Friday, December 9, 2011
Monday, October 10, 2011
It's so much info to update. So we made Memphis a facebook page so family/everyone can keep up with her. And hopefully it will raise a little awareness of this rare condition(vein of galen malformation) as well. You can just search for...Memphis Isabella Myhre on Facebook and like the page. I invite all who are interested to like the page. I'd love to share Memphis's Journey from diagnosis to cure with you all.
This condition is so rare and it does feel like no one can understand. But we continue to take it day by day. It's very scary not knowing what the future holds for your child health wise when your child has a life threatening disease. Seems I stay tired all the time from emotional tiredness. My mind needs a break, but I just haven't found a way to shut it off(even in my sleep). The Emotional Roller Coaster that comes with going through something like this is indescribable.
Here's a pic of the aneurysm in Memphis's brain(VOGM/vein of galen malformation). The large mass in the middle is the vein the aneurysm is in. Clearly this is NOT what a normal vein looks like. Honestly it's very hard for me knowing that this is in my little baby's brain.
Sorry if this post is a downer. I try my best to be honest though. Memphis is a happy baby, and we are getting her the care that she needs. The Dr. we found in New York who specializes in this rare condition will be the one to do her embolization procedure/s to fix this. He won us over with one phone call.
Gotta go for now. Both baby girls are crying. Take care my friends.
Wednesday, September 7, 2011
Monday, September 5, 2011
The most effective treatment for the malformation has been embolization rather than surgery. By feeding a narrow catheter through the arteries that lead to the defect, surgeons can introduce materials that block the blood flow through the malformation and form a clot that closes it off. The materials used can vary from a kind of fast-acting glue to small particles or coils. The procedure is often not 100% successful on the first try. By gradually closing off remaining areas of blood flow in subsequent efforts, surgeons can usually shutdown the pathway. After successful embolization, patients can go on to full and active lives.
Thursday, August 11, 2011
Now I want to say that I would've posted sooner, but we have been through allot over the past week. A day or so after she was born they did a Ultra Sound on her Brain. A Nero Surgeon came into our room early that morning and it just so happened to be the morning I was severely sleep deprived and couldn't think straight:(
What the Nero Surgeon began to tell us SHOCKED us. Our little girl was Born with something called "The Vein Of Galen Malformation". IT is Very Rare, and from what were told most likely genetically linked. Babies develop this in the early development stages of pregnancy.
It's a Vein in the brain that is Malformed. It is HUGE in fact, and doesn't even look like a vein. Its basically a "Aneurysm in the vein". One of the Main RISK with this is it can cause "Congestive Heart Failure". That can happen because there is TOO MUCH Blood being put off from the vein into the heart at one time.
Another Risk is hydrocephalus. This is where too much fluid builds up on the brain/ventricles. She has some of this on her ventricles. Although not enough at this point to need to put a "shunt" in.
She will definitely need surgery at some point for the vein of Galen. The Dr. wants to wait for a yr if we can because the bigger the baby the better of course when doing any surgery.
At this point her heart is stabilized and bpm is normal, so we'll try to let her grow. The Nero Surgeon wants to see her once a month, and for her pediatrician to keep an eye on her heart, head growth ex. And we're to watch for signs of anything wrong at home as well.
I'm going through Extreme Heart Breaking Concern for my Baby right now. It's late and I don't think I have much more energy to write.
If you want to know in more detail about "the vein of Galen malformation" just google it and plenty of info should pop up.
I'm asking that everyone keep us in your Prayers. I can not really begin to explain what I'm going through. Although even in this situation I am Thankful to God for Both of my Children. We're honestly going to have to take it one day at a time right now. For now that's all I can manage it seems. And just that is a huge struggle for me. Going to try to get some sleep, we have a appt in the morning with the pediatrician.
Friday, August 5, 2011
Both baby & me are doing well. I'm even attempting to breast feed this time, and that is going well so far:)
Gonna try to hopefully get a nap in now.lol
Thursday, August 4, 2011
I'm settled now in L&D, they broke my water, now just waiting on the "pit" to move things along.lol I'm sure after they give me that I'll be asking for an epidural not long afterwards. I'm at 3 to 4cm right now.
Just wanted to update y'all before pain kicks in.lol Hoping this goes fast and smooth! Yay! We're having a baby! Again! Feels almost like a dream still.