Sunday 17 March 2013

Stop and Go

This afternoon I got the dreaded phone call from Shawn.  "They are stopping Hope's feeds", he said.  Hope had some blood in her poop and it was decided to stop her feeds.  Shawn left the hospital later in the afternoon and his parents took over for a few hours.  While in the car we received a call from the GI doctor at the hospital.  She kindly wanted to call and talk to me because she felt I would be discouraged by the stop of Hope's feeds.  She was on call this weekend, but had come in to take a look at Hope and her poop.  She carefully examined Hope's poop, a dream job I'm sure, and felt the blood was not from inside.

Shawn and I used to watch The Office and always quoted Michael Scott.  In one episode they were discussing their medical benefits and one character says, "Somebody has anal fissures."  Well, Hope is that somebody.  She has anal fissures and this is where the blood is believed to be coming from.  If the bleeding persists, they may put a scope up her bum to look and see if she has an allergy to cow's milk.  This is also a possibility, but would be much more difficult to control on donor breast milk.  If they do feel that she is allergic to milk, she'll be moved to a broken down formula.  In the meantime, they have decided to restart Hope's feeds and see how she does.  A potential setback has been avoided for the time being.

Please join us in praying that Hope's fissures would heal.  I'm sure she'll be angry at me for sharing such personal details of her life, if she lives long enough to be angry about it, I'll be willing to accept her anger!  Please pray that the bleeding would stop and that she does not need to be probed.  If she does, pray that she is not allergic to milk.  If she is, please pray that she tolerates the formula she'd need to be put on.  I think that covers everything!

Hope is still looking really well, she is very happy and continues to improve in her development.  She is battling a terrible diaper rash once again though.  We try every fancy diaper rash secret that we have, but with Hope it seems that we just have to wait it out.  Please pray that her skin does not break down and that it heals quickly so she's not so uncomfortable.  Today they've been opening her diaper and blowing oxygen on her bum.  I've never tried it, but it appears that Hope enjoys it.

We kept Sadie away from the hospital today, but are hoping she'll be able to see her sister on Wednesday as she's been asking to go to the hospital all day.  This is the first time in a long time that I have not set foot in the hospital.  It's been great to spend the day with Sadie and I know Hope has been in good hands.  It's also the cleanest our home has been in a long time, it's amazing what you can accomplish when you're actually home!  

7 comments:

  1. Two of my four kids had horrible diaper rashes as small infants...so bad their little bums bled. My doctor's advice was similar to the oxygen idea...use a blow dryer on the lowest setting. Truly, it was the only thing that worked, and it worked wonders! Praying!

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  2. My son was born at 27 weeks last April, and is now the 11 months old. He had blood in his poop and is allergic to cow's milk protein - I have been dairy free and pumping - tall order! We think of you and Hope often, stay strong little princess :) Sending good karma your way!

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  3. I am quite sure you have heard and tried nearly every remedy for diaper rash... but just in case... we have used corn starch for our daughter whose rashes would erupt into open blisters and sores if not carefully treated. Just shake some on (like baby powder) and it seems to create a barrier as well as heal the rash that's already there. I hope this tip might at least make Hope a bit more comfortable.

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  4. Re the fissures, and possibly even for the diaper rash, Vitamin E oil is very healing, and is quite viscous so it creates a barrier. It may be worth trying. (Just pin-prick or snip a bit off a capsule to get the oil.)
    Hugs from a Grandma with some experience. :)

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  5. Hello Amy,

    My son battled a terrible bout of diaper rash and I have found an amazing all natural cream that works wonders on any type of skin condition. It's not cheap, but it lasts a long time and I think it's worth every penny!!

    http://www.oliviersoaps.com/olivier/p-11-baby-cream.aspx

    You, Shawn, Sadie and Hope are always in my prayers. You are an amazing family!!!
    God Bless!

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  6. You cracked me up with your quote! I love that you still have a sense of humor through your life's journey.

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  7. I wonder....Do you think dairy free donor milk would be beneficial? I have met quite a few people whose babies bad a milk protein allergy and tried almost every formula and the babies ended up with a whole host of other issues. I have a son with HLHS and we use donor milk as well so I'm connected with quite a few Mommies and have a friend that is dairy free and willing to donate to you. :)

    If so, feel free to e-mail me at baby.cakes.82.af@gmail.com :)

    Best wishes,
    Ashley

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