Grade 4 Massive Bleed

my daughter had grade 2 on one side and 4 on the other. she is currently 9 months old (5.5 adjusted). we also were told that she has high risks of cerebral palsy, mental retardation, etc... and was asked several times if i wanted to withdraw life support. as a result of her bleed, she developed hydrocephalus which resolved without a shunt, and she also developed PVL which is when cysts form as a result from the bleed and kill the brain tissue.

even the day my daughter was discharged the neonatologist reminded me of what her quality of life may be.

Let me tell you... as of right now we are in occupational therapy once a week.. and are waiting on the approval for twice a week. we also see an infant dev. specialist once a week. we just had a NICU follow up, and rachael is all caught up on the growth chart. she is "poky" in her gross motor skills but definately improving. if you look at her you would never know how rough her start was. right now she is not showing any signs of CP. she is hitting her milestones slower, but she's getting there. she coos, and is trying to sit up on her own. and she thinks everything is funny!

just remember the doctors have to tell you all the worst case scenarios.. they may come off as cold and cynnical... but they are doing their job. the hardest part of the bleeds is you don't know how it is going to affect your child. stay strong.

I'm sorry that you're facing brain bleeds in your preemie adventure. News is never what you prefer to hear, but I'm sure that mom's love will overcome whatever the grade 4 bleed brings to the table. Keep us posted...
Tracy

My son was born @ 26 weeks 3 days, and spent over 3 months in the NICU. I remember the day clearly even though other memories seem to fade. It was on the third day we were told my son had a grade 4 on one side and 2 on the other. Of course the Dr. told us the statistics, cerebral palsy, mental retardation, developmental delays. It took weeks for it to sink in. He came home in May of 07, he is now One (9.5 months adj) and is doing well. He is pretty much on track with milestone for his adjusted age. He has slight tightness in his right leg but we are told that is to be expected from just being a preemie along with everything else. He is seen by a therapist once a month. We do stretches on his legs twice a day, and make it a point really encourage him and get down to his level to play. He does have some issues with eating, but we are working on that. Just remember every child is different (I was always told that over and over). The key thing for me was to remember to focus on the positive and what can be. I only envision my child doing well in the future and but at the same time try to be realistic with the situation and so that I am prepared for anything that he needs help with in the future.

My grandson was born at 27 weeks. Only 2 lb 4 oz and he suffered a grade 4 bleed on the right side. Right now he is one month shy of his second birthday (1.3 year adjusted age) He just learned to sit and is creeping on the carpet. He does have some issues with his left arm but he is working real hard with his theripist. He will receive braces on his leg because he has very low muscle tone. And yes doctors told us also all that horrible stuff to. But, now my grandson says about 20 words and signs about 13. And he is very smart and has this wonderful personality I wouldn't want him any other way.

First off.. congratulations on your new baby. I had twins born at 23 weeks. My son passed away from a massive bleed but they did not catch it in time nor did they try to insert a shunt. He was so little that I think they did not find it important to put him through all of that. My daughter survived and is now 18 months old. She did not have a bleed; however, we spent 10 months in the NICU. WE met many families who did have children with bleeds. I have seen a few who did not survive and I have heard of many who did and have certainly overcame what the doctors have told them. I know of 24 week twins who both had grade 4 bleeds and are completely normal at 2 years old, it did take a little longer to hit the mildstones, but who cares. I believe that God certainly has a plan for your life and he is with you every step of the way. Seek his guidane. I believe that a mother knows the right decision to make and only she and the father can make it because they have to live with the decisions. Go with your gut. If you believe that your child can make it and do well then just keep believing in that and press forward. I wish you all the best.

P.S the doctors said that barring a miracle my little girl would never survive due to lung issues and that her heart would also give out. She is currently on a trach at home looking to lose it this summer. She is developing fine and her heart is in perfect condition.

KIm

My grandson is now 4 Years Old and was born with a Grade 3 Brain Bleed. Doctors also told us the worst case scenarios....learning disabilities...cerebral palsy, etc. We panicked and expected the worst. Guess what! He started early intervention immediately...speech, OT and PT. They just tested him in pre-school and he scored over the top on speech and so no longer needs it. He has some fine and gross motor skill issues but will continue with the OT and PT for another year. He is running, jumping, climbing, laughing, and doing all the normal toddler things. He is a joy and trys hard at everything he does. Fight for as much services as you can get him...the more help he gets...the better for him. Every child is different and develops at a different pace. He will eventually catch up.....Dont fear the worst because of what the doctor said. Remember, they have to give worst case scenario...it's very scary...i remember that feeling well. Hugs to you.

Yes as Every one Sli said Every child is different My son Isaiah Had IUGR He was Bron at 31 weeks and weighed in at 1 Lb 6 I was tolled from the 20th Week of Pg That mo son would have brain damage Due to the lake Of nutirton and Oxgeyn in Utro But Guess What Hes now 2 and walking running talking a little Developmentally delayed in some spots Still on a feeding Tub But Is a normal 2 year old And Drs All ways Have to give you worst case scenario.. My son did not have any Bain Bleeds But He did Have Spinal Menenjites And was all so tolled that Would Contribute to brain damage But Hes so Fare dose not have any sings of it hes Normal Dr just have to go on that they and hope for the bes. you are Your child's mother You know them Best.

Our granddaughter was born at 23 wks weighing 1 lb. 9 oz. She had a gr 4 bleed in the back left and then a gr 2 in the front right. We too were told that she would have CP and mental retardation. Abbi just had her first birthday on Valentines Day (8 1/2 mos. adjusted). She has a shunt due to the first bleed. We haven't seen any signs of CP or mental retardation. She has low muscle tone but from what we've heard that is not uncommon in preemies in general. Always remember, the doctors have their opinions but God has His plan. Pray every day over your little miracle for protection and healing. Congratulations and good luck!

Hi-- My name is Sarah and I was a micro-premiee born at 24 wks in 1985 and weighed 17 oz. I too had a grade 3-4 brain bleed and am now graduating from college with a major and minor. I'm telling you this because my parents were also told that I would most likely have mental issues and not be doing too well in school (Cs and Ds). In short, Abida, hopefully your child will also prove the doctors wrong. The only result of my BB on my right side (affecting my left) was that I have developed a mal-formed left hip due to extreme right-sidedness. but after therapy I got through it. In general, I also took a few months longer to hit the 'milestones' but I'm fine besides needing glasses. I just wanted to write and attempt to offer some hope to you in your situation. All I know is that my mother read to me and stimulated me intellectually etc. I wish the very best of luck for you and your baby.

Oh Sarah, thank you so much for sharing your story!! You are going to give many others hope and inspiration here at SHARE!!
You are an AMAZING young lady.
Thank you again.

All my best and welcome to SHARE.
Colleen

My daughter was born at 24 weeks, 0 days. She had a grade III brain bleed. We were told the same possible outcomes. Alexis is about to turn 2. She has had developmental delays - but that is it. No CP - no indication of anything other than delays. For her it just has taken longer to get the strength to sit up, stand, walk etc. She is now walking, running, and functioning as a normal 19 month child would be. Please keep your faith & know that anything is possible. You would not know to look at my daughter that she had any problem whatsoever. Miracles happen. Congratulations on the birth of your miracle child!

Hi My son had the same thing he had grade 4 bleeding on both sides. H e had got a shunt put in twice and they told me he wasnt going to be able to walk,talk or maybe breathe on his own but you never know. My baby boy Jayden is passing away because of the bleed and the hydrocepholus is getting worst. He also has a infection in his brain and they arent able to put a shunt in. I am just so upset and terrified I am going to miss kissing him hugging him,smelling him and holding him I tell him I love him everyday. I didnt want to go through this at first he was doing good and now this I dont know what to do. Good luck to you

my son sam was born at 24 weeks he weight 1pound 7 oz he also had a grade 4 bleed he is 3 now he rolls on the floor and tries to talk he has CP in his back but his legs and arms work great he is slow learner just put ur faith in god they said he would be a do more than exist just have faith

I have a Grandson that was born at 26 weeks and had a grade 4 brain bleed on both sides of his brain. The Dr. said that this was less common for a 26 weeker. We heard the same story with some nurses that were just in your face saying "you need to make sure that your son knows that this baby will never be normal". There was one Dr. that was more reassuring saying that they just don't know. He could have undetectable disabilities or more profound CP and may not be able to care for himself or to communicate. So we knew from him that there was a possibility that he could be okay. We are LDS and my husband gave him a blessing and I just didn't feel a strong sense of concern...I had a strange sense of peace...that he would be okay, which seemed strange to me at the time especially after seeing his brain scan and seeing that his body had absorbed about 1/4 to 1/3 of his brain...startling to say the least.
My darling Grandson just had his first birthday...I have a fabulous picture of him with a fork in each hand and frosting everywhere. He crawls all over the place and laughs like crazy...he is slower at meeting his milestones...but he will get there...he has an older brother who will be 2 at the end of April that was born at 32 weeks and he was slightly slower as well but has met all of them with only early intervention during his third and fourth month.
He has occupational therapy 1 - 2 times a week...please remember that the therapy is very critical!!! These babies will not get there on their own...they need extra help to make their milestones. I feel peace for his future. Even if he doesn't develop much past where he is now (which I am sure he will) he is HAPPY, HAPPY, HAPPY...and an inspiration to all of us!!!

P.S. I am sooo happy to hear of all these miracles...that there are more families out there besides ours enjoying theirs.

I just gave birth to my son, Andre' Jamaal Morris at 22 weeks 1 day. he is now 15 days old. we have been told he has grade 3 bleeds on each side of his brain. the nurses call him a miracle baby because he is still here and seems to be progressing slowly. we pray, we ask everyone else to pray for him to beat the odds and all we can do is believe that God will do what is best for him and for us. These stories have been uplifting and we hope and pray for the best for our son.

I am praying for all of your babies that are fighting for their lives in the nicu. My daughter didn't have any bleed but I just wanted post to tell you that even a diagnosis of CP doesn't mean that your child will have a horrible future. My daughter had PVL and now is a four year old with CP. She runs, jumps, sings, and she is so smart. I know CP varies in it's severity but I just wanted you to know that your child can have a wonderful active life even with a diagnosis that is hard to hear. I wish you the very best.
Keep us posted!
Desiree

I just read your blog and I was wondering how things were going?

I lost my daughter Alana on Feb 25th to the exact same thing, grade 4 bilateral bleed in her brain, and she was born at the exact same time, 24wks 5 days.

I hope you are finding strength, I would love to talk to you.

keeping you in my prayers,
Erin

We had our twin daughter Allison at 24W3D and she too had grade 4 brain bleeds on both sides. She was with us for 3 days before she passed away. It was the most difficult day of our lives, but she is up in Heaven now and watching over her brother Austin who is doing great.

I will pray for you and your family over the coming days. I know what you're going thru and the impossible decisions that you have to make in the coming days.

I have to say to everyone that has lost a little-one I am so sorry.

Currently my wife, I and family are going thru similar to what most people here have posted. On 26 Mar 2008 my wife gave birth 2 months early via crash C-section due to Preeclampsia. We had twin girls, Chloe and Zoe. The larger of the twins, Zoe, suffered lack of oxygen (unknown why at this time) and is suffering from grade III bleeds. However after doing research it sounds more like IV. The doctors too gave us the grim predictions of the future. Once doctor suggest cutting the life support off after about 4 days. We were not ready for the choice at that time, in my opinion I thought it was way to soon. After about 3 days of fighting with our feelings I was sitting in the nicu staring at my little one wondering what to do. The nurse was talking to me and knew I was troubled and asked what was going thru my head. I told her about the choices the doctor had given. She looked at me and told me, look, you dont have to make that decision, you can let god make it for you. At that point if felt as if 1000 lbs were lifted from my chest and said to her, you know, you are absolutely right. Well Zoe isnt out of the woods yet however she is doing 100 % better than 23 days ago. Her blood pressure and heart rate are great. All organs seem to function as they should minus the little brain. She came off the ventilator 4 days ago and transferred to the CPAP unit. She was off of that the next morning because the doctors said her vital signs were better with it off than on. So far so good.

I have never really been a religous person but I will have to say a few things. About a week and a half into this Zoe had not moved, opened her eyes, nothing. I started to second guess myself about the choice to keep her on life support. On that saturday I was praying and asked for some sign, something to help me know I have made the right choice. That afternoon while at the hospital, Zoe lifted her arm, curled her fingers and wiggled her toes. Tears came to my eyes in joy, some sort of sign, better than nothing. The next morning, my first time in church in years, the pastor was asking for prayers for people needing it. While he began to pray I look towards the ceiling and said, it would be wonderful to see my daughters eyes. After church we went to the hospital and when we walked in, Zoe's eyes were open. This past tuesday the nicu called to tell us that they were going to remove the ventilator to test her out. I thought to myself it would be wonderful if she could breath on her own and to actually hear her cry, well she didnt cry when they removed the ventilator, however when we arrived at the hospital, the nurse was doing her checks and said would you like to see her and get pictures without the cpap unit on. When she took the cpap of Zoe cried.

It has only been a short time 24 or so days now, however after reading some of these posts I do feel somewhat better about the situation, I want to thank everyone for sharing your stories and hope mine might help some too. I will pray for everyone here and hope the best for all.

BTW I needed to edit. Chloe the smaller twin is doing fine. The nicu nurses have named her the lil firecracker. She was 2lbs 11 oz at birth, now up to 3lbs 5oz. Zoe was 3lbs 1oz at birth now up to 4lbs 1 oz. BTW, the pastor where I work came to me this past week and said she had a secret. She asked if I knew what Zoe ment. I of course said no, she replied, Zoe in Greek means life. I felt that warming since we had actually name them while still in my wife. When they were born we didnt think to ask which came out first and assumed the bigger was Zoe because of the last ultrasound pictures. After talking to my wifes OB doctor a few days later we found that Zoe was Chloe and Chloe was Zoe. I guess things were ment to be after all.

Chris

Chris~ Congratulations on having your precious girls! I just wanted to say that I will say a prayer for your family. Keep us posted on their progress!
Desiree

He is now 2 yrs old and is turning 3 in Oct. The doctors told me that he would not be "normal". Well, they were WRONG!!! He does not have CP, mental retardation, or any signs of anything. I give a lot of credit to early childhood intervention. I feel that GOD has everything to do with it and I thank him so much. Don't give up!! There is hope! Let me know if you have any questions!!

My son Micah and his sister Michelle was born March 22 at 23 weeks and 6 days. Micah has had a grade 4 bleed on both sides of his brain which only lasted 2-3 days. He's had surgery on his intestines and had a small section of it removed. He currently has hydracephalus and they've been drawing about 15 ML of fludi off every 3-4 days. Tonight they told me that the bleeding had ate away most of his brain tissue and taht he had about 80% fluid and 20% brain. Just as everone has been describing they've gave me all the worst cases possible and have been making me feel i need to decide to pull his plug or not. GOD knows that I believe in miracles because if not for my twins I would have not known that their father/my husband was HIV positive and had been since about 2002 way before we met until i was seriously ill or about to die. So these are my angels and Micah is a miracle and I pray that god places his hands on all of these babies and a miracle takes place. I need so much support not just for my babies but for everything because it seems like there's one thing after another and I know they say God will never give you more than you can bare but MY GOD this is a heavy moment in my life. Anyone with words of encouragement and prayer anything....advice...more miracle stories please contact me via email. God directed me to this site for a reason...it was the #1 search when i went to Google.com

Prayers, Peace, and Blessings
Renee'

Chloe is home, came home last week. She is now 4lbs 11oz and a joy. However I do have to say, it is very hard to touch her, not because anything is wrong with her...she is so dang SMALL. Scared I will break her or something.

Zoe is stable, however sleeps most of the time. She has been making progress. She is still on NG tube, however in the last week or so, she starts to cry right around dinner time. A sign to use that shes hungry and is saying FEED ME. She is going in for surgery on Tuesday of this week. She will be getting a valveless shunt (due to the blood still in her ventricles) and GTube. We decided to go with both surgeries at the same time based on the fact she eats very little by bottle now about 10 to 15ml at the most. So if she improves after the shunt, and starts to eat on her own, we will have the GTube removed. If not, no second surgery cause it is already done.

Anyways, I want to thank all for the prayers and I will keep everyone i mine.