Archive for the 'Nora Tidbits' Category

Nora’s First Birthday


April 27th, 2008

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Today is Nora’s first birthday! The day was absolutely perfect, rain and all. We celebrated Nora’s big day at the Lichgate Cottage which is a beautiful piece of preserved land that was saved by a wonderful group of local people. It was the perfect place to celebrate since both Lichgate and Nora were both given second chances. We could never have hoped for a more joyous day. This time last year it was a distant dream to be in such a happy place on Nora’s first birthday, especially TPN free. Nora has been off TPN for seven days and is doing great and she is more active than ever.

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Lichgate Cottage

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Nora napping with Grammy inside the cottage before the party.

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Nora rested up and changed into her party dress is ready for her grand entrance! Thankfully she was not apprehensive at all about going back into the cottage full of people after having gotten quite upset when she awoke from her nap in a room with lots of people.

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Nora walked around happily greeting her guests before heading outside during a short break in the rain for cake and presents under the oak tree. (Thankfully Nora didn’t know the difference between birthday cake and rice and squash.) :)

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Nora was surrounded by many friends and family on her big day. The day was extra special with Dr. Crooms there to celebrate. We can never thank him enough for giving Nora the chance to show us that her life force is stronger than medical logic. We are so fortunate to be surrounded by so much love and support from near and far. The love surrounding Nora has allowed her to stay strong and beat the odds. Thank you to everyone who has shown our famiy so much love and support during Nora’s first year.

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HAPPY BIRTHDAY NORA!!!!!!!!!!!!!

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Party Time!


April 26th, 2008

Tomorrow is Nora’s first birthday! We are super excited about the big celebration. Nora had her first retail experience this week when she went along to the party store to stock up on birthday supplies. I was a little nervous she’d have sensory overload with never being in a big store before, especially a store with all kinds of flashy stuff but she did great even with being tired and in need of a nap. She took it all in and pointed out lots of neat stuff and was very excited to see another little baby whom she waved at until he walked out the door. Here are some pictures of Nora’s first big shopping adventure.

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Pediatria


April 24th, 2008

This week is the opening week of a wonderful daycare for special needs children here in town called Pediatria. This is the first daycare for special needs kids in Tallahassee. This fills a great need in our community and I am so excited that our good friend Bobbie Jean Armstrong is running it. We met Bobbie Jean shortly after Nora was born when she became our insurance coordinator. She was a tremendous help in getting Nora what she needed and we kept in touch after she left the insurance company to open Pediatria. Pediatria is a Georgia based company and this is the first one to open in Florida. The daycare provides physical and occupational therapy and is staffed with RN’s.

Nora and I visited the center last week before it opened and what a great time Nora had testing out some of the toys before the first students arrived.

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The set up of the daycare is perfect and truly delightful. The center has a bright and cheery educational atmosphere with lots of windows and a great playground outside. They even have a Curious George isolation room if a child is sick. The center far outshines any other daycare I have ever seen. I am so excited about the help Pediatria will bring to families with special needs children that I just had to share the news.

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We wish you the best of luck Bobbie Jean, congratulations!

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TPN free for 36 hours!


April 22nd, 2008

Just wanted to make a quick post to let everyone know the WONDERFUL news, Nora has been line free since 8:30 yesterday morning!! She has been doing great and her blood sugar is staying stable. And she had a 9oz gain from last week, woo hoo! She hasn’t had that big of a weight jump in a while but I’m sure she’s just making up for lost time as she has been shoveling down the food since she’s been getting less TPN. Her labs came back from yesterday looking good and we’re hoping they’ll look just as good next Monday after being off TPN for a week. We’re checking her glucose every 2-3 hours and setting the alarm checking it through the night. She’s such a good girl, she has never resisted or fussed about getting her finger pricked to check her blood sugar but we’ve been checking it so often lately that when I tell her it’s time to check her “finger number” she holds up her pointer finger and gives me her hand. Thank you Nora. :)

Montana and I have been floating on cloud 9 and worrying that she’ll be ok without TPN all at the same time. We keep thinking that we need to lay out her TPN to mix. Waking up this morning I had to double check that she really didn’t have a line connected to her. Nora is obviously enjoying the freedom to romp around without constantly getting tangled up her line. Hopefully this freedom will last. My gut (no pun intended) tells me it will even though it’s hard to believe. We’ll post more throughout the week with Nora’s progress during this monumental birthday week. :)

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3 more days of TPN?!?


April 19th, 2008

Nora has been doing great with weaning off the TPN. She went down to 5ml/hr on Monday after having good labs and a weight gain from the week before. 5ml/hr is a very low dose of TPN and she is still thriving and keeping her weight. Virginia brought the scale by yesterday and she’s holding tight at 17lbs 2oz after being on the lowest rate for five days. Nora’s blood sugar has been very stable so unless this coming Monday’s labs show a surprise Nora will be off TPN completely next week. What a great 1st birthday present that would be with Nora’s big day coming up next Sunday!

It is so very exciting to be a week away from her birthday. I’ve been thinking back on her birth a lot recently and what a world away we are from where we were then. Going up to the NICU at TMH last week to deliver Nora’s b-day invitations brought back many memories of Nora’s beginning. Montana and I knew this day would come even when we were told her chance was less than 1% but we never dreamed our little Super Nora would possibly be off TPN before turning one! Either way, with or without TPN we are certainly looking forward to celebrating the big day. :)

On Thursday Nora had a follow up appointment from the removal of her g-tube button with the wonderful surgeon Dr. Crooms. For those of you not familiar with his name he is the man who saved our little Nora on the day she was born. He has a very special connection to Nora and we will forever hold him close in our hearts. We discussed the plan from Shands to get Nora off TPN by reducing the rate instead of dropping hours. He thought that she was ready to come off it and said that he didn’t think that one way was better over the other when tapering off TPN. We also discussed the amount of small bowel she had left after he removed 95% of it when she was just a few hours old. We knew that he was able to piece together very small amounts of each the absorption parts with a combined total of 4.5cm but we didn’t ever know which parts she had the most of. So now we know that the majority of small bowel she has is the duodenum, she only has a “sliver” of jejunum and a very small amount of ileum. Her small intestine must have grown immensely in the past year or adapted extremely well or both for her to be able to process so much orally. There is no way to know how much her intestine has grown with out opening her up and hopefully that wont ever need to happen again. So we’ll just know that somehow, someway what she has is working and we’ll be very thankful for it.

On the non-medical front Nora is chugging along at great speed. She’s certainly not a little baby anymore and is quickly turning into a big girl. Her personality is blooming by the day and she doesn’t miss a thing. She loves to be outside and especially loves her ducks up at Lake Ella, feeding them bread is extra fun. In the past few days she’s replaced all of the words she knows with “duck”. I thought a visit with them would solve it but she’s still stuck on duck repeat for the moment. :)

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Here they come!

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Hello big soft shell turtle!

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Relaxing on the blanket…….

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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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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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