Post note: There is a song that has been going through my head all morning. It is written by Cherie Call (one of my favorite artists!) and is called 'Already a Butterfly'. It reminds me so much of Abby. And then listening to 'Walk You Through the Night' so amazingly reflects my feelings as a mother to my daughters. (okay so basically the whole album is so very inspiring!) (you can listen to excerpts here: http://positivemusicanddownloads.com/store/348/348/cherie-call/grace/) I keep listening over and over again and am simply relishing in this mornings moments of dressing up, getting ready for the ball, hugging away hurt feelings, and dancing around while we clean. Also listening as I type this has helped to calm my soul - as music always does.
In response to my own post yesterday, I maybe should've waited to post until full clarity came to mind, but thought it more important to let family and friends even know there was an appointment due to James and I moving it up from her normal annual appointment which would've come in November. (please don't be offended if you 'didn't know', no one did, even us - and it wasn't an emergency that warranted a 'phone tree' etc - simply an appt. moved to a sooner date) And because I am still having trouble 'finding' the peace and clarity that usually surrounds me with these kinds of situations... better to at least let you know, right? James does have peace, and I am probably worrying too much and lacking a bit in faith - I'll get there... really soon. I can feel it.
Our nervousness was that we wouldn't find anything. For two years, we have been concerned... but didn't want to push the doctors into doing anything 'drastic' prematurely. Many times, where the heart is concerned, patience and waiting for the 'right time' is key. What we have been seeing at appointments is 'normal' and even 'great', but a at home and in 'life' she has been such a roller coaster with her oxygen levels and her heart rate. Because of the type of surgery she had - she should maintain oxygen levels in the 90's - which would be great for her! But the last two years have ... been rough and amazing at the same time. Lets just say lows in the 60's and highs in the 80's = pure craziness.
We do exercise our faith in miracles! Abby really is a living miracle. Because of her 'miracles' she has only had to experience one heart surgery thus far in her life instead of four or five (which is the usual route for her particular diagnosis). It is amazing and inspiring to watch her grow. We have faith in an all knowing God AND in the knowledge that He has gifted to modern science. With both, Abby will continue to live a long and full life. What a blessing!
That being said, Abby's 'heart' looks really good. However, there are still some major concerns that probably need to be corrected, some we've always known are a possibility (a pacemaker, small surgeries, or even open heart again) and some were just discovered yesterday. The whole situation is 'strange' in that her overall appointment went really well and she looks great. The only thing found that was out of the ordinary is that the hepatic veins (blood flow from the liver to the heart) are exceptionally large. It will now be necessary to perform a cardiac catheterization (cardio cath) to determine the exact causes of her problems. While this is not a "risk free" procedure, it should be quite simple and not even require an overnight stay.
This will take place in about a month (because we want to wait until after her birthday, we've already waited two years, no emergency here). Then, we will go from there. We have excellent doctors and have every confidence in their abilities.
We ask that you pray for James and I to have increased faith and the ability to discern what will be best for Abby, for her doctors to be inspired with the best solutions and to 'find' all that needs to be found, and most especially for Abby - that she may enjoy her life and be happy, sad, healthy, still full of drama, dressing up, playing games, continue to love kindergarten and primary, fight with her sister, and share hugs, love, and kisses with her best friend sister, be strong enough to continue to ride her bike and explore her world - and love and appreciate all of the moments for the treasure that they are.