Big Girl Nora


August 30th, 2008

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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.

http://www.youtube.com/watch?v=EUKuZMU0t1o

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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! :)

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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.

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Hello Ducks!


August 11th, 2008

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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.

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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!

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

http://www.youtube.com/watch?v=ELL_eNNvCtQ

http://www.youtube.com/watch?v=Exblj_8CTho

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. :)

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A Swinging Good Time!


July 27th, 2008

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WEEEEEEEEEEEEE!!

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!

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Wow-wee I’m cute!

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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.

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She’s Back!


July 14th, 2008

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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!

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The Return of Super Nora!


July 2nd, 2008

What a difference a week makes! Nora has responded extremely well to being back on TPN, she is obviously feeling much better and like herself again. In just one week she has made a tremendous turn around with her weight and energy on only 10ml/hr (she was on 20ml/hr before weaning off TPN) and her labs this week showed a big improvement. For the first two days Nora was back on TPN she slept a LOT more than usual. We felt (as well has her doctor did) that her body was just finally catching up on much needed rest now that it wasn’t having to fight for nutrition. But we were starting to get quite concerned on the second evening when she fell asleep at 6pm after taking three naps during the day. We kept thinking isn’t TPN supposed to have the opposite effect? Thankfully she awoke bright eyed and bushy tailed last Wednesday morning and hasn’t slowed down since. She is certainly keeping us on our toes chasing after her with the portable IV pump and bag. She still has a while to go before she can carry the pump in her backpack so hopefully the coiled IV tubing will be in soon. Thanks to some other SBS parents we learned of an IV line extension which expands like a telephone cord. This should give her a lot more wiggle room from having to stay so close to the pump and allow for the line to give if it is pulled.

Nora has adjusted to being back on IV’s better than expected. With having two months of freedom under her belt from tape dressings and lines we weren’t sure what to expect. She has grown up so much in these past two months. She is no longer a baby but a little girl who makes her baby dolls dance, has meow talks with the kitty cats and has pretend tea parties. Besides protesting to being tied to the IV pole in the mornings while waiting for her Omegaven to finish she has been a very good girl about not messing with her lines and port.

Here are some long overdue pictures from the past few weeks.

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june-19-2008-001.jpg Nora loves her books.

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She knows a good thing when she sees it!

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Why did that cat run away? I only pulled his tail…. :)

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She’s ready for her piano lessons Pappy! (a.k.a. Grandaddy-o)

If some of you are wondering why Nora’s neck vein is so pronounced in the last picture, that is where her IV port catheter is implanted.

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TPN and Omegaven Again


June 23rd, 2008

Well we made it eight weeks to the day TPN and Omegaven free but we lost the battle with SBS…..this time.

Nora has been up and down so much the past 3 weeks and we think it finally caught up to her at the end of last week. On Thursday she became extremely lethargic and it got a bit scary. She seemed very, very sick so we requested for labs to be drawn and her lab numbers had went to crap showing that she was deficient in some nutrients and a low blood carbon dioxide level. So we made plans to hook her up to TPN the next day but as she usually does she made a night and day turn around Friday morning as soon as she heard the word TPN. After talking with her doctors we decided to wait it out over the weekend to give her one last chance to pull through on her own. Today she seems to be feeling much better (still waiting on today’s labs) but she lost all of the weight she had gained back from the past few weeks so we felt at this point we had no choice to but put her back on TPN to get her weight back up and give her some reserves. We are hoping this will be very short term and we can have her back off and line free in a month or less. We have learned a lot about how Nora processes food since she’s been off TPN and feel better prepared to take on the challenge of her nutrition the next time around.

So far today though Nora has done great with her IV’s and is being a very good girl (as usual) so we are hoping this will just be a smooth process and Nora will grow quickly. We have had a lot of IV anxiety because Nora is now a walking toddler whereas when she came off TPN two months ago she wasn’t yet walking. She had just gotten an IV backpack before we discontinued TPN last time so hopefully she will build her strength quickly and be able to wear it during the day. The backpack will be a lot safer and give her the independence to walk around without one of us having to follow her around with the pump.

As much as we hate that Nora has to rely on IV’s for her nutrition we are very thankful to have an alternative way to keep her healthy. We have a love/hate relationship with TPN, even with all of it’s horrible side effects it is what kept her alive at the beginning. And we are so thankful to have found Omegaven so we don’t have to worry about liver damage from the TPN. So for now we are watering our little Nora flower and will watch her grow.

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