Friday, December 9, 2011

Surgery for Memphis

Last Thursday Memphis had a routine ct scan done. We had almost made it home when her neuro surgeons office called to tell us to come to his office to discuss Memphis' ct scan. We felt at this point that things had likely changed. When we got to his office and talked to him he told us that the fluid in her brain/hydrocephalus had increased and that the anuryism/VOGM looked larger as well. He said he had called and talked to Dr. B. in New York, and that he knew about the changes.. That we would be getting a call from him soon. The next day when Dr. B. Called he said since things have changed he thinks we need to intervene now. The good news is she has no outward signs in the way she looks and acts that anything is wrong. We need to start surgery now to keep her that way because if we didn't problems would eventually start. We are in the hospital right now it's been one week since we got the call telling us she needs surgery. Dr. B. has been awesome he actually wasn't suppose to be in today but said he was willing to make time and fly in to do her surgery. We're praying everything goes perfect today and asking that God will guide the drs through out the surgery and watch over our precious baby. We're hoping that doing surgery for the anuryism also helps the fluid resolve.. if it doesn't she could need another surgery done soon in Alabama for the fluid we'd likely do a procedure called a third ventriculostomy instead of a shunt. All that will please pray for Memphis today, and for strength for us. If you are interested in updates on Memphis you can find her page on Facebook.. Just search for Memphis Isabella Myhre.. And like the page to receive all up dates. Take care my friends.

Monday, October 10, 2011

facebook page for Memphis

Hi Everyone, hope you all are well. We have been very busy lately. Wanted to let everyone know that Memphis is stable as of right now. At her last cardiologist apt on ultra sound showed that she might have a separate issue with her heart:(

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.

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Wednesday, September 7, 2011

A Post of Pics:)

Our Sweet Sweet... Dassah Love

Precious Memphis Isabella

2 Perfect Gifts from God

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Monday, September 5, 2011

The Vein of Galen Malformation

The vein of Galen malformation is a special case of arteriovenous malformation. The vein of Galen is a large deep vein at the base of the brain. As in other AVMs, the capillaries, which normally slow blood flow and allow oxygen exchange with the surrounding tissues, are missing. Blood flows directly from arteries into veins without slowing down and without releasing its load of oxygen and nutrients.In vein of Galen malformations, this rush of blood goes almost directly to the heart and can rapidly overwhelm it, leading to congestive heart failure. Sometimes the defect will be recognized on an ultrasound before birth, but most often it is seen in infants who experience rapid heart failure. In less severe cases, a child may develop hydrocephalus because the enlarged malformation blocks the normal flow or absorption of cerebrospinal fluid.

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.

Memphis was Born with The Vein of Galen Malformation. So far she is still doing great. In fact, if you didn't "know" anything was wrong you'd never be able to tell from the outside or effects at this point because she looks and acts completely normal.

Since this is SO RARE Dr's. can often go their entire careers without ever coming across a case. That's great that this doesn't happen often of course. However.. NOT GOOD.. as far as finding a Dr. Who has ALLOT OF EXPERIENCE with The Vein of Galen Malformation. After all.. I don't think most parents would want a Dr. who has treated this only few times to never to do the procedure on their child.

Memphis has a appt. with her Nero surgeon tomorrow. We have a few more questions for him, but the main one would be... HOW MUCH EXPERIENCE does he have with THIS? Yes.. we should have asked this before we left the hospital, but we were taking in a ton of info. Since then we have tried to research this condition. There is a Dr. in New York who specializes in The Vein of Galen and does Embolization procedures routinely. So our future could hold a trip to New York. After her appt. tomorrow we will definitely be starting to make some big decisions.

Please continue to Pray for a complete Healing for Memphis, our family during the wait, and for wisdom as we start to make some big decisions.

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Thursday, August 11, 2011

1 week old (born with something rare)

1st off let me start this post off with a pic of our 1 week old baby girl Memphis:) She is SO SWEET! And we are so blessed to have her in our lives.

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.

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Friday, August 5, 2011

*Memphis* Isabella is here!

She was born on August 4th, At 9:00 pm, weight 7 lbs 8 oz., and 20 1/4 inches long.

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
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Thursday, August 4, 2011

39 weeks & 1 day

Well I went to my dr appt at 1pm today, and all went pretty good. I'm super excited that the dr was on the same page with me as far as inducing! They sent me straight over to the hospital:)

I'm settled now in L&D, they broke my water, now just waiting on the "pit" to move things 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 Hoping this goes fast and smooth! Yay! We're having a baby! Again! Feels almost like a dream still.
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