on her own....I would do a llot of research and read other 24 weeker stories....do a search on this forum for "24 weeker"

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I meant to say........

but if shes a true 24 weeker her lungs would most likely not be mature enough to breathe on her own....I would do a llot of research and read other 24 weeker stories....do a search on this forum for "24 weeker"

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I agree with others, my son had no brain bleeds and was on and off the vent numerous times. That's part of it, one step forward and two steps back..... seems like you are going backwards but it's really slow progress, they push them and then they need a break. I just looked back at Carter's history:

High five vent - a week
vent - three weeks
CPAP - one week
Back on vent - two weeks
Nasal canuala - one week
Back on CPAP - one week
Nasal canula - rest of nicu stay (and came home on o2)

Hope this helps!! Erin

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Toni:

I would say do everything you can to help her survive. Never give up hope! She may be one of the miracle stories. I hope, I hope, I hope. I will say a prayer for your angel this evening.

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My daughter had a level 3 bleed and PVL but they never said anything about it impacting her breathing or her status on the vent. She was 25 weeker who was on a vent for 6 weeks followed by CPAP, high flow oxygen and finally regular oxygen which she came home on.

Have they done more than one head CT? I think that we had three during our stay. The first showed a level 1, then the level 3 and PVL and the third showed the recession from the level 3.

The biggest problem that we had in getting information about the brain bleeds and the PVL is that they cannot really tell you what is going to happen in the long run because they cannot tell exactly how much of the brain or what part has been impacted. Babies brains are amazing, since they are still pliable, they can overcome challenges that an adult wouldn't be able to. It is my feeling that they like to give the worst case scenarios to parents so that you are prepared for the worst but, miricles do happen. Our daughter is two now and you would never know by looking at her what she has been through. We have been involved in Early Intervention since she came home, first with PT and OT, then with a teacher and now we are going to start speech but that has more to do with fluid in her ears than anything else.

We will keep you and your baby in our prayers.

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congrats on your new baby girl!
Hi im chrystal. i had my baby boy at 26 weeks and he had a grade 3 brain bleed.
Just try not to listen to the "bad" possibilities this could bring, because it will drive you crazy and bring you down. Gavin was on the ventilator twice, and on high flow most of his stay. stay strong i know its a scary thing. my poor baby was gaging every few min. Gavin also had some seizures due to the bleed. eventually they will grow out of the apnea, and sometimes they can go home on oxygen. we were at the hospital for 80 days and after 3 weeks of being home he quit breathing and i had to do CPR on him. we went back to the hospital for another 7 days.
If you have any questions at all let me know. I really do understand your frustration and being scared. The situation really depends on your baby's body. so you gotta stay strong and wait it out.
as of now gavins body is absorbing all the blood and the swelling has gone away. and has had no more seizures since leaving the hospital. he seems to be doing excellent. i will keep your family in my prayers

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My son is a former 26 weeker with grade IV and grade II brain bleeds, he was off and on the vent, CPAP and even came home on oxygen and monitors. I was never told that his breathing problems had to do with his brain bleeds. I know first hand all of the grim outlooks they will give you, we chose to work super hard with our son and give him every chance to overcome his brain damage. He was involved in early intervention since he came home from his 80 day stay in the NICU. He is a healthy two year old, and unless you were a pediatric therapist you would never know what he has gone through. He walks, talks, runs...though he is a bit more wobbly than the average kid...he holds his own. He does have chronic lung disease which slows him down when playing, but even that continues to improve all the time. I hope that this offers some hope to you, Best of luck to you and your sweet baby girl!

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grade 4 bleed
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By babyinmay
Posted March 6, 2009 at 10:02 pm · 9 replies
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Recommend Print Report post Hello, my name is Tonia. I had my little baby girl on jan.30th at 24 weeks. she had a grade 4 brain bleed. Althought I have been given my baby's possible future, I insist on fighting for her life. She has been on and off the ventilator and the doctors say its due to her brain bleed. Does anyone else have or have had this problem. Has the baby grown out of the apnea or

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Oldest first Newest first By Angel13008
Posted yesterday at 5:02 pm
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congratulations on your baby girl ! my daughter and your daughter share the birthday besides my daughter was born in 08. i would say keep fighting for ur daughter and put it in gods hands for what her future holds.

Reply By chloej
Posted yesterday at 8:53 pm
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On and ofof ventillator due to her brain bleed??? My baby was born at 24w2d and had a Grade 2 brain bleed on one side.....She was on hi fir for 5 days, ventillator for 4 weeks. and is now on CPAP for 5 days....In the begining it was her lungs were not developed, then the only think keeping her on the vent was her A's and B's which is very typical of preemies....I am not sure if your bleed is bliateral, and I am not a Doctor, but if shes a rue 24 weker her lungs would most likely not be mature ebough to breathe on her own....I would do a llot of research and read other 24 weeker stories....do a search on this forum for "24 weeker"

Reply By chloej
Posted yesterday at 8:55 pm
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I meant to say........

but if shes a true 24 weeker her lungs would most likely not be mature enough to breathe on her own....I would do a llot of research and read other 24 weeker stories....do a search on this forum for "24 weeker"

Reply By elizabean
Posted yesterday at 11:18 pm
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I agree with others, my son had no brain bleeds and was on and off the vent numerous times. That's part of it, one step forward and two steps back..... seems like you are going backwards but it's really slow progress, they push them and then they need a break. I just looked back at Carter's history:

High five vent - a week
vent - three weeks
CPAP - one week
Back on vent - two weeks
Nasal canuala - one week
Back on CPAP - one week
Nasal canula - rest of nicu stay (and came home on o2)

Hope this helps!! Erin

Reply By FrancescaHolly
Posted yesterday at 11:26 pm
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Toni:

I would say do everything you can to help her survive. Never give up hope! She may be one of the miracle stories. I hope, I hope, I hope. I will say a prayer for your angel this evening.

Reply By mom21
Posted today at 1:38 pm
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My daughter had a level 3 bleed and PVL but they never said anything about it impacting her breathing or her status on the vent. She was 25 weeker who was on a vent for 6 weeks followed by CPAP, high flow oxygen and finally regular oxygen which she came home on.

Have they done more than one head CT? I think that we had three during our stay. The first showed a level 1, then the level 3 and PVL and the third showed the recession from the level 3.

The biggest problem that we had in getting information about the brain bleeds and the PVL is that they cannot really tell you what is going to happen in the long run because they cannot tell exactly how much of the brain or what part has been impacted. Babies brains are amazing, since they are still pliable, they can overcome challenges that an adult wouldn't be able to. It is my feeling that they like to give the worst case scenarios to parents so that you are prepared for the worst but, miricles do happen. Our daughter is two now and you would never know by looking at her what she has been through. We have been involved in Early Intervention since she came home, first with PT and OT, then with a teacher and now we are going to start speech but that has more to do with fluid in her ears than anything else.

We will keep you and your baby in our prayers.

Reply By ILoveGavin
Posted today at 3:44 pm
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congrats on your new baby girl!
Hi im chrystal. i had my baby boy at 26 weeks and he had a grade 3 brain bleed.
Just try not to listen to the "bad" possibilities this could bring, because it will drive you crazy and bring you down. Gavin was on the ventilator twice, and on high flow most of his stay. stay strong i know its a scary thing. my poor baby was gaging every few min. Gavin also had some seizures due to the bleed. eventually they will grow out of the apnea, and sometimes they can go home on oxygen. we were at the hospital for 80 days and after 3 weeks of being home he quit breathing and i had to do CPR on him. we went back to the hospital for another 7 days.
If you have any questions at all let me know. I really do understand your frustration and being scared. The situation really depends on your baby's body. so you gotta stay strong and wait it out.
as of now gavins body is absorbing all the blood and the swelling has gone away. and has had no more seizures since leaving the hospital. he seems to be doing excellent. i will keep your family in my prayers

Reply By goodyear_girl
Posted today at 4:58 pm
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My son is a former 26 weeker with grade IV and grade II brain bleeds, he was off and on the vent, CPAP and even came home on oxygen and monitors. I was never told that his breathing problems had to do with his brain bleeds. I know first hand all of the grim outlooks they will give you, we chose to work super hard with our son and give him every chance to overcome his brain damage. He was involved in early intervention since he came home from his 80 day stay in the NICU. He is a healthy two year old, and unless you were a pediatric therapist you would never know what he has gone through. He walks, talks, runs...though he is a bit more wobbly than the average kid...he holds his own. He does have chronic lung disease which slows him down when playing, but even that continues to improve all the time. I hope that this offers some hope to you, Best of luck to you and your sweet baby girl!

Reply By lalacakes
Posted today at 9:25 pm
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My son was born at 26 weeks and had a bilateral bleed, grade III/IV and as a result developed hydrocephalus and has a VP shunt. He has some breething difficulties in the NICU at first but nothing too serious. My son is now 15 months old adjusted, 18 1/2 actual and while he does struggle with some of his gross motor skills he is still an amazing little boy. He can't walk yet but we work with him all the time. I would never give up hope on your little baby! I have refused to focus on the negative because if there are things Jacob cannot overcome I will still love him just as much as I do now. The doctors are amazed at all he can do and that is such a great thing to hear. Jacob is an identical twin - his brother Samuel died when he was 2 days old. When they were born I was so scared...about everything...about losing them, about them surviving and having serious side effects from their severe prematurity but more than anything I wanted them to live. After Samuel died and Jacob has his bleed I new I had to help him fight and I prayed for him all the time. It seemed to at least help me because I felt like I was helping him just by asking for help. I will pray for you and your daughter. Stay strong and stay positive!

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my niece was born March 3, 2009 at 26 weeks and 1 lb 12 oz. She was diagnosed on Friday with a level four brain bleed on both sides of her brain. The NICU doc recommended to my sis and her hubby to take her off the vent because she would most likely have CP and other compications and poor quality of life. My sister told the doctor that she would not do any such thing and that we were believing God to preform a miracle in her baby. Thanks for you encouraging post, the doctors and nurses in the NICU really don't say anythign positive at all. This is really helpful. What is early intervention and how can my sister find out about this? Also the NICU doc hasn't even called in a Neurologist yet...is that normal?

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hello thanks everyone for the support. My baby is back on the ventilator and doing much better. Aunties baby, as for your question about the nuerologist, A nuerologist wasnt even mentioned to me untill a week ago when she turned one month old and she was off the ventilator. I was relieved that instead of someone giving me bad news, Finally someone was giving me some hope. If I were you, I would ask the babys nurse or doctor when you will be seeing one. Dont be afraid to speak about your concern.

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Dear babyinmay,

I think my earlier post got messed up somehow so I am reposting it below:

My son was born at 26 weeks and had a bilateral bleed, grade III/IV and as a result developed hydrocephalus and has a VP shunt. He has some breething difficulties in the NICU at first but nothing too serious. My son is now 15 months old adjusted, 18 1/2 actual and while he does struggle with some of his gross motor skills he is still an amazing little boy. He can't walk yet but we work with him all the time. I would never give up hope on your little baby! I have refused to focus on the negative because if there are things Jacob cannot overcome I will still love him just as much as I do now. The doctors are amazed at all he can do and that is such a great thing to hear. Jacob is an identical twin - his brother Samuel died when he was 2 days old. When they were born I was so scared...about everything...about losing them, about them surviving and having serious side effects from their severe prematurity but more than anything I wanted them to live. After Samuel died and Jacob has his bleed I new I had to help him fight and I prayed for him all the time. It seemed to at least help me because I felt like I was helping him just by asking for help. I will pray for you and your daughter. Stay strong and stay positive!


Dear Auntisbaby,

My son never had a neurologist come in and he suffered a bilteral grade III/IV bleed. A grade IV bleed can vary so much because what it means to have a grade IV bleed is that the blood left the ventricles and entered the brain matter. The only thing I remember them doing repetitively was the ultrasounds. Jacob developed hydrocephalus and was shunted so I think the ultrasounds were all to watch the fluid in his head as well as to monitor for any more bleeding. I know how doctors words can hurt. Before being admitted to the hospital we were in a group meeting with a NICU doctor, a social worker, our high risk OB and a few others and the NICU doctor told me one of my twins had a 1% chance of surviving. That number was all I could focus on while I was in the hospital. I lost my ability to hope for a miracle. I was graced with 36 hours with that precious baby and I am forever grateful. I hope your sister and her husband will not be discouraged by what the doctors told them. I really do believe that miracles do happen! I wish more than anything they could have happened for my son but he was just too tiny and too sick. I will pray for you and your neice and her parents.

Early Intervention is something that each state has (it is sometimes called something different in other states). If there is a child that is falling behind in their milestones (there has to be more than a 25% delay - at least that is the way it is in PA) Early Intervention steps in and provides the appropriate therapy. My son currently gets physical and occapational therapy through Early Intervention. The person that told us about it was the hospitals social worker. I am not sure how it is found otherwise...does your sister have a pediatrician yet? A pediatrician would be able to give the number for it. You could call any pediatrician and ask for the number. It is best to get them is place as soon as possible. My son came home in Nov. 2007 and began therapy in Jan of 2008. He was diagnosed with mild CP last August.

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My grandson was born in December 2008. He has a grade 3 IVH on the left side and grade 4 on the right. They tried to take him off the vent twice and both times went back on it. The Doctor did say it may have to do with the fluid build up on the brain, he had a resivor that had become infected, had it removed and a new one put it. They said he had a 80% chance of brain damage and the part of the brain that told him to breath could be affect. He is now off the vent, being bottle feed ( something else they said he might not do) and is alert. The doctor still says he lost a lot of his brain mass due to the bleeds and the fluids. But we have hope, they also said they were surprised how well his head was growing, something they didn't expect. I have to keep reminding myself that Doctors are not the end all, they do not have all the answers. Leave it in the hands of God, expect great things. I will be praying for you and my little Brayden. This is the newest picture of Brayden, off the vent!!

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wow brayden is too cute. I cant wait to see my little baby girl with no tape all over her face. Im so happy for all the support that everyone has given me I will pray for all the little babys

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hi there i had a baby boy born at 24 weeks he suffered a grade 4 interventricular haemorrage and subsiquenteley deveolped post hemmorragic hydrocephalis and his head expanded from 26 cm to 43 cms he had 2 third venriculostomys an omeya resoviour and none worked he then had a ventricular peritnaol shut inserted and since then his head has stabablised!! due to my sons brain injury he has developed seveare epilepsy he is now nearley 9 moths old but corrected hes 5 months he cannot sit or hold his head up or do ne thing that a 5 month shud be doing he is also now showing sighns of left sided hemiparesis !! my advice to everyone is that no one baby ios the same as anouther all of our babys are an equal and develop differntlety !! my son was in hospital for 6 and half months whilst anouther little girl who suffered the same condition as my son stayed in hospital 4 months and has no sighns of any disabilitys or complications due to her bleed so please dnt judge ur child by anouther he/ she will develop the way they were ment too how ever it may be they are still beautiful and speciel it is hard being a mom of a disabled child but u kow what god gave us these speciel children for a reason and no we dnt know of that reason but im glad he gave me my son and im going to wenjoy every minite of him while ive got him because i have no idea how long ive got him for or when god will decide to take him bk !! love and cherish ur babies weatehr they healthy or not because they are speciel xx

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hello i have a 5mth old daughter after waiting 10yrs to have anther bby and she have a stage 1 bleed and have all the same problems your bby is having and she is back in the hospital and nobdy can tell me my daughter future they are sayin she has cp she has all kind of stuff her future is nothing then her future is something i have heard a million stories. if u would like to talk contact me and i will love to touch basis with you.. and u r n my prays

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My 25 weeker twins both had bleeds- daughter Gr IV both sides, son Gr III one side, IV on the other. They were both back and forth on the vent, but no one ever blamed the bleeds... micro-preemies have immature lungs along with every other body part!
My profile pic is my daughter Aeva, who ended up needing a vp shunt and also a tracheostomy tube- NOT because of the bleed! Well, the shunt was, I meant to say the trach was NOT.
My son came home after 4 months of NICU without oxygen or any other meds, and he was the twin that had a pulmonary hemmorhage as well as the IVH. To look at my twins now you would never guess what a rough start to breathing on their own they had! HTH, good luck to you and your LO

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My daughter had a grade 4 bleed on the left side. It has resolved to a 3 in a month. Our doctors told us that since she was born so early (25 weeks) that the other parts of her brain can compensate for any damage if any the bleed caused. I will be praying for you and your baby.

Susan~
http://www.caringbridge.org/visit/lilyanaknapp

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