Ups and Downs

This past week has been full of ups and downs……..eating down, bilirubin up, and the one thing we’re happy that went up was her weight thankfully. Nora had a record high amount of calories last week and this week she had a record low amount of calories. Our little monkey starting teething and she has been very fussy and not wanting to eat since last Friday. Finally today she is getting some relief and starting to eat better. Since she’s been eating so little the past few days we went back to 24 hours on TPN. :( With her decrease in eating I was worried that she may have lost some weight but we were very pleased to learn today that she gained 6oz since last week and now weighs 12lbs 14oz. That’s our Super Nora!

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Nora’s bilirubin went up to 6.2 this week from 5.5 last week. It’s never fun to see a bump up but we know fluctuation in her numbers is expected and we are still very pleased with her progress on the Omegaven.

Nora had her first developmental assessment yesterday at Children’s Medical Services. It is a service provided by the state for children who have been in the hospital for long periods of time and/or who have medical issues to make sure they are on the right developmental track. The physical therapists were very impressed with Nora’s development and one made the comment that she would have thought Nora was older according to her behavior and attentiveness. We thought that Nora was on track for her age according to the baby books but it was very nice to get that confirmed by the professionals. The only thing we need to work on with her is tummy time. We’ve been limiting her tummy time because after a few minutes on her tummy her g-tube button seems to bother her and leaks. But we learned that tummy time serves a very important purpose to developing fine motor skills down the road. Since her port and button are an issue to tummy time they suggested mixing it up with time on alternating sides reaching out for objects. If any of you other short bowel parents who’s children have made the transition to crawling with tubes please let us know any tricks you may have, thanks!


4 Responses to “Ups and Downs”

  1. Brenda Remke R.N, Says:

    I love Normal Norman. Her best friend!! What a cute picture!! You might want to make sure you have Normal Norman II just in case-ya know. So happy for all the good reports. You can try using a Boppy Pillow with her arms and chest up on it so the pressure is off of her g-tube button. Have a great day!

  2. Aunt Jenn Says:

    Wow, you sure can’t tell her biliruben level is up a bit from the photo of Super Nora – her color looks amazing and the whites of her eyes are looking so much whiter! woo hoo!
    The suggestion of using a boppy to prop Nora up is a good idea! Maybe using a rolled up towel or blanket under her chest and another under her hips would allow her arms and legs to move around on the ground while allowing her button to float…maybe?!?

  3. Ashley Fulford, RN Says:

    Hey there. She never fails to make me smile! You all just warm my heart! These pictures are too sweet. I was trying to think of ideas for “alternative tummy time” as well and was wondering how much you put her in the tub or submerge her in water? If you do submerge her at all maybe one of you could hold her in your arms on her tummy and let her kick and move about…bubbles are always fun and may keep her distracted. I know that ports and buttons can be in water, but not sure if she would have any contraindications. Just an idea. Have you tried padding it at all with gauze and an ACE bandage wrapped around her? Will be looking for future updates as always. Until then, give her lots of lovin’ for me. Take care!

  4. Emily Brown Says:

    What a sweetie! She is so beautiful. That is great about her weight! My first little boy had therapy for torticollis & tummy time was really emphasized too. The therapist had us lay him across our lap on his tummy. Same principle but you can place her where the port & button don’t have pressure on them.

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