Thursday, January 12, 2012

Thursday Morning Update

Last night Mila would have slept through the night if "obviously never been a parent Nurse" hadn't woken her up 400 times to do stupid things like change her diaper when it was unnecessary. If all went well, the mean nurse should have met 4 flat tires on her car upon leaving the hospital (kidding).

Mila has been really lethargic and still not eating well. She has been eating about 6 ounces a day :( She starts drinking and then turns away and looks back at her bottle like, "I really want that but I'm just too exhausted to bother with it." They are still concerned with her breathing, its rapid and labored. The chest xray this morning showed fluid in her lungs and a pocket of fluid in the bottom of one of her lungs....sigh   :( They said the lasix should be taking care of that, but clearly it isn't. I asked about pneumonia and they said they don't think it's pneumonia. Her echo showed she still has a small pocket of fluid on the right side of her heart, although it is a tad smaller than it was yesterday. They tried one more time to pull any fluid out of the drain and got nothing, so they pulled the drain. That was enough pain for her and I to last a lifetime. I can't even begin to describe how terrible that was. But she seemed just a smidgen happier after it was out and she was snuggling in my arms. It'd be great if she'd start eating again and maybe that was the issue, but I doubt it. They tested her hemoglobin and talked about doing a blood transfusion because her levels were low upon arrival in the ER, but decided her levels were okay and they don't need to do the transfusion. They were thinking maybe that was why she's been so lethargic and not eating, but met a dead end there when the levels came back okay. They honestly told me they're not quite sure why her breathing isn't returning to normal and they don't think the fluid that is around her heart and in her lungs is enough to cause this much of an issue. It is so frustrating. So the doctors said they have some "investigating" to do. Please pray that they can figure out what's going on with our sweet little girl.

This morning was rough on me. I'm tired. I'm whiny. I need a shower. I have been wearing the same clothes for, oh my gosh, lets just say for too long...too embarrassed to type that. (Shawn's on his way back thank goodness...and Aunt Stacey came up all the way from VA to help out and just left back today). I'm getting to the end of my rope. I know there is nothing I can do and I'm trying to stay positive, but it is so damn hard to watch my girl go through so much pain and suffering...for what purpose? I'm just done. I just want answers. I just want my girl better and home where she belongs. Mila is to the point that she is terrified of most people coming near her or even touching her. I don't blame her. She is trying to be so brave and even tries to keep herself from crying but ends up just losing it. I'm glad she can at least find comfort in my arms when everyone leaves and it's just her and I. For that I'm thankful.

Please keep Mila in your thoughts and prayers.

Mila this morning
Mila after tube was pulled

20 comments:

  1. I'm so thankful that she has you as her mommy. I am so so so thankful that you can hold her and love on her. We will keep praying from our end.

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  2. Poor sweet heart. And mommy. Again, I'm glad she's in loving arms. Will you email me your address, maybe at the hospital? I want to send her a little something!
    Christina0469@msn.com

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  3. Bless you Sarah, it is SO difficult to sit and wait...and wait...and wait....for answers in the hospital setting. I have experienced that and my heart just breaks for you right now. I wish I could take it away! Are there any other moms there that you can spend some time with and talk to? I know you probably don't want to leave Mila's side and if she isn't sleeping much it's hard to get out. I'm so glad that Shawn is returning. A shower and a change of clothes WILL work wonders. Stepping up the prayers for wisdom and answers and healing. Again, just know that so many are lifting you to God and caring about you from afar. (((GIANT HUGS)))!!!!

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  4. Prayers are coming. Have you talked to a pulmonologist yet? Maybe you could self-refer if you haven't seen one yet. I am praying especially for the doctor's to finally understand what is going on so that Mila can get what she needs immediately. Praying, praying, praying. And I'm asking everyone I know to pray, too. Thank you for updating everyone (especially those who only "know" Mila via RR). Your precious child is dear to so many of us and is always in our prayers.

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  5. Sarah I'm praying as hard as I possibly can for your family, her doctors, and for healing. I wish there were more I could do, I can only imagine how exhausted you are.

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  6. I have no words for you but I'll keep praying! I can not imagine what you are going through. Thank you for keeping us updated, as we all know how exhausted you are.

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  7. Praying !!! I don't know what else to say! Just praying.

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  8. Awww, sweet girl, it's breaking my heart. Many prayers for you. Hoping that tube out helps alot and you get some more Mila smiles. Look at her all-stretched-out sleeping position now! Love her lil rainbow baby legs.

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  9. Praying for sweet Mila and her mommy too.

    Brooke
    www.TheAnnessaFamily.com

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  10. praying for your beautiful baby...hang in there mama I know it has to be soo hard...keep the faith and we will keep the prayers coming for her <3 <3 xxxx from Texas

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  11. Sarah,

    Thinking of you and checking the blog a few times a day for updates. I'm hoping you get some concrete answers and solutions soon so Mila can recover and you can go home. My daughter spent some time in a NICU when she was first born and I know what a big difference a good nurse versus a mediocre nurse can make. Tell the nurse if you think their procedures are not necessary or Mila's sleep is more important at this point(changing diapers, etc.). You see the big picture and the cumulative effect on Mila of all the disturbances - the nurse only sees what happens on her shift.
    Sue H.

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  12. Hang in there! Many prayers for Mila to start feeling better and for God to guide the doctors to the answers.

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  13. Uggghhh! I hate that I have no words of comfort for you.

    Thankful that she is able to be comforted by your loving touch.

    Prayers!

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  14. Hi, I am a fellow Ukrainian adoptive parent and a NICU nurse. I have been following your blog since the beginning! I am so sorry for what you are going through. Situations with cardiac babies often go two steps forward and one step back. Hang in there and have faith that the problems will resolve with time and intervention. If she is in pain please don't hesitate to find a medication to alleive her discomfort. As for the night nurse, I have had a child in the hospital and I can totally relate to what you feel. However the nurse must assess the baby regularly, particularly due to her condition. It would be negligent for her not to, but maybe you can work something out like doing vital signs and assessments when the baby wakes up on her own or allowing for a period of uninterruped sleep and grouping all the tasks together afterward. Thougts and prayers are with you and your family, you are doing an awesome job, and I hope she recovers very soon.

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  15. Praying for sweet Mila's healing and her wonderful family.
    Hugs

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  16. Ugh! I hate when things don't seem to be going quite right, yet the doctors can't find the cause of the problem. Hope Mila is feeling better now that the tube is gone!

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  17. Aww! Praying for you and Mila Bean! I hadn't checked in a few days and was so shocked to see that you were back in the hospital and another surgery! :-(

    Praying that all the unwanted fluid goes away and you and Mila can go home soon and stay home! What a journey you have been on with her in such a short amount of time.

    Stay strong Sarah, you are doing amazing and Mila is just as blessed to have you as you feel she has blessed you!

    xoxo

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  18. I know you don't know me but I work with your aunt Debbie Pastore and have been following your amazing story since you adopted Zoe. I pray for little Mila and for you and Shawn...that you find the strength to stay positive. You are such wonderful people who have opened your hearts to 2 beautiful daughters. You should be so proud of what you have accomplished already in the short time you have had Mila. Mila has wonderful parents who will help her make it through this. Keep the faith!!!

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  19. hi, i know you don't know me, but i know shawn, he graduated with my son. omg, i pray for your little one mila. you have so many people praying for her. i know you have to have so much stress in your lives right now. i just wish they would find out what's wrong and fix it. i will continue to pray for mila. you and shawn have such really big hearts, i admire you both. don't give up, just keep the faith. love to you both, kim.

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