24 week micro-preemie grade 4 bilateral brain bleed, help!!

I recently gave birth to our beautiful little girl. She was 24 weeks 0 days gestation when she was born. I wasn't able to receive steroid shots prior to her birth. She has had a bilateral grade 4 brain bleed resulting in hydrocephalus, chronic lung disease, as well as a couple infections. She is 4 1/2 weeks old and still on a vent. She has coded twice. The doctors have been great in many things but they have also overwhelmed me with all the things that Bella will probably never do. I feel so overwhelmed with the NICU rollercoaster, and I was hoping to find others who have experienced the same situation before.

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I have 28weekers and two that suffered bilateral bleeds (grades 1/4 and 3/4 with shunted hydro). My docs (unlike many, that I hear) NEVER told me they WON'T do this or that. Of course they give you the worse case scenerio and tell you what could happen, they COULD have CP (which btw is nothing you have to freak out about neccessarily. My two with bleeds "have it" and are thriving., they MAY never talk, walk or eat on their own, they MAY have long term developmental issues...etc. Appreciate their honesty in sharing the worst and being real but remember that doctors cannot predict anything so don't let them tell you what the future WILL hold.

If you'd like to read up on ours who had bleeds (Brody & Kylee) visit www.coxquads.blogspot.com . Everything is there from NICU to surgeries to diagnosis to milestones and everything in between. I remember being where you are now and wishing I knew SOMEONE who had been through it. I didn't have inspire, wasn't really involved with my MoMs group..etc. It seemed like nobody could reach out and give me their experience. I'm gladly here to do that for you if it helps :)

Hugs!

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add a ")" after the word "thriving" above, or it could come across different than I meant it!

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I am so sorry that u are going through this with ur lil one. I had twins at 26 weeks on January 31, 2010 and my oldest twin passed from a bilateral grade 4 when she was 5 days old. My surviving twin has a bilateral 3 ans although the doctors said the same n the NICU about all the things she would never do, she is sitting, walking, talking a little and although she is going to b 2 this month, she is developmentally 13 months old at best, however the point is the docs said she would never sit on her own or do anything independently and Jessey has a mulitude of medical complications.

Reguarless of what the NICU docs say that can not predict the future, it is ur decision on what u wish to do for ur daughter! I am sending all good thoughts ur way and will keep orecious Bella in my prayers and thoughts as she continues to fight!

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I am so sorry to read about your pain and roller coaster!

Our little Addison passed away from a Grade 4 bleed after 3 days (born at 26 weeks). We had to switch off the machines because the CP was severe and was shutting down her vital organs. BUT i have heard of many preemies who have thrived after surviving this, so dont lose hope. Listen to what your heart is telling you. And stay strong. I am just so happy we got 3 precious days with her, so focus on the present, and let the future take care of itself. Deal with each day as it comes :)

BIG hugs, and lots of prayers xx

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So sorry you're having to go through this all, but hang in there! I'm sure it's been a tough 4 1/2 weeks.

Kylie was born at 23 weeks back on 4/29/10 at 520 grams (1 lb 2 oz) and had bilateral Grade IV bleeds. We heard the same stories. She'll probably be blind, deaf, never recognize us, never move with a purposes, yada yada.....all of which, she's done and then some.

She went through the ringer with a host of issues I won't bother posting all the details about on here, but she was on one vent or the other for probably around 6 months of her 7 month NICU stay in addition to her 15 surgeries (6 of them on her brain related to her shunt, the others were all GI related)

She's on the verge of crawling today and of course she's delayed (she's 20/16 months old), but man, she is so happy! But I'm sure I'd be a little behind too if I went through what she did. She's getting teeth in (9 at once!) and still is only G-Tube fed, plus she's a little small due to our 17 ER visits and different admissions for hospital stays last year, but we know she'll work it out this year.

The point of all this is hang in there. Of course there's a chance all those things can happen they say will happen, but there's also a chance they won't. Even a 1% chance means there's a chance. Miracles happen every hour of everyday. Here's to hoping your precious little girl is one of them! Good luck and God Bless.

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gilly b, can i ask what you mean anout the CP being so severe it was shutting down her organs...i dont understand what you mean.
paradox334, my son had grade 4 bleeds bilaterally in utero and a possible stroke. it has left him with little white matter, an part of his cerebellum is destroyed. he was supposed to be a veg. and we were encouraged to "let him go". for 12 months he did nothing, except have seizures and then learn to smile at voices and some music and appeared to be completely blind.
today he is 20 months old, he laughs and claps and plays with toys, he sees well and is rolling all over the place, taring things up and creating joyful chaos! right now hw is sitting in the high chair feeding himself spaghetti and "singing" at the veggie tales movie playing. he says some words and signs some. he is a joy, and full of life, and will do many things in his own time. the cp he has is spastic diplegic, so it maked his muscles fronm the waist down very tense, preventing him from sitting up or crawling, YET, but he is getting better every day, and i expect him to sit up very soon and to crawl, and walk one day. this is a hard way to come into the world, and there is no easy way to get through it, but she will come through.

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Rona has a grade 4 on the left and a 2/3 on the right. He is 8 1/2 mo old 4 1/2 mo adjusted he was 24 weeks plus 0 days as well. He is doing great. He just got home from the hospital after 2wks and he learned a new skill while in there he can now roll the ball on his play gym toy and just realized he can grab his feet :-) He has been amazing all of us feel free to read all my past post. People on here have given me great advice and lots of hope. He was on the vent 5 1/2 wks and needed decadron to get off but he stayed off. Good luck and keep us updated prayers are with you.

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Our baby was born at 24 weeks and had bilateral grade IV bleeds with hydrocephalus , lungs wouldn't hold air anymore, and heart valve was closed. We decided to let her go. Nobody can give you a magic crystal ball and tell you what will happen to your baby in the future. You just never know how much brain damage will occur behind a bleed. Hang in there, the NICU experience is a rollercoaster ride.

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Congrats on the birth of yr baby. The nico is the toughest and roughest journey in life u will have take. Take heart from all the positive stories on here. My daughter became an angel after 17 mins But my son is thriving and beating all the odds for a 23 weeker! Ask loads of questions of the doctors and nurses and realise they need to prepare u for the worst rather than the best. Hugs

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Bella is scheduled to get a temporary shunt placed Monday. I'm a little nervous about it but it needs to be done. Her PDA is still moderately open but the Cardio Dr. wants to try giving Lasix to see if getting rid of the excess fluid will be enough to help her without doing surgery right now. They will continue to monitor it and make further adjustments as necessary. Next week after the surgery they want to do another round of steroids to "push" her off the vent. She has gained 1 lb since birth and is tolerating her feeds well. I am trying to stay positive and focus on the good. I still get a little overwhelmed when they say "we need to do this or that but the side effect is neurological damage, in addition to what she will already have because of the brain bleeds." I'll update this after her surgery Monday. Thanks for all your comments and words of encouragement. It helps so much to know I'm not alone.

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When my former 23 weeker was in the NICU we met the mother of a 23 weeker with a grade IV brain bleed. She also was told all of the horror stories of what her baby would never do. Today that baby is 2 1/2 years of age...she is walking, talking, eating independently, etc. My baby had only a grade I and her baby is light years ahead of my Addie. These doctors can not predict what will happen to each individual preemie. I want to encourage you to move forward while giving your baby all of the love, support and hope he/she deserves. Try not to focus too much on the doctors and what they feel entitled to tell you.

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I am so sorry you are going through this experience. My twin girls were born at 24 weeks 5 days in 2002. Megan had a grade 4 bleed as well. My girls spent 3 months in the NICU and we heard "she'll never do this" or "she'll never do that". It was frustrating beyond belief. We did realize that doctors must be "cautiously optimistic" but too many of the doctors we dealt with were just "doom and gloom". Well, 9 years later, all of the predictions they made never came to pass. The worst we dealt with was ROP which was corrected with surgery and developmental delays. My advice is to take it one day at a time and give your daughter lots of love. I will keep you and your beautiful daughter in my thoughts.

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Hi there :)

By CP I meant Cerebral Palsy. Brain swelling exerted pressure on brain stem and her organs were starting to fail. We didn't want her to suffer any further at that point. Its a very personal choice, but we were confident our doctors had been 100 percent honest, and that even if she could have survived, that her quality of life would be severly compromised.

Hardest decision we ever had to make.

Xxx Hang in there!

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im still confused gilly bean. i know what CP is, its cerebral palsey, my son has spastic diplegic CP. im confused because you said the CP was shutting her organs down? did your doctor tell you that she had CP in the NICU? because if they did they were NOT giving you correct information. no doctor can tell you your child has CP in the NICU at such an early gestation, it simply cannot be diagnosed in a neonate. CP also does not shut down organs. sometimes, in severe cases of spastic quad CP you can have gut motility or bowel muscle issues. i understand completely about the swelling of the brain, and the pressure on the brain stem, and am in no judging you for withdrawling care, i just wonder what the doctor could have said to you about CP affecting her organs or quality of life.

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I also gave birth at 24 weeks and 0 days. She was less than a pound and also had a brain bleed (bilateral grade 3), which resulted in hydrocephalus and later required a VP shunt. At some point she sustained some brain injury and had/has grey matter loss (or is it white matter?). At any rate, we continually received negative reports that would leave me in tears every time. They said she would be severely disabled and would have CP and might not even survive. Well she is almost 10 months actual (almost 5 months adjusted) and doing great. She still has remaining issues (e.g. gtube, shunt, CLD, congenital hypothyroidism), but she is doing great considering her struggles. She is very alert and her intelligence is already apparent. She currently has some motor delays, but she is progressing still and shows no signs of CP. Her tone is great!

So please remain encouraged and have faith. Our trust in God and the prayers of our friends and family really got us through a most difficult time. I would speak life over our daughter daily and all day, despite the prognoses and despite how bad things seemed--and they were BAD. Most days we didn't know if she would make it and the doctors and nurses were not very optimistic. We would just tell them, God is going to heal her. She WILL live. They thought we were fanatical and maybe we were. Call it what you like, but our God prevailed and our sweet girl is alive and thriving! ....thus her middle name, Miracle.

I pray that the end result of your story is even more positive than mine. Speak life and confess that your baby shall live and not die. It doesn't matter what it looks like or what happened in other circumstances. Have faith, despite what it looks like.

Luke 22:32

*Feel free to send a personal message if you ever want to chat. I received immeasurable strength and support from strangers who traveled a similar path. I am compelled to return the gift. (jerondaburley@yahoo.com)

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