Tuesday, December 20, 2011

Rocky road to recovery

Mila will not be extubated today :( She had an episode of bronchiospasms early this morning and they had a hard time recovering her breathing. She calmped down and her body was fighting the ventilator. They gave her albuterol treatment and her breathing finally recovered. The doctors initially said maybe later today they would extubate her if her stats all stayed stable. They took her off the paralytic but kept her sedated. She had all the staff cracking up with her flexible legs pulled straight up in the air just chillin.

Her pulse ox dropped low enough for some nitric oxide and about 11 doctos, nurses, etc to occupy her tiny room. (We asked for an upgrade with a bigger room and a jacuzzi tub but for some reason they just looked at us funny LOL). They decided to reparalyze her and give her even more sedation.

They did an echo trying to figure out what was causing her to desat. There is a small leak from the VSD patch which sometimes happens so we need to pray her body will do its job and close that tiny space on it's own. Between that and her pulmonary hypertension things didn't go as hoped overnight but she is stable now.

They are being extra cautious and not rushing the extubation because she has so many things going for her that can make extubation difficult. The airway surgery last week is the biggest reason they are being so cautious. She still has swelling despite the steroids and will be getting another dose of steroids shortly. 

I'm trying not to be too disapointed because I really just want my jelly bean all better in my arms and instead we had a little setback. They will feed her TPN since she will be intubated at least another day. She aquired another nurse so she's got two sets of eyes on her at all times.

This is the hardest, most emotionally trying time ever. I feel like I laid down for 5 minutes last night even though we slept for 6 hours. We were not able to stay in CICU last night with Mila because there is simply no room with all the equipment.

Mila needs lots of prayers for all the things I mentioned above. We need prayers for strength amd energy. Mila will be in CICU at least another night...we will have to decide on a plan for Zoya as well depending on how much longer Mila has to stay in CICU. Please stop for a moment and pray for Mila and for us!

21 comments:

  1. Oh Sarah!!!! Storming Heaven for Sweet Mila and her beautiful parents!!!!

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  2. I KNOW God is at work as I am just a simple reader of your blog but I woke up with Mila on my mind and was again prompted to pray for her several times this morning. God HAS been faithful and will continue to be. Prayers for mom and dad too. Will continue to check for updates today.

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  3. Praying--praying--praying!
    Kristina (and family of 4)

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  4. Lord Jesus I pray that you would make yourself tangibly known to this tiny sweet girl. I pray that you would comfort her mind and heal her body. I pray for Sarah and Shawn that you would drawn them close to each other and to You. Give them supernatural strength and rest. Amen.

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  5. I've been lurking on your blog for the past few weeks. Your girls are beautiful, and I've been touched by your story. I just wanted you to know that I am praying for Mila today, and you and your husband, as well.

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  6. I know you don't know who I am, but I want you to know that I am praying for your beautiful daughter and your whole family during this difficult time.

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  7. Keep on praying. Thanks for the updates.

    Mila doesn't only have 4 eyes on her: she does have God's eyes on her all the time,even during the downs, and tons of prayers from many people. I know it's difficult but hard times are a big opportunity to strengthen faith and trust in God.

    Kisses for the Jelly Bean. :-)

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  8. Oh my goodness, my heart is just aching for you. Your family has touched my own heart in so many ways. We will continue to keep the family in prayer, we will pray for strength for all of you to keep on going! You are all fighters! Continue to hold your head up, she will love you even more after this is all said and done. Yes, it needed to be done, don't put that pressure on yourself. Pick up that load on your shoulder and hand it over to your Heavenly Father. He knows every tear you have shed, every thought, He has you all and especially Jelly Bean in His hands. May God continue to comfort and carry you during this time and May He give you an abundance of peace while you wait.
    Sending our love,
    Stacey
    Colorado

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  9. Praying for you, Shawn, Zoya and Mila. Like you said, even though she NEEDS the surgery, it is so hard. It's never easy to see your child in pain or struggling, but this is just so hard to understand if you haven't been there. Continued prayers for Mila's breathing and airway, and that she is off the vent soon and you are holding her. That is a great moment. :)

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  10. It sounds like your Lil' Bean is trying to show them her stuff! Really, she is an amazing baby girl! It sounds like her body is responding appropriately to all of the stress. I would guess that she's pretty uncomfortable with the tube and can feel pain more when they decrease her meds. The good thing about keeping her intubated is that she's not feeling any pain. Between the sedatives and paralytics, she's not suffering. Naturally, when they decrease those, she IS going to fight and clamp down on the tube. It's her way of telling everyone she's angry! But, they have to decrease them to see if she can breathe own her own, without dropping her sats too much. When they DO pull the breathing tube, you will definitely have to push for good pain control.
    I know this is a hard time for you, Sarah, but in a few days your little Angel will be in your arms and you'll be able to comfort her. Talk to her as much as you can. Especially when she/her vital signs show that she's distressed. She CAN hear you! I've been intubated many times and I remember everything, except when I was heavily medicated and sleeping. So sing, whisper in her tiny ear. Say some prayers with her. Mila Hope is a Shining Star in this sometimes dim world! When everything seems bad, I come here and find hope and smiles in a Precious, Precious Baby Girl! Have Peace in your Heart!
    Saying Prayers & Sending Love to Mila and Family ~ Jo

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  11. Thinking of and praying for you and sweet Mila, along with those caring for her. It is heart-wrenching to read of these complications, but heart-warming to read of the good care Mila is receiving from the hospital staff. I hope she's feeling much better soon - and that you can somehow find time to rest.

    Sending all good wishes,
    Susan in Ky
    Cousin to 2 from EE

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  12. OK, Sarah, we have the candle lit again, and it's just going to STAY until all is well. The only other thing I can tell you is BTDT with a sweet little one on a ventilator, nothing breaks your heart more than that silent cry because of the tube. I'm so sorry it's not just easy and done already. Thank GOD she's here, at an excellent children's hospital, WITH her mama and daddy... email if you need anything esdehority@aol.com

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  13. Praying for Mila, the medical staff, you, Zoya, and those caring for her as well.
    I cannot imagine how stressed and anxious you are feeling. Not to mention just plain exhausted.
    Please sweet Mama, you are doing what has to be done for the little jelly bean. I know it is hard on you and her now, but a year from now these days will probably not even be a memory of hers and only a distant one of yours. Yet she will be healthy, no worries of how long her little heart will last. She will be up running around and I bet she will even be saying "woo woo". Hold tight to Shawn and pray your way through the seconds, minutes, hours, days, whatever it takes until you can relax. Prayers of so many who read your blog are being said with you and we are lifting you up in our hearts.

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  14. Prayers for Mila, ongoing! You guys must be so scared. I can't imagine how hard this is for you so lots of prayers for you too, praying God brings you strength and prayers for big sister Zoya who is prob. wondering where everyone went again.

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  15. Praying with you and for your and Mila's strength.

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  16. Prayers for your little one's full recovery and for some peace and rest for you both.

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  17. You got it! She is your miracle baby. God's got this one covered. We are praying.

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  18. You all are in my thoughts and prayers. Praying your jelly bean has a great day and just amazes all the Dr's and nurses!

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  19. I have been following your blog since you brought Zoya home even though I rarely comment I enjoy reading about your sweet family. I am praying for Mila and for you all and everyone who is involved in Mila's care.
    Also I wouldn't worry about having to start from scratch with the bonding she has bonded you are her mommy and daddy and she will know and feel your love nothing changes that. God bless all of you.

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  20. Praying for little Mila, and Mommy and Daddy too. Your story has been beyond inspirational to me and you will continue to be in my prayers. Who would have known how literal the title of this blog would become....Mila sure has a heart full of hope!!

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