Well, what can I say... so grateful for each and every one of you for your kind words, prayers, blessing, and thoughtfulness. I don't know how many times I can say that but I will continue to repeat it until I am blue in my face! Y'all helped us through some hard times yesterday and lifted us when we needed lifting. I have no doubt that God was working in and through you all to keep us upright.
So onto updates --- we got to see Quinn yesterday afternoon (Tuesday) about 5pm. Despite being warned of how she would look (lots of tubes, wires, breathing ventilator, etc, etc), she looked gorgeous to us. Yes, it was hard to see her all tied up like that but oh my gosh, how thankful we were to lay eyes on her. One of the first things we noticed was how beautiful her skin is now --- I knew her skin was always a bit "mottled" because of the lack of oxygen circulation & would especially look that way if she was slightly cold, but I was just so used to seeing it that it never bothered me.
Now her skin is PERFECTLY PINK and healthy. Just like it should be. I looked up at the monitors for her oxygen saturation levels like we used to everyday when she was in the NICU and saw a number that we have never seen - a perfect 99 and 100.
Tears poured down my face when I saw that. For most of her life, she has lived in the low 80s - and now my precious girl has a perfect saturation. What a miracle - and we can only pray that it continues.
We spent most of the evening just looking at her and holding her little hand - and then finally at the urging of our doctors and nurses left for a bit to get some sleep. Monday night was mostly without sleep, as Quinn did not care much for the prison-issue metal crib she was in. So with that, combined with a lack of sleep Sunday evening, then of course a very tiring day of waiting and "mommy & daddy" adrenaline flowing through our system, we were completely beat and glassy-eyed.
Thankfully we were able to get about 6-7 hours of much needed sleep which made it much easier to focus today. By the end of the day yesterday I felt like I couldn't even ask a coherent question to any of the nurses or doctors. And that's not a good sign because I am always full of questions! The best thing for Quinn is to have 2 normally-functioning parents, that's for sure.
So they did rounds this morning and everything was great for being less than 12 hours post-op. Later they actually said she was kind of "boring" which is exactly what we want to be -- completely and utterly boring the nurses and doctors!
So the big steps today - they were able to remove her from the ventilator - little Q is now breathing completely on her own!!! She is still on a little bit of oxgyen that they continue to step down and she should be off in the next 24. Now we can see that beautiful face! They were also able to remove an LV (I think that's what it was called) line this morning, and remove both of her catheters this evening. She is off all of blood pressure medications that were allowing her heart to kind of rest, so her "new" heart is doing it's job. She was on a continuous sedation and pain med drip but she is off of that now so they could get her off the vent.
She's on a sedation med now that's non-narcotic so she can breathe on her own through it. She also is still receiving pain meds to keep her comfortable and calm. So far, she has been relatively still but whenever she starts to flail, they go ahead and sedate her a little more --- their biggest goal is for her to not be in pain. The hardest part is managing waking her up and her not being in tremendous pain -- it's a tough balance but we have had the most amazing nurses & doctors caring for her. Their expertise and willingness to explain everything that's going on and tolerate all of my endless questions has completely blown me away.
As a suggestion from my fellow heart mommy friend, Lisa, we also brought up pictures of Quinn for the doctors and nurses to see so they could see Quinn in her essence, laughing, smiling, etc. What a great idea! We put together an 8x10 collage of her and Ryan, so they would know also that she is one of a pair - and that her twin brother misses her desperately and wants his playmate back! (Although I do have word that he had an excellent playdate with his friend Grayson - and some great loving by my wonderful friend Libby who took care of him all day during Q's surgery - immensely grateful!)
So bottom line: we can consider this first day post surgery a complete success. She is doing so wonderfully, it's almost unbelievable. Matt and I have been so relaxed today that I know that type of grace only comes from God. They are talking of potential move from the ICU to the 15th floor (room-in wing for cardiac patients) as early as tomorrow afternoon. Whoa! At the latest, our nurse thinks Friday. So we are trucking right along.
As they keep reminding us, we still have a tough few days in front of us --- when she is completely awake she will be uncomfortable and unhappy and certainly not on the schedule that Mommy typically has her on :) But we will get through them and prayerfully, be out as soon as a week from now!
All I can end this with is a simple "thank you". I have no other words. We are beyond blessed.
Thank you, God, for healing our sweet precious daughter and bringing us this far on our journey. Thank you for the amazing team who continues to care for her. Thank you for our wonderful friends and family who have been incredibly generous with their time, loving, and pretty much doing everything we needed.
In His Precious Name,