Shelby's back in the CTICU with us and doing great! The GREAT news is that there were no problems with her coronary connections and they were able to get into her heart smoothly and balloon open her pulmonary valve. They found that there was actually a tiny hole where a tiny bit of blood was getting through which was perfect because it allowed them to poke through and expand the existing hole without having to “burn” a hole with heat. They showed us the pictures below and it was so great to see that blood flow through an open valve! This is the valve before and after the balloon (note the tiny string of blood coming through the first one and the plethora of blood coming through the second).
After getting into the pulmonary valve they could see that the ductus arteriosis hadn't closed enough for the stent – and if they put the stent in a loose place, there is nothing to hold it and it can float away and they had to pull out. So blood is now flowing through the pulmonary valve and flowing well but with such a small right vertical there will not be enough blood to go by that alone. The hope is that this ventricle grows over time but there is no way to make that happen right away. Now we need to decide whether to go back in by cath and try again with the stent or to do a shunt by open chest surgery. Doctors (the cath doctors, surgeons, and echo cardiologists together) are assessing the situation now and will be talking with us again tonight or tomorrow morning with the options for the next step. We feel that things went perfectly and that there is a reason having two procedures will be better for her in the long run.
Below is a simple depiction of what Shelby’s heart looks like (the doctors use these in explaining things to us and it is super helpful). Notice that the right ventricle (on the bottom left side of the paper) is small with muscle buildup (this is called hypoplastic right heart) and the pulmonary valve is blocked (for some reason I am like parentheses master right now and I kind of like it (parentheses and hashtags rule because they basically let you share a little side note out the side of your mouth) so I’m going to keep going with it).
The valve is now open! Now on to the next piece (the stent is the little criss-cross tube thing you see at the top of the pulmonary valve. The shunt would be put just on the other side of the aortic valve).
Again, we want to thank you all for the amazing support, love and prayers. People’s kindness just blows us away.
9 comments:
You and your beautiful and brave little girl are in my prayers. Thank you for taking the time to do the thoughtful updates that you do. Shelby is so lovely, and even at just a few days old, she shows such grit and spirit in her photos.
So glad her cath went well today and also so excited that they were able to balloon open her pulmonary valve! Truly amazing if she could be a 1 1/2 repair or have function out of her right ventricle!!! I'm sure you'll rest a little easier knowing she has one procedure under her belt...it's always hard sending them off and signing those darn consent papers. Ugh.
Keeping Shelby and your family in my prayers...specific prayers for her right ventricle to grow!!!
Keep on keepin' on!
Thank you for such a detailed update. Been thinking about your family all day. You've become such an informed heart expert!! Shelby is so blessed with parents like you. Hope you feel all of the prayers and support--so many cheering you on. You've got an amazing and brave baby girl. ~DU
My nephew has Left Vent. Heart Syndrome. What a journey. I was so happy to see your sweet baby girl!! And her coloring was amazing, so beautiful and pink!! What a miracle this medical world is right?? My nephew is 9 and is doing amazing!! Your family is in our thoughts and prayers…Thank you for sharing this journey.
I too have been thinking of Shelby all day. She's been included in many prayers in the Koplin household. We love the Eyre family.
I prayed for her several times yesterday. So excited to hear the good news!
so excited to hear the good news! Shelby is a warrior! She will win!
I'm so glad to hear the first part went well. Will be praying for the doctors to have clear answers as to how to proceed.
Your little family is very loved! Even by people you've never met.
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