Hello All,
We had our baby 10 days ago, he was scheduled to arrive in feb but he came in early at 23 weeks and 5 days weighing only 1 lb 5oz. The doctors said that my wife has a classic textbook case of incompetent cervix. Well the baby ( named him aarav) is in the NICU and doctors are saying that he will be there for next 3-4 months. They did his brain ultrasound a couple days ago and the radiologist said that he has a grade II bleeding which is more pronounced on the right side. They didn't give us any explanation on what and how it would effect him and on top of that yesterday one of the doctors said that he thinks it might be Grade III but they will go with what the radiologist says.
The most frustrating part is that the doctors make everything sound like it is the worst case ever. Me and my wife are still trying to get interms with what has happened. The whole situation is just stressful and hopefully we will have the strength to deal with it. Also his creatine levels have gone up to 2.5, the doctors have said that it is because of his PDA (heart murmur). They are going to do heart surgery on Monday. Does anybody else have issues with creatine levels?
I wanted to know if anybody has experience with Grade II IVH. How the babies behave when they grow up? Any information would be helpful.
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Premie with Grade II bleed (plus incompetent cervix, heart murmur surgery)
- By Hempre
- Posted November 7, 2009 at 8:34 am · 20 replies
- In Preemie pregnancy
- Shared with the public
- Edited November 7, 2009 at 4:31 pm
Explore topics in this discussion:
Exercise Surgery Incontinence Hydrocephalus CPAP Stroke Pregnancy Memory Cerebral palsy Stress
20 replies
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- By Prayingforourxtwins
- Posted November 7, 2009 at 8:56 am
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congrats on your baby boy! My twins were also born at 23 weeks, 5 days. They are still in the NICU and have suffered from iVH bleeds as well. One has a 2/3 and one a 3/4. We are almost 3 months into this NICU journey, and they are doing SO well, the doctors and nurses are amazed.
Be prepared to hear all those worst case scenerios...I started getting really irritated with the doctors too, because i felt like they had nothing positive to say. We have a new doctor every other week, and we've learned that their approach differs. We just started to let their words go through one ear and out the other. You just have to get to the point where you have hope that all that they are saying is NOT going to be true and just have faith in your baby.
My boys have CLD as well, because they were so premature. They were on a vent for a long time, one son is still on the NIPPV.
You will go through MANY ups and downs and it is soo exhausting. Just know, that your baby is in really good hands. I feel for your wife, because I know how it is to grieve your third trimester. It all happens soo fast, the delivery, the NICU talks, everything.
Shoot me an email with any question you may have. I don't know what the future will hold for my 23 weekers, but I do know that they are acting better than the doctors could imagine (even with a grade 3/4 bleed). that boy is even taking bottles now!
good luck and congrats again!
- By meggs2003
- Posted November 7, 2009 at 9:17 am
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Hi there! congrats on your son! My son who is now 5 1/2 months actual age, 3 months corrected had grade III-IV IVH w/ hydrocephalus. He had a resirvoir placed at 2 weeks of age so they could drain the fluid out and prevent more pressure/swelling on his brain. At 4 weeks he had a VP Shunt placed. It was draining the fluid from his ventricles to his abdominal cavity. It was working well but became superficial on his head(looked like it was going to break through the skin) and he had a shunt revision at 6 weeks. He has been home for just about 3 months now and is doing well.
The neurosurgeons told us he is at high risk for CP and other developmental delays. He sees a PT and OT. He has no signs of delays at this point. He is moving all of his limbs equally, he is smiling, cooing, just being a baby!
The doctors normally tell you worst case scenerio. I would talk with a neurologist/neurosurgeon because they know most about this type of thing. While the radiologist is educated in reading them, it is best to get information from the neuros.
- By quadmomma
- Posted November 7, 2009 at 10:11 am
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two of mine had levels 1&4 and levels 3&4 bleeds. they are 9 months now (6 adjusted) and are doing great. We too heard the WORST from the drs and were given the option to pull the plug on my boy as he was dealing with hydrocephalus and lung issues at the same time. We didn't and are thankful we didn't everyday. They are both doing great now! Slightly dehind developmentally, but SO HAPPY! Hang in there, the nicu is a rough ride. You can see more of our story at www.coxquads.blogspot.com
The two with the bleeds are Kylee and Brody. Look under February-April (that was our NICU stay). I hope that it gives you hope :)
and congrats!
- By rosebud375
- Posted November 7, 2009 at 11:09 am
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Congratulations on the birth of your little boy. My family is going through the same thing now. My son Dylan was born at 24 weeks 2 days 1lb 4.2oz on October 29, 2009 following a 3 week hospital stay for me. Cause is unknown, but more than likely IC even with a full term birth 11 years ago. Dylan too has a grade II bleed. We are so scared. The doctors too made it seem as though this was horrible. Although, I've talked to another neonatologist and she was positive about those results. We have a repeat head ultrasound on Monday. I'm terrified to hear the results, but praying they will come back and say it hasn't gotten worse.
Please keep us updated how Aarav is doing. Good luck to you and your family.
- By violetsmom
- Posted November 7, 2009 at 2:57 pm
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Violet was born at 25 weeks and had a grade II bleed on one side. The docs and NP's said that she was very lucky to be born so early and have such a small bleed. They said that grade 1 and II almost always have NO lasting effects. I hope that the bleeding resolves soon and you can rest easy. I was always terrified for the head ultrasounds also....so scarry...but the end does come and Violet is perfect. She rolled over yesterday at 3 months adjusted...not too shabby!
- By katek
- Posted November 7, 2009 at 3:22 pm
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Dear Hempre:
Congratulations on the birth of your son. I'm sorry that the circumstances aren't ideal.
My son is now 2.5 years old. He was born 1 lb 3.65 ozs. He didn't have an IVH, but he had a cerebellum bleed. Some doctors classified his case as Grade 4 b/c it was outside the ventricles and some people say that anything outside should be called 4, but in his case, although outside the ventricles, the bleed was relatively small. The problem with bleeds in the cerebellum, though, is that it connects the two halves of the brain. The few studies on cerebellum bleeds don't have particularly good outcomes, but there are very few studies AND the sample sizes are so small, I'm not sure that much can really be assumed from them. I bring up my son's unusual case b/c I am familiar with living in the unknown. It hasn't been easy, but here I am 2.5 years later with an amazing, smart, active little boy.
My understanding about brain bleeds from reading about them when my son was in the NICU is that the number assigned to the bleed is associated with risks, but they don't guarantee anything b/c some kids absorb the bleeds with no problems and for others it leaves scarring. So "don't know" is the often given as the prognosis about the future.
RE: "The whole situation is just stressful and hopefully we will have the strength to deal with it."
It won't be easy, but I can tell that you already have the makings of someone who has it in them. Your instinct to seek outside information already marks you as different from many parents...in a good way.
Traumatic pregnancies are very hard on relationships and put everything in one's life to the test. I think that we found after a month it was particularly difficult b/c the shock had worn off and we still had at least 2-3 months left of going to the NICU. Make sure that you and your wife try to get sleep, eat, drink water, take walks. It is imperative for the health of your son that you and your wife take care of yourselves during these difficult times. Sleep deprivation and lack of nutrition will compound your stress, so meeting your basic needs is important...important for baby's well-being.
While there are no magic cures for the complications that arise with prematurity, I think that proactive parenting (not just in the NICU but especially during the early, formative years of your child's life) can help minimize the potentially negative effects of prematurity. And this website, you'll find a lot of different stories. The thing that most have in common is proactive parenting, which results in a lot of amazing kids who have overcome some pretty difficult situation.
The NICU journey is hard. And there are a lot of unexpected bumps along the way. I wish you, your wife, and your son an uneventful journey toward his due date and discharge from the NICU.
Best wishes.
- By alexacolbert
- Posted November 7, 2009 at 3:25 pm
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Make it clear to the doctors you don't need to hear the worst and that you just want to hear the facts after a while it's gets hard to focus with all the imformation they give you. To hear the worst day after day is tiring and it makes it hard for you to be there and stay strong for your little one. My twins were born at 23 weeks. Both had brain bleeds. I pray all is well for you and your family. My heart goes out to you.
- By 1pair-n-1spare
- Posted November 7, 2009 at 3:55 pm
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Hempre,
My most sincere congratulations on the birth of your son, Aarav. Some people outside of preemie parents will forget to say that. Never forget to celebrate your son. I agree with Alexa, state to the doctors that you aren't looking for information about if your son is going to graduate from college... you are looking for information NOW of how he did last night, and how he is doing today. Nobody is able to tell you exactly how IVH and prematurity will effect YOUR son, they can only tell you how it goes in MANY of the cases, and to cover their collective behinds, how it could go worse.
Settle in to NICU life... and get to know your nurses. Never be afraid to talk with the nurses after the doctor leaves. I found that asking them to explain WTF the doctor just said takes a much more positive light. These are the people who interact with your son on a minute by minute basis, the docs only see the babies at rounds and then they are off doing doctor things. After 7 years, I am still very close with the nurses who took care of my Julia (pictured above). In my case, these women would bleed if Julia bled, they cried with me for my child and then helped me stop crying and start looking at the good things.
The NICU is full of ups and downs and can be a really, really tough time for micro-preemie parents. But partnering with the nursing staff makes life easier for you by far.
Lisa
- By Hempre
- Posted November 7, 2009 at 4:31 pm
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Hi Folks. I'm the mommy of our son, Aarav. My husband just introduced me to this site, and I'm amazed to read about so many couples that have endured or are going through the same thing we are. First of all, thank you SO much for your prayers and best wishes and also for sharing your stories. This is really comforting.
We have had some of our family and friends say "Congratulations!!!!!" and some say "I'm so sorry!". Both are somewhat true. There's a part of me that wants to celebrate. There's a part of me that is so terribly scared for the future (baby registry shopping came to a screeching hault!). But the doctors and nurses seem to be right in saying take one day at a time. (I do agree with my husband and wish the doctors could be a little more positive - they definitely don't cherry-coat anything!)
The nurses are amazing. They take time to explain what the doctors' diagnose. The doctors and nurses are taking care of our son, and so I hope they are blessed with the knowledge and strength to do their jobs well.
Our son is scheduled heart surgery to close off the PDA valve on Monday. The couple with the baby next to ours say their little one did REALLY well with her PDA surgery recently. I feel like once he stabilizes the other issues will also resolve themselves. For example, although Aarav is peeing well, his creatin levels that regulate kidney function are at 2.5 now (jump from 1.9). The surgery might also help his digestive system. He has pooped a couple times with the help of a suppository. They took him off my breast milk till the surgery. I guess the bottom line is that the heart surgery should help blood flow to his other systems.
So I have an incompetent cervix. Sometimes I wonder if there is something I could have done to help prevent this, but the doctors say that isn't the case. (Believe me I am experiencing a lot of guilt knowing that our baby came out soon b/c of my cervix!) They also say that the next time if/when I get pregnant they would stitch my cervix up at 12 weeks with possible bed rest. The "funny" thing is that we recently met another couple who had the same issue. Unfortunately they lost the first baby at 19-20 weeks. They are in the ICU again with the second baby who, inspite of the mother having her cervix stitched up, came out at 26 weeks - PLUS the stitches on her cervix were intact!!!!!! They are still trying to figure that one out.
Please keep our Aarav in your prayers. We continue to do the same for your little ones.
- By Hempre
- Posted November 7, 2009 at 4:36 pm
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Hi KateK -
My husband and I think its great that even after 2 1/2 years you continue to keep in touch with this site and respond to posts regarding what you have already been through. It is very helpful to hear from all of you that have experienced what we are just now going through. Thank you so much! We hope that we can also be a source of strength for those who might be going through similar circumstances.
Hempre
- By cg3
- Posted November 7, 2009 at 4:54 pm
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I just lost my dauughter who was also born at 23 weeks. She had grade 4 bleeding on the brain which is the most severe. She survived six weeks before getting and infection adn we lost her. I know the doctor told us that children with grade 4 bleeding will have severe problems cerebral palsy and extremely mentally handicapped. I know a few people with these children. They are wheelchair bond and can't communicate with the outside world. Your case is different because your child is not as severe as mine was. My daughter came early due to placents abruption and my doctor also said that i may have an incompetent cervix.I can tell you that I tried to enjoy every moment I was able to spend with my daughter. I wish you the best.
- By 1pair-n-1spare
- Posted November 8, 2009 at 3:17 pm
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Hempre,
I am glad to hear that you have some person to person contact with another set of preemie parents. This was an unbelievable gift for us when we were in NICU as there weren't any websites like this one years ago.
As for your cervical incontinence (I can't begin to call myself, in any form, "incompetent"). When you get Aarav home and have a spare minute for research. Look into the Transabdominal Cerclage (TAC). It has a 90 - 98% effective rate as opposed to the success rate of the Transvaginal Cerclage of 78 - 82%.
My first child was born at 22/5 and lived only 2 hours. My second child, Julia, also suffered because docs decided that a vaginal cerclage would work (it did, for 27/5 weeks) and then she was born. With the TAC, I carried twins to 34 weeks with no bed rest and then they were born early because they were too big for my womb (nothing to do with my cervix). I am currently carrying my 5th child, 2nd pregnancy with the TAC and have had no bed rest whatsoever.
My prayers are with you, your DH and your little boy as you traverse this rollercoaster.
Lisa
- By momof24weeker
- Posted November 8, 2009 at 7:15 pm
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I just had to jump in here as your situation is very similar to mine...
First of all, CONGRATULATIONS on the birth of your son! I know how scary it is and the feelings of letting your child down, I know all too well.
My daughter was born at 24w 5d and weighed 1 lb 6 oz. She also had a grade II IVH. She is now 3 years 3 months old and has absolutely no residual issues as a result of her brain bleed. She has excellent fine motor skills, does ballet and gymnastics and swims. She is in a mainstream preschool program and has excellent communication skills.
The NICU journey is not an easy one. We were in for 105 days and discharged with oxygen and a heart monitor. It is easier said than done, but just take things one moment, one day at a time.
The best thing we ever did was start early intervention with my daughter based on her actual age. So when she came home from the hosptial as a newborn based on her due date, technically she was already over 3 1/2 months old. We based all her milestones on that and she qualified for therapy that I truly believe helped her develop into the amazing little girl she is today.
On another note, I too have an incompetent cervix. Like Lisa, I have a Transabdominal Cerclage (TAC) and carried my son to 35 weeks. I had the stitch placed prior to getting pregnant. It kept my baby boy cooking!
When I was in the NICU, I liked to read other stories about micropreemies. If you are at all interested, feel free to check out my CarePage:
www.carepages.com - charlottesweb
Also, I blogged about my TAC and my TAC pregnancy at http://pregnancyafterpreemie.blogspot.com
Good luck and you and your son will be in our thoughts and prayers - something else that made all the difference in my daughter's life - prayers!
Stay strong!
Melissa
- By Feistylioness78
- Posted November 9, 2009 at 1:09 am
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One of our boys had a grade III and grade IV brain bleed. He is delayed but just turned 2 and is now pulling himself up to stand.
- By Owen24weeks
- Posted November 9, 2009 at 10:28 am
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My son was born at 24 weeks 5 days with a Grade II IVH. He also required PDA surgery. He was in the hospital for 111 days, released 5 days after his due date. He is now 4 years old and very healthy. He did some therapy from 18 months to about 3.5 years for mainly speech and eating issues, but today he is like any other 4 1/2 year old. You would never know what he has been through by looking at him.
Take care.
- By Bradysdad
- Posted November 16, 2009 at 10:07 pm
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That is so reassuring. Our boy Brady was born Oct 22nd at 27 weeks and 2 days. He too has been diagnosed with a grade 2 bleed on one side. We are so worried. The follow up on day 9 showed no progression with 'borderline' dilation and the last ultra sound showed it is begining to resolve. It has done little to resolve our worries. He is currently on CPAP was ventilation for five days. He has CLD and PDA. The PDA is assymptomatic so they are hoping it will close on its own. He's been on room air since almost day one and over the last week or so very few spells. It sounds okay but the constant worry and fear is overwhelming at times
- By M-and-D-Mommy
- Posted November 17, 2009 at 1:22 am
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Congratulations on the birth of your son!!!! I wanted to wish you, your husband, and son lots of luck and prayers! Please continue to keep us updated on your little one. Someone is always here, if you need us. We agree and disagree at times, but we all have one thing in common...we have all entered the world of preemies. It can be a scary and isolating place. Please use us for support! :) GOOD LUCK!
- By ryansmom99
- Posted November 17, 2009 at 10:36 am
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Hello to Aarav's parents! Congratulations on the arrival of your son. Our story is not much different from yours. My son was born at 26 weeks due to an incompetent cervix (but they did not diagnose that at the time, my water broke) and he too had a bleed, we never did have docs fully agree on whether it was a high I or a low II but nevertheless it was there. He did exceptionally well in the NICU and we thankfully had a fairly uneventful journey (72 days). Today he is 3.5 and is doing amazing. His speech is impeccable, he is a natural athlete and he has already exceeded tests given to 4-5 year olds (and he has great fashion sense). As I write this I am listening to my husband practice the beginning of reading with him! I credit these accomplishment to a few factors: 1. We were a part of a truly terrific NICU 2. We had a great Early Intervention Team that worked diligently to ensure that he had every type of therapy available to him 3. We were strong advocates from day one (you have to ask for everything under the moon and never stop) 4. He had and has a great will to succeed.
I do not think my story is very different from many. I have said this many times on this site, you will get out what you put into your child. It is the doctors job to tell you the worst case scenario (as much as I too hated it), they are simply preparing you in case it should happen but in a good majority of cases it does not. Your job is to educate yourself as much as possible, this site WILL help and is a good foundation and start. My husband and I never accepted that failure of any kind would be an option or that our son would not have the opportunity to achieve his goals, we just worked a little harder than maybe someone with a full term child might have.
We did end up having another child, a daughter a little over a year ago. This is when I finally got my diagnosis of an incompetent cervix. I spent seven long weeks in the hospital on bed rest and she arrived at 29 weeks and 2 days. She ended up with bilateral Level II bleeds, my heart broke. She is now 14 months old and she is doing great, she is already talking and she is starting to try to walk. Her cognitive skills are completely caught up to her actual age and her fine motor skills are actually ahead of the game. The only repercussion we have seen so far is in her left side which has some low tone but we are working with a strong PT and OT to ensure that she one day has no issues.
I have done a lot of research and spoken to so many people about bleeds. Most will agree that Levels I and II do not have long term serious effects. The majority resolve themselves pretty quickly. When a bleed occurs there could potentially be some damage HOWEVER the more you work with your child the better chance they have of completly correcting the issue. Its the same concept as having a stroke except as adults we dont have the ability to redirect our neural pathways the way children do, their brain is young and capable of this process, therefore most children will overcome whatever problems a bleed brought on. It truly is the most interesting process to watch. For instance, our daughter prefers to use her right hand so we place a sock over it which forces her to use her left, she is conditioning her brain this way. The result of this simple exercise has been incredible. She is now, after only two months, using her left hand for pretty much everything, only we can see a difference which I feel will not be there down the road. I would recommend that you secure a strong EI team for when your son gets out of the hospital, you will automatically qualify b/c of the gestational age of 23 weeks.
As for cervical stitching, there have been mixed results with this process, it absolutely DOES not quarentee that you will have a full term pregnancy but you will definitely spend a lot of time on bed rest which is tough when you have a toddler running around. I have spoken to some people about abdominal cerclage which has much better results, when ready you can always look into that. I believe there is a site called abbyloopers that can link you to women who have gone through this process.
I wish you the very best of luck in your journey and if you should ever have any questions for us please let us know!!
Ella
- By Hempre
- Posted yesterday at 10:45 am
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In loving memory of our sweet baby, Aarav Kumar Singh (October 25, 2009 - November 19, 2009)...
Hello Friends. We lost our baby boy yesterday. He fought for three long weeks, and he is the one that gave us the strength to fight for him. He endured three surgeries (pda ligation, broviac, and finally stomach surgery in which he also had a colostomy). The two days following the last surgery were extremely critical, and it is during this time that our son couldn't fight anymore. Doctors had warned us that he was really sick, and while he needed the surgery the days following would be critical. He was under sedation, but doctors weren't able to get a good reading on his blood pressure. He became very weak.
Aarav had started out at 1 lb, 5 oz and moved his way up to 2 lbs, 1 oz. He was such a fighter - at one point my husband saw him on his stomach, trying to raise his head from one side to another. But there were too many things going on, and he got tired. Doctors had even "upgraded" his brain bleed from a grade II to a grade III/IV after another brain ultrasound.
Please continue to keep us in your thoughts and prayers - we need them to find the strength to move on. We will be in touch with you all - this is a great site for coming together. Talk to you soon.
Preeti and Hemant
- By meggs2003
- Posted yesterday at 11:40 am
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Hempre-
I am terribly sorry to hear of your loss. YOu and your husband will be in my thoughts and prayers.
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