More New Vocabulary Words

One thing I can say for sure since this whole CHD thing came into our lives --- I have added a plethora of new words to my somewhat limited vocabulary. Everytime we go to the doctor or have an echo, I learn a few more. Yet some of them still sound foreign and no matter how hard I try to research them, I still can't totally make sense of the full picture.

I suppose this is just one reason of many that I am not a doctor. Or a cardiologist.

Anyway, we received the results from Q's pre-op echo from last week. For the most part, it was unchanged but they did pick up two new things. Two things that won't necessarily change her prognosis, but two things that will make surgery a little more difficult.

The first thing noticed (but not unexpected) was an additional blood vessel that has formed off of her PA. Basically, after a number of months of the body being deprived of a full amount of oxgenated blood, it starts to form and dilate other vessels to help with the flow. For Quinn, it's not a huge deal - right now they only see one. Some kids have a ton of these little vessels and it becomes more difficult to repair. They should be able to go in there and just tie off that one vessel and be done with it.

The second new discovery was how her VSD lies in her heart. In all of her previous echos, her little heart was still too small to see how the VSD was orchestrated. We learned with this echo that it is "doubly committed". I don't understand exactly what that means, but basically the VSD lays below both the Pulmonary Artery and the aorta and affects both - and affects their output to the left ventricular side.

(Oh, my gosh, forgive me with how I am writing this - it is all just so complex. Truly, I need it to be drawn out for me because hearing it described over the phone is very difficult for me to understand. I can't even take proper notes over the phone - especially if it involves writing down numbers or letters. I invert them and later have to figure out what I wrote. Forget being told about the complex anatomy of a heart).

Anyway, as we've mentioned before, Double Outlet Right Ventricle heart disease only occurs in less than 1% of all heart defect cases (1 in 100 babies have a heart defect). To break that down even further, in that less than 1% DORV patients, only 5% of those children have doubly committed VSD. So, what was already a rare defect actually gets even more rare.

We never like anything to be super easy.

The good news is that nothing really changes with her treatment plan (surgical repair) or with her prognosis of living a healthy and normal life. These new details may complicate her surgery some but shouldn't affect the outcome.

The one thing that we still don't know -- and won't know until the surgeon is in there -- is whether this can be a one-time, lifetime repair or if she will need a replacement of some of the parts, thus leading to a few more surgeries. As my cardiologist said yesterday, it will literally be a "game time" decision. If you know me at all, you know that "gametime" decisions do not sit well with me. I am a planner. I want to know before the fact so I can make my peace with the situation and move on.

When I think gametime decisions, it makes me think of soccer way back when. How sometimes I would think I was the starting midfielder, and then there would be a "gametime" decision and I would be on the bench. I wasn't so much upset that I wasn't playing, but I was upset because my plan had me starting. I don't know if that makes sense at all actually, but the point is I like things in nice, clean lines. I want to know the gameplan - we will go in, do this, repair this, move this, suction this, and be done. 

Yet that isn't going to be the case and I HAVE to be ok with that. I HAVE to trust that the surgeons are experts at these decisions. And I HAVE to trust that God will enable their minds and hands to make the wise decision. I know He is the master of these gametime decisions. Ironically, my pastor's sermon this past Sunday was all about dealing with the fear of uncertainity, of the unknown. One main point that he drove home was that God is the king of dealing with chaos. He shines brightest in times of chaos. Thank goodness, because I am a total wimp in chaos.

So Quinn should be presented on Monday (it was supposed to be this past Monday but our surgeon was at a conference). We will know then what his thoughts are. The plan is still July or August surgery. I am so thankful that my cardiologist continues to encourage us to live our lives. To go on vacation. To go out to dinner. To allow Quinn to be around other people. He has complete confidence that she is going to be ok. And that means the world to me.

My emotions swing back and forth like a pendulum whenever we have "Quinn updates". Part of me is elated that we will get the big part of this behind us. Part of me is scared to death. Part of me just wants to ignore it until surgery day. And part of me can't stop thinking about it.

I've had some people tell me that they don't know how Matt & I have seemingly dealt so well with this situation. I am flattered by those compliments, but at the same time, part of me wants to shout, "It's a big fat lie. I'm not ok with this." They don't see the dark moments when all I want to do is cry for my little girl. Bawl big fat tears that she has to go through this. My mind instantly goes to surgery day when they take her away from me and out of my arms. She is going to KNOW that something is up. She will be old enough at that point to feel our mood, to smell the hospital, to recognize strangers taking her away from her momma and daddy. And she won't understand. Then I think of Ryan, home without me for at least a couple of weeks. I'll be able to come home for moments here and there, but by and large, I will be away from him for awhile. And he'll be separated from his playmate and fellow troublemaker. But thankfully, years and years from now, while we will still remember, they won't.

So we try to be strong for our little girl, for our family. I try not to let the dark times overtake the sunshine, because darn it, there is so much to celebrate in our lives. The kids are thriving, they make me smile every day, we have good jobs, great lives. We have so much to be grateful for. Anyway, I wasn't planning to get all morose and sad-sounding in this post. Sometimes you just have to get it out.

Grateful to you all for reading about our journey and your continued prayers. We will keep you posted on a surgery date as soon as we find out.

In His Hands,

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Lisa Johnson said...

Tears running down my face...only because of what a wonderful mother you are and because I know a lot about what you are feeling and will go through these next few months. Don't hesitate to lean on me, friend. I get it and I am always here for you. Little Quinn is going to do amazingly well. Field and I send our love! Oh and I owe you a reply on Facebook. Will work on that!

Tiffanie said...

Please don't apologize for your post in any way... it's healthy for you to get it ALL out. Additionally, we are here to listen/read and then lift you up in prayer. I hope you can feel the peace that I am praying for you to have right now. You are one great mommy!

Barbara "Ma" said...

Meagan, when I read this it all became very clear why Quinn is a strong little girl. God has given her the strenth to endure this upcoming surgery, that has been anticipated for so long. The anticipation and the unknown, for us, is frightening, but God has had a plan for feisty, I want what I want, Miss Quinn, and it is because of her attitude that she will be able to handle whatever is thrown at her. She does this everytime she climbs over her brother, goes through a barricade, or under a table. She has a goal, and nothing, I mean nothing can stop her. We are all so blessed that we have God who is preparing Quinn to overcome what lies ahead. Love you

Amy said...

Oh Meagan. Thank you for this. I keep thinking everything's fine because I know how cute and fluffy and pistol packin' Quinn is (not an ounce of stranger anxiety for either of them!) And up until this point I've been back in the "minor issue" days back when they found this while she was still inside. It's so hard to have your little one in the hospital, because you're right, they don't understand and it scares them. I know Quinn is going to do great though, and I know it will add to her fighting skills which will serve her well in her future.

I'm excited for my Team Quinn shirt. And I'll be praying for your sanity in the meantime and certainly during. Love you so much!

Praying For Abby Grace said...

First, I will just say that I LOVE you more than you know. Second, I will say that we are so alike we could be sisters!! I NEED to know the plan every day and I have a seriously hard time giving up control to let things happen. I believe with ALL OF MY HEART that God is begging you to just let go, and let Him work out His miracle. There were times before Abby Grace's brain surgery that I felt as if I could almost hear Him saying to me "Okay Amanda are you going to give it over to Me yet?" I am not preaching to you whatsoever, but maybe part of His plan is just wanting you to know that he will work out every detail before it even happens.

Lastly, (sorry for the novel) my biggest fear was them ripping Abby Grace from my arms on surgery day and just watching her cry all the way into the O.R. followed my lots of tears from me. If you go back on my blog, you will see that she rode into the operating room in a PINK Little Tykes car and smiled and waved on the way in, with NO meds!!! Now, obviously Quinn will be too small for a car, but please know that all of those tiny fears will be taken care of. I love you so much and I am in constant prayer.


Anonymous said...

I'm really late in commenting (darn Google Reader!), but I just wanted to let you know that you and Quinn are always in my thoughts and prayers. I just recently found out about an intestinal issue we'll be dealing with once our baby arrives in a few weeks, and your strength and faith have been a great example to me. God bless.