Our First Days in Step Down

Here we are in our cozy step-down room! We got here yesterday around 1pm. Emma Kate is doing great! She is eating ok with the Portagen, considering how gross it smells (and tastes, I'm sure). I think she's just glad to have food in her belly. Dr. Kirshbom said he was going to leave her alone for a few days and monitor her chest tube output. The word is that she will have it in through tomorrow, maybe Monday.

Emma Kate just had an x-ray, which is part of her daily routine. When she has her x-ray, we lay her down on a little table and hold her arms up by her ears. Of course, she cries when we do this. But today I noticed this bulging part of her abdomen, right underneath where her chest tube comes out. The nurse practitioner looked at it when we got back to the room and said she wasn't concerned. It was probably just a muscle that comes out when she cries. They did a lot of moving things around during the surgery, so it is just some part of her body that has to heal. Friends, please pray that this is nothing major. Of course, I am worried, like any mom would be. It is a scary thing to see this part of her body bulge when she is crying. It isn't hard and it only pokes out when she is crying. The doctors don't seem concerned, so I will try not to be.

Everything else is looking good, so far. She was taken off any supplemental oxygen this morning and her sats are where they should be. Other than that, it is just a waiting game. I don't know how long we will be here. I hope we're gone early next week, if all goes well. Again, thank you so, so much for your prayers!

Post Op Day 2

Yesterday was a good day!

Around 10:30am Emma Kate was extubated. Typically after extubation you have to wait 4 hours to feed, but one of the sweet nurses came over to visit Emma Kate and saw how thirsty she was. So she talked with a doctor and they let her have a little Pedialyte only 2 hours after extuabtion. Let me tell you she wolfed down that Pedialyte in about 2 minutes! She was so thirsty! She had a total of about 3 or 4 ounces of Pedialyte over a 2 hour period.

Dr. Kirshbom came by to check on Emma Kate a little bit later and noticed that she looked really comfortable. He decided that she should go back on Portagen and said that if she does well taking it, we might be able to feed her Similac in a few days!!! How exciting! She did great with the Portagen yesterday and didn't even reflux once! We are so proud of her.

So far, Emma Kate's drainage has been minimal; maybe 75ml or so since the surgery was completed. It is not chylous so far; it is very clear! Just PRAY that it remains that way. Things are looking good right now. We don't have orders yet, but our nurse today said she will be one of the first to go to the floor today (which means we will leave ICU).

Thank you for all of your prayers. We are on our way up to see Emma Katie now.

Post Op Day 1

It is pretty early; As tired as I was last night, I am surprised that I'm awake. I guess I am ready to go see my baby.

Emma Kate had a good day yesterday. And by good, I mean that after surgery it was pretty uneventful. She was in pain for the latter part of the day after her nerve block started to wear off. I know I sort of touched on this before, but this surgery is supposed to be pretty painful to recover from. Apparently the anytime you have a thoracotomy (an incision in the chest to gain access to thoracic organs) it is painful. Her incision starts right around the bottom of her right shoulder blade, running horizontally under her right arm. Its not a very big incision, but because there are so many nerve endings and muscle tissues in that area, its quite painful to recover from. As any mother feels about her child, I hate that Emma Kate will have to endure any pain whatsoever.

Anesthesia gave her a nerve block during the procedure to help prevent any pain for 6-12 hours after surgery. We could definitely tell a change in her demeanor when it wore off. She got Morphine and Versed several times yesterday. She has been intubated (had a breathing tube) all day yesterday. Our nurse told us that this would help with pain, since breathing might be more difficult because of the placement of the incision and the pain in that area. They did a few trials last night, slowly weaning her off the breathing tube. She did fine, but she had several doses of morphine in order to help her deal with increased pain. The prediction is that she will be extubated this morning.

She has never had any problems in the past being weaned off the breathing tube, so I feel she will do fine. The tube goes down your throat and into the lungs, passing your voice box on the way. (Not the medical definition of being intubated, but you get the idea). She normally has a really "scratchy" voice for several days after being exubated. After her first surgery, she made no sounds at all, even when she was visibly crying. It was so pitiful.

When her nerve block and pain meds started wearing off yesterday, it was hard to see her. She is basically immobile, because of her breathing tube and because her arms are basically tied to the bed. Babies at this age always are, because if something is in your mouth that you don't want to be there, your first reaction is to reach up and grab it and take it out. The restraints don't hurt her, but I can imagine feeling pretty helpless when I can't move my arms the way I want to.

This was taken post-op Glenn, but this is very similar to how she looked yesterday.

The plan today is to see if she can be extubated and see how she does. Then she will probably start being fed! (First time in 11 days!! Yay!) And then we'll see about her drainage. She has her chest tube in still and it has only drained about 35ml as of last night, which is good. It is all blood at this point, just PRAY that after all the excess blood drains out that her chest drainage is minimal. This will tell us whether the surgery worked or not. Only time will tell.

Surgery is Tomorrow Morning

Here we are again, at Egleston. As I type, Emma Kate is fast asleep in her crib, even though she is currently having an echocardiogram done. She has had it rough this morning. At least three different phlebotomists have come in to stick her multiple times in order to squeeze any drop of blood from her little body. She is a human pincushion. Poor baby. It is so hard to see her go through all of this again. She is poked every day, but of course, she still wears a smile.

I am glad she's sleeping so much because tomorrow she will have surgery. Dr. Kirshbom's surgical coordinator came to speak to us this morning. She will be the first surgical case tomorrow. He will attempt a thoracic duct ligation. This means he will tie off the thoracic duct, which is the largest lymphatic vessel in the body. From my understanding, it kind of runs along the length of the spine, but don't quote me on that. This surgery is the next step in trying to solve this stubborn chylothorax problem. In 80-90% of cases, the problem would have been fixed by now, through one of all the different medical therapies that she's been through. This surgery is not a 100% guarantee, so we will definitely be praying about that. God is in control!

Dr Kirshbom just came in and said that this is the second baby he will perform this sort of surgery on. I trust him wholeheartedly. But I trust God more, and I know He will take care of my baby. We are ready for Emma Kate to heal; ready to take her home and love on her and let her play with her big sister. We are ready to let her experience life as a baby for truly the first time. We are ready to have her meet all the family she has not had a chance to meet yet. We are ready for home. Please keep Emma Kate in your prayers today and tomorrow, and we'll keep you posted.