Update

Ethan is doing great. This is his first time in a bouncy seat! Soooo cute!

Here is a semi-technical explanation of Ethans latest events. . .

He had to get a chest tube on Sunday to drain the fluid that was building up in his chest. This is the second chest tube on that side. Only this time it drained out a milky yellow color. . . The lab tested it and it was 100% positive for lymphocytes. In other words he has a major lymph vessel that is carrying lymph fluid to his heart. Due to the repair/strange anatomy of his heart the lymph vessel cannot drain there and has to find a new route. Until it finds that new route into the heart the lymph backs up and is draining to his space around his right lung (pleural space). This is referred to as a chylous effusion. One of the attempts to minimize this build up is a super expensive formula we have to use for six weeks. . .Yea$$$.

For those of you who knew about my preganancy, Ethan had pleural effussions in utero. The doctors #1 theory is that they were chylous effusions. So this might be something that comes and goes for awhile. We are grateful all his little setbacks are just that, setbacks. His heart is doing wonderful. . . He just needs to get past all these little hiccups and then we can bring him home (until the next Surgery anyway).

Too Good to be True

Ethan is doing great still. . . BUT the fluid has built up a little in his right lung pleural space (sound familiar) and he started working harder at breathing in the middle of the night. So this morning they put some CPAP assistance on his trachea. At least we got to hold him last night and we can still see all of his cute face. I don't even consider this a setback. Yesterday was too good to be true. The little guy was tuckered out from too much progress! He has been resting peacefully today recovering from his night of hard work. . .

Much love-Mom

PS: That is just a humidifier to keep his trache and lungs from drying out. Kind of huge and obnoxious don't ya think. . .

A Terrible Loss

My dear friend Brooke, that I have become aquainted with on the heart unit, said goodbye to her sweet Andie Grace today. She lost her battle with pulmonary hypertension and coarction of the aorta. Please pray for Brooke and her family as they cope with this loss.
Thank you-
Heidi

HUGE Progress

Ethan had a wonderful day today! I was praying for baby steps and we had HUGE leaps. His fever resolved last night, he came completely off the ventilator early today, and is now the happiest and most content baby. He is tolerating milk through his G-tube, loves sucking his pacifier, and is interacting with us so well. We now have the okay to hold him whenever we want. He has a few IV lines still so we can't walk all around just yet, but we can pick him up and hold!!! (I need to be knocking on wood as I am typing all this.)
As you can guess I am so grateful. It finally feels like having a "normal" baby. I don't mean that in a negative way, but in the sense that I can care for him and love on him as I please. I know he is still fragile and has a long ways to go, but I cannot tell you how full my heart is tonight. The last few weeks of struggling have all been WORTH IT! Lets just continue to pray things go in the right direction.
Much love and thanks-
Heidi

Update and B-days

Alexa is 8 years old today! I can't believe it. She is such a tender child. And thankfully she is the opposite of her mother. She is patient and sensitive, musically inclined and talented, and loves to read. She definately is more daddy than mommy. And I love it. She has all the qualities I wish I had. Happy birthday girl!

Ethan's surgery went well. He is so much happier and more comfortable. The best part is seeing his beautiful face. He is so alert and looking around. Unfortunately he has a fever today. They are trying to figure if it is infection or just a post surgery reaction. He also has some fluid around his right lung again. . . Round and round we go! Hopefully it will go away and not get bigger. They will be running some more tests this evening.

All the nurses come in to see him and tell me what a cutie he is. I know I am not a partial judge, but I think I have to agree with them!

All is Well

The surgery went well. Will update more tomorrow.

Procedure Time

Our little Ethan is heading to the Op room today at 5:30 for two quick procedures. He is getting a tracheostomy to help him breath better until the movement comes back in his vocal chords (they are paralyzed in the semi-closed position and it may take months for full movement to recover). He is also getting a G-tube. I will be feeding him directly into his belly. You cannot bottle feed a baby with paralyzed vocal chords. If he were to get milk down the "wrong pipe" then he would not be able to close his chords to protect the milk from getting into his lungs. And lung infection is not what a little heart baby needs!
As you can guess it has been hard to accept these setbacks, but the docs are expecting a full recovery from these side effects. And we will continue to pray for that. These procedures will allow us to take Ethan home in between surgeries. Otherwise we would be stuck here on breathing machines until his chords recover. And as mentioned, that could be a few months. Although I am terrified at the thought of balancing Ethan's care and three other children, it will be so much better to be home as a family! And the Lord has blessed us with an amazing support system!
Much Love-
Greg and Heidi