Archive for the 'Nora Medical Updates' Category

Many New Firsts for Nora

October 6th, 2008


Sorry for the lack of Nora updates lately, my computer crashed but now I’m back up and there is a lot of Nora news to catch up on. Nora has been a busy little girl the past few weeks and she has had a lot of fun and exciting new experiences! In attempt to not to make a mile long post I’ll write this in a little recap format.

First Tea Party!

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Time for tea! Nora made an excellent tea party hostess for her first tea party with pouring sound effects and all. :)

First trip to the Bookstore!

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Nora loves books, taking her to the bookstore for the first time was a very exciting event. When we first walked in the door she squealed with delight upon seeing sooo many books in one place! She didn’t care what section we were in, she was in book heaven just to be there. Nora’s first trip to the bookstore was a big milestone in public outings. We have been taking Nora more places recently now that she’s older (but not too many) but still being germaphobic with obsessive hand wiping and always going on off times when there is less of a chance to be around a lot of people. Keeping Nora protected from the germs of public places has been hard at times and honestly sometimes saddening to not be able to share her with more of the world but it is a necessity to keep her healthy and out of the hospital. But with that said, not taking outings for granted sure makes these times so much sweeter and a cause for celebration.

First New Potato!

Nora has been trying a lot of new foods lately and tolerating most of them very well, the most exciting of all of the foods has been new potatoes. Not because of it being a new potato specifically but because it was the first food that we ate together as a family. Nora ate hers unseasoned of course but with the growing variety of foods she can eat comes the realization that we’re getting closer to sharing the same meals instead of Nora having to eat something totally different than us. Which this is a very happy feeling since in the beginning she wasn’t ever expected to be able to tolerate oral feedings. Nora only had a total of 4.5cm of small intestine left after having 95% of it removed when she was only 4 hours old because of a midgut volvulus which occurred in all three sections of her small intestine.

First Shands appointment in the Tallahassee Clinic

Nora sees the GI doctors at Shands every 2-3 months and we have always had to take her to the main facility in Gainesville which is 2 hours away. With Nora not being a good traveler these trips are usually hard on her since we go down and back on the same day to avoid taking her to a hotel. There are no pediactric GI doctors in Tallahassee so once a month one of the doctors from Shands comes up to the Digestive Disease Clinic to see patients. Since Nora has been doing so well they finally agreed to let her be seen in the clinic where the appointments aren’t as long and in depth. The doctor was very impressed with Nora’s growth and she got an A+ checkup.

First Butterfly Dance!


Nora has been watching little girls dance dressed up as butterflies on one of her DVD’s. When I asked her if she wanted to be a butterfly she excitedly said “yes!” I had been thinking to dress her as a duck for Halloween since it is her favorite animal but every time I asked her if she wanted to dress up like a duck she never seemed interested so a butterfly it is! I bought her wings a little early thinking it may take some time for her to get used to wearing them but our little caterpillar was ready for flight and wanted to dance with them on right away. Here is a little video of her first flight.

Nora’s Butterfly Dance (click to view)

First Night in Nora’s Big Girl Bed


Nora had been sleeping in a smaller version of a toddler crib but all of a sudden last week she seemed to be exploding out of it and couldn’t even roll over comfortably. She has been sleeping in our room with her bed right beside ours since the day we brought her home. We haven’t moved her to her own room yet because she’s a very active sleeper and often gets tangled up in her lines as well as waking up frequently during the night. So we moved her bigger toddler bed from her room into ours last week and the new bed has been a hit. With our small bedroom and a bigger bed for Nora it was too crowded to have her bed beside ours so she’s now at the foot of our bed. So Nora and I both had a first last week, a first for her in a bigger bed and a first for her mommy not having her at an arms length away, we both did better than expected. :)



September 16th, 2008

Nora weighed in at an all time high of 18lbs 4oz this morning! When she went off TPN back in April she was 17lbs 11oz, then lost about 3lbs during the two months she was off and she’s been working hard to get her weight back up ever since. She’s meeting the weight goals set by her GI docs to get her back in a healthy spot on the growth chart for her age. Our petite little princess is growing like a little weed from head to toe. She was in the same shoe size for the longest time and has now jumped right over a size 4 and is up to a 5. Good news for a girl who loves shoes!

Nora seems to have lost interest in potty training for the moment (and will race off the potty to go in her diaper) but she has fallen head over heals with Elmo from watching her Elmo’s Potty Time DVD. She’s a very good caretaker to Elmo, giving him lots of sweet hugs and even making sure he gets his teeth brushed….

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and takes his medicine. :)
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Yesterday’s port needle change was an exceptionally good day for two reasons, #1 Nora got to keep all of her pretty red blood because since she’s doing so well we only have to do labs every two weeks now instead of every week and #2 Nora’s wonderful nurse Virginia was back from a well deserved vacation. Since she was out of town last Monday a new nurse was sent to draw Nora’s labs. We had already planned to change Nora’s needle ourselves because we made the decision long ago to not let anyone access Nora’s port besides us or Virginia to lesson the chance of a line infection. We got this idea from Ellie Brogan’s parents who thankfully wrote about it on their blog and we thought it was very smart and decided to do the same, Thank You Brogans! Nora has only had one line infection since she was born and we think limiting who access her port has played a big part in her success. Sticking to this plan yesterday saved us a heart attack at the very least and saved Nora from what would have obviously been a very sloppy needle and dressing change. This was apparent just from having the nurse assist with the supplies and pulling the blood draw (that’s the only part that is required for the nurse to do, but is done after the new needle is in and the port is dressed). She pulled out an UNWRAPPED tegaderm from her bag and gave it to me with out batting an eye expecting me to put it over Nora’s port. Not only was it out of the wrapping but had obviously been out of the wrapping for a while and the backing to the adhesive looked dingy, not that we would have used it either way. Tegaderm comes in a sterile packaging… comes in a sterile package for a VERY important reason, as do all of the supplies used to cover a central line going straight into the bloodstream. Then she took the end cap that goes at the end of Nora’s port line out of the sterile packaging and palmed it in an ungloved hand planning on attaching it to Nora’s line after drawing the blood. Neither of these unsterile supplies were used on Nora. She was a very nice nurse but was far from clean enough for our comfort. Thankfully we are so very fortunate to have such a wonderful nurse like Virginia who loves Nora and gives us such peace of mind. Not only is she Nora’s nurse but we consider her part of our family.

I’ll wrap up this post with some pictures from Labor Day at Nora’s great grandmother Mama Tom’s house. Nora had such a fun time playing with her cousin Olivia. They picked a rose out in the yard and sniffed it until it was falling apart.

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Big Girl Nora

August 30th, 2008


Nora has been doing very well for the past few weeks. She’s growing up into such a big girl so fast, mentally and physically. She keeps us on our toes running after her all around the house and is constantly amazing us with her growing vocabulary. She’s gained almost a pound in the last month and her labs have been reflecting a very happy body.

Nora is picking up new words all the time and has started saying three word sentences. She says “I did it!” and “In a minute.” I never realized how much I say “in a minute” until she started saying it. The newest word she is saying is octopus which she very cutely pronounces “acapuss”.

Nora is certainly a girly girl. She loves shoes and hats, and pretty much anything that can be put on her head and called a hat. :) Here is a little video of her pretending that the top to her toy cookie jar is a hat.

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Nora loves playing with her dresses and clothes. Here she is donning her fancy dress from New York that was a very sweet gift from a dear friend. It’s still a bit big but darn cute anyways. :)

Nora’s digestion has been on track lately and she has enjoyed trying new things. Since she tolerated the goat’s milk yogurt so well we decided to give her some goat’s milk by adding a tiny bit to her bottles at first. Now she’s able to tolerate enough goat’s milk to enjoy a small bowl of cereal when we mix it with her rice puffs. We’ve also added jarred baby food apples and pears to her diet but only in very small amounts and just once or twice a week (as they do seem to make her stools more loose) but it’s nice to be able to give her a little sweet treat now and then.

We started potty training with Nora a few weeks ago after we realized that not only can she tell us before she has to go but she can also hold it in when she’s not in her comfort zone to make poo. Which with short bowel is very surprising. We don’t want her to hold it in as it ends up whacking out her system and giving her diarrhea but we were amazed to see that she has such control of her bowels. When we first brought out the potty she didn’t want to sit on it and only wanted to bang on the lid like a drum. But she’s been warming up to it over the past week and sitting on it bare bottom for short spurts. Then late last night she she woke up with a loud tummy which usually preceeds a poo so I thought we’d give the potty a try while we waited and she made one tiny drop of poo in the potty! We kept her on it as long as we could by letting her play with the toilet paper roll but then she was ready to get up and finished the job in her diaper. We were very proud of our big girl and had a potty party at 12:45am! :)


Omegaven…….the fish oil that saved our little girl!

August 15th, 2008

Happy Omegaven Anniversary! Nora received her first dose of Omegaven one year ago today. (click here for original post) Omegaven saved Nora’s liver and allowed her to have the best chance possible to grow strong and healthy. I’d say it’s a success!

It’s scary to think where Nora might be without it. Her doctors thought her only chance would be to have a liver and/or short bowel transplant. Nora was 3 1/2 months old when she started on Omegaven, she was very jaundice and her direct bilirubin was 5.5 and total bilirubin was 9.3. After a short spike up to 10.7 (as expected while flushing out the jaundice) Noras’s total bili was down to 1.0 after only 2 1/2 months and down to 0.3 after 3 months where it has stayed since. Nora went from a very sickly yellow/green color to a healthy pink! Here are some before and after pictures. You can see that even the whites of her eyes were yellow.

Before Omegaven, July-August 2007
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After Omegaven, October-November 2007
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……now we’re two pasty pale peas in a pod! :)

Before Nora started Omegaven we weren’t really sure what her natural skin color looked like. Her coloring wasn’t good from the start from being so sick and then she quickly became jaundice. Montana has olive tone in his skin so for a while we thought Nora did too. But once the jaundice was gone turns out she’s as fair skinned as me. Not that it matters who’s skin tone she ended up with it was just very nice to see our babies healthy skin color jaundice free!

We were so fortunate to have gotten approval for Omeagven here in Tallahassee. We were all ready to head up to Boston to join the trial study but thankfully we got approval from the FDA and our insurance company agreed to cover it. It was a struggle to get it here but definitely a battle worth fighting for. We feel certain that having the opportunity for Nora to stay at home surrounded by family and those who her love her made a big impact on her success in getting healthy and strong.

Omegaven is a wonderful gift from nature….fish oil. It has saved many babies lives and the numbers are growing thanks to Dr. Puder! It was created by German doctors and used for it’s anti-inflammatory properties in post-op and cancer patients, then Dr. Puder discovered it’s amazing counter effects to liver damage caused by TPN. It’s crazy that such a natural medication is still not approved by the U.S. FDA. Hopefully Omegaven will be easily attainable by anyone needing it one day very soon.


Hello Ducks!

August 11th, 2008


We took Nora to see her duckie friends at Lake Ella over the weekend. Anyone who knows Nora knows that she absolutely LOVES ducks. It had been way too long since our last trip to the lake. As soon as we told her where we were going she grabbed her pink rubber duckie and was ready to go. Right when we got there she headed straight for the closest group of ducks, waving at them and laughing it up.

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She would have followed them right into the water had Montana not been holding her hand.


Wouldn’t you want to cuddle with these cute little baby chicks too? :)

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She had only been walking for a few weeks the last time we took her but this time she was running all around chasing after them full speed ahead!


Here are a couple little video clips of Nora with the ducks.

Nora was a very happy girl this weekend and was feeling much better after having an upset tummy for the last two weeks. Her nice thick poopies turned to frequent liquid stools after she got car sick on the ride down to Shands GI in Gainesville. Even though it’s only a 3 hour trip each way Nora’s system is so sensitive it always seems to get out of whack when she goes to these appointments every 2-3 months. The car rides to see the GI docs seems to do her more harm than good but we have to take her on a regular basis because they manage her TPN. The GI docs come to Tallahassee once a month for a digestive disease clinic, they have continued to want her to come down there because apparently they rush you in and out at the clinic and you only get a few minutes of face to face time with the doctor. But with her getting bigger and doing so well they said they’d be comfortable with her going to the clinic soon, hopefully that will take effect at the next appointment.

Since Nora has not gained all of her weight back from going off TPN in April they increased her TPN calories and volume (from 240mls to 320mls) and would like to see her up to 18-19 lbs within a few months. Her current weight is 16lbs 8oz and she was around 17 1/2 lbs when she went off TPN. Even though she is small for her age she is well proportioned and has good muscle mass and has gained her fat reserve back. She’s just our petite little princess. :)


A Swinging Good Time!

July 27th, 2008

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The last two weeks have been full of good times. Nora got a swing set last week and has been loving her daily morning swings before it gets too hot outside.

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july-27-2008-005.jpg Peek-a-boo!

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And yes that is a fallen tree you see in the background. It fell a few months ago during a storm and we haven’t gotten a chainsaw yet to cut it up and haul it off. But it makes a nice bench for now. :)

We’ve been house sitting for a friend and Nora now has a new best buddy, Mr. Gray the cat. She looks forward to our daily visits to go feed him and gets quite excited that he lets her pet him while he’s eating. When we say his name she immediately starts meowing and heading towards the door. Here she is signing the word “eat” in case you weren’t sure what he was doing. :)

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There have been a couple of little bumps in the road amidst all the fun but thankfully they have been minor. Nora’s liver enzymes (AST & ALT) were elevated quite a bit last week so she went back on Actigall. She had been on Actigall up until she went off TPN in April and it had always kept her liver enzymes under control so we are hoping to see an improvement in next weeks labs.

Nora had a rough week of teething last week so we all didn’t get much sleep since they bother her the most at night. But thankfully the high PH output that always seems to come along with her teething only lasted a few days, but it still caused her to lose a little bit of weight. It is so strong it burns her little tushy on contact. Nora has never been prone to diaper rash but even though we were changing her right away she got a bad diaper rash. As a result of it she learned a new word, “itch”.

On the subject of Nora’s output her poo has made a tremendous improvement over the last week. Her poops started thickening quite a bit last week and took on a very pungent odor even though we hadn’t made any significant changes in her diet. (Sorry to get poo graphic so if you don’t like reading about it I’d suggest to skip to the next paragraph.) They never smelled great to start with but oh my god, the thicker they got the stinkier they got! I have handled a many yucky poos since Nora has been born without batting an eye but this was almost too much for the “poop inspector” to handle as Montana has so lovingly nicknamed me. Since the consistency is so good we think that it’s just her system changing and developing along with a more varied diet but we did a stool culture just to make sure the new odor isn’t from overgrowth and should get the results early next week. In conclusion to the new poo story, we started giving Nora goat’s milk yogurt a few days ago and since then her poo went from great to beyond believable fantastic. I opened her diaper yesterday to find a well formed piece of poo! Not a blob of mush or a puddle of liquid but actual individual pieces of stool! I know I have said this before but never in my life did I ever think that #1) I would ever talk so much about poo and #2) would ever get so excited about it. It’s crazy how a such vile substance can make your day when you are a parent to a child with short bowel syndrome.

Now back to non-poo Nora stuff………

Nora has been on TPN for 12hrs during the night and off during the day for the past two weeks and has been doing great with it. She’s still a very good girl with her lines when she’s on but she certainly knows when it’s time to come off and is happy to have the day to run around line free. The coiled IV tubing came in and has made when she’s hooked up so much easier to handle, especially during the night. She hardly ever gets tangled in the line anymore. I would highly recommend it to anyone on IV’s.

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Blowing bubbles with NeeNee is lots of fun!

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So is playing with the maracas at Grammy and Pappy’s house!


Wow-wee I’m cute!


and oh-so sweet……….

We’ve added a few new videos of Nora if you would like to see little missy in action. They’re in the Nora Videos section from the Blog Categories menu.


She’s Back!

July 14th, 2008


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!)


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


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. :)


May I have this dance baby?


Baby gets a good check up from Dr. Nora!


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