Tuesday, January 10, 2012

Tuesday Morning Update

Mila had another echo at 7 this morning and the news is not what we were hoping. The effusion looks worse...she has more fluid around her heart now than she did last night despite the meds. She just got another dose and the doctors will be rounding soon. She is pretty uncomfortable. They may decide to take her into surgery and drain it today since the meds aren't working :( As much as we don't want this, at this point Mila is so uncomfortable that we just want them to fix it and make it all better. Everyone here seems pretty surprised Mila has this pericarditis. They are calling it Dressler's syndrome because the onset was not right after her surgery. When we left here she looked perfect. Maybe that is why when I called cardiology three times to tell them my concerns they dismissed them saying she looked too good when we left to have anything wrong cardiac wise :(

I tell ya....my friend Shelly says to her kid's doctors, "you might have M.D. after your name but I have M.O.M. after mine." I am a pretty patient and non confrontational person for the most part but the doctor last night (who might have even been younger than Doogie Howser) kept telling me how good Mila looked and how he was sure it wasn't cardiac related and he'd have to ask the supervising doctor if they even wanted to check hear heart out or not and it's probably just a virus. Thanks to the supervising doctor who clearly saw Mila was having breathing issues and listened to me that something was wrong.  She ordered the chest xray, EKG and echo. Doogie apologized by the way but I'm still annoyed by him. This is my baby's life. We didn't drive 2 hours (after already having been in the car for 3 hours that day) because we thought our baby just had a virus. UGH! Okay I think I'm done with that rant. I'm trying to stay positive but everyone has a breaking point I guess.

Trying to rest in God's promise. He is so good. Yesterday on my way home from the ped appointment when I knew we were headed back to the hospital I just lost it. Big tears. Feeling so overwhelmed and helpless. Feeling like I couldn't even put one foot in front of the other one second more. Exhausted. Frustrated. Stressed.  Wondering if all this would ever end. When I got home and walked in the door with Mila I saw a necklace laying on the ottoman. I picked it up because I hadn't seen it before. It was a oldish silver chain with a charm that said "hope." I asked my husband where it came from and he said he found it in the couch cushion. I just smiled. I needed that sign.

Please keep the prayers coming for Mila.

10 comments:

  1. Bless her heart and yours!!! I can't imaging what you are going through. Praying for ya'll!!

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  2. Thank you for keeping us updated with Mila as I know you are so busy, exhausted and frustrated. You have momma instinct and if you feel something isn't right you PUSH for it like you are. You know your little girl more than anyone. Mila is a fighter and she has so many prayers coming her way!
    Praying from Nebraska

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  3. Went to bed praying for your girl and am praying again this morning. Praying for you all too - you've been through the wringer! Hang in there! God is good.
    P.S. Shelly is right - Mama knows:-)

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  4. Thank you so much Sarah for taking the time to update us. It really means alot to those of us who have grown attached through the blog. I agree 100% with Shelly, M.O.M. has a gut instinct as to what is wrong with her baby that M.D. just doesn't. Thankfully, most doctors learn this and know to listen to us when we tell them something is wrong. Doogie learned from you and I bet next time he listens to Mama.
    I am praying for rest for you all. I know you can't rest until you know Mila is okay and I hope you get that report very soon.
    The necklace is indeed a sign. God has worked so many miracles already with Mila, he's reminding you who she is and that she is His child and he will never leave her nor you. Hang in there Mama, so many have you covered in prayer here on earth and our Lord has you covered even closer!

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  5. HOPE! YES! Romans 15:13 tells us "May the God of HOPE fill you with all joy and peace as you trust in him, so that you may overflow with HOPE by the power of the Holy Spirit." It's no coincidence that the necklace was there with Mila's chosen middle name on it! Praying!!!!

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  6. I woke up in the night praying for you. Thank you for the update. More prayers coming your way!

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  7. We will keep praying for your miracle baby. I'm praying for wisdom and skill for the doctors and nurses, strength for Mila, and peace and joy for Mommy and Daddy.

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  8. After reading all of your updates, it becomes clearer and clearer why your story played out the way it did- with God's hand leading it all! Mile needed you to get her home ..and quick - to be able to be saved. Hang in there!
    * I always sign "anonymous" becuase it gives me grief trying to sign in :)
    Bobbi

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  9. Prayers for you and your family. Bless you guys so much!!

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  10. I don't know the right words to say but I am thinking of you all and praying for a healthy recovery.
    Your Fla friend
    Kim

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