The roller coaster ride continues, but now we are really on our way up. Let's hope it's a really high roller coaster so the up lasts a while.
You all know of the issues with her breathing tube and trying to get her off of it. Well, after our horrible day on Thursday she made a complete about face. They figured out what caused her to code and now that they are dealing with that issue, she is doing so well. They extabated her yesterday (Friday) mid-morning and she has handled it so well. She does have those little prongs in her nose giving her a tiny bit of supplemental oxygen, but that is no big deal as far as mommy is concerned. She loves to play with her tongue again and we are working on getting her to suck her binky that she loved so much before surgery.
Here is what they discovered after her horrible "episode" on Thursday. First, they found out that her thyroid is low. This could be because she just had surgery and the thyroid tends to be low after surgery or it could be due to her Down Syndrome since low thyroid is common for these kids. Either way, she is on a little medicine for it and we should know in a few weeks if the surgery or Down syndrome caused it.
Also, they found out that she developed something called chylothorax from her surgery. Here is a great site that explains it in depth: http://intermountainhealthcare.org/xp/public/documents/pcmc/chylothorax.pdf
In a nutshell, we have a number of lymphatic vessels surrounding our heart, which are responsible for processing and distributing fats throughout the body. Sometimes, during heart surgery these vessels are damaged and this happened to Eden. This means that her little body can not process the fats from the breast milk she was getting. Therefore, these fats were accumulating as fluid around her lungs and this caused her difficulty breathing and ultimately caused her heart issue. This is why they put new chest tubes in to drain this fat/fluid. The sad news is that she can't have my milk right now and she is on a special formula called Vivonnex. The great news is that this is not permanent and her lymphatic vessels will heal themselves in 8-9 weeks and she can then start drinking my milk again.
We just left from seeing her today (Saturday) and she looked the best she has since before the surgery. She is absolutely beautiful, if I do say so myself. She was so awake and alert this afternoon and loved looking at me and Marcus. We gave her a good share of kisses and she seemed to eat them up. It was so good for my heart to see her look like my little Eden again and to actually be awake and alert. She is breathing wonderfully and seems to feel great now that all of her issues are worked out. The funny thing is that she looks so tiny now and she weighs almost a pound more than at birth. It must be because she was so swollen for so long.
It was such a fabulous day for us all. I am so grateful for the power of prayer and for the faith and love of all of you. Please know that we feel your prayers and we know that angels are watching over our little girl and she has been blessed.
I will post pictures in the morning!
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