We NEED your prayer

Well posting has been a little difficult over the last few days.

Lets start with Madaline... She is continuing to be our little rock star. She is breathing on her own, tolerating her feeds as they increase and doing rather well. She also had her first eye exam that was far from comfortable for her. In the end the doctor said that she is on track for her age and he does not see any significant problems to be concerned about. He will continue to do exams until she leaves to make sure her eyes are developing properly. She is definitely going to be our "Heart Stopper". She is so darn cute, its hard not smile when you look at her.

Onto Ethan... The past few days have been more than a challenge on so many levels to say the least. On Wednesday morning Ethan had what the nurses thought might have been a seizure. They had a Neurologist come in and do an exam. They put him on anti-seizure meds just in case while they planned a couple tests; one being an EEG that will show his brain activity as well as possibly seeing at what stage his brain is developed. They also re-intubated him to help him breathe a little easier. They were concerned that his muscles are so tense. At this point they also felt it necessary to bring on a Genetics specialist to see if he has any abnormalities that could be detected at this stage of the game. The day had ended a little optimistic when one of the doctors that did his evening evaluation said she was not entirely convinced that he had a seizure.
Thursday came and the Genetics specialist came in and did a consult on him. She told us that at this point she did not see anything that would indicate the initial diseases she thought may be causing a lot of the issues he is having. She said that she would do a follow-up exam in due time. She also ordered a chromosomes test to be done that will take about a week to get the results back on. She did notice that his muscles were very tight as well.
Then the Neonatologist came in to see us and said that he was not entirely convince that Ethan had seizure on Wednesday as well. However, he did find out that he has another infection that could be causing the issues he is having. They are going to keep him on the anti-seizure meds just in case as well as putting him on a couple antibiotics. He also moved him from the conventional breathing machine, to the highest machine (called an Oscillator) since he was not responding well to the other. I am thinking at this point that while moving him to the other machine is not good, his infections could be the reason for all of this and at least we have an answer. The problem came when Ethan had to go really high on the settings for the Oscillator and the oxygen level was being increased throughout the night. At this point, he has had his EEG done and we are still waiting on the results. Again, this will tell us if he is having seizure activity in his brain.
Friday, I called in the morning to check on him and they said that his ventilation settings were pretty high (up to 80% oxygen) and he was extremely sensitive to any kind of touch. When I got into the hospital I was greeted by an infection control doctor. He said that Ethan definitely has an infection and they are doing some tests to figure out where it is coming from. He may be Septic, he may have pneumonia, it may be fungal. Also his platelet levels were down. His are at 114,000 and it should be around 150,000 which is an indication of an infection. The are going to keep him on the antibiotics and wait to see what the test results come back and say. Hopefully they can pin point were it is. In the meantime, they will treat it on a general level and try to cover as many basis as possible. After he left, I went to see my little man and the nurse said that the EEG results were back and she paged the Neurologist and the Neonatologist to come and talk to Brady and I. We went in the meeting room where the Neurologist proceeded to tell us that the EEG came back and Ethan is having abnormal brain activity. He is not quite sure if it is seizures or not, but they can't do the other test (MRI) that would help determine that because of the heart surgery he had a few weeks ago. Since the MRI is a magnet and there is a metal clasp around his heart they can't do it for at least another 3 weeks. They also can not do a CT scan on him because the machine is at St. Joseph's hospital and he is to unstable at this point to bring him over there. The Neurologist then tells us that the prognosis is not good. Most babies his size with these type of issues either don't make it, or have severe mental disabilities....


So basically, they are saying that there is a strong possibility that our son may pass away. And if that's not the case, he is going to have a very steep, uphill battle that could very well include sever disabilities. The doctor said that at this stage in the game, he is considered to be in very critical condition.
What do you say to that? Nothing, you just cry, and that's what we did. Brady made a good point to remind me that whatever God has given us is what is planned for us. I want God's plan to keep me with my son.
The rest of the afternoon, we sat with Ethan just touching him so he knew that we were there with him. He seemed to have stabilized (not gone up or down) during this time. My mom, Jeff and Alix came down to the hospital to offer support and love. and for that, we thank them so much. We also called St. John's and asked that they have a pastor come over and have both Ethan and Madaline baptized. Most of the pastors had gone on a weekend retreat. But we had the honor of having Pastor Hayes from St. John's come in and pray with us and Baptize both of the babies. Both Brady and I were able to take part in putting the holy water on our babies head for the process.

I feel like we are in a nightmare and hopefully I will wake up tomorrow and see that my sweet boy is doing better. We've gone home for the night to try and get some rest and will return to the hospital tomorrow.

In the meantime, I ask that you PLEASE pray for our Little Superman and that you ask your friends and family to do the same. He has been so brave and strong so far. We just want to ask God that he continues to give Ethan the courage and strength to keep fighting whatever is trying to bring him down. We know that every prayer counts and gives him that much more strength.

I will try to make another post with updates as soon as I have the strength, or time.

With love and appreciation,
Jamie & Brady