Weaning off TPN


April 13th, 2008

For the last week Nora has been on the lowest TPN rate since she was born. Her rate was dropped to 10ml/hr last Monday (4/7) for 23 hours a day. Nora has been loving her daily hour break and usually uses it to run laps in her play pin like a track star and lunging herself from one end to another hands free. Of course she does this when she’s connected to the TPN as well but is constantly having to stop to get untangled from her line. We’re putting her pump backpack on her when the TPN bag is almost empty and at it’s lightest but that’s only for a short bit everyday. It will be so nice when she can wear her backpack all the time or even better when she wont need to be connected at all!

This next week will be a big one in determining if we can stay on the plan from the Shands Pediatric GI docs to have her off TPN completely in just one more week. As long as she hasn’t lost a significant amount of weight at her weigh in tomorrow, which we aren’t expecting, then her rate will be dropped to 5ml/hr and if she does well at that rate for the next week then she will be taken off TPN completely for a week and then we’ll go from there. Even if she has to go back on it we will make the most of her week break and love every line free minute of it!

Her blood sugar has been doing great at the lower rate and her appetite is definitely increasing so she’s showing some very promising signs. We’ve been working on weaning her off TPN since the beginning of the year but at a much slower pace and with the hope of her being off in months instead of weeks. But when the GI docs saw how great she’s doing with their own eyes and saw her daily intake logs they felt very optimistic about Nora being able to maintain her weight and nutrition by oral feedings. She has been eating so well by mouth that they think she’s getting enough calories from food as long as she’s absorbing them. They gave us a target amount of formula for her to get everyday along with her 3 solid meals a day. They want her to get in 20oz (600ml) of 22 calorie Elecare formula a day which hasn’t been a problem. Some days she eats as much as 30oz a day of her formula.

Which leads us to the subject of foods. Nora is now eating rice porridge, squash, avocado (her new favorite) and organic chicken broth which we mix with her rice, just like a good ol’ southern dish of chicken-n-rice. :) She started on the chicken broth 3 weeks ago and has tolerated it very well. Her local dietitian, Min Tian, recommended we start her on broth before the actual meat to get her system used to the animal protein without the harshness of digesting meat. She was eating oatmeal and Cheerios which she did very well with at first but then her poops started getting very loose. Min thought it was because of the gluten in the oats so we have stopped giving it to her for now and her poops showed an improvement.

We met with the nutritionist at Shands and they were very adamant in wanting her to try meat instead of just the broth so we gave it a try………..very bad idea. But like with all foods and short bowel you never know what will work and wont work until you try. Nora loved the taste of the chicken meat but it gave her very loose stools and then ended up bloating and constipating her very badly. She only had 1 tablespoon of chicken for two days in a row, last Wednesday and Thursday, which both nights she went to bed very fussy and with a gurgly tummy. When she awoke on Friday morning her diaper was bone dry, not even a drop of urine after 12-13 hours. Obviously we were very concerned and our first thought was dehydration from the decrease in TPN. So we called her nurse and requested a blood draw to check her sodium level and gave her some Pedialyte. Thankfully she pee’d after an hour or so after waking up but we were still pretty concerned. I had thought it was strange that she hadn’t pooped since the afternoon before especially after her chicken dinner, eating more formula than usual that night and having a loud tummy. She had a small BM around 11am Friday morning but I knew there was a lot more in there and her tummy was bloating by the hour. Nora usually has 3-5 big poops a day. By 2pm her little tummy was so distended it looked like she had a cantelope under her shirt and she would have little moaning spells from tummy pains (to our best assumption) and she was very tired. Thankfully we already had an appointment set up with her local doctor for Friday afternoon at 4:00 to go over changes and recommendations from Shands. While we were waiting for that appointment I took her to Min, her dietitian and acupuncturist to see if she had any insight as to what could be going on. Min has been keeping track of Nora since she was born but she just had her first acupressure treatment a few weeks ago. Min doesn’t use needles on babies but uses gentle touch and stimulation on pressure points of the body. Babies are Min’s specialty, she describes them as like a “clean slate” who are much easier to start off in the right direction unlike adults who have a lifetime of bad eating habits and toxins built up in their system (me being a guilty party myself). Nora responded very positively to her first treatment when Min put pressure on the points to aid in digestion and stimulate intestinal growth. But when Min touched those same points on Friday they were sore and Nora cried out. Min’s assessment was that the chicken was too hard on her digestion and had backed her up so she gave her a very gentle treatment to get things moving again. She thought that the reason Nora wasn’t peeing was because the bloating from her stomach was putting pressure on her kidneys. While we were in her office we got a call with the results to the mornings blood draw and Nora’s hydration was fine.

So we leave Min’s office and off to Dr. Ness we go. We discussed numerous things with him and he thought overall Nora is doing very well besides the little blip she was having that day. He was in agreeance that the chicken meat was the cause of Nora’s bloating. We went over that mornings labs and the red flag he saw was that her BUN level (blood urea nitrogen) was 30 when the normal range is 5-26 and just earlier that week her BUN was only 9. Urea is the waste product produced from the digestion of protein. He explained how he thought this was from the overload of protein in her system from the chicken, but in more descriptive medical terms which I can’t explain as well as he did.

Not 10 minutes after we got home from being in doctor’s offices for 4 hours Nora’s digestive stimulation treatment must have kicked in and she had a very huge, very loose stool and you could tell that she immediately felt much better. (Thank you Nora for letting us get home first!) She continued to have diarrhea like poops through Saturday and thankfully today her poopies are back to normal and much thicker. We gave Nora’s a system a rest from the chicken broth over the weekend and will start it back tomorrow.

Sorry for the long post and no new pictures but we’ll post some of cutie pie soon. :)

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Unexpected but GREAT News


April 4th, 2008

I am pretty tired so I am going to keep this short but we have some VERY exciting news to share…….

We took Nora to Shands Hospital today for a checkup and they thought she was doing great. They were actually completely stunned by her progress. So much in fact that they suggested we try and see how she does WITHOUT TPN at all!!!! So starting this Monday we will start dropping her TPN rate and hopefully within ONLY TWO WEEKS we will get to disconnect her from the TPN completely and be line free!

Sarah and I can’t even hardly get excited yet as it seems very unreal at the moment since were told from the beginning Nora would most likely need TPN and a Feeding Tube forever. To think Nora has a very good chance of being off of all this crap before her 1st birthday is a dream come true :)

One of us will post the full details soon but I wanted to be sure everyone who follows our little Nora got this great news asap.

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Broken Line


April 1st, 2008

Well I guess the title says it all, Nora’s port line broke Saturday morning. It was a morning just like many others, Nora awoke at 8am, we played close to the IV pole waiting for her Omegaven to run out, ate some breakfast and were snuggling to go down for a morning nap around 9:30 when I felt something wet on her clothes. I first thought her diaper had leaked but then my eyes saw two big red spots on the front of her outfit. I opened her PJ’s to find her port line dripping blood and dangling from her chest……OH CRAP! Thank god this didn’t happen a few minutes later when I would have left her alone to nap. With this happening while Nora was completely still we have to think that there was a weak point in the line and with not much wiggle room with her being on a short leash connected to the Omegaven pole her line must have gotten pulled inside her clothes somehow and snapped. Even though it’s a single line that should not disconnect there are two points in the line that are mended together instead of it being a single continuous piece of tubing. It’s kind of hard to describe the details if you’re not familiar with Nora’s hardware so I’ve attached a picture to help explain.

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This is how the line should be, all ONE piece. The black piece at the top is the needle, you can’t actually see the needle but the black plastic pieces are the anchors to hold the needle in place on the outside of the skin. The Y in the middle is for needle access to the line and then the bottom of the line is where the end cap screws on.

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Here is where it broke, the white end cap is supposed to disconnect but the clear plastic piece it’s attached to is not.

There is a line about 12 inches long that is permanently connected to her IV port needle. At the end of the port needle line is where we put the end cap (the white thing) which then connects to her TPN and Omegaven as well as keeps her line closed when she’s disconnected. Montana and I have noticed that when Nora’s line gets kinked, pulled or twisted (which happens quite frequently with her being extremely active these days) it usually snags at where we’ve always thought was a problem area, and that is exactly where it broke. Even when we secure her line to her with tape that one spot always seems to bend over on itself.

So as soon as I saw that the line had broken I immediately clamped it off and pulled out the needle. Thankfully Nora was calm and still and didn’t make a fuss about me taking off the tape dressing without adhesive remover. We called Nora’s wonderful nurse Virginia and thankfully she was able to come over to put in a new needle. We could have done it ourselves but we were a bit shaken up and were very appreciative of Virginia coming straight over on a Saturday morning, not being on call and before even having her breakfast. THANK YOU VIRGINIA, YOU ARE THE BEST! Everything was all settled and back to normal all before noon arrived but Montana and I both felt like we had already had a full day and were spent. Hopefully this will be the last IV crisis for a while. They say bad things come in threes and this was the third major IV issue in the past three weeks. First was me dislodging her port needle, then the second was dealing with mystery air in the TPN filter for a week straight (which I will explain more about later) and now this. Thankfully her TPN backpack arrived last week so once she is strong enough to wear it all the time we shouldn’t have the issue of her line getting kinked, tangled, wrapped around her ankles and neck, between her toes and anywhere else it finds it way to cause trouble.

Nora tried on her new backpack for size right away, empty of course, and loves it! It’s like she’s been wearing it all her life. She immediately wanted to run circles in her play pin, free stand for long periods of time and hold my hands walking all around the house.

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We’ve set up an appointment with an occupational therapist to assist with her balance and to make sure the weight of the backpack with the pump and TPN bag inside wont be too heavy for her. Unfortunately the first appointment isn’t until April 17. But in the meantime she’s been wearing her empty backpack for spurts of time during the day and we even put it on her with the pump and TPN bag inside just to see if she can hold the weight and she can! Her balance isn’t nearly as good with the weight but it’s a very promising sign that it didn’t knock her right on her tushy and that she can still stand and walk unassisted in her crib with it all on her back.

Obviously with her line breaking a line infection is of great concern. Thankfully the blood was coming out so the chances of contaminates going in are slim but there is always a chance. We’ve been watching her temperature and requested a CBC (a Complete Blood Count) to be included with her weekly labs yesterday to make sure there are no signs of infection. Thankfully the CBC showed a low Neutrophil count which means there are no signs of a bacterial infection but it also showed a high Lymphocyte count which means her immune system seems to be fighting a virus. We were a bit worried last week that she may be fighting a cold because she had a bit of a runny nose but that has now cleared up. So we’ll just continue to keep a close eye on her as usual and hope for the best.

On a happy note, Nora’s weight has been on an upward trend and her TPN rate will be dropped to 14ml/hr tomorrow, yay! More news to smile about is her development. She has now added “dog”, “book”, “pump” as in IV pump and “eat” to her vocabulary as well as using the sign for “eat”. Her two favorite words to say are “cat” and “duck”. When she’s asked where her tummy is she’ll pat her stomach and when she’s asked where her ear is she touches it and will then usually fold it in half like a taco, see picture below. :)

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Nora has also developed her own dance style and will bend her knees and drop her butt to the floor and then back up when you say “Dance Nora Dance!”. When she is asked what a snake says she blows air out from around her tongue and when she’s asked what a piggy says she tries to snort which is pretty much her breathing hard in and out of her nose but it’s pretty darn cute either way if you ask me.

Well I’ll wrap up this post with some happy pictures from Nora’s 11 month birthday which was last Thursday, 3/27. I just can’t believe our little baby will be a year old in just a few weeks. We are so blessed and thankful to be approaching this Nora milestone.

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We celebrated the day in Grammy’s garden with much love and happiness. It was a very special day because not only was it Nora’s 11 month birthday but it was also the very first time that Grammy, Montana’s mom, felt strong enough to not only hold Nora while standing which had only happened one time before but she was able to hold her and walk around. LoraLee (Grammy) has Dystonia which is a very painful neurological disorder that attacks the muscles causing them to spasm and lockup in unnatural positions. It can attack any part of the body and even internal organs. LoraLee had to stop working and driving years ago because of dystonia, a lot of the time she struggles to walk and to do daily activities. LoraLee is an amazing soul and doesn’t deserve this horrible disease but her spirit is very strong and shines through. Just like with Nora we don’t know why we’ve been given these physical challenges but I truly believe that there is a reason for everything even if at this moment in time we can’t see what it is. WE LOVE YOU GRAMMY!

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Grammy is the tiara queen and every birthday isn’t complete without one……even if Nora’s not so sure about it. :)

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A Very Happy Easter


March 26th, 2008

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Nora’s first Easter was a very wonderful and happy day. It was the first holiday she celebrated with family outside of us, her grandparents and Uncle Kia. Thankfully everyone in Quincy was cold free and we were able to let Nora enjoy being around her family, which she absolutely loved.

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Here she is ready for Easter with basket in hand on the way to Aunt Chris’ for lunch. (We waited to put on her Easter dress until we got there just in case……) Thankfully we were lucky the entire time she was in her Easter dress and had no blow outs!

She was a little shy at first checking everyone out but it didn’t take long for her to warm up and shine her loving personality. She even ate her rice porridge at the table with all of us during lunch and thought playing with the napkin ring as a bracelet was pretty funny.

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As you can see by the expression on her Grammy’s face having Nora there was a very special time for all of us. Being able to get her out more and share her love is a true benchmark on how far she’s come. We all knew this day would come even though the doctors were skeptical in the beginning to say the least. But now we have no doubt that we will be celebrating many family holidays in the years to come with Nora right by our side. There are still a lot of family members waiting to meet Nora and we hope to be celebrating with all of them soon too!

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Nora’s first slide ride!

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Practice makes perfect!

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Nora is ready to walk, well more like run…..had I not been holding her hands she would have tried to take off after her cousins whizzing by. She’s been free standing for longer periods of time lately and has even been braving a few steps between mommy and daddy.

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Now for a little snooze on the ride back home to rest up for more Easter cuteness at home in the backyard.

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I let go Daddy!

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HAPPY EASTER!

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An Afternoon with the Ducks


March 10th, 2008

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Nora had a sun filled afternoon at Lake Ella yesterday. She loved watching the ducks and even began saying the word “duck” while we were there. Lake Ella is a public park popular for walkers right up the road from our house which we visit often and will be doing more so now that spring is in the air. Nora loves people watching, she either pointed, waved or said hi to almost every person, dog or duck that was walking around the lake.

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Here’s a little video clip of Nora saying “duck”. It’s not very long but at least I caught her saying it a couple of times before the memory on the card filled up.

http://www.youtube.com/watch?v=_91DUmj7ypU

Yesterday was a much needed breath of fresh air of the stress from Thursday afternoon when I (Nora’s mom) accidentally dislodged Nora’s IV port needle. :( I was putting her in her bed while she was wearing nothing but a diaper, which I rarely do, with her IV pump bag over my shoulder when what seemed like in slow motion I see the tape dressing covering her IV port pulling up. The slack in the IV line between her and the pump had gotten caught on something, which I’m still not quite sure what it was, but lesson learned, ALWAYS double check placement of her line and NEVER put her down in just a diaper. If she had been wearing clothes the tension on her line would have pulled at where her line comes out of her clothes first, but I was in a hurry and thought I could put her in her bed for just a minute while I got dressed………wrong. I immediately grabbed her up trying not to panic to check out the dressing, I could tell by the feel of the dressing that the needle had become dislodged and then that was confirmed when I tried to flush it and the saline wouldn’t go in. So I sterilize my hands, remove the dressing, take out the needle, put numbing cream over the port in preparation for a new needle and call Virginia, Nora’s nurse, and call Montana in from the office all the while cursing myself in my head for what had just happened. Nora was totally fine looking at me and smiling while I’m trying not to cry. I know these things happen and her needle has become dislodged before unexpectedly but when I’m the one putting her at risk for infection over actions that could have been avoided it is quite nerve wrecking. But thankfully the line didn’t break and I took the needle out right away so she wasn’t at anymore risk then she is every week when we change the dressing and put in a new needle but it still sucked. Virginia wasn’t working that day so we opted to put in a new needle ourselves instead of having the home health care company send over the nurse on call. We had Virginia train us to do needle changes for just these type of situations. The new needle went in fine and her port didn’t clot off, thank god since there was no way to flush it with heparin before taking the old one out. But for the next 72 hours after that (the maximum time for a line infection to show up) I replayed the removal of the old needle and the actions taken putting in the new one over and over in my head, second guessing that I had been as sterile as possible. I knew that I had followed all of the right steps and Montana reassured me all was ok but it was still hard to not worry. So the 72 hours came and went with no issues or fever, wheew. Now it’s time to take a deep breath, thank our lucky stars and take a break at the lake.
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Poop Talk


March 2nd, 2008

The past week has been a bit stressful with non-Nora stuff but Nora’s had a pretty good week and when she’s doing well it always helps deal with other things.

Montana’s dad came home from the hospital Monday afternoon still feeling pretty yucky and without many answers as to what happened. Jody (Grandaddy-o) continued to feel poorly through out the week but thankfully has started to feel a bit better over the past couple of days. It was a struggle for Montana to know his dad was in the hospital right up the road from us and not being able to go visit him. With the flu running rampid everywhere we did not want to put Nora at risk and stayed clear of the hospital. Jody’s care and concern for Nora’s health is a top priority as well and he wouldn’t have let us go up to visit even if we had tried. Thankfully Nora’s Uncle Kia, Montana’s younger brother, was able to pull hospital duty all weekend and made sure his dad was well taken care of .

Nora’s communication skills are growing by the day and the developmental therapist for special needs children thought she was doing so well at her appointment on Wednesday that she said she didn’t think Nora needed to be in the program anymore unless special concerns came up. Nora’s language and cognitive skills were assessed at 1 1/2 to 2 years of age and her physical developed is right on track rating at 10-12 months. She is now not only saying “poop” but telling us when she does so, which with short gut is quite often, although it’s rare that she goes and we don’t either hear or smell it. Most parents probably wouldn’t be so happy for their little girl to be saying poop but when you’re a parent to a short bowel child it puts poop in a whole new perspective. Nora is also pointing to her hair and feet when you ask her where they are.

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Nora’s TPN rate stayed the same this week because she had lost 6oz on Monday’s weigh in. It’s always disappointing to see a decrease in her weight but we’re not too concerned because we feel pretty sure her weight loss was due to a poop-a-thon that began the day before she was weighed. Her stools had been consistently thicker but then last Sunday boom, LARGE quantities of VERY loose poop. It’s hard to portray the magnitude of how explosive her poops can be until you’ve seen it first hand. Nora is teething again and her poops always get very loose when she’s cutting teeth. They’ve thickened up in the past few days and she still has a good appetite so we’re hoping for a gain back of what she lost plus some at tomorrow’s weigh in.

Nora started eating Cheerios last week, well not the name brand Cheerios cereal but an organic version and loves them! She wasn’t too thrilled with the first try but after a few days of eating a few at a time she has decided that they are very fun and yummy to eat! She’s very good at chewing/gumming them up before she swallows all the while making “mmmmm” noises.

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Nora loves stroller rides and being outside. Thankfully the weather has been nice and warm enough to get her out and about lately.

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A Meeting of the Cousins


March 1st, 2008

Here are some pictures taken a few weeks ago when Nora first met some of her cousins from Quincy. Hopefully they can all have another play date soon!

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The initial meet and greet……..cool pants Matthew!

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We love you Mama Tom!

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Nice to meet you cousin Ian.

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Nora can’t wait to join her cousins on the slide!

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Hey where are you going Matthew?

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From left to right….Ansley, Lucus (held by his mommy Anna), Nora and mommy, Olivia and cutie crashing on his tushy is Matthew. :)

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Thanks for sharing the great pictures Aunt Brenda!

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