Archive for August, 2009

Back at home and doing good

August 29th, 2009

Nora’s port replacement didn’t go quite as smoothly as we had all hoped it would but the old one is out, the new one is in, she’s doing good and we’re back home. What Dr. Crooms expected to be a 45min. – 1hr surgery turned into a 3.5hr surgery yesterday morning. There were complications with threading the catheter in Nora’s chest vein but the amazing Dr. Crooms stuck with it and got it in. Since Nora was under for so long and lost a good bit of blood she was kept in the NICU last night and given a blood transfusion. She has three small incisions, one on the right side of her chest where the old port was removed, one on the left side of her chest where the new one was placed and one on the left side of her neck where an incision was made to guide the catheter.

Nora had a rough afternoon after her long surgery. On top of being sore from the procedure her newly placed line clotted off and had to be replaced which entailed taking the dressing off her newly cut skin and stuck with a new needle. We were all holding our breath until a new line was placed hoping that it was just the huber needle line and not her brand new port. (wheew~) Having to put a new port needle in right away was very painful for her so she was given a dose of morphine which ended up making her throw up. But thankfully after that she settled down and was able to get intermittent periods of rest.

Dr. Crooms came in first thing this morning and gave Nora’s discharge orders. We are all happy to be back home and have been resting up today after a long night. Nora definitely had some anxiety last night staying in the hospital but she was a very good girl and we are so proud of her for being so tough. As soon as she heard Dr. Crooms say she could go home she was all smiles and ready go.


If you zoom in on Nora’s face you can see her happy smile behind her balloon with her eyes on the prize, the elevator. :)
(as you can see Nora’s face was still quite a bit swollen this morning from the blood transfusion and all the IV fluids)


Time for a new port

August 27th, 2009

Nora will be having surgery first thing tomorrow morning to have her original IV port removed and a new one placed on the other side of her chest. We knew this day was coming sooner than later but we didn’t expect it to be quite this soon when we took Nora in to see Dr. Crooms this week. The last few times I accessed her port (put in a new needle) it felt “shallow” and Nora’s skin covering her port has been looking thinner and thinner. When Dr. Crooms looked at it he advised that it be replaced rather quickly since the skin had gotten so thin from growing, stretching and frequent needle sticks even though the port itself is still working fine. This is a very common thing that happens with ports and if the skin gets too thin it can actually pop leaving an open wound with and exposed port, which obviously would be a very bad thing.

Nora’s new port should last longer than her first one since she was just a tiny 2 month old baby when the first one was put in. She has done a dramatic amount of growth in the last 2 years and that is a very good thing even though we wish we could avoid her needing surgery. Even though we can’t help but be a bit nervous with our sweet Nora girl going under tomorrow, we realize how very fortunate we are that Nora hasn’t had to have surgery of any kind in over 2 years. And the fact that she will be in Dr. Crooms’ hands brings us a world of comfort. Even though port placements are usually done as inpatient surgery for children Dr. Crooms wants to send Nora home tomorrow afternoon to lesson her chance for infection.

Did I really say that things were medically boring around here just a few weeks ago? Well as soon as those words flowed from my finger tips to the keyboard Nora’s eating took a nose dive. Just like any typical 28 month old toddler, Nora has decided that there are far more interesting things to do besides eat. Even though we love for her to act like any other toddler her age unfortunately she does not have the luxury of this phase. She went from being a wonderful eater to barely taking a bird bite of anything and is not willing to drink as much Elecare. We’ve tried all the tricks to get her to eat more, but Nora stands true to her zodiac sign Taurus and can be very bullheaded when she wants to be. Her weight is dropping, her labs have seen better days and as of this week she’s had a scary amount of ketones in her urine (which can be a sign of malnourishment). So after discussing this with her GI docs we’ll be adding another day of TPN back until Nora decides to start eating better again. So starting next week Nora will go from 3 nights of TPN a week to 4. We wish this wasn’t the case but at the same time we are counting our blessings and know that 4 nights a week still isn’t very much and we are thankful to have TPN to help her through.

I’ll end this post with sharing some pictures of Nora and her new buddy Cynclaire, her second cousin from KY who visited last week. Nora took to her immediately and they had a great time playing and having a tea party. Nora shared some of her favorite snacks, even though arrowroot cookies and rice crackers were a first for Cynclaire she was a good sport to eat them with Nora even though they weren’t as exciting for her. :)

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Our First Family Vacation

August 16th, 2009


We took Nora on her very first non-medical related trip last weekend. It was awesome to finally get to take her out of town and not be going to a doctor. We took her to St. George Island, less than two hours away, close enough to book it back home if we needed to but far enough away to feel like we were on vacation. We were only there for a day and a night but it was perfect. It was a good test trip for Nora and she did great.

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Nora had been telling us for weeks, if not months that she wanted to go to the beach. Pretty much the entire ride down she was telling us that she was going to put her “toes in the ocean”. She quickly changed her mind about that when she saw that the waves had control of the beach but she had lots of fun playing in the sand and collecting shells.

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click here to see a video of Nora at the beach

Hopefully this was just a taste of many more family adventures to come with Nora as she gets older and traveling isn’t so hard on her. There were a few travel related poop issues but overall she did very well and this experience was much better than previous travels.


What’s Nora been up to?

August 7th, 2009

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Thankfully there’s not much to report on the medical front. Nora is doing well and as one of the other SBS moms blogged recently, in our world, boring is a good thing. Nora has been busy being her silly, sweet, smart self….and giving her mom and dad a hard time of acting like a normal, boundary testing two year old at times. But even with this new challenging developmental stage she has entered Nora is still a very good little girl.

Nora has recently mastered singing her ABC’s and can count from 1 to 11. Sometimes she’ll skip a letter or number here or there but for the most part she gets them all and in order. She’s been working on her counting for a while now but she went from not saying her ABC’s at all to saying them from A-Z in less than a week. Here’s a little clip of Nora signing her ABC’s.

Nora has also mastered the art of being a total ham and making funny faces for the camera.
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Nora never ceases to amaze me. After strapping her in her car seat the other day, I cranked up the car but hadn’t put on my seat belt yet and she said “Mommy, where is your seat belt?” Impressed her mommy with her safety smarts that’s for sure!

One thing that Nora has been slow to progress with is potty training. We’ve been working with her for a long time now and she has all the signs that she’s “ready” according to the literature. She knows all about how big girls and boys go to the potty and will sit on it up until the very moment she has to go and then insists on getting off to go in her diaper. If we try to make her stay on the potty she freaks out and gets extremely upset. Nora has been going poo while standing up pretty much ever since she learned how to stand on her own. Besides going against potty training this has been a very good thing since it makes for a much easier clean up than if she pooped sitting down in her diaper. But just like Ruby the duck in one of Nora’s favorite books, Ruby In Her Own Time, she’ll come around when she’s ready.

Nora had her first “social” tea party with our very sweet neighbor Chrys. Nora had a blast and really enjoyed her first taste of chocolate from a nibble of a vegan, gluten-free brownie and thankfully her tummy handled it well.
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Happy girl….. :)


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