I am finally home long enough to update everyone on Emma Kate's progress. I couldn't fnd computer access at the hospital and needless to say, I've been pretty busy otherwise! It has been an exhausting week. Mostly for my sweet girl, but it has taken a toll on all four of us. I guess I will start at the beginning and catch you up...
I guess it all started on Monday night. I kept telling Brooks that I felt like Emma Kate's breathing was off. She was grunting with every breath and there was a bit of retraction in her ribs when she breathed in. I tried to not let myself get to worried by it, because we had an appointment with Dr. Law (cardiologist) on Wednesday, and I was sure that she would be fine until then. However, Tuesday morning,
EK's breathing seemed worse. She was really laboring to breathe. It was so scary! I called the office and Dr. Law wanted to see us immediately! I packed up the girls and we headed up to
UAB hospital. She had an
xray done and an echo. Sure enough, Dr. Law could see that
EK had fluid on her lungs. He assumed that it was a
chylous effusion (meaning that an accumulation of
chyle fluid was around her lung). There was enough fluid that she was essentially only using one lung to breathe! Fluid in the chest cavity is just taking up space and keeping the lung from expanding.
EK was admitted to the hospital and Tuesday night had a procedure done where a small chest tube was put into her right side to drain the fluid. It didn't take very long, and she seemed pretty happy other than the fact that she was starving! Here is a picture of EK in the NICU right after the procedure.
They ended up initially draining about 210cc's of fluid (about 7 ounces)! The plan was to keep her on the Portagen formula, and see if the fluid tapered off.
Let me back up a little bit. And here we go with a science lesson:
If you remember, Emma Kate ended up with chylothorax while she was recovering from surgery in Atlanta. Chylothorax results from lymphatic fluid accumulating in the pleural (lung) cavity. This happened as a result of some of EK's lymph nodes being damaged during her Glenn operation. It doesn't happen to everyone who has heart surgery, but it is not an uncommon complication. After her surgery, chest tubes were placed in her thoracic cavity in order to drain fluid from around her lungs and heart. Usually, this fluid just tapers off and the chest tubes eventually come out. However, in her situation, chyle started to drain into the chest tubes. It is a milky-white fluid. In order for the chyle to stop draining, the lymph node(s) that were damaged have to heal or seal off. For that to happen, there can't be much fat in the diet. This is relatively easy to manipulate with babies, who just drink formula or breast milk. All you have to do is change the formula for awhile. So she was put on Portagen. This didn't work.
Wednesday night Emma Kate was put on an IV med called octreotide, which basically just dries stuff up. But it is either hit or miss. And with EK, it was a miss. Her drainage didn't get much better. And her IV fell out (it was in her hand) after about 24 hours of her getting the med, and it should have worked by then.
The next step is to insert a PICC line (peripherally inserted central catheter) and stop all her food intake for one week (yes, we will be there at least 1 more week), giving her only IV nutrition, or TPN. A PICC line is a long IV that starts either in the arm or some other vein and goes into a central "line" or artery and then into the heart. In Emma Kate's case, they could only find access to a vein in her neck! AHH! The PICC line will allow her to recieve all her nutrients via IV. The idea is that not feeding the stomach for a while will dry up the lymphs and in turn, the chyle will stop and her lymphatic system will have time to heal.
I was sick about her having the PICC put in. I had to leave the room when they were insterting it and I just cried my eyes out for like an hour! It was very difficult to hear my baby screaming (although they assured me she was not in pain!)
As of last night when I left the hospital, they still had not started TPN. My poor baby was so, so hungry! I called Brooks last night before I went to bed and he said they will not start TPN until the morning. He was able to give her some Pedialyte, though, which hopefully took the edge off her hunger. Brooks said she was so excited when she saw the bottle! That just broke my heart! It is so hard to not feed your child when they are hungry. They don't understand! I am so, so sick about this more than anything else almost!
Friends, thank you for all your prayers for Emma Kate! Again, I will ask you to pray. Pray that TPN works. Pray that she does not feel hunger! Pray that she will not be in any pain and that her little lymphatic system will heal.
Emma Kate is such a little inspiration to me. She is happy in any and every situation! She smiles at strangers that stick her with needles and wake her up in the middle of the night to get vital signs. She is so very precious and she is teaching me so much! I never thought I could love so much! My heart breaks for her every time something happens to her that makes her cry. As her mommy, I just want to take all the pain away. I just want her to be healthy! That is my only request. She is already the happiest baby!
By the way, Happy Valentine's Day and CHD Awareness Day! Wear your red for Emma Kate!
I believe in the power of prayer, so I am going to ask all of our friends to please pray right now for Emma Kate! Her PICC line came out about an hour ago. (You can kind of see where it was: on her shoulder there is a blue IV. The PICC was inserted in her neck behind her ear). They cannot reinsert a PICC for a day or two, so a nurse from CI is coming down to see if she can insert a peripheral line (regular IV) so she can continue to get nutrition. If she cannot get a line, Emma Kate will have a strictly Pedialyte diet until Tuesday, most likely. 
