Well, not really 246, but it seems I've written a lot of posts relating to Q's heart. I guess that's only normal. However, I will say I have been really glad not to have to post an update recently. We've really just been living life these past few months since her last appointment, save for some "It's My Heart" involvement. But her heart issue has not been on the forefront of my mind every single day, which has been a welcome and needed change.
Yesterday we had her cardiology check up to see how her sats were doing, blood pressure, weight, etc. Of course, all weekend the appointment was in my subconscious. I woke up almost every hour on Saturday and Sunday evenings just thinking about it. As I have written before, everytime I think I know what's going to happen with her surgery schedule, "my" plans are blown out of the water. (How does the saying go? God laughs when we make plans" or something like that). I have mentioned before that I may just be a tad bit A-type, so schedules and planning is seemingly important to me. I like to know what's going to happen - makes me feel in control. Which I need to get over, because these few years have shown me that no matter what, He is the ultimately in control. I am working on it. Anyway, a fellow heart mom gave me some good advice --- she said "make like a jellyfish" when going to these appointments and having expectations with a heart baby. I like that a lot. I repeated that over and over to myself yesterday as I made the drive into town with my precious little cargo in the back.
(Have I mentioned before how strange it is to travel with just one baby in tow??? I feel like an appendage is missing or something when I unload one infant carrier vs two and pop out the single stroller and not my "boat". So weird. And it's weird not to get the looks that I have become so accustomed to when I have two babies with me. Strange as it sounds, I kind of miss the comments and looks! If nothing else, it makes our outings more interesting).
Ok, sorry for the sidebar. Anyway, we had our appointment and for once, all went incredibly smooth. We thankfully did not need an echo, so we didn't have to worry about sedating Quinn which was a huge relief. Walking into the waiting room, it was the least crowded I had ever seen it - shocking for a Monday morning. We got into a room before I could even break out my Food Network mag, had our weigh in, length check, pulse ox and blood pressure taken. I had a small heart attack when Q's pulse ox kept popping up at 75-77% but she was pretty squirmy. When she finally settled down, it settled into the 81-84% range which is normal for her and where it has been for the last 6 or so months. Yay!
The first thing our doctor said when he walked into the room was "Wow, look who must be eating!". Oh, goodness - I almost cried tears of relief that he could see how chunky & big she is getting. His big thing is that she gains weight to get that Pulmonary Artery to grow, so I always feel like I have to defend myself and her on her growth (granted, he is looking at everything from a heart perspective and just wants the best for her, so I am not offended, just stressed!)
Bottom line is that her sats are good (for her). Her weight gain & growth has been great. Surgery, while inevitable, is not emergent. We have time to schedule and hopefully get our surgeon of choice. Praise God! So the plan from here: he will contact me later this week to get me in touch with Dr. F's office. From there, we will schedule our consultation with him. We may need one more pre-op echo, or they may just forgo it since she's had so many and there is likely to have been little or no change. Once we schedule the consultation, we will also get on his schedule.
Our doctor's hope is that it will be July or at the latest August. He wants to get her finished and recovered well before cold & flu season. He gave us the full blessing to go on our family vacay in June without restriction. Yay! So, that's the plan from here. We will continue to just live life until it's time. Honestly, just knowing that we are only a few months out - while scary, is also somewhat of a relief. We are ready. Or as ready as we are going to ever be.
There still is the chance that this surgery will not be the lifetime repair that we hoped for. Her PA has always measured pretty small, so it will just depend on what it looks like once they get in there. If they are able to work with the "original equipment" and just repair versus replace, then her likelihood of not needing surgery later increases. If they replace, she will need at least 2 more surgeries throughout childhood. If they repair, there is always the chance for a leaky valve or for a catheter-tpe procedure to open up the PA later on. However, we will worry about that all later - this is the first big step in being able to get beyond this. Regardless, Quinn should prayerfully be able to live a relatively normal life, save for some extra doctor's appointments and annual echos in her childhood. She should be able to play soccer, dance, run, or do whatever her little heart desires. Thank you, God.
Thank you all for your continued prayers for Team Quinn. We are so blessed to have such an amazing support system all around us. God does hear and respond to prayer - we know that for sure!