Archive for January, 2008

Bye Bye Button!


January 30th, 2008

Nora had her g-tube button removed a week ago yesterday. Wow, I never thought we’d be saying that before her first birthday or any birthday for that matter. She is doing great and the hole in her tummy is healing amazingly well. The actual removal of the button wasn’t very fun for sweet Nora (because she had a Bard button that is kind of like an anchor instead of a catheter) but she was sore for only about a day and a half and her tummy is obviously feeling better than ever. She has never slept on her tummy but the past two mornings we’ve awoken to find her snoozing away on her tum-tum. It’s still crazy to me that they just pull the button out and don’t put any stitches or anything to close the hole going from her skin straight into her stomach. Apparently the stomach heals very quickly and only 15% of people have to go back for a procedure to close it if it hasn’t closed by itself after 6-8 weeks. The hole is still leaking a bit but the leakage is minimal and we’ve only had to keep a bandaid on it the past few days instead of gauze.

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Nora had quite a time playing with the table paper and checking out the digestive system charts in Dr. Crooms office while we were waiting for him to come in and take out her button.

We are very excited about Nora’s progress with oral feedings and weight gain! Her little intestine must be growing, adapting, or both because something amazing certainly has happened for her to be able to process so much orally. She’s eating 106ml bottles of her Elecare formula about every 2 hours and eating her solids twice a day, which we will be moving up to 3 times a day starting today. She’s still loving her squash and rice. She’s had butternut and delicata squash, and sweet white rice and short grain brown rice. I’ve been a little hesitant to move on to the next veggie, sweet potato, just because of the gas factor. But we’re going to go for it today!

The solids have definitely made a noticeable difference in her weight, last week she was up to 15lb 7oz (a 8 oz gain from the previous week) and this week she’s an even 16lbs! So now the next step is to start tapering down her TPN. Her doc has given to green light to lower her rate per hour, she’s currently at 20ml/hr and we’ll drop 2ml at a time every few days as long as her blood sugar stays good. And then once she’s down to around 10ml/hr we’ll start dropping hours, yay! Hopefully by her one year b-day she’ll have a good amount of free time during the day off the IV’s.

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Our cute little lioness…..these were taken the day before Nora had her button taken out. As you can see in the second one she had to play with it one last time and give me the look that says “Oh this is what you don’t want me to play with? Are you sure you don’t want me to open it for you?”

:)

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Nora loves her squash!


January 16th, 2008

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Nora ate her first vegetable 10 days ago, butternut squash – yummy!! She has handled it very well and it seems to be doing her system good. We bake it and then blend it with her rice porridge and she loves it. We had been debating what Nora’s next food should be after the rice for a while. We got a lot of different opinions and were crossing our fingers that the new food would agree with her short bowel. By the looks of her poopies she is digesting it wonderfully. The extra solids have been great for Nora’s weight, she’s at an all time high of 14lbs 15oz as of Monday’s weigh in!

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Nora had a great visit with with Dr. Crooms on Tuesday, the surgeon who performed both of Nora’s surgeries and whom we will forever be thankful to for saving our precious little sweetheart. I can’t help but mention what a wonderful man Dr. Crooms is every time I talk about him. His surgical skills are amazing but his heart is even more so. He told us that he keeps a picture of Nora and him that we took on his mantel and looks at it everyday to remind himself that miracles do happen. We met with him to discuss removing Nora’s g-tube button since she has been eating solely by mouth since mid July. We have always been told by every doctor we’ve met with that if she didn’t need to use it by 6 months to 1 year of age than it would be safe to take it out. Nora is 10 days shy of her 9 month birthday and we’re feeling that the pros outweigh the cons of taking it out at this point. Of course there is always that big IF she ever did get very sick and need it again than that would mean another surgery. At this point the button is being used as an exit for her food rather than entry, by accident of course. It opens very easily and Nora’s little fingers are quick to open it and before you know it a bottles worth of formula will leak out. So with Dr. Crooms advice to take it out that made us feel comfortable with making the decision to do so and will take her back next week to have it removed.

On a last note, Nora has learned to wave hi and bye, clap and give high 5’s in the past week. We have been working on waving for a little while and once she got it clapping and high 5ing came soon after. Now she is an expert clapper and claps when she sees or hears about something or someone she likes. Especially when she sees her favorite kitty outside. But not just any kitty, she is very particular and only claps when she sees her favorite one out of the three outside kitties we have. She’s also been saying Dada a lot, sometimes entire conversations of Dada! All of a sudden our little baby is turning into a little girl and picking up new skills by the day.

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Practicing her waving in the carseat mirror on the way home from Dr. Crooms.

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She also loves to tear it up in her walker, or we call it her car and boy is she speedy!

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Happy New Year!


January 5th, 2008

Happy is indeed the word to start off the new year! Nora ended 2007 far above and beyond how she entered it earlier in the year on April 27. We are so happy with how she has progressed and are feeling very hopeful for her continued improvement in the year ahead.

Nora’s first day in 2007

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Nora’s last day in 2007

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Our shining star!

It brings back a lot of emotions looking at Nora’s first days, sad but also happy to see how far she has come. She continues to amaze us everyday with her strength and happy spirit. She can be quite the silly goose and brings us a lot of laughs with her growing personality.

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Nora’s first tooth finally broke through on her 8 month birthday on 12/27. Or at least that’s the first day she let us get a peek at it. I’ve nicknamed her Percy lately because she’s always holding her little mouth tight lipped rubbing her bottom lip on her new tooth. The rest of the time she’s feeling it with her fingers.

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Teething has not been good for Nora’s appetite. She goes through times of not wanting to eat very much when she’s in the midst of a teething spell. We know this is normal for all babies but for Nora it can be a set back when every ounce counts. Her weight has been fluctuating the past few weeks with her teething. She’s yet to make it above 14lb 10oz. She’s gotten there twice but had lost 8oz on last week’s weigh in. Thankfully her appetite seems to be picking back up this week and we’re expecting a gain when she’s weighed again on Monday. Overall Nora’s feedings are going great. She’s eating 106ml (3.5 oz) bottles of 22 calorie Elecare every 2-3 hours and eating her rice 2 times a day (when she’s not teething too bad). We’re wondering if she’s getting tired of the rice and is ready to expand her diet. We talked to her doctor last week about her diet and plan to start introducing new foods very soon. Homemade organic squash is most likely next on the menu.

Nora’s first Christmas was great. She wasn’t quite sure what to think of me showing how to tear into the gifts but she certainly enjoyed playing with the tissue paper. I’m sure by next Christmas she’ll have the gift opening thing down pat.

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It was such a special time of year to have our precious little Nora to celebrate. She was by far the best gift under the tree. :)

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