Tuesday 26 March 2013

Fourth Time's a Charm

Change.  This is the theme of our lives with Hope.  Nothing is ever the same for long and something that works for a time, usually stops working.  Hope has tolerated and then not tolerated certain feeds for the last year of her life.  Now that we have tried every type of formula or feeding option, we are going back through and trying a second time.  As Hope gets older and her gut matures, there is a chance that something we previously failed at, will now work perfectly.

I often receive advice from people that are following Hope's journey.  To all of you that I have never responded to, you are not alone.  I get too many emails and do not have the time to respond to each one of them.  I do read each of the messages and blog comments and appreciate people taking the time to share.  I apologize if this has offended anyone.  Many people have suggested that we try removing milk protein from Hope's feeds.  This is not something that made sense before, as Hope was tried on a formula without milk proteins and actually become more intolerant.  As a result, it was ruled out.  For the first 6 months of her life, Hope was consuming my breast milk and a mix of formula.  She tolerated this beautifully and I was consuming a lot of dairy.  Now that we've run out of options, the doctors have decided to revisit this idea.  Yesterday, Hope was started on a formula that is free of all milk proteins.  I have never hoped that someone would have an allergy to milk protein so badly.  We really want this to work.

Today I walked into Hope's room, just minutes after she had spit up.  After spending the night on 1/2 formula and 1/2 pedialyte, I was sad to hear that she had thrown up.  Hope's tummy was distended and I feared that we were failing again.  As the day continued, Hope did not throw up or gag at all.  She appeared to become more content and her belly came down a little, but has a ways to go.  The doctors feel that if there is an allergy, her tummy will remain distended for another few days as her guts heal from the reaction to milk proteins.  There is still hope that this will work and we are moving forward.

At 6 pm this evening she was started on 75% formula and 25% pedialyte.  Tomorrow morning we will begin 100% formula and see how she does.  If she tolerates the formula for 24 hours, we will be sent out of hospital on our first pass.  Seeing as I was crushed so recently, I am choosing to be very guarded about Hope leaving the hospital.  I obviously hope that this will be successful, but am not getting too excited.  This is a formula that we have tried, and failed on 3 times in the past.

I am feeling more stable, as the reality of our failed attempt to get home has set in and I'm back into my routine of spending my days at the hospital.  I know that I need to be careful as I'm still fairly sensitive and don't want to burn out.  If this formula fails, we'll be starting our TPN training on Monday and will have at least another 4 weeks in hospital.  I have decided to take this Wednesday as a day for myself.  Shawn is going to spend the day at the hospital with Hope and I'll be taking a day to rest and treat myself with some Christmas gift certificates that I had yet to use at a spa.  I am praying that a day away from Hope will refresh me and give me the energy I need to finish her hospital stay, however long that will be.

I've been able to start talking to God more and no longer feel the anger I was feeling on the weekend.  I do still feel as though I've been in a heated argument with a friend, and getting back to a place of true comfort in our relationship will take a few more days.  It is a blessing to know that no matter how human I am, God is still the amazing forgiving God that he has always been.

11 comments:

  1. Have you thought of taking artificial colours, flavours, dyes, sugars and preservatives out of her diet. See www.feingold.org . For more info on this food plan. It has helped many people with many different issues and why do we need them in our food anyway. I eat this way and it has helped me a lot and done things I never expected to happen.

    Naomi in Ontario

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    1. I'm proud of you, Amy. I hope you have a wonderful spa day tomorrow!

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  2. Hi Amy, I've been following your blog for quite some time and often keep Hope, you, and your family in my prayers. I'm wondering if maybe you could explain to me why Hope is unable to leave the hospital on donated breastmilk? From my (admittedly incomplete) understanding, it seems like she does really well on breastmilk but there seems to be some reason she can't leave the hospital on donated breastmilk. Am I misunderstanding what is going on, or has she recently become intolerant of breastmilk, too? Or is there some other reason she can't leave the hospital on donated breastmilk?

    The reason I ask is because I believe that any child who may need donated breastmilk should be able to have donated breastmilk, and if there is some (bureaucratic?) reason that she can't have it, I would want to advocate for these rules to be changed. Of course, if there is some other, sensible reason, I'd like to know that, too!

    If you don't have time to respond to this, though, no worries--you have lots of other things to worry about, as we all well know!

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    1. You are misunderstanding, it has nothing to do with it being that the breast milk was donated or not donated. I believe its just Hope seems to sometimes tolerate all different types of feed for a bit and then she stops being able to tolerate the milk and gets really sick. Praying for her to be able to take in milk that she can stay on without getting really sick so she can go home. Hope that helps!

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  3. Hi Amy ... I have been following your story of Hope through the last few months. Today I decided to join as the tears & joy that you share with all is a great gift from God. You have helped myself strenthen my love & understanding of God , his son Jesus Christ Our Lord & Saviour and the Holy Ghost. I pray for Hope and all of you that through all that you have had to deal God will spare you Hope and allow her to join your family at home very soon. I am sure Sadie also is more than ready for her baby sister to come home to play with. All the very best to Shawn & yourself with your future. May God bless your family always & bring solidary peace within you all. Hugs Amy as a mother & grandmother my heart goes out to you for all the strength you have showing over the past. Thank you for giving the rest of the world something understanding on how tough life could really be. As hard as it is through this time you have never giving up God nor the belief that one day soon Hope will be returning home.

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  4. Romans 15:13 - "May the God of hope fill you with all joy and peace as you trust in him..."

    Praying for Hope, and your family daily! Thanks for the regular blog entries when we know you're tired -- it allows us to be specific in our prayers.

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  5. Amy, no one ever deserved a spa day more than you do right now. I pray that you are pampered beyond measure and are able to temporarily put all the stress of your journey aside for the moment. Hope is in good hands today as there is an army of believers holding her (and you!) up in prayer. Not to mention her heavenly Father who knows her exactly, even down to the very number of hairs on her head.

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  6. We continue to hold you up in prayer. Even though the path is hard it's wonderful to know that the Lord is with us every step of the way. In fact He's already at the end waiting. Love to you all.

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  7. Amy, my son was intolerant of everything as an infant. (I nursed him and I ate a diet that consisted only of rice, turkey, pears, squash, and potatoes.) He now has zero food intolerances or allergies. (He outgrew all the intolerances before he was 2.) I just want you to know that it is possible! Praying that as Hope's body grows and matures, she is able to tolerate food more and more, and I will pray for wisdom for the doctors to figure out exactly what she will be able to tolerate. Enjoy your spa day! We've got you and your family covered in prayer!

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  8. Amy,
    My son had to be on a soy based formula from 3 months (it took that long to figure out what was causing his issues) until he was 18 months when the doctor said to switch straight to 2% milk and see how he did. He did just great and ever since hasn't had a food intolerance. Pray for Hope that this formula works this time and that you will get her home with you.

    Enjoy your spa day, you deserve it!!

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  9. I hope and pray the spa day is exactly what you need in order to be refreshed and renewed in spirit and in body! I hope it's a great time for you.

    Know that you (and the entire family) are being lifted up in prayer, even when you can't pray. Keep fighting for your family Amy!!!

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