Lilia Sweetheart: An Update

Yesterday, the 22nd, was Lilia's big cardio appointment.  I am sorry to say it didn't go quite as well as I was hoping.  But it could always be worse too, so we'll take what we get and count our blessings!  Anyways, so the hole in her heart, VSD, has not improved.  The situation has actually gotten worse as the volume of blood passing through the hole has increased, but the pressure has decreased.  This means that the hole is not closing up on it's own and is also making the right side of her heart (the side that is quite larger than it should be due to the Ebstein's) work much harder than it already was.  Furthermore, her ribs are slightly pulling in when she breathes which means her lungs are working hard to keep up too.  Not good things.  This explains why the sweet darling sweats like crazy when she drinks and falls asleep.  Her body is working hard to keep up with things. 

So what does this mean?  It means that we are going to try her on a diuretic for the next month and pray that this will relieve some of the burden of her heart and lungs so that, hopefully, her heart can work on repairing that hole.  At our visit in April, her heart was about .5" larger than it should have been, and at this visit her liver was a bit enlarged as well, and hopefully the diuretic will relieve the extra load those organs have had. So no surgery for sure just yet, but if nothing improves, then surgery is a go.  The Dr. intimated that if there is some improvement, we might be able to keep her on the diuretic for another month and see if her heart continues to improve and repair itself. 

In a month we are returning to PCM and this time they are going to do a sedated (shudder, breathe... ok) 3D echo.  Even though I really don't want her to have a sedated echo, mostly because I don't really feel prepared to watch my baby girl hooked up to an IV (again!) and lay there lifeless before me, I am grateful that they are doing it at her next appointment rather than waiting to see what the regular echo shows.  The 3D echo will enable them to get a more complete view of her heart so they can have as much information possible to make a decision about surgery.  At first the Dr. was going to wait to see the echo next time and then maybe schedule a 3D echo, but thankfully he decided to just go ahead and do it so we aren't prolonging the process any more than we have to.  After all, if things don't improve, we want to give her tiny little body some help and relief as soon as possible.  Even if her heart doesn't repair the hole, I'm hoping that the diuretic will at least give her heart and lungs some rest, and Lilia some relief too. 

I was able to ask the Dr. some more in depth questions about he surgery if it goes forward.  It will be full open heart surgery.  She will be placed on a heart and lung bypass machine.  Scary stuff to think about.  "Overwhelmed" doesn't even begin to describe it.  I had a myriad of emotions yesterday as I reflected on the situation and all the information the Dr. and I discussed.  Even though I'm scared, emotional, and a little bit down about her not getting better, I do feel that things will be okay.  I do know that God is in charge and is keeping watch over Lilia.  I do know that He will continue to bless our baby girl.  And who knows? Perhaps surgery is the real blessing.  It could be possible that surgery is what she really needs.  My prayer is that Lilia will get the care she needs, whatever that care may be.

So in the midst of all the heavy, here was the good about her appointment yesterday.  She was great for all of her tests.  The nurse said she was the best 9 month old she had ever seen for the O2 sets and EKG.  She was wonderful for her echo as well.  I had to sing to her a few times to keep her from getting too anxious, but as soon as I began to sing she was still and cooperative.  She was so good that the tech gave her the soft fleece blanket he laid out for her during the procedure.  So sweet.  Also, she was absolutely hilarious as we waited to see if the tech was able to get all the images necessary.  She was playing with the backs of the EKG stickers, and cracking me up!  She thought they were the neatest things ever.  I'd never seen her so enthusiastic and playful before.  Such a sweet relief for me with my own heavy heart and anxious spirit.  She was almost asleep on my shoulder when we finally got to see the Cardiologist, and this was good because he was able to observe her in a relaxed state and was able to clearly examine his points of interest without fuss from her.  It was nicer for all of us :)  Also, the Dr. was very happy with her chubby cheeks and legs!  Lilia has been eating very well, and outwardly she is looking just as a baby should.  She is small for her age, but has a good amount of fat now and that's what we want. She is such a blessing in every way.  I love her so much!

So the wait is still on, but we'll continue to hope an pray that no matter the outcome, Lilia will get the care she needs and will be healthy and happy. 

Many sincere thanks to all who have kept our family, and most especially Lilia, in their prayers.  We feel the love and comfort from these prayers and know they do not go unanswered.  "(Our) cup runneth over."  Thank you.