Suck, Swallow, & BREATHE

Hello all.... There is lots to share (including pictures!). So sit back relax and grab a cup of coffee.

We will start with Madaline first. She is doing well. They took her off the oxygen after a day or so and she is doing okay. Her heart rate continues to be on the higher side still. They think it may be because she is anemic. They don't want to give her a blood transfusion just yet though because her body is starting to produce red blood cells. If they gave her a transfusion, it would send a message to her body not to produce the red blood cells which would make it harder in the future for her, so they are trying to hold off as long as possible before they do another one. It may happen in the next couple days though. Madaline's feeds continue to increase daily. she s getting about 24cc's every 3 hours. What they are starting to do now is add vitamins and extra calories to them so that she can gain weigh. This is normal about this time. She is not liking the extra vitamins that they are putting in though. She spit up on me yesterday (which required my first wardrobe change due to baby-spit-up) She also has been a little more gassy (which she gets from her father).
Today we tried to breast feed. It wasn't very successful because the therapist and I got into her room a little late since we were handling some stuff with Ethan. she fell asleep right when we started, But there is always tomorrow. In fact, we might try the bottle tomorrow since she will have to learn both. When they are trying to teach babies to eat there are 3 components that are necessary for the action of eating. Suck, swallow and breathing. All 3 of these things must be established before she can learn to eat. We take it for granted, but its something we have to do as well.
She also had her PICC line (long term IV) removed today. Hopefully she will not need it for the rest of her stay at the hospital. They try to remove it as soon as possible to reduce the risk of infection.

Ethan is showing some signs of improvement from last Friday. They doctor decided move put him on a convention breathing machine today. This is one step down from the other machine. Hopefully he will respond well to it and continue to improve his respiratory state. When they were moving him to the other machine, he has his eyes wide open. We got to lock eyes for a few minutes while they had is incubator open. It was nice to see him close up instead of through the clear incubator.
I had a meeting with one of the doctors a couple days ago and he is not sure what happened last week that would have triggered his downward spiral. However, the tests that were done for infection came back and were mostly negative. Because of that, he was taken off of a majority of his meds and kept on just 1. Since they did that, they were able to start up his feeds again. He is only getting 1.1cc of milk every 3 hours, but like I have said, some is better than none. His lungs are also showing to have improved and aren't looking as "wet" as a few days ago. In talking with the doctor I asked if he thought it might be pneumonia. He said that they aren't sure since they symptoms for that present themselves like some other issue that he could be having. However, they are treating him as if that is what he had. (Maybe I am a doctor!)
We have also been trying to get him back on track with his physical therapy. the last few days he has been very touchy, but today he tolerated it pretty well. He is still retaining a lot of fluid though, and hopefully the therapy will help with that.
Onto the big stuff...
Ethan is still having some form of seizure like activity. It has been happening every other day of so, but they are giving him medication that help control them.
Brady and I met with the doctor today to talk about what the next couple steps for Ethan will be. He is glad to see that there is improvement from last week, but reminded us that by no means is he out of the woods yet. Pending that Ethan remains stable and/or shows signs of improvement, they are going to do another EEG called a "Video EEG". It tests his brain waves over a 24 hour period of time versus a 20 minute period which they had done before. This is the test that they did that they told us that he has very abnormal brain activity. Also, they will plan to do an MRI of his spine and head by the end of the month. It will be hard to wait that long, but that's all part of the roller coaster ride. On top of that they want us to keep in mind that because he is not showing signs of major improvement in his legs, there is going to be a chance that he has cerebral palsy. At what level is still unknown as this is all speculation. For now, they just want us to keep that in mind. So again, there could be developmental problems as well as physical ones. But everything is up in the air still. they also did a chromosome test last week that we are still waiting to hear the results on.
Through all of this, I still look at him and think he is just perfect. He has the sweetest eyes and cutest nose. He even has a little pouting lip when he isn't happy. I'm so in love!

Picture time!
We are going to try things a little different this time.

From right to left:
Ethan's Diaper, Madaline's First Diaper, and a Newborn Diaper
From right to left:
Ethan's first Pacifier (which he has on;y used once so far), Madaline's First Pacifier, and a regular size Pacifier
This is there feeding amounts (a couple days ago). Ethan's is on top and Madaline is on the bottom. They are fed every 3 hours.

This is a picture I got of Ethan today.
Ethan's feet
This is Madaline showing us her "Model Lips"
Madaline and I doing Kangaroo Care