Eating with 4.5cm


January 30th, 2009

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This time last year Nora’s g-tube button had just been removed. She was just starting to eat other foods besides Elecare formula and rice porridge, she was on TPN 24hrs a day and she was getting more calories from TPN than from food. Now Nora is eating a variety of different foods, she is on TPN only 12hrs a day and she is getting more calories from food and formula than from TPN. Nora still has a very restricted diet compared to the average 21 month old without SBS. But for having all but 4.5cm of her small intestine removed at birth she has come a very long way and we are very happy with her progress.
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A little flash back to how we got from there to here…….When we first brought Nora home from the NICU at seven weeks of age we were trained on how to feed her through a feeding tube and told not to expect for her to eat by mouth for a long time if not ever. She was on slow drip feedings via g-tube day and night. Then we slowly started supplementing a 3 hr tube feeding with a bottle by mouth of the same volume. Since her output did not increase we continued to do this until she was taking all of her total daily volume by mouth. She was still on a slow drip by pump at night but she often she would dump it in the morning or throw up. So then we slowly increased her bottles during the day to make up for the amount she had been getting at night until she was completely off pump feeds. Nora had her last g-tube feeding when she was a little more than four months old and she has been taking all of her food by mouth since then. As backwards to short bowel workings as it sounds, Nora’s poops actually improved with the transition from the feeding tube to oral eating. We kept her g-tube button in until she was nine months old to make sure she stayed strong and that she wouldn’t start dumping and then it was removed.

Weaning Nora off the feeding tube with so little bowel was definitely a debatable issue. We spoke to many doctors and gathered a lot of information before making the decision to do so. Even though she proved that she could tolerate receiving all of her calories by mouth some doctors told us flat out that we were not doing the right thing by discontinuing Nora’s continuous feeding at night time.  Then one doctor told us “if it were my kid, I’d be doing what you’re doing, but as a GI doc I’d say to keep the tube”. (huh?) But if Nora was born in Europe she would have never been given a feeding tube and would have been fed by mouth from the start. So who’s right and who’s wrong? The answer is that there is no right or wrong answer for SBS because every situation is so different and each child’s system works so differently.

The general short bowel theory is that the gut will adapt and grow more if it is constantly stimulated and working. This has been proven to be the right thing for many children with SBS and many children’s systems will not allow the intake of food any other way. But in Nora’s situation, it just seemed like we were forcing her body to do what it did not want to do. We couldn’t help but take into consideration how the digestive system slows down to almost a halt at nighttime (everything needs to rest) as well as knowing how the natural workings of digestion starts with saliva from the mouth. We have learned many lessons since Nora has been born and one of the biggest lessons learned is to not take what a doctor says as written law and to not be afraid to think for ourselves. Most GI doctors instantly make assumptions about children with SBS and many don’t even want to think outside the tiny box that children with SBS have been put into. If we had taken everything that we have been told by doctors as unquestionable then Nora would have even more limitations than she already has. Don’t get me wrong, there are many wonderful and very knowledgeble doctors out there, but they are only human as well. Nothing can replace the daily monitoring of your own child and paying close attention to how they respond.

So what does Nora eat? On average she drinks 800 calories of Elecare per day and around 150 calories of solid foods. Nora’s solid foods consist mostly of gluten free carbs, protein and vegetables. She can tolerate small amounts of certain fruits and minimal fat. She eats three small meals a day, 2-4oz at a time and she drinks 150ml bottles of 24cal/oz of Elecare all through out the day. (and even a couple bottles during the night, Nora never stopped the midnight feeding schedule of a smaller baby)

We continue to try new foods with Nora all the time. With most foods that her system doesn’t agree with it is obvious right away but other foods take a little longer to realize that her short bowel doesn’t like them. Here are the foods that Nora’s system seems to process the best these days.

rice and rice flour products;
rice noodles, rice puffs, rice waffles
goat milk
goat yogurt
quinoa noodles
arrowroot cookies
chicken broth
winter squash (fresh cooked)
carrots (jarred)
red lentils (fresh cooked)
potato (fresh cooked)
peas (jarred) – in very small amounts
chicken w/ veg. combinations (jarred)
turkey w/ veg. combinations (jarred)
bananas (jarred) – in small amounts
apples (jarred and fresh baked) – in very small amounts
pears (jarred and fresh baked) – in very small amounts

The way the food is processed and prepared seems to play a big part with how Nora digests it. But the preparation method her system likes the best varies from food to food. For instance, she can eat a good amount of jarred baby food carrots and tolerate them well but if she eats even a small amount of fresh cooked carrots it comes right back out soon afterwards, even though I cook them to mush and blend them. But with winter squash, she processes the fresh prepared much better than jarred, the same with lentils.

Even though Nora can tolerate a good variety of foods, her diet is a constant challenge and there are many foods that do not agree with her system at all. Digesting and absorbing fat is Nora’s biggest food challenge. Even though her poops have greatly improved in consistency and lessened in frequency since the last time we did a fecal fat test 8 months ago, the recent stool test showed that she is loosing just as much fat in her stool as before. The higher the fat content in the stool, the less fat that is being absorbed in the intestine. If a person is absorbing adequate fat their fecal fat number should be between 0 – 1.9. Nora’s was 5. We need to discuss these results with her GI doctors along with compare her fat intake during the days the samples were taken to get a better understanding of exactly what it means.

Thankfully Nora gets a healthy source of absorbable fat from her Omegaven. She certainly will face many more eating and nutritional challenges in the years to come. But with the intestinal adaption and growth that has obviously taken place in the last year we cannot help but have a positive outlook for her future. Just imagine what she could be eating in another year! Go Super Nora Go!
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Omegaven article in The Boston Globe


January 12th, 2009

In Friday’s Boston Globe an article was featured on the front page about Omegaven. The article focused on a wonderful little girl named Ellie Brogan who is one of Nora’s short bowel comrades.

Click here to read the article

As like many other parents, we first learned about Omegaven through Ellie’s site. As if learning of this life saving drug wasn’t enough, we have also gained so much strength and hope from Ellie’s site since Nora was born. Thank you Brogans for providing such a wonderful sourse of information and sharing your experiences with Ellie’s journy with short bowel syndrom.

If you would like to go to Ellie’s site just click on her name listed under the Short Bowel Blogs menu on the lefthand side of Nora’s homepage.

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Happy New Year!


January 2nd, 2009

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What a Year!


December 31st, 2008

Goodbye 2008! It’s been a year full of ups and downs with many challenges along the way but overall I’d say it was a big success for Nora. In the past year our little baby has grown into a little girl. I can’t believe how much has happened this year. Just to name a few highlights of the year Nora….

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Nora’s second Christmas was very special. Her NeeNee, Mammie and Pappy came over Christmas morning to watch her open gifts. As she’s in the midst of opening presents a very special guest rings the door. Dr. Crooms! Wow…..we were so surprised, and I think we still are. Dr. Crooms is Nora’s surgeon who saved her life when she was just a few hours old. Soon after their first meeting Nora grabbed a hold of Dr. Crooms heart strings and never let go. Even though we only see him every few months they have a very special connection. Dr. Crooms is a very busy doctor with a lot of patients and we are so very honored that he took the time out of his Christmas day to visit with us and bring Nora a gift. There is no denying what a very special little miracle Nora is and I think Dr. Crooms’ reaction to her success is a affirmation to that. I think our expressions say it all. :)
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On Christmas Eve Nora ate her first “real” green bean. She has tried baby food green beans before, which she immediately spit out and said “yuck!” But this time she said “yum!” and ate it up. Unfortunately her short bowel didn’t like it as much as her taste buds and it came out undigested the next day. But at least it stayed in her system for almost 24 hours and it didn’t give her diarrhea which usually happens when she eats something new that doesn’t digest. Even though the green bean didn’t digest I still see it as a step in the right direction since her system held on to it for a little while. (either way she looked darn cute eating it)
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Before dinner Santa Nora took a ride in a two dog open wagon instead of a one horse open slay. The details were a little different but she still delivered a big package of joy!
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Every little girl wants a pony for Christmas! Thank you NeeNee, Papaw Don, Aunt Jenn and Uncle Chad!
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She was a little intimidated by her horsey at first and just wanted to pet and kiss him. But by Christmas evening she was ready for her first ride.
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Giddy up!
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We say goodbye to Christmas with a walk through the lights at Dorothy B. Oven park.
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Click on the links below to see video clips of Nora’s Christmas lights adventure.

Christmas lights at Dorothy B. Oven
More Christmas lights at Dorothy B. Oven

MERRY CHRISTMAS! WE HOPE EVERYONE HAD A WONDERFUL HOLIDAY SEASON! THANK YOU FOR ALL OF YOUR LOVE AND SUPPORT. LOVE IS THE BEST GIFT OF ALL.

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Getting Ready for Santa


December 16th, 2008

I can’t believe Christmas is less than 10 days away. Nora has been having lots of fun playing with the tree ornaments and looking at the sparkley lights. I can’t wait to see her reaction on Christmas morning now that she’s getting to be such a big girl. She’s so inquisitive and thoughtful about everything she does. Here’s a little video clip of chatty girl Nora talking to the ornaments on the tree and showing them to her toy duckie.

http://www.youtube.com/watch?v=gBS4S2k_Pn0

Nora was a good helper when we decorated the tree the other week. She likes to take the ornaments off more so than putting them on but overall she’s been a very good girl with the tree.
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Nora has been doing great on the decreased amount of TPN. She’s been on the lesser amount for almost 3 weeks and she has gained 12oz since the decrease! Her little body isn’t the only thing growing. Nora’s vocabulary amazes us everyday. She can say pretty much anything she wants to. She has learned how to say “thank you” and “you’re welcome” and when it is appropriate to say it. And the other day she turned to me and said “hi mama, how ya doin?”.

Nora loves to be outside, she’s such a little nature girl. Here she is enjoying her first wagon ride.
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NeeNee’s doggies joined in the wagon riding fun too!
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She would have rode around in the wagon all day if we had the energy to keep pulling her around the yard. The faster and bumpier the ride was, the more she liked it. Every time we’d stop she’d say “more, more!”. After seeing how much she loved it, a wagon is now on her Christmas list. (but a less heavy duty one) :)

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A Long Overdue Update


November 30th, 2008

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Where to start…so much has happened since our last post. Some very good and exciting things have happened. Nora got to meet her great-grandparents (on her mommy’s side) for the very first time, Nora finally made it up to 20 pounds and her TPN was reduced with a plan put in place to keep reducing it. (yay!) Then the not so exciting events that occurred was a night in the hospital with a mystery fever and Nora will no longer have her wonderful nurse Virginia :( . It’s been a mixed bag of nuts the past few weeks but overall things are going very good.

Virginia has been Nora’s nurse since the day we brought Nora home from the hospital. Sadly Virginia is no longer working for our home health care company. Monday was her last day and the last time we had her help to change Nora’s port needle and draw labs. Until a nurse comes along that brings us as much comfort as Virginia then we will be doing these weekly duties ourselves. Virginia has grown to be much more than a nurse to our family. She’s a wonderful person and friend and has always gone above and beyond for Nora. Loosing her as Nora’s nurse has been very hard for both us and Virginia. It was not Virginia’s choice to leave but a result of downsizing because of this wonderful state our country’s economy is in. Of course we’ll still stay in touch with Virginia, but now instead of Nurse Virginia she’ll be Aunt Virgina.

Nora spiked a fever of 102 last weekend so off to the hospital we went where it rose to 103. This was Nora’s first hospital admittance in over 15 months. I guess we had rode out our luck long enough and it was time to pay our hospital dues. Obviously with Nora having a port our first fear was a line infection even though her temperature pattern and temperament didn’t allude to that. But she wasn’t showing any signs of a cold or a tummy bug either, the only symptom was a temp. and she was very tired. Her initial labs came back off just enough to make us scratch our heads, not showing a raging infection or strong viral signs but definitely a little off pointing in both directions.

The usual protocol at the hospital for kids with central lines who come in with high fever is to pump them with heavy duty antibiotics right away just to be safe. We were torn on whether to wait on the antibiotics because if it was a line infection we certainly didn’t want to give it time to get worse but we knew that antibiotics, especially the kind they give for a line infection, would tear up Nora’s system and she’d probably end up with bloody stool and a whole new set of problems like every other time she’s ever had antibiotics. Thankfully the nurses and doctors were well aware of Nora’s situation and didn’t push us. It was nice that they trusted us as parents so we didn’t have to fight them on the antibiotics or when we told them that no one touches Nora’s port line but us. We were nervous about chancing it but luckily her blood culture never grew anything.

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So hospital stays are never fun but at least this visit went better than expected. Nora has been extra shy and leery of new people lately so we were expecting an unhappy girl at the hospital but thankfully Nora saw it as a holiday and enjoyed playing in her “monkey cage” as we call the toddler hospital beds. Nora’s fever lasted almost exactly 24 hours so it must have been some sort of bug. Little ones get mystery fevers all the time but when a central line is involved we just can’t take any chances. This is why we are so paranoid and protective of Nora. When she has a fever we have to take her in to be safe but then just taking her to the hospital is putting her at even more risk to other sicknesses. Like the merca virus which we were told was the reason why the pediatric floor was almost at full capacity. great…..

Now on to the good news! Nora had her Shands clinic appointment the other week. The doctor she saw had not seen Nora since she was 6 months old so to him she was pretty much a new face. Before even examining her he commented on how good she looks just as a general healthy looking child. As he’s reviewing Nora’s chart and we are telling him how much she eats by mouth, he had to stop the conversation to confirm that there wasn’t a typo in her chart. “Is this right? Nora only has 4.5cm of small intestine?” “Not a typo!” we happily replied. So all in all he was quite impressed with our little miralce girl. Since Nora reached 20lbs in the time frame her main doctor had wanted her to be 18-19lbs, both doctors agreed that she is consuming enough calories by mouth and gaining weight so well that they reduced her TPN. She went from getting 320mls over 18hrs to 270mls over 12hrs. As long as she continues to gain weight then her TPN will be reduced by 15% each month until she’s at 0mls if all goes well. Keep your fingers crossed! :)

I saved the best part for last…..Nora’s second Thanksgiving was a wonderful one that included a very special visit from her grandparents and great-grandparents from Kentucky. As much as we have wanted to get Nora up to meet her great-grandparents, traveling 12hrs with her just hasn’t been a possibility yet and with them being 81 years old it’s not easy for them to travel either. My Dad’s parents have always been a big part of my life so this was a very special time for all of us to get together. They came into town a couple of days before Thanksgiving so we had some time to enjoy some outdoor adventures to some of Nora’s favorite spots.

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Nora with her Great-Granddaddy, Nana, Nanny and Granddaddy at Lichgate Cottage where we celebrated Nora’s 1st birthday.

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Nora was a great tour guide and showed her grandparents all around, making sure not to miss pointing out any sticks or flowers!

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Nora had a great time checking out acorns and berries with her Granddaddy. Nora is one nature loving little girl. Get her outside and she’s happy!

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Then of course we had to take Nora’s grandparents to meet her duckie friends at Lake Ella. It was a nice way to walk off our Thanksgiving dinner.

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Thank you so very much Nanny and Granddaddy for bringing Nana and Great-Granddaddy down to meet Nora!! We love you very much and miss you already!

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What else happened in October?


November 11th, 2008

I realized that I only posted fun, non-medical stuff last month so I figured that I should fill in the blanks. Thankfully Nora is doing great and there’s not too much medical stuff to catch up on. Let’s see….the change in weather has brought on seasonal allergies for Nora, (just like her mommy) with itchy eyes, sneezing and a stuffy nose, a trait I was hoping she wouldn’t inherit. We were at first concerned that it may be a cold but both her doctor and acupuncturist agreed that it’s allergies. Nora broke out in mystery hives with swollen eyelids one afternoon but thankfully they cleared up on their own, she had not eaten anything new so we contributed it to being allergy related.

Nora is up to 19lbs 7oz! She has been doing so well with consistent weight gain that we’re hoping Shands will decrease her TPN when she goes in for her check up next week. She has been doing great with her eating and her poops have been fantastic for many, many weeks. I’m being very daring to put that in writing as it seems that every time we say it out loud her poops go to crap, no pun intended.

The biggest excitement of the month was when Nora decided to surprise us by playing nurse and completely removed her IV port dressing and needle. The skin around her port usually holds up very well for never getting a break from being covered with tape but in the beginning of October her skin had decided that it had enough and became very irritated and raw. As you can imagine it is very itchy to always have layers of tape covering your skin and when you have raw skin under the tape it can become overwhelmingly itchy. So as a result from what we can only guess was a scratching frenzy, since we didn’t actually see Nora do this, out came her 1.5 inch huber needle one morning while she was quietly playing in her bed. Nora is too tough for her own good. We had wondered if this might happen one day when she was 2 or 3 years old but not at a year and a half! She has always had a high pain tolerance but she didn’t even let out a peep when she pulled out the needle and then it hung out in her shirt scraping up her tummy, for what looked like a good 30 minutes from the amount of TPN on her clothes, before we realized what she had done. Thankfully the needle didn’t puncture her stomach or end up in her hands. It’s crazy that she’s strong enough to pull the needle out because it does not come out easily, let alone get the dressing of many layers of tegaderm off. It takes a good strong tug to get the needle out of the port and I have to hold the needle in one hand and secure her port with my other hand to get it out. One nurse described taking out the needle like taking out the cork screw from a cork. I don’t know if I’d describe it as quite that hard but you get the point, it’s in there.

Of course we were completely freaked out when we realized what happened but all we could do was put a new needle back in and hope that no contaminants got into her bloodstream when she removed the needle with her little unsterilized hands. We kept her torso wrapped with athletic wrap while her skin healed so even if she went to town on her chest she couldn’t get to her port. This happened about 3 ago weeks so now we can safely say that there were no infections as a result of Nora playing nurse. But in the week following this incidence we were on high alert watching for signs of an infection that thankfully never came. I found my first grey hair the day after Nora took her needle out. Coincidence? :) We have had more than a few scenarios to cause infection scares with Nora and as hard as we try not to obsess over temperature checking during the following 48-72 hours it’s very hard not to worry.

So since we’re on the subject of Nora’s port I wanted to write a little bit about the details of her port to give a better understanding of how it works. I made a separate post right below this one to make it easier for people to find who are searching for information on ports.

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