Wednesday, March 28, 2012

A few steps back





Good morning! I love how the Joy really does come in the morning! Not because something major happens overnight but because it's another day, another chance to live, to love, to do things right, to be a blessing, to breath.... Since Ivy is not allowed to wake up yet we are taking advantage of our bed at RMH and sleeping a few hours. When I walk in to her room in the morning~ OH THE JOY!!! My baby is here, she is alive, she is a living testimony to the Grace and incomprehensible Love of the Father!! She is my child, the one God knit in her mothers womb knowing all along that it would be me who would get the gift of being her forever mommy!!! Joy!! What a perfect middle name for my tiny little bundle of joy! 
I'm so sorry that my update was not quick to come. Yesterday was an unpredictable day. Most of the time I had my phone and computer somewhere I wasn't. But here we are, a new day.
Yesterday I was fortunate to sit in during rounds again. Met with her doctor who told me they would let her rest before doing anything else and that he was not planning on doing a heart Cath until Wednesday. A few hours later we were told that Ivy was being prepared to clamp the ECMO and see if she could hold her own. It happened around noon, it was too soon, her body was NOT ready. So back on ECMO she went. Around 2 they took her for another Heart Cath. You know, the one they said they didn't want to do until Wednesday ha! So I guess she had rested enough and they changed their minds.... 
The doctor was just concerned as to why Ivy had such high pressures and he and Dr Pophal both had time so off they went with her. At 9pm, 9!!! They brought her back to her room!! We spoke to her doctors, they said they put a stint in her pulmonary valve in hopes of it relieving some of the pressures. It did help her lung. Remember, the pulmonary artery and aorta are on different sides now. They are used to doing different amounts of work. And her body has never seen this much blood pumping nor sats of 100 much less even 70! So while these problems she is having are scary and even to her doctors, unexpected, it is not unusual that her little body would be having some issues with all this new anatomy. We continue to pray that she just needs rest and time to adjust and heal. She is using much more support from the ECMO today. And she is very swollen. She has some blood draining from her nose and chest this morning and with that and the swelling I was a little overwhelmed as I sat and took it all in. 
Our nurses are amazing, her team is amazing, we could not be in better hands!!!! She always has at least 3 people looking over her! 
Her body is currently 38*. She was 34* when she came out of the OR last night and it took them until 5am just to get her to 38*. They were all jumping up and down when she finally reached that milestone! 
So our prayer request today is that they give Ivy today to rest. All day! And that these super high pressures can be relieved by the stint they put in yesterday and medication if needed, but that it would require no more surgery. That her body would be accepting of it's new design and that her blood pressure would go up.
Thank you Team Ivy for ALL your prayers!!!! Thank you Lee and Sarah (and soon Madeline) for the sweetest bear and balloon! Thank you Amy for my visit yesterday, it was just what I needed and such a sweet time! I loved seeing Grace too!!! Thank you for the calls and texts and emails and comments, all of these are the food for my mama heart during the day!! 
Love to everyone!!!!!!!

47 comments:

  1. God Bless you all. Prayers continue here in Connecticut for precious Ivy Joy!

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  2. But they who wait for the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. Isaiah 40:31

    Mary, I am praying this verse for you and your hubby, as well as for Ivy. You are running a marathon of the heart right now, alongside Ivy, who is fighting for physical strength and life.

    I pray that Ivy's rest today will renew her strength ~ and that while you run this marathon, your heart will not grow weary.

    So many of us can literally feel the ache for where you are right now, and because of that, we are prompted to pray without ceasing.

    God's still got this!

    ~Angie J.

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  3. Once again sighing. Thx for updating us. xoxo & prayers.
    Luciana
    Abu Dhabi, UAE

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  4. Mary - Ivy is almost my first thought in the morning and my last prayer at night. I know this is hard but I do believe that Ivy has been and continues to be protected by God and that He brought her to your family and the US to be healed. Love Maggie

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  5. rThankful that things are holding steady and praying specifically that Ivy's high pressures will decease and she can come off ecmo. Mary, you are one tough awesome mama!

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  6. Praying for the rest and strength for Miss Ivy Joy and HER family. Did everyone see those PINK toes?! Beautiful!

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  7. Mary, thank you for the pictures. We landed in NICU next to a child who was sedated after heart surgery with all those tubes and wires. I was so grateful I knew from others what that was all about. It is valuable for others who come after. Love the picture of her beautiful foot. Seeing is believing. Praying for Ivy to adjust and thankful for your joy in the morning. You sound good today.

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  8. We're all praying everyday, several times a day. When I put the boys to bed last night, little Ivy was the only thing that GB prayed about. We love you guys!

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  9. Continuing to go before our AWESOME God for little Ivy! We just love her to pieces and are praying constantly for her!

    “I am the LORD, the God of all mankind. Is anything too hard for me?" Jeremiah 32:27

    Love, the Hunt's

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  10. THANK YOU! I know updating those of us you don't even know shouldn't even be a priority but we anxiously check for a glimmer of what to pray for you and your Ivy, the hurdles overcome.

    I often tell my patients (NICU but the same idea) to expect the path to be a dance. Two steps forward and one step back. It gets hard, & can be overwhelming but I always read Isaiah 55:8-13.

    Our prayers for Ivy are the very first when we wake, and the last when we sleep.

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  11. so many prayers for your beautiful baby girl and for her mama and baba and all who love her. May God's grace be with all of you. My oldest son, in seminary, has an entire Abbey praying for sweet Ivy.

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  12. Ivy Joy is still in my prayers! Thank you for keeping us updated!

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  13. So beautiful and PINK:)!!

    I'm fully trusting the Lord still has little Ms. Ivy in His perfect hands!

    She has such a wonderful group of doctors looking after her... And even better, A Mom, Dad, Sisters, brother, friends, strangers etc...on their knee's covering her in prayer and love!

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  14. Her little foot is no longer blue!!! So many answered prayers, and I know there are more to come. God bless you all.
    Daisy

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  15. Mary, I know that overwhelming feeling well. Our China heart baby had two ECMO runs (7 and 5 days). Stay strong and know that God's plan will be perfectly fulfilled.
    Prayerfully supporting you and Ivy from afar.
    Donna

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  16. I have never been so overjoyed to see little feet in all my life!! Especially one's that are not "blue"! Continually lifting, praising and shouting for IVY JOY! It has been truly a blessing to witness God's Grace in the making.

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  17. Look at those beautiful PINK toes!!! We are holding you all very close in prayer and hope that Ivy can just spend the day resting and allowing her little body to start the healing process! Hugs and prayers!!

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  18. Mary & family~

    While I feel like I've been carrying your sweet Ivy in my heart since I've learned about her, I truly know she is being carried by one so much powerful and greater--our God.

    What a privilege it is to be able to pray on your behalf.

    Praying for steps forward!

    Standing in the gap~
    Lisa

    "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God."
    2 Corinthians 1:3-4

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  19. Her toes are pink! That's a great thing to see. Sending hugs and blessings to all of you.

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  20. Continuing to pray for precious Ivy in Arkansas!

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  21. So true!... "Weeping may endure for the night, but joy cometh in the morning" Psalm 30:5

    Praising God for every moment you have with your precious Ivy Joy....and for those cute PINK piggies!!!!!

    We are covering your girl in prayer at this very moment and will continue...

    Love and blessings,
    Robin

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  22. We are continuing to pray for your precious daughter in Florida. This is a tough rollercoaster ride, but the Lord, our faithful father has it under control! My son was on ECMO 6 days, his lung collapsed, and it took 3 trials for him to come off. Just to encourage you...he is doing great...he just ran into his art class wearing cowboy boots and shorts in the Florida heat, singing! :) A verse that really helped me through his surgeries was Joshua 1:9... Do not be terrified, do not be discouraged for the Lord your God will be with you wherever you may go! We are praying your family through this day.
    Angela

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  23. I'm so glad to see this update! We have not stopped praying for Miss Ivy and her Mama! I heard another update from Di so we are now praying for her lungs too!!

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  24. My prayer....

    Dear Lord,
    Thank you for your tiny miracle we call Ivy Joy. She needs you today Lord.. She needs you to breathe life into her lungs now. Lord, we know that you can do this! You are mighty and powerful, and there is nothing you can not do. Your word reminds us that with you all things are possible.. Your tiny baby girl needs you... Please heal her Lord. We know you can! And, that brings us great comfort! Please continue to give Mary and Bryan peace when doubt creeps in and rest so they can be ready when Ivy needs them. You have called them to this child Lord. And, they have obeyed without hesitation.. Please bless them now by giving their child life.. Life without the help of a machine.. Please give Ivy's body the restoration she needs to breathe on her own! Please help her new heart to understand it's new role.. Your works are amazing Lord.. May you be glorified through your mighty work in your precious child! I pray these things in the name of Jesus! ~Amen"

    "The One who called you is faithful, and He will do it!" 1Thessalonians 5:24

    "Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

    "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."

    Love,
    Di

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  25. Mary, we are praying often for your sweet Ivy. Thank you for these updates but it is also understandable that you have much more important things to do. The awesome thing is that when we don't know details to pray for...God does! He applies our prayers exactly where your amazing daughter needs them.

    Praying for increased blood pressure and decreased pressure in her little lungs. Praying her new anatomy begins to adapt to the changes and functions in the way it should.

    Praying for rest for your baby girl.

    Love, Catherine and Hannah

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  26. Forgot to add the verse reference:

    Isaiah 40:28-31

    Isaiah 41:10

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  27. You are showing such calm in the midst of all this. You truly were called to be this little girl's mom! I hope she gets a full day of rest and healing.

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  28. I'm praying right now for each specific need. And I'm so glad we serve an awesome God who can do anything...great or small.


    " Wait and hope for and expect the Lord, Be brave and of good courage and let your heart be stout and enduring. Yes, wait for and hope for and expect the Lord." Psalm 27:14

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  29. Mary we are all here with you. We are praying with you for Ivy. My daughters class here in Connecitcut closed their day today with a special prayer for Ivy. May Ivy gain the strength she needs, and may you feel peace knowing God is by your side.

    We've all been praying for your sweet Ivy.

    Blessings from CT
    Caroline

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  30. I continue to pray for you all! I remember those sweet nurses by my baby's side constantly too~ they are PRECIOUS!!! I love that our girls both have Joy for their name because they both symbolize that for us moms!!! I am lifting you up constantly and for that precious baby too. Wish SO wish I could be there with you!!! XOXOXOXO

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  31. Oh Mary...

    I am praying so hard. I can't even begin to imagine what you are going through right now.

    Thankful for a Heavenly Father who answers prayers.

    Jill xox

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  32. Hi Mary, I am a friend of Diana's and we have been praying for Ivy here in Texas. Your faith is inspiring so many people.

    Lots and lots of prayer coming your way.

    Kim

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  33. We are praying, too, for your precious little one.

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  34. It was good for MY soul to see you my friend!! And I broke all of my "30 days on lockdown" rules for Grace to do it- HA, but I know God is watching out for BOTH of our girls!! Praying for your precious angel to get her day of rest today.

    Love you!

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  35. I came over from Diana's blog and just wanted you to know I am praying for Ivy Joy!

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  36. Praying for your and His Joy!! Let little Ivy get the strength she needs and feel the love surrounding her.

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  37. So excited to see her great color in her foot! Keeping you in our prayers!!!! Sandra, Macy, and family

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  38. Your Ivy Joy is being lifted up to the Lord from Kentucky .. and from all over the world. Trusting your precious one in His hands & asking for her life to continue to be a miracle & testimony for years & years & years to come!

    Love to you,

    Debbie Eriksen

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  39. Lord we thank you for the Gift of Ivy Joy! We thank you for her life and for the LOVE that you have for her and her family. Surround them and keep them in your tender watchful care. Station the angels round about Ivy Abba, and be with her in that hospital room. Thank you for the precious gift of life and for life anew through Jesus who gives us His strength and His Grace.
    In Jesus Name. Amen.

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  40. So praying for your sweet baby!!!!

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  41. My prayers are with you and your precious Ivy.

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  42. Hi..My name is Mindy and I have followed your blog for a long time. I am praying for Ivy Joy and your family. You are on my mind all day and I anxiously go to your blog for updates. Sending you hugs and prayers from New Jersey!

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  43. Mary I wish I could be there to hold your hand through all of this and give you a great big hug. I know that the Lord is and that he is surrounding you with love and all the things you need right now. But Those who hope in the Lord he will renew their strength. love you

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  44. Prayers and thoughts are with your family. Sending lots of hugs your way. Ivy is such a fighter.

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  45. Praying for your sweet baby girl! I have faith that she will be healed in Jesus' holy name. I have been following your blog for awhile but never commented before. Do you have an email? I would love to email you.

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