Needed Knees

I know it's been way too long that you've all heard from us. I've always said, no news is good news.



I can promise you this has been a good thing.


but...




It's time for some news.



Vay went in for an exploratory catheter procedure on Thursday Feb 10, to check her SVC, (the vein that brings the blood from her head/neck and arm into her heart) and her pulmonary arteries seeing if they have grown at all, all to see what further action they want to take with her shunts while waiting for her new heart. The cath would see if there were any blockages or if there were any blood vessels around the shunt that may have started to narrow or close.

Dr. Divikar told us he would be out to tell us if he was going to do anything if he saw any of the above.

We waited for about 3 hours and got the page to come talk to the Dr. After doing the exploratory part, he met with Cardiologist, Dr. Reinking and Surgeon, Dr. Davis to discuss the options. He did say there were things he could have done while he was in there. The SVC WAS occluded but still open so he COULD have ballooned that, the vessels around the shunt, or maybe even used a stint to open up those areas. Overall, he said doing those things just would have bought her a couple months of better/slightly higher saturation's. So after talking with the other Dr.'s, they decided that wasn't the best solution.

He explained because her oxygen saturation's are so low, that her body tries to protect the most vital organs which are her brain and her heart. and the body sends most of the oxygen to those areas. So her extremities, like hands and feet, as well as other organs, are not getting the blood that they need and over time that can be dangerous, as it can lead to organ failure. He also said that since the SVC was so closed, the blood from her head doesn't drain as well. That combined with low oxygen sats, are what have been causing headaches, fits and her biting her little fingers till they bleed open wounds.




So, all 3 Dr.'s decided that Vay needs to have surgery right away to put in a larger sized shunt.

Liiiitle deeper...The shunts she has now are 2 years old and don't allow enough blood flow to get to the lungs. She has 2 blood vessels that the shunts connect to, and as the blood vessels have been growing, the areas that are not connected to the shunt, pull away from the shunt and narrow, which also decreases the amount of blood flow through the shunt. This causes the vessels to not be straight, which, once again, decreases the amount of blood flow that would normally flow through those vessels.

We stayed over night to watch her very low saturations, but were told we could leave the next day. We were able to spend a whole week with our Vay before her big day.







Today, we went into Pre-op. Veiyah got weighed, measured, leg cuffed, heel poked, blood drawn and didn't like one bit of it. But there are always smiles from our V...



The final thing we had to do today was wait for V's surgeon to come and tell us what he at least plans on doing, that is until he gets in there to make sure.

Here it is, and then

...a little piece of Mama's mind

When cardiology finally approved and gave their blessing for Vay's surgery to go on tomorrow, Dr. Davis explained how he will first be opening her chest, and that will probably take the longest. Scar tissue has been in the making for 2 years now and sometimes that can take hours to get through. He's a very precise Dr., and we appreciate that. You never know, though, it could take as little as 20 minutes. AS wonderful as that sounds, I prefer precise to timely.

Wouldn't you?

When he gets in, by snipping the wires that have brought Vay's chest back together many times, then breaking her sternum to open her rib cage, he will see what Vay's heart has in store for him.

(I can tell you what it's had in store for our family...but that's another update)

What he wants to do is snip one old shunt, since there is hardly any blood flow through it anyway, and connect a new larger one, elsewhere. He will be putting Veiyah on the by-pass machine so that her heart is not in charge of her oxygen. As far as we know, today, he will not stop V's heart tomorrow.

Small breath

Dr. Davis will put the shunt where he see's fit and then he and his team of Dr.'s, Cardiologists, Anesthesiologists, everyone who cares that my daughter makes it out of that room alive,

will sit...

and wait...

To make sure that her saturation's stay around 75-85. To make sure that her heart still beats.

To fulfill their promise to the family that just entrusted their daughters soul with.

To make sure she stays alive.

Too many times.

Too many times have we given our consent, written our names with our daughters blood. Too many times have we said good-bye to this once ONE egg, then 2, then 1 again, then 1 again. See if you can understand that. One egg was two souls, then one was our Aderah whom we watched fly home, then that last one was one too many Veiyah's. Where we kissed her forehead good-bye one more time, hoping to smell that forehead again, when she was returned to us.

When Veiyah is (because she will be) stable, Dr. Davis will wire her bones back together and glue her skin in preparation of healing.

This will all be done while Veiyah sleeps peacefully.

Sweetly.

Dreaming of her Mama and Daddy. Of her Didi and Sissy...

of her Father who holds her in His hand, and her twin sister in the other.


Tonight our little (to us) family gathered around Vay, taking turns holding her and kissing her sweetest cheeks. We then began talking to her and telling her how much of a joy she is to each and all of us.

We cried,
we trembled,
we remembered...

2 years ago almost to the day when she literally fought for each breath.





We also pleaded with our God to bring Veiyah safely back to us. To give us more time with our precious, sweet, funny, silly, Miracle Girl~













We know we have all of you, V's Knees, so we once again ask you to fall down.

Let your knees bruise with dirt.

For Veiyah.

For Life.









And we thank you,


forever.





Madi made a video to go along with the first song playing on our new playlist, that's by one of our dear friends, and has been so heavily on our hearts. http://www.youtube.com/watch?v=aufFXBL16UU Isn't she amazing? (Remember to mute or pause the Ipod at the very bottom of this page)






*PS. Please feel free to take any pictures. One picture particularly, we'd love to see all over Facebook. The last one, so that Vay is prayed for. Thank you friends~