Holding my breath and pressing on

Pin It I thought I would get to this post sooner but life has me under arrest right now and I can't seem to escape much. 
So I have decided to skip some of the details and go right to the plan. I heard back from Boston Cardiologist. I had a very long conversation with the very man our baby girl will be in the care of when the time comes. We were told that, left as is, using only medication that is not working, we do not have much time left with Ivy and that we do need to move fairly fast. They feel that while the risk of this surgery is quite huge, they have great expertise and she has a great fighting history and they feel it is the best route for her. Its aggressive, and very different from the plan here in Phoenix. Ivy's heart squeeze is terrible and the only way for it to ever have squeeze is to get blood flowing through her Right Coronary Artery. Now before I go on I need to quickly say (because I am forgetful and might not get to it later) In address to the comment that it is difficult to read the blog with the lines. Im super sorry about those lines, I actually never had noticed and you are the first to mention it. I am in great need of revamping my blog (sweet Ivy needs to get on that header and , well the name, hello? lol).  I would love to have an all white background. But since Im not too savy that way and it costs money that needs to go to Ivy right now...... Darn pink with lines it is for now.  I will try to make the writing larger because it is probably annoying everyone and I just never knew it. Sorry friends! 
Ok now to Wife of the Prez, that commented about your sweet heart girl having the Fontan for the same heart defect as Ivy.... Im guessing there are some signifigant differences between them or she would have had one of these two, the Rostelli or the Nikaido. The Nikaido is the best choice for a heart like Ivy's. They would never do a Fontan on a Double outlet Right Ventricle, Pulmonary artery hypoplasia, 19mm VSD........ Im guessing your daughter might be a single ventricle? Thus making her a Fontan candidate. I know we have chatted before as we  were on a similar timeline with bringing our last 2 littles home, and you beat me.    :)~ Your kiddos are absolutely adorable!!!!! Feel free to email me privately and I can share more. Im in awe of your girl coming home in 8 days!!! WOW! (I am dreaming that for Ivy this time!)
Ok on to the plan.
Dr. Del Nido and Dr Baird will be performing Ivy's open heart surgery. Dr Baird specializes in specific valve repairs and he will be working right alongside Dr Del Nido. They are both Harvard Medical instructors in surgery. Del Nido is the head of the cardiac program at Childrens Hospital Boston. She will be in VERY good hands!! I figured if we are going all the way to Boston I am requesting the very best. They said to plan on being in the hospital 4 weeks. I pray it is much shorter but honestly 4 weeks is nothing at this point. Show me my babies heart beating after surgery and I will be one content mama!!
The repair~ 
Remove the patch they believe to be sewn in such a way that the tricuspid valve is now tethered to it, and the mitral valve as well. Re do the entire patch. Repair the damaged tricuspid and mitral valves. Reposition the Coronary Artery and place a shunt in it. If this works then it will get blood flow, if it does not then they will need to perform a bypass. Not sure how they will do that as they would use a mammory valve and hers seems to be missing... Please specifically pray the repositioning and adding a shunt solves the problem. Any surgery involving re-doing something is very high risk, but that coronary artery is where the huge risk is. Please pray specifically for good results with that. Again, I am shaking like a leaf 24/7, anxious as all get out, yet at such peace with this plan and how we ended up here. 

                                       
The thought of her being opened up again so soon, ugh;sjfdpejfpevenqvi..... but it will be ok, I know it will. It is just hard to watch that pain and discomfort that first week. Mama Bear I am sure will be hard at work again as they discover in Boston that my tiny girl requires the sedation of very large Mustang in order to be comfortable. 

Our entire family will be going to Boston to rally around our precious gift from God as He pulls her through this surgery and gives her a whole new life filled with HOPE! We feel there is no other way to go through this, other than together. Let me tell you, we LOVE this child SO very much and it might get a little loud and a lot tearful when they take her from us and in to surgery... I can barely breath typing this. It's like I find myself holding my breath each time I envision that day. But I also found myself unable to breath when the Doctors at Boston told me that we do not even have months with Ivy if we continue the path she is on. Whole lot of breath holding going on!
I don't tell you this for sorry feelings or hang in there wishes. Until you have been right here where we are, you really just can not even fathom. I do tell you because I know she is so loved around the world and you are all a huge vessel that God used to help hold us together last time. Can we do this again? Can we bring on the Team Ivy and pray this Beautiful Angel to full health? 

I don't know why things had to go so rough for this baby or so long before we got to here, but doesn't really matter now. All things will be understood in the end. All things both good and bad. And until that time, we are where we are for a reason and we will praise our Father right through every last drop of this storm. And on that day, His will will be done and we will continue to praise Him!!!
So that's it. We anxiously wait for the call that says we have insurance coverage details handled, costs discussed and are ready to schedule in the O.R. 
It could be as early as the last week in September and it could be as late as the 3rd week in October. The sooner the better, yet I just held my breath again. Please pray for a peace and calm for all of us. We are only as strong as human can be. And our heart are aching. 
Have I mentioned the depth of our love for our Little Ivy Joy, holding breath again!

Thank you all for your love and support! We are being blessed by offers of airline miles and meals, help with the bigs and visits in Boston. We are so eternally grateful!!
After the first week, Bryan will head back home so the bigs can go back to school and Bryan can go back to work. Lexi, and my oldest daughter Quincie and I will stay in Boston. Quincie, God bless this precious girl, will care for Lexi while I remain with Ivy. She will then give me little breaks so that I can spend some time with Lexi. If it gets too lengthy and she needs to head home then my mom will likely come out to relieve her. Quincie is in her last year at ASU but takes all of her classes (full schedule) on line due to moving to Virginia. Please pray that she can continue to do school even while caring for Lexi because if that is not working out so well, she will need to go home and I will be in a big pinch! 

Thank you again! 




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