Tuesday, November 3, 2009

Micro Preemies and Brain Bleeds

According to the March of Dime 534,000 babies are born premature in the United States each year. Babies born under 35 weeks gestation are considered premature. While the " preemie club" from a medical perspective include larger gestation preemies there seems to be a " sub" club. One that not many are a part of. Each year only 50,000 micro-preemies are born in the United States. A micro-preemie is generally considered to be born under 3 pounds and before 29 weeks gestation.

The later gestation preemies are at risk for delays and other "preemie" issues and it is a good idea as the parent of these later gestation preemies to be aware and be proactive in their development.

Sometimes, the members of the micro preemie club can be pretty harsh and not welcoming to the older gestation preemies. ( I know I am guilty) because as a 5 pound preemie and a 1 pound preemie the issues are far more extreme. Meaning the chance of something being "wrong" is less likely and the chances of US having delays is much greater, the ride of prematurity longer and the effects more lasting we tend to have bitter pants!

Long term preemie issues can be tough and it can also be a lonely place. One of the reasons is because those with Micro preemies do get grouped into the later group and everyone asks "well they are fine now right?" question. Well maybe at 34 weeks our kiddos are good to go and "catch up by 2" but at 25 weeks there are RARELY a preemie that has no lingering effects.

If you are in the Micro preemie club the dreaded words is brain bleed. Dreaded, because no one wants to know that inside their growing babies brain is a bleed, a bleed that causes damage. That bleed will leave your child with an uncertain future.

Brain bleeds are the largest cause for brain damage in a child. It is also the reason behind MANY Cerebral palsy diagnosis. For us, that brain bleed has left us with LOTS of days and weeks and months of an uncertain future.

Tyler was diagnosed at 24 hours old with a grade 3 and 4 IVH. I am not certain on the grade at the very start but the end result was a very very bad hemorrhage. Grade 1 and 2 leave usually no lasting effects and if they are lasting they are very minimal. But grade 3 and 4 touch brain tissues and leave a damaging hole in its path.

His heart defect known as a Patent ductus arteriosis needed to be closed to help regulate the blood pressure in his body. The lower the blood pressure the less pressure on his already damaged brain.

At a small 1 pound 11 ounces and just a few days old Tyler underwent heart surgery. It was a surgery to place a titanium clasp on his defect to help close it off. The surgery was done at his bedside. By the time I walked back to our room and had a little breakfast Dallas was already back telling me that they were done and Tyler did pretty well.

His bleed would be the cause of many heartaches and sadness in the coming years but it would pose many health risks as well. His bleed was the result of his hydrocephalus. Having hydrocephalus and draining out fluid in the NICU was the cause of his Craniosynostosis and now at 4 his hard time walking and cerebral palsy and lack of speech is a direct result from that faithful day we were told he had a brain bleed.

One thing we do know is that we are one of the lucky ones where we did get to see our child walk. While getting all of the information we could in the NICU we were told of the possibility that Tyler would be in a wheelchair. While this is still a possibility ( he doesn't have the greatest ability to be stable all lone or without assistance) it hasn't been the case for Tyler yet. He is doing things that most kids with this degree of damage.

We are very proud of him. "Most" Days he works really hard at therapy. He is wonderful at being a kid. He is generally happy, loving and I love him SO much.


Rich said...

I was 4lb 1oz, and early. This was the main cause of my nystagmus. Thankfully I don't have other issues. Grandmother always speculated that the incubator was the cause of my eye problems because back in 1979 they did worry too much about covering the eyes from the heat lamps used to keep us little guys warm. Of course we're not 100% on this, it's only speculation.

But so many things have changed in the past 30 years. We're all thankful for every angel that can be helped to stay with us.

The Henrys said...

What a very heartbreaking journey you all have had, and look how beautifully you have come through it! You all are amazing!

Cjengo said...

Yep, Jude was not a preemie but did have a bleed (a stroke in his case) bilateral that caused massive damage. It's amazing how far we have come, but how little we can do for bleeds. I also think there should be better education throughout the community about the possibility on bleeds and that 1 out of 4000 babies will suffer from one, thats a lot. Thanks for your post!

Tasha said...

Brain bleeds are very scary. Bree had Grade III bilateral ventricular bleeds. Which is the cause of her dyscoordination, and inability to eat by mouth (she has a g tube). Thank you so much for posting this! It is soooo important for people to realize that being that early affects kids for the rest of their lives. It's not something that Bree or Tyler are going to "grow out of".

Matt and Brianna said...

I can not even begin to imagine all you had/have to endure! You're right about us "older" preemies. I feel guilty when I even call Baby Joe a preemie. He was 34 weeks. Only in the NICU for two weeks not months. BUT, having said that, IT WAS THE HARDEST TIME OF MY LIFE!!! I knew the possibility of all the effects of prematurity. We were lucky, I guess. And dev delay is our only trial now.

I appreciate what you guys go through and I truly think you are amazing!! As are your babies!!

Lloyd Family said...

Hi, I just found your blog this morning, maybe you don't even read comments on such old posts anymore. My nephew was born at 26 weeks, 2 pounds. That was 6 days ago. My brother told us this morning that he has brain bleed. I don't know anything else. Thank you so much for documenting this aspect of your journey. You have given me information and I am grateful.

Anonymous said...

I had micro-preemie twin boys on 4-11-03.They were barely 24 weeks. My son Cyrus had a grade 4 bleed and Ramsey a grade 3.It feels like yesterday, although it's been almost eight years.Cyrus was in the NICU for a moth -n-half before he died. The first time I got to hold him was to watch him die in my arms.Ramsey on the other hand spent three-n-half months there, and then got to come home. We've had OT,PT,and speech. He has low immune,asthma,and his right side impulse is a little slow, but all in all he's my miracle. I have been a single parent from day one, the road has been hard and lonely, but I wouldn't take back even a moment.