The Sweetest Thing

I came in this evening from dropping Blake and his friend off at youth group and stumbled upon the sweetest thing. In the recliner sat a daddy completely taken with one of the most beautiful little girls I've ever laid eyes on. Enormous pink bow, jammies, and lacey socks, there she sat snuggled into his lap. Her rosy cheeks just glowing. I stood and stared for a moment and could think of nothing more in this life that could be sweeter than what I was seeing.

Then it happened. Something even sweeter. After Dave left to pick up the boys from youth tonight I sat Ashley Kate and that enormous bow in her crib while I went to ready her things for bed and when I stepped back into the nursery my beautiful baby girl was fast asleep. Sitting up in the middle of her crib where I had left her. Rosy cheeks, pouty lips, swollen eyes and all. There she sat with her little hands folded in her lap. I laid that sweet girl down on her pillow and she immediately went into "classic Ashley" pose and placed her hands behind her head as she slept. I couldn't help but stare at her incredible beauty. Even as swollen as she is tonight I can still see her. I see that little girl who has through it all maintained her tiny features. Her long eye lashes, tiny nose, pouty lips and rosy cheeks. She looked like a baby doll. A cabbage patch doll to be exact with those huge cheeks and neck. I didn't have the heart to take her pony tail down and remove that hair bow. She was sleeping so well I didn't dare disturb her. We've had some really, really long nights lately with very little rest for her or myself. I just let her sleep the way she was. Thankfully I had already clothed her in her kitty cat nightgown before I left to get her things from the kitchen. Now each time I go into to check on her I smile at the image of her sleeping with that giant hair bow in place. Its shade of pink matches her cheeks tonight. There a little flushed.

The swelling remains. Today was the worst since it showed itself last Friday. Her little face is so swollen that her mask left imprints on her cheeks today. That's pretty puffy! By bedtime tonight her left eye had opened up to where she could use it although the eyelid was still heavy. I think I saw some improvement in her neck also. Her left side is more swollen than her right and its usually that way. Last year the blood clot was on the left side in her interior jugular vein. Her right IJ is already closed and had poor blood flow through it because of a central line that was placed in December of 07(remember that giant purple one?). It was too big and we lost access to that vein when it was pulled. So her blood return from her head and neck is already compromised even without a new clot forming. Why do I think she has a clot? Because of the way her swelling came on and the way it is reacting. In the early mornings after laying down all night long her eyes are so swollen they barely open. The amount of swelling is much worse in the mornings and then throughout the day as she is up it does a little draining and starts to improve. Its not just us who notice the swollen shape of her face and neck. Several people have commented on it the last couple of days. Its obvious when you look at her that somethings not quite right. Anyway, because of the way she is draining during different times of the day I know this is a blood flow issue and not the "moon face" shape that prednisone causes. Although she does have some of that from the drug, this is different.

The ultra sound was pretty inconclusive. The areas that they could see showed no clotting, but there were areas that they could not read because "baby crying". Remember? I won't say much more about disagreeing with this ultrasound because I just don't need to, but I will tell you that I knew it wasn't being done right. Why don't we just take her into the hospital? Its not that easy. You can't convince them that we know what we are talking about when they think they know what they are seeing. Its just not that easy. We can't make someone admit her and treat a condition we know she is struggling with when they have never seen her and think this could be normal for her. Anyway, its just where we are at this point. We just have to find a local team to care for Ash. Tomorrow I will make some more phone calls and try and get someone to treat this. Perhaps it will just resolve on its own. Perhaps it is just poor drainage from scar tissue and lack of access. Then again maybe it won't. Its the maybe it won't that is concerning to us. Last year she was on coumidin for 6 months while being treated for SVC. I'll be talking with the surgeon's office who placed this line for us in October tomorrow. I'm hoping they can help.

Outside of the swelling she looks pretty good. She is frustrated by the lack of ability to use her eyes when they can't open, but once they begin to she plays and looks at books all day. Her stool output has come down the last two days and we are so grateful. We have been able to advance her feedings twice this week and it looks as though we might again tomorrow. Thats all positive news. As soon as we can get her back to tolerating full feeds the sooner we can get this line pulled out and perhaps all the clot issues will be leave with it. She hasn't needed any IV replacements since Monday and that too is encouraging.

So all in all, we are watching her closely. Trying to figure out treatment for this latest issue. Enjoying our days here with her at home. Being thankful for this sweet baby that God has blessed us with. Attempting to settle back into normal life with some type of routine, and concentrating on just being together again as a family. I feel so blessed to be home tonight. All three kids sound asleep at this hour and me getting really close to doing that exact same thing. God continues to bless us. So undeserving of all that we have been given, but very, very thankful for these days. Good night my friends. Trish