A Curvy Road

Mackynlee is taking us down a curvy road right now. We do not know how long it will be before she decides to head down a straight road to recovery or how long she will continue to be on the curvy road. Her seizure activity still seems to be under control. The two concerns now are her heart (plueral effusion) and feeding issues. Today she went for an echo. This showed no sign of a pericardial effusion. This is good news, but there is still a small pleural effusion that doctors must watch. If this gets larger, there is a possibility doctors will have to draw some fluid from the effusion and check to see if she has chylothorax. This is issues with her body breaking down fat content. But, there has been another mistake. Yes, you heard me correctly, another mistake!! This time with the way she was being fed through the tube. Last night she was given 77ml's an hour continuously through the ng tube. This shouldn't have happened. She was volmitting by 1:30am due to an overload. This volume added up to being over 2 ounces an hour, over 8 ounces for 4hours. Twice as much as she is suppose to get. She is only suppose to get 40ml's an hour. Did I tell you that I feel like a nurse myself these days? I now know how to calculate the formula as to how much she will get through continouos feeds tonight. So it will be done correctly!! This could be the only problem. I pray that it is. If so the effusion should clear up and if our eating issues subside, we may get to go home soon. My guess is no sooner than Monday, but that is better than what I have had in my mind. I've been thinking it will be weeks before we even could think of going home. Pray that the feedings go well tonight and the effusion is minimized by the xray in the morning.

Okay, now I have to make confessions to my heart mom friends:

Confession#1) I think I have always down played feeding issues. I now know how difficult this situation can be. Even with a feeding tube, there can be problems. Mackynlee can not have too much fluid, but can not go with too little either. There's no exact formula, so for every baby it is different. This is just figured out by trial and error. It is very frustration and can cause many set backs!!

Confession#2) As I have read about different ones of you with heart babies close to a hospital, and as I have met different ones at CHOP with heart babies that didn't leave but a few hours away from the hospital, I always thought you had it a little easier in that aspect as I did not being able to get in my car and drive a couple of hours to get home and be with my other children. Well, I have realized since I am just two hours away from my home that it is not as easy as I thought. I am planning to go home tomorrow, but I am so not at peace about this. Meemaw is going to be with the baby. I know she will take good care of her. I trust her so much and she knows Mackynlee almost as well as me. But there is just so many feelings and thoughts about leaving her here. Like I said, much more difficult than I ever imagined.

Confession#3) This is also about living close to the hospital. My 3 year old got to spend the day and night with me yesterday. This was good, but also tiring. Visiting with your babies in the hospital setting is so not fulfilling, but I guess it is best to get to see them, than being at CHOP where I cannot see them at all.

Many of you have told me that you have no idea how I keep my carepage up so well. It is definitely easier to do so at CHOP than here in MS. I think it is because I had myself on a schedule there. I never had any visitors, so there was plenty of time to journal. Even though I enjoy keeping my carepage up, it is more difficult for me right now. Maybe I am just sick of everything!! Sick of the hospitals, nurses(especially the ones that don't know their head from a whole in the ground), doctors, educated guesses, big words I don't understand, stupid beeping noises, and most of all those ladies that check vitals!! I hate the sound of their squeaky little things they push!! I have had to make them come back later to get vitals because Mackynlee was almost asleep. I ask them to come back when she is sound to sleep. I know they have to do their job, but give us a break. We are on a heart monitor and SATs monitor.

Our thoughts and prayers go out to the family and friends of Mike Thornhill. He passed away yesterday. He is a friend and neighbor of ours that was in a motorcycle accident a few weeks ago.

For the Lord does not abandon anyone forever. Though he brings grief, he also shows compassion according to the greatness of his unfailing love."
Lamentations 3:22-26; 31-32

Dear Lord,
Please help this family in this time of loss and overwhelming grief. We don't understand why life is filled with such pain and heartache. But I pray this family will turn their eyes to You and seek to find the strength to trust in Your faithfulness. I pray they will wait on You and not despair and will quietly wait for Your salvation. Please show this family your compassion, Lord. Help them through the pain. Though we can't see past today, we trust Your great love will never fail us.
Amen