Thursday, April 21, 2011

blood, sweat, (pee) and tears

(first: we have great news!!!)
we spent the morning at children's hospital, where ruby took blood tests, a sweat test, urine tests and shed a few tears (what baby likes getting electrodes attached or needles stuck in them?)

it was so deja vu to the first months of m's life when we were going to children's and doctors all the time for ct scans, mri's, renal ultrasounds, etc. it was completely exhausting. we've been waiting to hear back and we just got the news from our doctor that ruby tested negative for cystic fibrosis, which was her huge concern- she showed some of the markers for it, which is why she wanted her tested so quickly. she also tested negative for kidney, thyroid or liver disease/abnormalities.

we are exhausted, emotional and so grateful.

i think being back in a place where we already took so many tests two years ago made this even more intense.

for the next two weeks we have to try and plump our baby up with lots of calories and fat. if she still isn't gaining weight, or continues to lose weight (she currently weighs less than when she was 4 months old,) then we will head in to some specialists to see if there is another issue. ( i should add that the dr. didn't just rush us in for serious tests because ruby was losing weight. i resisted googling cystic fibrosis at the suggestion of our dr. until the results were back, but when i looked up the symptoms yesterday, ruby had symptoms that were spot on for cf, and if you diagnosed just based on symptoms on the internet, she would definitely look like she had cystic fibrosis. now i get why our dr. was so insistent that we get her checked the next morning. good thing i didn't do a little internet research before her results came back, because i would've been even more freaked out.)

thank you for all of your kind emails, texts and comments. they mean so much and i am so grateful for the community of support and friendship we have. thank you.


  1. oh so relieved- now fatten that girl up! :)

  2. love you ruby!!! and sooz and matt and roro!!!

    SOOOO relieved for you

    I heard danelle tried hagen daz for V- seriously

  3. Praise God! Now get that girl some avocados, baby yogurt, and peanut butter.

    As a side note, it might be worth checking your thyroid as well. That was why we had such a hard time getting weight on Henry.

  4. i'm taking a very deep breath for you all right now. and smiling - very big.

  5. What a relief regarding the cystic fibrosis test, liver test results, etc.

    Just as a random question, has Ruby had a gastric emptying scintiscan? Nolan's very severe acid reflux didn't even show up on the scintiscan, and we couldn't figure out why he kept losing weight and wouldn't eat. He has silent reflux and mild delayed gastric emptying - the severe reflux only revealed itself after the "gold standard" pH probe was run.

    I hope she starts to pack on the weight soon - if you need a great calorie additive, we loved DuoCal. It is a flavorless powder that you can add to any (moist) food or drink. It worked wonders for Nolan (in conjunction with anti-reflux meds).

    Still sending lots of prayers in your direction!

  6. so happy for the good news for you... was praying hard today!!!!!!!!!

  7. what a relief! so glad to hear its not CF. I don't know what Ruby's symptoms are besides not gaining weight but my cousin had similar symptoms for CF that turned out to be celiac. just a thought? she sure looks happy and healthy in her pictures :)

  8. had wanted to check in & see what's up with the prinz's tonight & read the last two posts. what a roller coaster you've been on this week. wow. we're sending all our love & any extra peace, strength, sanity or rest we can wrangle up your way.

  9. oh yeah, I forgot to tell you that Mark's mom mentioned checking for Celiac too--since she has it. it took a long time for her doctors to figure out what was up with her...

  10. Tonight, I wondered how you are....haven't seen you in a couple of weeks. Thought I'd treat myself to a few moments of your writing...and read this post. Sooooo sorry you had to go through all of that! Happy, happy to hear the good news at the end of the story. Sending weekend hugs! Enjoy each other.


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