Dealing with news about your babies IVH or bleed...

Welcome to Share. I am so sorry that you are dealing with such a hard time with your daughter. The NICU is a scary place and it truly is a rollercoaster.
You might want to head over to the Parent to Parent section. There are many women over there that have dealt with IVH and are dealing with it right now. There is a section for parents that currently have children in the NICU.
Please keep us posted on your twins progress.

Again, welcome.

Katie

Congratulations on the birth of your twins! My daughter was diagnosed with a Grade 3 IVH, 3 days after her birth. The bleed resolved on its own and she did not require a shunt or surgery. When the second sonogram revealed that the bleed was resolving her doctor said that was best news we couldve hoped for. She does see a neurologist every 3-4 months and had a couple of MRI's

We do live with the side affects of the bleed everyday as she has motor skill delays, but she is enrolled in Early Intervention (Early Steps) and is receiving therapy (OT/PT and ST), which has helped her greatly. Please dont give up hope, sometimes doctors give us the worst possible outcomes.

Take care,
Cathy

I'm so sorry that you're having to deal with this new challenge for your daughter. I don't have experience with this myself, but wanted to offer encouragement for you anyway. Hang in there and know that we're here to listen any time.

Tracy

My son excels in some areas and is seriously delayed in others.

Cognitively, he's amazing. He's not quite 4 and can say his ABCs, and if you write any letter down he can not only tell you the letter but also the sound. He's almost reading. His communication is very good and while it's not quite 4 yr old level, it is definitely late 2, early 3.

Gross Motor, we are challenged there. He does have some CP and is not yet walking. So far PT and neuro do believe he will be able to in time.

My biggest fear when I got the diagnosis was whether or not he would be able to have quality of life and the answer is a very emphatic, "yes". My son is extremely happy and witty. He is very capable of independent thought and action and is in so many ways a typical toddler.

Don't let the diagnosis discourage you. It's frightening and there is a whole wide range of outcomes but just know that anything truly is possible.

My little girl Emma was born at 26 weeks weighing just 1 pound and 5.7ounces, and she suffered a grade four bleed when she was only 2 days old. The doctors told us she wouldn't make it through the night, but by God's amazing grace she did. A few weeks later the doctors did an ultrasound and found that she had some brain damage which is expected with a grade four bleed. I will never forget the moment the doctor looked at us and said these are the risks and this is what will likely be her life, (it was grim), then she said, "do you wish to continue life support?" I wanted to fall to my knees crying, but I looked down at the tiny little baby who fought so hard just to make it through that one night and I thought, who am I to say she should go? She fought this long and this hard and I will give her everything I can to help her, and as long as she fights I'll be there, she decides when it's her time, it's between Emma and God, and if she's trying to live I will not stand in her way. I will never regret my decision. Emma is five months old now and is home form the hospital, she isn't like a full term five moth old, but she's not that far behind either. Emma is on oxygen and an apnea monitor, because of a lung bleed, but her brain bleed has had less affect on her than her lung bleed (which was supposed to heal and be a minor set back long term). Emma amazes her doctors ever day, she is getting to where she is just slightly behind fulltermers in her development ,and they said she might never even be able to hold her head up. Emma is now able to hold her head up for a while and she gets stronger every day, she is starting to show signs of trying to crawl, and she is very much a happy little girl. Other then Emma's small size you really couldn't tell that much of a difference between her and a full term 5 month old. Emma's doctors said she'll never do this and that, and this might happen and that might happen, but now they are saying things like "well, miracles happen, and we are just learning what the human mind is capable of" So don't dwell on what could happen, because only God truly knows what is ahead for your baby. When you feel frustrated and scared look at your little one and how hard she fights and how much she wants to live, and as long as that is there in her eyes, that fight, that will to live , help her, stand by her as God stands by all of us... she needs you to believe in the "impossible" because your her mommy and if you wont give her a chance and believe she can overcome this then who will? I will pray for you and I hope you know that God is standing with you, and you WILL find that you must lean on him during this experience, but if you trust in him, (believe me it gets HARD), he will pull you through and up, no matter what happens and though we may never understand why, God has a plan and all things happen for a reason. Show your self and your children what it means to dig down deep inside and believe... and be strong, no matter what they say, you know in your heart what is right for you and your children. I am here if you need me.



-Angela-

Thank you guys for your posts of hope when dealing with IVH. I am so scared of what the future might hold for my 24 week son. Seth was born on July 7, 09 on July 9 we found out that he has bilateral Grade 4 IVH. It is so scary when you hear the odds and outcomes, but nobody can even come close to telling you what your child can expect.

Michael was born November 21, 1982 at 27 weeks. My husband and I were told by the doctor's that we should give him up for adoption due to the many serious health problems he would have. I told the doctor I would NEVER give up my child. We went through a lot him and I, the struggles, tears, arguments (with my mother in-law) and the joyful experiences was worth giving birth and keeping Mike in my life. At 26, soon to be 27 Mike enjoys working on and with computers, reading, writing, fixing gadgets and knows a lot more then me (at times). He has Cerebral Palsy due to the bleed on the left side of the brain. He is not in a wheel chair. He walks with a limp, talks very well and has graduated high school. He went to college for a year, but he doesn't know exactly what he wants to do other then repairing computers. He loves to watch horror, comedies, and thrillers. Mike takes walks every other day at least 2 miles.
At the age of 15 years old Mike was working at a grocery store here in Florida. He started having seizures about the same age. The doctors told me when he went into puberty it may happen. He knows when they are coming on before they happen. They are called complex Focal seizures. He use to have approximately 3 to 4 per week. He still has them but they are slowing down and only happening 1 time per month. Thankfully he knows what to do before they come on. He will lay himself down on his right side, sometimes spitting up fluid and they only last approximately 4 minutes. Mike is aware when he is having a seizure, he can talk through it. The doctor now is saying he may have to have surgery to stop them all together. I am praying this will not have to happen.
Anyway, ladies I know I was a bit much explaining what happens when Mike has seizures, but no one told me what would transpire if it ever happened. I am letting you all know that it is a possibility. Talk to your doctors about Epilepsy and CP.

Blessings to All in Yeshua's Name. Amen.

Welcome to Share. I am sorry about MIke's continuing seizures but it sounds like he has led a wonderful life with the encouragement and love of his wonderful mother. I hope you will get some answers about the surgery soon.
Please keep us updated.
Ellen

Hello and welcome to Share. I am sorry that Mike continues to have seizures. Im glad that they are slowing down. Although I wish it was not a part of his normal, I think it is awesome that he knows what to do to ensure he doesnt hurt himself or choke while seizing. I am really in awe! He absolutely sound like an amazing warrior. I am sure he has proved many scary white coats and their worst case scenarios wrong in his 15 years of life.

Thank you so much for sharing his story!

God Bless

Yolonda

william is now 5. He was born at 28wks and when he was 2wks old he had 3 massive bleeds grades 3, 4, and 5. He had to have a blood transfusion with both 4 and 5. It was hard when he had that ultrasound and it showed that he had brain damage from the 4 and 5. We had no clue at first how to even go about it. All you can really do is be there for her. All any of us can really do is wait and see how things will play out. There is no way to prevent it. I will pray for your daughter tonight and i wish you and your family the best of luck.

hugs,
felicia