Grade III bleed

Congradulations on your new baby!
You got wonderful info from some moms above and I hope that helps. My daugher didn't have bleed so I don't have much info on that. I want to say though, my daughter suffered from PVL. We didn't know this until a mri showed it just before her second birthday. She recieved a CP diagnosis shortly after. What I wanted to say is in regards to 'what the future holds' and 'how to get thru it' ....I can honestly say nothing prepares you for the future. There is no way of knowing what will be the outcome. We were blindsided by the diagnosis. I was devastated for my child. We had no idea this was in her future. Now we are almost one year from the time we got the diagnosis and I can honestly say I am shocked with how amazing she is. The docs said early this year that she wouldn't walk for awhile, well she is not only walking she is trying to run! Yes, she has cp and she will have it forever. We get thru the rough spots because we have no choice but to deal with it. I shed a tear here and there; then I pick myself up and continue to be her support system. I don't remember life without her and her prematurity issues. We work with docs and therapists to help her reach her full potential and she amazes us all the time.

Just know no matter what, you will be fine. You will get thru it. Share helps. I have gotten so much support and info from the other moms here. Best wishes.
des

MY BABY WAS BORN AT 27 WEEKS AS WELL AND WAS ALSO DIAGNOSED WITH A GRADE III BLEED. THEY SAID HIS VENTRICLES WERE LARGER THAN NORMAL AND THE BLOOD IN THEM WAS VERY MINIMAL SO WE HAVE NO IDEA THE OUTCOME OF OUR BABY'S FUTURE DEVELOPMENT UNTIL HE IS MUCH OLDER. MY BABY IS STILL IN THE NICU AND HAS BEEN THERE 1 MONTH. HE IS DOING REALLY WELL AND GAINING WEIGHT FAST. ALL I CAN SAY IS THAT IT IS SCARY, BUT YOU WILL LOVE YOUR CHILD NO MATTER WHAT IS WRONG. JUST PRAY AND KEEP ON LOVING HIM.

I agree that the day the doctors told me that my son had a brain bleed was one of the hardest days of my life. My child that was perfect inside of me, now will struggle in life. I told my husband to forget all the images in his head of our son playing ball, etc. Well, my son is now one year old (just turned on Sat.) and is doing perfectly. So far, the brain bleed has had no effect on him and he's developing completely normal (when adjusted for prematurity). He sat up at 6 months adjusted, crawled at 7 months, pulls to standing, plays pat-a-cake. It's important to know that a brain bleed is NOT a diagnosis for your baby. What's most important is the environment you surround him with when he gets home and doing everything in your power to help him develop the best he can. That's all you can do. For now, pray for him and keep hoping for the best outcome. I'm thinking about you. Try to hang on!!
Melissa

My grandson was born at 26 weeks. (2 Lb. 9 Oz) back in November of 2003. He also was born with a Grade III bleed. We too feared the worst. I do remember that one doctor told us...always stimulate him as much as possible..dont just put him in a playpen or in front of a television. He would need a lot of stimulation. We read books to him constantly...he received early intervention almost immediately...OT, PT and speech and still does receive it. He is doing fantastic!! He is running, and starting to jump!! We also enrolled him in a little nursery school for socialization with other children. Stimulation is the key!

Welcome to Share!!!!!!
Congrats on your Grandson!!!!!!!

I look forward to hearing more about your Grandson... Hope to see you around Share!!

God Bless
Melody

I am going thru the same thing with my daughter ava. My twins were born at 32 weeks, and have been in the nicu for more than 2 weeks.. Her head ultrasound also showed a grade 3 bleed. I am terrified and cry every day, but am trying to be strong and as optimist as possible. I guess whatever the future brings we will deal with because thats all we can do..This is my child and we will love her no matter what. I know what you are going through is awful, believe me, i wouldn t wish this on anyone, but all you can do is hope and pray that things will be okay no matter what the outcome.. My thoughts and prayers are with you..

My son was born at 26 wks and had bilateral grade III bleeds...He seems to be doing well so far, he has been seen by eci and they are going to continue working with him..Do any of you know if brain bleeds affect vision?

I think that the vision could be affected by the oxygen that they receive in the NICU. But, its nothing that cant be taken care of down the road. They usually have a pediatric eye specialist look after that quite frequently to see if there are any changes.

Hello Tylers mom,

My son was born at 33 weeks. His name was also Tyler. After my son was born he had bleeding on the brain. He had so many tubes in his little head to help with the preasure. The only outcome that could happen is their mental development, that also goes along with speech and vision problems. I was willing to except that and take it one day at a time. I was not given the chance to bring him home. My baby went to heaven due to kidney failure. Hang in there. I feel your pain and I know what you must be going through. I will pray for you and Tyler.

Suzie

We were followed in the nicu by the eye specialist and went for one visit afterwards and he discharged kellar and said that his rop was not getting worse and that he wasn't needed to be seen till a year..I think I am just really paranoid, he does look but it's just not consistent but then again he technically should only be 2 months old..Thanks for sharing...

As I shared her story on Share a Story with photos, I did so to give all you parents the opportunity of seeing her after nearly fifteen years. I know this was one thing I could do for you parents going through what I did so many years ago but without support like this site. If I had one penny for every tear, worrying thought, question I asked, scarry night I had, hospital visit, doctor visits etc... I would be a trillion air a million times over.

My daughter had grade II, there are differences I'm sure. My daughther's vision problems were due to her Oxygen problems and being on the vent so long, she had ROP and surgery twice (both eyes). Currently at age 15 she wears glasses and/or contacts she has her choice. Her eyesight is 20/70 in one eye and 20/40 in the other corrected is 20/50 and 20/30.

As far as the bleeds affecting vision I have no knowledge of this nor have I been told it would. I was told that is was the vent and oxygen that caused her vision problems. But I do know Stephanie was very delayed with her vision, like following an objects, focusing (it seemed like) and not being alert with her eyes for a very long time. When she would look at me it seemed as though she could not focus. She is fine now. I use to worry about her eyes alot, but have put it in the lords hands and she has done great.

However my niece whom she has always been very close with started having eye problems at age 12 went from 20/20 in each eye to now she is legally blind 20/400 in both eyes (this happened over 14 months time) Tarryn was diagnosied with Stargadts disease. Tarryn (her cousin) had always been so supportive of Stephanie and all her illness, she was always the well one perfect when she was born, and who always looked after Stephanie, helping her with her homework because of her learning disabilities. Now Stephanie has to help her. It has been such an odd turn around, but I believe and always will that God will oversee and take care of your little ones. The hardest thing I ever had to do was trust and have faith and of course stop worrying (which I never have to this day totally) I will put your baby in my prayers and Stephanie's.

Your child's eyesight could most likely end up better than the average child needing glasses. Take care and keep in touch. The following picture is Stephanie and Tarryn (Tarryn is the taller one) This picture was taken shortley after Tarryn was diagnosied with Stargardts Disease.

mite be a bit late for this post. I had twins nearly 3 years ago at 26 weeks. My son David lasted 6 days and had bilateral grade IV IVH. He passed away in my arms. my daughter Katie had a Grade III bilateral IVH and acquired hydrocephalus. She had the shunt inserted and was slow for a while, but she is flying it now!! Her only problem is speech and language but its coming. She is very clever and physically perfect. I haven;t yet had a problem with her shunt and she will be 3 end of November. How is Tyler now?

I will pray that you continue to have strength. How is your son?

I am sooo happy I found this website. My son was born 8/21/2006 and had several complications to include a class 4 brain bleed. I often ask myself why this is happening to me and my family because I prayed over two years for this baby. I never thought for a moment that my child would not be normal, yet I have learn to accept that my child is more than normal, he is a blessing from God. Everyday I look at him and I cry because I am so grateful for the opportunity God has given me, the opportunity to be a mother to his angel. I have come to realize that doctors can't predict what will happen to our special blessings, you see, they can only give educated guesses as long as God is still in the business of answering prayers.

Hi RL,

My little boy was born at 33 weeks. He had RDS and required CPAP. This subsequently resulted in him developing a bilateral Grade III IVH with hydrocephalus.

My first reaction was to cry. I spent much of the next three months in tears wondering what would happen to him.

He spent the next 7 weeks in NICU having lumber punctures. We were told that he would have a high chance of getting CP. He had a VP shunt inserted at 4 months. The best thing about them being diagnosed early is that their little heads are able to expand to deal with any swelling.

He is now 18 months old and although we were constantly going between peadiatrics, physio therapists, eye tests, hearing tests etc etc, he has now been given a clear bill of health. Our hard work paid off and we have been told that it is very unlikely that he will develop CP. This was totally different to our first diagnosis.

As hard as it is, you just have to stay strong and get us much help as possible. I was very lucky that here in Canberra Australia there is a free health clinic for babies with development problems.

Unfortunetly the worrying does not stop until at least 18 months when the specialists can see how your little boy is progressing.

I wish you all the best, keep your chin up and give him heaps of love and attention.

Kim

Kim....they told us the same thing about our grandson Joshua - that he had a Grade III and more than likely would develop CP. They also told us that he could probably have Learning Disabilities, ADD, etc. It was such a somber conversation with that doctor. We thought the worst but accepted it and said we would love him no matter what!! Well guess what!! He's going to be 3 at the end of November. He is doing absolutely beautiful. He does have a slight speech delay and some fine motor skills issues but he is getting OT, PT and speech to help with that. He will catch up eventually and do just fine. Sometimes these doctors scare you so badly you dont know what to think.

Hi there and welcome to your little man. My twins had brain bleeds of III and IV. They were born at 25 weeks and weighed 2 lbs each. They are now 6 and both very healthy, no side affects from the bleeds. Keep your hopes up, everything will be fine. He will bring you much joy as mine have brought me.

Hi I had my son at 28 weeks he had a grade 4 brain bleed, wow did my life change. Doctors told us that with that type of injury there would be severe damage to the brain. We were told that he might not walk talk and if he did there would be severe delays. After three months in the hospital we finally took him home the day I brought him home I treated him like a normal baby just like my other children. I made a promise to myself to believe in faith instead of the doctors, sometimes they just dont know. We started pt and speech therapy right away. The first couple of months went very slow then Connor was getting irritable so at 8 months I decided to stop and teach him the way I did my two other children. Well long story short he walked at a year old his is running climbing talking and do things my other two didnt do at his age. The neurologist has no answer but to say he is a miracle.

I can't believe how close our stories are. My daughter was also born in 1991. At 26 1/2 weeks. She has had no health issues since her stay in the NICU. The other amazing coincidence is that I see by the picture that your daughter is a cheerleader. Mine is also. They took 2nd at state last year and we got to travel to Disneyworld in Feb. for nationals where they took 29th. Which is great for our small size school. What I was interest in and you may not have this issue, but my daughter struggles quite alot and always has in some school subjects. Her's happens to be math and science. Have you had any issues like that or do you know of any studies that I can reference as I'd like to get her school involved and see if we can help her in these areas. With school and cheerleading it has become a stressful issue with her this year. Its so nice to know there are others out there that have gone through the same situations with preemie's. You feel so all alone when it is happening.

my baby was born 8/20/07 he was 29 wks the day after he was born they told us he had a grade 3 bleed a week later they told us he has hydro (something) sorry forgot what it was called my lil one has never been on oxygen since he was born he has been breathing on his own he is now almost on full feeds. It gives me such a good feeling about my lil one to hear all ur stories i hope ours turns out some what ok and that our lil gets more healthy i would appreciate any advice this is our 1st baby and ours biggest blessing.

Hello. My name is Rachael Lane. I was born on May 22, 1984. When I was born, my umbilical cord was pinched stopping the blood from flowing to my brain. As a result, I had a class four brain bleed. I have cerebral palsy. I am missing about 75% of the left side of my brain. My apgar scores were a one and seven. An apgar score is a method for assessing an infant’s health condition on a scale from zero to ten. Because of my health condition, I had a high risk of dying. The doctors said that I would never be able to walk or talk. I am missing the part of the brain that controls speech. However, the doctors didn’t know what God could do. Around my first birthday, my family found me standing in my crib. Miraculously, I started walking and talking around the time that I was one and a half years old. I learned to play the harmonica and occasionally play in church. I learned to drive and earned my Associates in Arts Degree majoring in Business Administration. I attend First Baptist Church of Land O Lakes. There, I work with the children’s ministry. Although I have made many decisions in my life, I made the most important decision in my life on May 31, 1998, a decision on where I am going to spend eternity. At an age of fourteen, I received Jesus Christ as my only hope for Heaven. Without God, I would not be where I am in my life today. I would like to tell you how you can receive Jesus Christ as your Savior. There are five things that you need to believe so that you can know that you are going to Heaven.
First, the Bible says in Romans 3:23 “For all have sinned, and come short of the glory of God;” Sin in this verse means the wrong things that we do. We’ve all sinned. We’ve all done things wrong. Secondly, Romans 6:23 says “For the wages of sin is death; but the gift of God is eternal life through Jesus Christ our Lord.” Wages in this verse means payment. Death in this verse is talking about an eternal separation from God in a place called Hell. Because we’ve sinned, we have a price to pay. In order for us to pay for our sin ourselves, we have to go to Hell to do it. Thirdly, Ephesians 2:8-9 says “For by grace are ye saved through faith; and that not of yourselves: it is the gift of God: Not of works, lest any man should boast.” Grace in this verse means undeserved, unmerited favor. It in this verse is talking about eternal life. Eternal life is a gift from God. People don’t work for a gift, but they receive a gift. Our good works cannot save us. Isaiah 64:6 says that “all our righteousnesses are as filthy rags.” When we are at our very best, God still sees our goodness as filthy rags. Heaven is a perfect place. In order for us to get to Heaven ourselves, we have to be as perfect as God and none of us are. Fourthly, Romans 5:8 says “But God commendeth his love toward us, in that, while we were yet sinners, Christ died for us.” Commendeth in this verse means demonstrated. Yet sinners in this verse means while we were yet in our sin. The good news is that Jesus Christ has already paid the debt so that we can go to Heaven. Jesus Christ came down from Heaven, was born in a manger, lived thirty-three years of a perfect, sinless life and died on the cross to make the payment for our sin. After Jesus Christ died, he was buried. That wasn’t all, Jesus Christ rose again on the third day and is in Heaven right now. Fifthly, John 3:16 says “For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.” Perish in this verse means go to Hell. All we can do to get to Heaven is believe that Jesus Christ is the only way to get to Heaven. John 3:36 says “He that believeth on the Son hath everlasting life: and he that believeth not the Son shall not see life; but the wrath of God abideth on him.” Believe in this verse means to put your trust in. Putting your trust in Jesus Christ alone is the only way to get to Heaven. If you would like to receive Jesus Christ as your personal Savior, then pray a simple prayer like this:
“Dear God in Heaven,
I know that I’m a sinner. Because I’ve sinned, I deserve your punishment which is to spend eternity in the place called Hell. I know that there’s nothing that I can do of myself to earn eternal life. I believe that your Son Jesus Christ died to pay for my sin and right now, I am trusting Him alone to be my Savior, my only hope to get to Heaven. Thank you for forgiving me and giving me the gift of eternal life. In Jesus name I pray, Amen.”

does anyone have a premature baby who has a grade three bleed with vision delays??? my baby has a grade three bleed shes 10 months now and doesnt see anything the doctors say that she has vision delays and we have to wait it out ...i am inpatient already please help...

Hiya,

My son was born 8 weeks premature and developed hydrocephalus at 2 weeks old. I was told that he developed this condition due to a bleed on his brain which clotted and caused a blockage of his ventricals. Doctors could not tell me when the bleed happened or where it happened. I was told that the blood would be re absorbed by the body and in theory the blockage should have cleared and the hydrocephalus resolved. However, a 4 months old my son had an operation to have a VP shunt inserted. It has changed his life so far, he is now 8 months old and developementally is on track for a child his age. We wont know for a long time if he has been severely affected by this condition but we are in the care of the early intervention team and my son is receiving physio therapy and OT.

I know this can be a very hard time for you and your family, you find yourself playing the waiting game, looking on helplessly at your little one, praying for a miracle, knowing your doing everything you can but feeling like it just isn't enough. Your heart breaking a little more every day. Just when things seem to improve, you get a knock back. However, seeing your little one grow and thrive will keep you going. Its a long road ahead and all we can do is keep struggling on.

When I asked, Why Me, Why did this happen to my child. . . someone said. . . Its because God knew I could cope. . . and as hard as it may seem, I'm coping. You will too, and your little fighter will surprise you every day. Just believe that he will come through it.

I wish you the very best of luck. There is a website that I would like to recommend. www.sbhi.ie - you will find some information there that might help you. All the best

Dee

HELLO MY NAME IS JAMIE PAYNE AND YOUR EMAIL MAKES ME FEEL SO BETTER AND I'M SO GLAD THAT YOUR DAUGHTER IS WALKING & RUNNING AND SHE HAS CP TOO,
  BECAUSE ONE OF MY SONS WAS DIAGNOSED WITH PVL ALSO AND I'M SO WORRIED ABOUT HE'S OUTCOME IN LIFE LATTER ON
 HE'S 1 YEARS OLD
JAMIE

Hi,

My name is Tammy and I just wanted to post this to raise the spirits and give you a positive story. My son, CJ, developed a grade III IVH on both sides with hydrocephalus during the days following his birth. We were told of a grim outcome with the possibility of severe developmental delays. He underwent serial lumbar punctures to release the pressure while the bleed subsided on it's own. He did not require surgery but remained on Diamox to decrease CSF production for many months afterwards. By some miracle, he is now a healthy happy 15 year old who loves high school and singing and acting. We were told he would most likely have motor skill problems but he plays the piano like no body's business. Here is a link so you can see that there are positive outcomes out there so keep you chin up http://www.youtube.com/user/CJMarsiniMusic#p/u/3/OIbfFv-qHEY