Thursday, January 10, 2013

Children's Hospital Boston! We're back...

We made it!
The flight went well, Ivy did sensational!
We left the hospital in an ambulance, the airport was only 20 minutes away. Ivy was talkative and ready to roll. We left sky harbor in a Leer Jet loaded with medical equipment and we were on our way. Ivy required oxygen right after take off and did well once on it. We flew very high and very fast and it was a whole lot LESS smooth than our flight home from Boston. 
The team that cared for her were nothing short of fantastic and even though she was trying to rest, they doted on her the whole way. About an hour before arrival Ivy's belly was hurting too much to continue sitting, putting so much pressure on her lungs that she couldn't take a good breath. We were able to get her out of her carseat and let her lay on the stretcher and this made for a very happy and much more comfortable little girl!
 Her little belly is bigger than I have ever see it, yes that means bigger than the photo I posted last time this happened. Once we arrived at Children's my anxiety was immediately lifted and I felt as for the first time in a week, I could take a deep breath. The staff was so happy/sad to see their little buddy again and Ivy was actually waving and talking up a storm! 
They wasted no time getting chest x rays, echo, labs and so forth. They spent lots of time listening to the details of the past week and even The doctor on the floor last night said the symptoms we went in to the hospital with last Thursday are all pretty classic symptoms of concerning tricuspid valve problems. Interesting. They were anxious to get all their own tests ran. 
By 3 am they were just finally finished and ready to let us sleep a few hours. Ivy was made NPO right away (nothing to eat or drink) so I'm guessing there is a possibility of heading to the cath lab today. There is no guarantee though, Dr Baird needs to review every bit of new and old records and labs before they make that decision. The goal this morning is to get this fluid off her, decrease her belly size and discomfort, and let her rest a little. I'm off the the shower and to get my Starbucks! More tonight!
posted at

42 comments:

  1. CandyJanuary 10, 2013 at 5:20 AM

    Very happy to hear that the flight went well and that Ivy was talkative. That's good news. Looking forward to your next update, with positive thoughts going your way.

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  2. LucianaJanuary 10, 2013 at 5:21 AM

    Oh Mary! I'm so happy all is well and the trip/transition was smooth. Go get your coffee! Or TWO - you deserve it. Kiss those sweet cheeks for me. Praying without seizing.
    Love,

    Lu

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  3. AnonymousJanuary 10, 2013 at 5:23 AM

    Wow, What a difference prayer can make! THANK YOU, LORD!

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  4. KathJanuary 10, 2013 at 5:23 AM

    Relieved to hear sweet baby girl is resting after the flight! Still gotcha covered here in Germany! Knnow you are loved and covered for as long as it takes!

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  5. PaulaJanuary 10, 2013 at 5:23 AM

    Thank you so much for updating. So glad you're in Boston with Ivy's team who know her best. Continuing to pray for your little firecracker!

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  6. KellyJanuary 10, 2013 at 5:24 AM

    Mary-so thankful you were able to update. We have been praying for Ivy and will continue to do so. Hugs to you!

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  7. CarmenJanuary 10, 2013 at 5:26 AM

    Thanks for updating us Mary. I am so glad you feel peace about being in Boston. I continue to lift you in prayer.

    Romans 15:13

    13 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.

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  8. Jennifer PJanuary 10, 2013 at 5:26 AM

    Glad that went as well as it possibly could. Are you in the icu? Boston is the place to be for Ivy. Thanks for the update. Happy to come down if there is a need. Just so you know.

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  9. DianeJanuary 10, 2013 at 5:27 AM

    Praying for you all. Mary.

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  10. Julie WJanuary 10, 2013 at 5:27 AM

    Such good news, Mary. Sending continuous prayers your way.

    Julie in MN (Diana's friend)

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  11. jenniferJanuary 10, 2013 at 5:28 AM

    So happy the trip went well!! Praying for your sweet family that you will get the answers of hope today!!

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  12. SusanJanuary 10, 2013 at 5:36 AM

    Thankful she is in Boston again in the hands of such an awesome team! Praying you get answers today and can progress forward to get sweet Ivy well and living life to the fullest again!!! Hugs!!!!

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  13. Jane KlingenbergJanuary 10, 2013 at 5:43 AM

    Hi Mary:

    So thankful to hear from you this morning. A shower and a Starbucks definitely start the day in the right direction. :) You and precious Ivy were the first conscious thoughts I had this morning, as I got out of bed.

    I know that feeling of peace that washes over you when you get your girl to the place where you know she needs to be ... even though you didn't want to need to go.
    Prayers continue throughout the day!!

    With a big hug,

    Jane (and Sadie)

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  14. John G.January 10, 2013 at 5:46 AM

    Mary, So sorry you have to go through all this. My heart and prayers are with you and your family. I know you are in good hands. Praying they will mend Ivy's heart quickly. Thank you for the update.
    Love and Hugs from CT.
    Caroline

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  15. maggie kJanuary 10, 2013 at 5:50 AM

    If Ivy can't be at home with her family - then Boston Children's Hospital is the best place for her. Will keep on praying for the littlest peanut. MK

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  16. WendyJanuary 10, 2013 at 6:00 AM

    I'm sorry that you are going through all of this but am so relieved you are back here with her Boston team. Let me know how I can help while you are here! Keeping you, Ivy, your whole family and her med team in my thoughts and prayers!

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  17. Sandra ChurchJanuary 10, 2013 at 6:03 AM

    So glad the trip went well. Praying for you all!

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  18. AnonymousJanuary 10, 2013 at 6:07 AM

    Mary,
    Let me tell you, Ivy is a "prayer millionaire"! (I, just now, made that term up) You and Ivy are so loved and being prayed for by so many people, I really don't believe you'll know the full extent of all that love, faith and hope this side of Glory!!!
    Peace and Hope to you, My Friend,
    Amy Root

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  19. JbooJanuary 10, 2013 at 6:13 AM

    So happy to hear that you made it safely to Boston and they are looking after your sweetie! Praying for you all!

    janet

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  20. Ally @ Even Miracles January 10, 2013 at 6:16 AM

    May your unfailing love rest upon us, O Lord , even as we put our hope in you; Psalm 33.22
    We pray for you daily and each night before bed Ivy Joy is lifted up in prayers.
    Glad you are there safe and fast !

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  21. StaciaJanuary 10, 2013 at 6:22 AM

    I've been thinking of you all and praying for Ivey Joy and will continue to do so!

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  22. UnknownJanuary 10, 2013 at 6:25 AM

    thinking of you all constantly..praying for Ivy and all of you

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  23. Aj RobinsonJanuary 10, 2013 at 6:28 AM

    Taking care of your little one, yourself and your family is by far the 1st priority though I truly appreciate you (and Diana) updating your blog. May you find peace with being in Boston and a team of medical staff that know your little girl!

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  24. Anne B.January 10, 2013 at 6:41 AM

    Praying so hard for your little lady. I too felt an instant weight lifted to hear that you are at Children's safe and sound. God is at work - let the healing begin for this little lovie!

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  25. KristiJanuary 10, 2013 at 7:01 AM

    Yay!!!! I feel such relief now that u guys are at BCH!!!!

    How does she keep doing this and look so good they ask...."and though she be but little, she is FIERCE!!!!"

    Praying with a JOYful and hopeful heart today :-)

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  26. YvetteJanuary 10, 2013 at 7:15 AM

    MOre Hugs, more prayers but can I jsut tell you I am beyond thrilled you are in Boston!

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  27. KathyJanuary 10, 2013 at 7:22 AM

    Praying here in TX. So glad to hear you are back in place that makes you feel at peace about the care Ivy is getting. Thanks for the updates.

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  28. AnonymousJanuary 10, 2013 at 7:26 AM

    God has delivered you safely to Dr. Baird. He will now guide Dr. Baird to the correct treatment and you and Ivy will be headed home soon!

    Prayers for the fluid to all go away NOW!

    Beth

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  29. AnonymousJanuary 10, 2013 at 8:10 AM

    Praying for Ivy, you, your family back home, and all the wonderful medical staff in Boston. May you find answers, peace, rest, and good health!

    TJ

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  30. The Harlicka FamilyJanuary 10, 2013 at 8:29 AM

    Mary, I'm so relieved that all went well on the flight and that Ivy is in the wonderful care of her amazing Dr. Baird! I just know in my heart that with God orchestrating and being in Dr. Baird's capable hands again, she is going to continue to amaze us all! Big hugs from Atlanta!
    Much love,
    Kendall

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  31. Monica K.January 10, 2013 at 9:04 AM

    So glad you have such wonderful care for Ivy and that you had the best for transportation to Boston. We continue to pray for your family and the docs too. Hugs.

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  32. kim647January 10, 2013 at 9:05 AM

    Praying for her and you all.

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  33. AnonymousJanuary 10, 2013 at 9:35 AM

    Just dropped in to check on you guys. On my knee's in Georgia Praying NOW!!!

    Mom of Fab Five.

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  34. KristiJanuary 10, 2013 at 9:54 AM

    In and out of the house a lot today but each time I just HAVE to check in on our little Ivy!!!!

    Hoping for a hopeful action plan soon. Go Dr. Baird go!!!!

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  35. alexaJanuary 10, 2013 at 9:56 AM

    So happy to read that the flight went well. Ivy is in the right place with the right team.
    Hope that both of you can have some rest and that the great doctor could find a good solution for Ivy's heart.
    Still praying for all of you and specially for little, brave and sweet baby girl.
    alexa

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  36. JenJanuary 10, 2013 at 11:01 AM

    I am keeping you in my thoughts and prayers in Cincinnati! God bless you both!

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  37. 3 PeanutsJanuary 10, 2013 at 12:26 PM

    I am praising GOD for getting you thre quickly and safely and praying for the best course of action now that she is there. Blessings Mary!

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  38. AnonymousJanuary 10, 2013 at 1:32 PM

    Mary, thank you for update here--so glad flight got you both safely to Boston !! glad Dr. Baird can care for Ivy! Get that swelling figured out and stopped -to get relief for Ivy and all your family!Hoping you both get rest and the drs. find answers to help little missy get back home!! I, too feel better to have you at BCH !Blessings and love plus lots of prayer,Cathy in Illinois!!

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  39. LesanneJanuary 10, 2013 at 1:47 PM

    Still and always praying for your beautiful little doll,
    Leslie and Julianna

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  40. LeslieJanuary 10, 2013 at 2:39 PM

    I just can't hold back the tears as I read your description of her belly, her remembering friends at Boston, all of it. I am sorry I haven't commented. I've been checking all of the updates, and been waking in the night and always think of Ivy and pray.

    I am so sorry for all she is enduring and you as well. I don't know what else to say. I am thankful she is here with you, but I wish there was another way for her to get to healing.

    I know you do too. Please know this heart Momma who has sat through the procedures, but so far has been blessed with coming out on the other side with no complications, I am just so sorry. I do understand completely why you are there alone and your DH is home with Lexie and your other children. You do what you have to do. You have more than one child, and you have expenses and yes, my DH has to work too. He is self-employed and just can't take off indefinitely either.

    I know there are many heart Moms in that area, who would be there in a nanosecond if you called upon them as you say, and others as you said too. I have found as well that there is always great comfort God provides through other parents in the waiting areas going through similar experiences. I pray God is providing those people as well.

    Many hugs Mary and Ivy Joy. Stay strong in the Lord and may He carry you through this.

    BTW my little S is listening as I type on her new ipod to "Need You Now" by Plumb. She loves this song. If you haven't heard it, you might listen. It isn't exactly about this, but it is about crying out to God and asking why?

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  41. FannieJanuary 10, 2013 at 3:18 PM

    Glad to hear the trip went okay and relieved to hear that Ivy is back in the care of experts! It really makes ALL the difference!!! I will continue to pray for Ivy, you, and the doctors!!

    I'm only a few hours from Boston, so if you need ANYTHING let me know!!!

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  42. AnneJanuary 10, 2013 at 7:08 PM

    I am so sorry to hear that Ivy is back in the hospital. Keeping you all in my prayers that the good doctors in Boston will find the problem and repair it. God Bless you all!

    Anne in Colorado

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