She’s Back!

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Nora is doing great! We couldn’t be happier with the turnaround she’s made after going back on TPN 3 weeks ago. As much as we were hoping Nora could continue growing without TPN it is now very apparent that she needs it to continue to thrive. When she first went back on we thought that it may be more temporary than it now seems. At least she is doing so well on a very low dose of TPN. We are very encouraged for her future with her only needing a low dose for support instead of her body being completely dependent on it.

Since Nora bounced back so quickly she’s down to 18hrs on TPN from 24. She is still getting the same total volume just at a higher rate. She loves her freedom during the 6hrs off the IV line and her blood sugar has been stable during the break. So the plan is to go to 12hrs on and 12hrs off this week as long as her sugar stays stable and she gains weight.

Nora’s diet is still a constant challenge. It seems that as soon as we build up her variety than she stops tolerating foods that she had been doing very well with and we’re back to just a few foods that she can eat. Chicken broth and avocado had been a good source of protein and fat for her that she had done very well with for months but now she’s not tolerating either of them. New foods that we’ve tried that obviously didn’t agree with her right away include sweet potatoes, bananas and egg yolk (a daring one I know but we were trying to find a good source of protein). The newest foods that she seems to tolerate the best are red lentils (which make a complete protein when mixed with rice), green peas and carrots. Rice is still the backbone of her solids that we mix with each meal. We’re also trying a new formula, EO28 Splash by Neocate. It is very similar to Elecare but formulated more for toddlers than infants. It is a premixed liquid that has 30 calories per ounce. She can only tolerate a bottle or two of it a day but it is nice addition to her diet to get in more calories and give her more flavor variety. (Thanks for introducing us to it Cheri!)

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Make sure there’s no more hiding under the plate!

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Then brush-a-brush-a-brush-a!

Nora’s vocabulary is growing everyday. Some words are very clear and others require Nora translation from mommy or daddy but overall she is getting to be a very good communicator. She’s starting to say two word phrases like “uh-oh” and “all gone”. My favorite new word she says is “please” which sounds like “peas” but it’s very hard to resist what she’s asking for when she adds “peas” to the end. :) “Happy” is another new favorite word she’s saying. “Ouch” is one of her new words which makes me a bit sad to hear when we’re taking off tape dressings and such but it’s all part of it right? At least she’s usually tolerant of whatever it is we need to do after we explain why we have to do it. It’s crazy how much she seems to understand for an almost 15 month old.

Nora is very quick to learn new skills, show her something once and she’s pretty much got it. She loves to dance and make all of her baby dolls, stuffed animals, plastic toys (basically anything) to dance all the while shouting “dance, dance!” She loves to pretend to feed her babies bottles, she is very sweet at sharing pretend food and drink with us and her babies and loves to play doctor with her stethoscope. She’s very good at answering yes and no when we ask her questions, especially “no” when she doesn’t want something. She is polite about it but very sternly says “nu-uh” and waves her hands back and forth like an umpire. Nora is quite the silly girl and is getting sillier by the day. She has a very sweet nature and loves to show her affection with hugs and snuggles, unless she doesn’t know you…..then you get the serious eye. :)

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May I have this dance baby?

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Baby gets a good check up from Dr. Nora!

5 Responses to “She’s Back!”

  1. aunt brenda Says:

    What a great report! I haven’t heard many specifics through the family grapevine, so it was really good to read your posting. I love the picture of her with the stethocope! She’s obviously very serious about attending to her doll :) Hope her new schedule makes things easier for your two, also. Being “tube free” for most of the daylight hours has to be great!!
    Hugs and kises to all :) :)

  2. Katrina Says:

    I love this update!!! Nora, you have grown up so much these past few months!!! It makes me sad to read her new word “ouch”. Ryan starts to say no and cry when I come towards him with the chloroprep swab.
    Thanks for sharing Nora’s trials with food and drink for us fellow short gut parents. We are struggling on Pept Jr and they are trying to find something else. Is Cheri on our SBS group?
    Enjoy your summer Nora!!!
    Katrina

  3. Ian Says:

    I had to stop reading at “peas” cuz i got a little misty.

  4. Aunt Jenn Says:

    Nora looks great and less time on TPN sound pretty great too! Can she say ‘Aunt Jenn’ yet?? ;)

  5. Ashley F. RN Says:

    Hey there! Gosh, I got chills and tears looking at these pics and reading all that has been going on with little sunshine (especially that she says “ouch.”). I am so happy that you all are doing well and I just love all these adorable pictures. I am back in the NICU – i missed it too much to stay away! Give Nora some sugar for me!



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