Tuesday, 18 December 2012

Edmonton...Take 4.

It's true, we are making our 4th trip to Edmonton with little Miss Hope.  The doctors have decided that the heart cath is in Hope's best interest and are going to move forward with it.  They gave us the option of waiting until December 26th, but we'd like to get this going as soon as possible.  I'd hate to find out that Hope needed it and we delayed so we could pretend that Christmas was "normal" this year.  Later the doctor confessed that they had offered the 26th in case things didn't go well.  They didn't want us to associate losing Hope with Christmas.  I told her that if we lost Hope on December 21st or December 31st, we would spend every Christmas holiday thinking about this one regardless.  We are praying that this is not the case and are moving forward with this dangerous procedure.

Today, the GI doctors decided they would stop Hope's antibiotics in order to see if it would stop her diarrhea.  I firmly stated that would NOT be happening.  Hope still has a line in her leg that is infected.  The antibiotics are the only thing keeping her from going septic and I am not risking a blood infection just to stop diarrhea.  They can give her fluids through the line to keep her hydrated.  The antibiotics will run until the line is out, that is not up for discussion.  The doctor then said they planned to switch Hope's formula.  I was so frustrated, they want to switch her to a formula that we have already tried, and failed, using twice.  I know they can't memorize her chart, but let's try something new for once!  GI is going to meet again and see if they can come up with some new ideas, obviously these ones are not any good.

Hope continues to throw up her feeds, has terrible diarrhea and is generally uncomfortable.  I'm not happy about returning to Edmonton, although I feel it is best for Hope.  I am ready, more than ever, for some answers and solutions for Hope's fragile body.  I want to bring her home.

Tomorrow, I will be driving up to Edmonton on my own after Hope is airlifted.  Shawn and Sadie will come up on Friday to join me and will be able to stay for a week if needed.  That is one good thing about Christmas, Shawn is off work.

We called RMH today and have a room starting on Saturday if we are still there.  We decided this would be the best place to spend Christmas if we need to be up in Edmonton.  Sadie will have an absolute blast and will be with other kids that are out of their comfort zones as well.  There is a chance we'll be back in Calgary, but are planning ahead just in case.

Going to Edmonton on my own means I'll be living in the hospital 24/7 with Hope.  I'm not sure how sane I will be by the end, especially with a roommate again.  Please pray for strength and endurance for me as I'm going to need it.  When Shawn and Sadie arrive, we'll move into the RMH and I'll have more of a home base to come and go from.

I am doing everything to keep from having a breakdown tonight.  I have too much to do and not enough time to cry.  I need everything ready for Christmas for Shawn to bring up to Edmonton if needed, packing to do and things to organize.  I don't know how to ask you to pray.  I just want Hope home and this all to be over, pray that happens.

15 comments:

  1. He is Emmanuel "God with us", Prince of Peace. Remember to look up, this is God's story and He won't give you anything more than you can handle. There is a reason He's taking you back to Edmonton. Just trust Him. Breathe and lean into Him and let Him. Rom 8:28 Praying for you all.

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  2. I will keep praying and praying and praying. Your words that you pour out from your heart give us direction to pray and God leads us to pray. Know that you are loved, thought about, in our hearts, and being upheld in prayer. I am sending you my love and if I lived close I would hold you in my arms and hug you tight.

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  3. I prayed tonight, as I have on other occasions, that Hope would hear the voice of Jesus and obey Him. That if He is calling her home, that she would be content to follow, knowing that all pain will end and she will have only joy and peace. But that if He is asking her to be strong and to stay with us, that she would stay and fight. That in all of this, she would know in her spirit that God is good and that He is working this, as He works all things, for the good of those who love Him. And that the Lord would send angels to minister to her.

    But I have also come before the throne boldly to ask for her healing because I have complete faith that He can do it. And I will continue to!

    I have prayed for you and Shawn also, that your hearts would not be troubled and that you would not be afraid. I pray that the peace of God would heal your own hearts and guard your minds in Christ Jesus.

    Rest.

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  4. We have been praying for you all! Your journey is long, but your faith is awesome, and uplifting! We pray God will allow a miracle in Hopes life... That would be the best Christmas gift ever. Keep on keeping on..... You can make it through! Just keep reaching out and looking up.

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  5. Amy, there is another family who we are praying for staying at RMH she is also trying to hold it together but i have her room # and number if you two want to pray together, her little mans name is austin and he was admitted the weekend you left edmonton last time. thankyoulord4thiscake@gmail.com and i will send you the info! thinking of you guys!

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  6. I have no idea what sorts of formulas they have Hope on, but are they dairy free? I know that my daughter became milk intolerant when she was about 6 months old and she had really bad diarrhea from it. Whatever the case for you, I hope it gets resolved soon!

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  7. Sigh... We are praying for you all. Praying for new insight and revelation for thd doctors on all fronts. Praying for sustenance for you mentally, emotionally and spiritually as u stay in thd hospital with hope. Continuing to pray for miracles, breakthrough and for all of you to be at home as a family soon. with love snd prayers, and wishing there was more we could do, Annie and family in toronto

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  8. We've been following your story for a while and have been encouraged by it. Our son John has pulmonary hypertension and was flown from Calgary to Edmonton yesterday. If you would like to meet, send us an email to blairandelaine@shaw.ca

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  9. Dear Amy,

    December 25th is just a date on the calendar. The moments that we have together, the moments of smiles, of laughter, of tears, of joy, of hope...that's Christmas. This is the first Christmas season that I've felt so convicted to give. Not tangible/material items, but gifts of time, of love, laughter - true memories. And a lot of that awareness I have you, Shawn, Sadie, and Hope to thank for.

    I've been following your blog since the beginning. I'm friends with your sister and found out that we (you & I) were both pregnant at the same time. So when Linds would post things about you guys, or a link to your blog, I would read it. I'd find myself reading it at all hours, whenever I was up by myself at night, nursing at 3am, etc., I'd find myself (and still do)crying and praying for Hope and you. I don't think I've prayed this much, and in turn, have grown closer to God because of it.

    Your passion for God, for your family, for Hope - is so inspiring. I hope to be a mom like you some day...selfless, driven to provide the best life for my family.

    Praying that God fills you with strength, patience, wisdom, and that you get good sleep!

    Love & prayers from Ontario

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  10. My Prayers are with you, and sending some strength to keep you and yours, to help you see this through. Dominique's mom from Kamloops

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  11. hang in there Amy you are doing an amazing thing for your little girl. may we have a Christmas miracle this year.

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  12. Have they tried Elecare formula? Several of my babies at work have done better on that formula. Praying for you and for Hope!

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  13. My Daughter who has a CHD had problems keeping her feed down (she is on a g-tube)...we found that switching her to Soya formula helped as well as adding 5ml of Pedialite to the formula would help her keep the feed down. As soon as you took the pedialite below 5ml she would start throwing up again its like she NEEDED that little bit of pedialite to not throw up...maybe this will help with Hope???

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