3 more days of TPN?!?

Nora has been doing great with weaning off the TPN. She went down to 5ml/hr on Monday after having good labs and a weight gain from the week before. 5ml/hr is a very low dose of TPN and she is still thriving and keeping her weight. Virginia brought the scale by yesterday and she’s holding tight at 17lbs 2oz after being on the lowest rate for five days. Nora’s blood sugar has been very stable so unless this coming Monday’s labs show a surprise Nora will be off TPN completely next week. What a great 1st birthday present that would be with Nora’s big day coming up next Sunday!

It is so very exciting to be a week away from her birthday. I’ve been thinking back on her birth a lot recently and what a world away we are from where we were then. Going up to the NICU at TMH last week to deliver Nora’s b-day invitations brought back many memories of Nora’s beginning. Montana and I knew this day would come even when we were told her chance was less than 1% but we never dreamed our little Super Nora would possibly be off TPN before turning one! Either way, with or without TPN we are certainly looking forward to celebrating the big day. :)

On Thursday Nora had a follow up appointment from the removal of her g-tube button with the wonderful surgeon Dr. Crooms. For those of you not familiar with his name he is the man who saved our little Nora on the day she was born. He has a very special connection to Nora and we will forever hold him close in our hearts. We discussed the plan from Shands to get Nora off TPN by reducing the rate instead of dropping hours. He thought that she was ready to come off it and said that he didn’t think that one way was better over the other when tapering off TPN. We also discussed the amount of small bowel she had left after he removed 95% of it when she was just a few hours old. We knew that he was able to piece together very small amounts of each the absorption parts with a combined total of 4.5cm but we didn’t ever know which parts she had the most of. So now we know that the majority of small bowel she has is the duodenum, she only has a “sliver” of jejunum and a very small amount of ileum. Her small intestine must have grown immensely in the past year or adapted extremely well or both for her to be able to process so much orally. There is no way to know how much her intestine has grown with out opening her up and hopefully that wont ever need to happen again. So we’ll just know that somehow, someway what she has is working and we’ll be very thankful for it.

On the non-medical front Nora is chugging along at great speed. She’s certainly not a little baby anymore and is quickly turning into a big girl. Her personality is blooming by the day and she doesn’t miss a thing. She loves to be outside and especially loves her ducks up at Lake Ella, feeding them bread is extra fun. In the past few days she’s replaced all of the words she knows with “duck”. I thought a visit with them would solve it but she’s still stuck on duck repeat for the moment. :)

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Here they come!

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Hello big soft shell turtle!

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Relaxing on the blanket…….

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3 Responses to “3 more days of TPN?!?”

  1. Jennifer, Davids mom Says:

    Just wanted to congratulate you all and Nora on her upcoming milestone!! It is such a freeing experience to have your baby line-free!! I remember feeling a bit lost at first, not performing my daily ritual of mixing and connecting Davids TPN…I got over it quickly! What a truly fantastic miracle it is. We join you in your celebration!!!! :)

  2. aunt brenda Says:

    We won’t be able to join you for the big day, but you know where our hearts will be :) Nora looks so sweet and HEALTHY! Good job, mom and dad!
    Love & kisses to all

  3. Aunt Jenn Says:

    Nora looks amazingly cute – I think she looks extra beautiful as a line-free girl!!! :)



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