After a peaceful day yesterday, Madison's rough night began around 9:00. Don't get too worried.. her heart is doing just fine - it is beating perfectly and we love it! Her rough night was simply a result of having surgery and dealing symptoms from her old heart. (I'll explain symptoms of her old heart in a sec..)
For anyone who has had any type of surgery before, does gas bubbles make you instantly hurt again? They are horrible! I have had them before and they hurt so bad! Now my heart aches for her little belly. Surgeries just aren't any fun! Maddie's gas bubbles began as a result of her major pain medications wearing off and her organs waking up and working again. (this is normal, just not fun to go through..) She didn't sleep much last night as she tossed and turned and screamed as bubbles developed and passed through. So, what does a mom do for her baby during all of this? Not much.. I can't even hold her yet because her chest tubes and her atrial lines are still in. I just hold her little hands and head and tell her, I'm so sorry.
Other symptoms we are dealing with (from her old heart): It has been explained to Mark and I many, many times from many different docs that her little body was starving on the inside. (Starving meaning lack of oxgyen and lack of nutrients due to her heart not pumping well..) Her organs were protecting the most important organ (her heart) by restricting blood flow to the less important organs and extremities. Yet, while her little body was going through all of this on the inside, she showed very few symptoms on the outside. Heart Failure is extremely deceiving!
Anyway.. because her organs were in such distress, now we are dealing with them reacting and responding because they are actually getting the proper amount of blood flow. It's kind of like wearing a rubber band around your arm for a long time cuting off circulation; releasing that rubber band is a good thing, but everything hurts and reacts to finally being able to work properly. This mess is most likely causing some of her stomach pains as well. (Darn it!) So... to help her organs get a large amount of blood volume (oxygen and nutrients) fast, they have hooked her new heart to an external pacemaker. This will allow them to increase her heart rate, so it will pump that extra - needed volume to her organs.
Issue #?: Another issue that everyone around here is stirring about .. Maddie's old heart was 4x the size it should have been. (stay tuned for the post about her old heart.. I even have pictures..) Because her old heart was so big and her new heart is so small (normal size), there is a large empty space around her new heart. We want her body to recognize empty space; her organs and lungs need to spread out and enjoy life without have to be so squished. We are waiting patiently for that to happen. Meanwhile fluid is building up in that extra space. (Dang it!) This is not good. The heart doesn't pump well in water. If fluid continues to build up, Dr. AK will need to put a tube in to drain the fluid. This procedure is done in the OR. I don't want to worry anyone. There isn't a lot of fluid right now.. just something they are going to watch very closely.
Good news: Maddie does need a Picc Line, but she doesn't have heart issues anymore. This means she can be fully sedated and I'm a happy mom. (yeah for a good, healthy heart)
I'll update again later this afteroon. I'll also post about her old heart (with pictures..)
Again, thank you for your love, prayers, and support.
4 weeks ago