Friday March 28, 2008

breakfast: 2ounces prunes and pears

lunch: 2ounces applesauce

Poop!

dinner: 2ounces banana

snack: 2ounces kefir(yah its back)

DX

First I took Marissa to an appointment with her Endocrinologist. I am proud to say that my daughter is ON the growth chart for the first time in her LIFE. In 3months she has grown 1.5inches and gained 2.5pounds. I wasn't expecting the strong reaction I got(very positive) Not that I was expecting a negative reaction but lets just say I get LOTS of pats on the back, tears and hugs from the Dr's who have been caring for her since birth. I left feeling recharged and accomplished with the progress we are making. After a quick stop for lunch we headed to regional center for her evaluation with the Neurologist. We did get the CP diagnosis that I was hoping for, but somehow I wasn't glad to get it once we did. She expressed that she felt that Marissa may be able to walk at some point, with support of braces and canes or walkers....something about her special stroller and how we can get away with that for a few more years before she needs a wheel chair. Spastic hemiplegia I believe is the DX. I left devastated and inconsolable. I don't feel like I am strong enough to handle all of this. As parents we all have dreams for our children, for the type of life we hope for them to have. I not saying she wont have a GREAT life, its just not going to look how I pictured it. That doesn't make it a bad life, just different. Letting go sounds easy enough in theory. I just feel like its one thing after another with her and I just wonder when its gonna end? When is this kid going to get a break? When we got the call about her we were told that she "used to be a tpn baby" that she had a g-tube and wasn't walking yet--but on the verge of and had some developmental delays due to lack of stimulation and deprivation. That she had improved to the point that she needed to be out of the medical facility and to be placed with a family. What they didn't tell me was that she only had a g-tube to get meds that she was currently on tpn and would be for the rest of her life(that she didnt talk, or swallow, or take any foods by mouth). That she had a potentially terminal condition and would be facing multi visceral organ transplant. That she had chronic organ failure, chronic anemia, left sided weakness(that is now DX as CP) That she's never formed a secure attachment to anyone person in her life. That she's spent more time in the hospital than out. But by the time I learned all that she was already mine. I wish I was a bigger person, if I was I would say I would have agreed to take her knowing all of this upfront. But honestly had I been given all of this information upfront I would have said a prayer that the right family was found for her and moved on without ever having met her. Of course now as her mother I know how blessed I am to have her as my daughter. I never imagined in a million years that I would be raising a child who is facing so many challenges, I mean what parent does really? I guess no one. I know I'm not only parent out there, so why do I feel so alone?

Friday March 21, 2008

AM: No poop

Breakfast: 1/2 a banana pureed and blended with 2ounces formula

Thursday March 20, 2008

AM--No poop.

breakfast: pureed prunes and pears 2ounces(50cals) diluted with 2ounces formula(40cals)

poop!

snack: 2ounce green beans(20cals) diulted with 2ounce formula(40cals)

lunch: 2ounce steamed quinoa and brocoli(100cals) pureed and diluted with 2ounce formula(40cals)

poop!

The following is vitamins/minerals and where they are absorbed

DUODENUM:
Riboflavin (B2)
Niacin
Calcium
Iron(iron absorbs better when taken with Vit C)
Protein
Carbs
Starches
Magnesium
Thiamine (B1)

JEJUNUM:
Sodium
Electrolytes
Glycerol
Iron
Calcium
Fatty acids
Cholesterol
Carbs
Peptides
Starches
Amino Acids
Water: 85% is absorbed in jejunum
Folic Acid
Thiamine (B1)
Bile Salts (small amount)
Nicotinic Acid

ILEUM:
L-Absorbic Acid
Vit. C: proximal ileum (iron absorbs better when taken with Vit C)
B12- terminal ileum
Fats
Bile Salts: Mostly in ileum (terminal)
Fat Soluable Vitamins (A, D, E, K): Ileum

Residual Water: Colon

And, here is a list of tests and what they are for (a special list
for people with malabsorption issues):

A: Fat Absorption:
1) Fecal fat microscopy - normal results are less than 100 globules
2) Quantitive Fecal Fat Analysis (one of the best tests for fat
absorption) - normal is 3-5 gm fat/day excreted. More than 6 gm/day
is significant
3) Serum Carotene - carotene level falls in fat malabsorption
4) Serum cholesterol - cholesterol is decreased in malabsorption
5) Fat Breath Tests

B: Carbohydrate absorption:
1) D-xylose absorption test: monosaccaride absorbed in jejunum.
Decreased level seen in jejunal mucosal disease and bacterial
overgrowth syndrome (breakdown of xylose)
2) Glucose tolerance test: results in a flat curve on test
3) Lactose tolerance test: shows an intolerance in infants due to
lactase deficiency or in adults with lactase deficiency
4) hydrogen breath test: disaccharidase deficiency and bacertial
overgrowth. Increased H2 (hydrogen) in breath if dissacharidase
level is low due too increased sugar in gut

C: Protein absorption:
1) fecal microscopy - shows animal skeletal muscle fibre if positive
2) fecal nitrogen - Normal is 2 to 2.5 gm/day.
3) protein losing enteropathy - increased fecal clearance of alpha-1-
antitrypsin. There is increased protein leakage in the intestine
when positive.
4) serum albumin - albumin levels are decreased

D: Vitamin Absorption:
1) B12 deficiency - Schilling Test
2) Serum folate - indicator of jejunal dysfunction (not enough folate)
3) Prothrombin time - Vit K decreased

E: Bile Salt Reabsorption
1) Bile Acid Breath Test: glycine is used. Bile acid glycocholate is
formed. In ileal dysfunction, jejunal bacterial overgrowth, short
bowel syndrome, there is labelled bile acid breakdown in colon

F: Mineral Absorption:
Serum calcium, phosphorus, magnesium, iron and TIBC

Pancreatic Function Tests:
Secretin test: duodenal contents are assayed for enzymes
Lundh test: Duodenal juice is analyzed for tryspin activity

Other Tests:
Duodenal aspirate: microscopy - girdia, culture- bacterial overgrowth

Probiotics

Probiotics in Pediatrics

Lactobacillus Sepsis Associated With Probiotic Therapy

Our short guts gut!

OK I just wanted to post this here so I have everything in one place. This is the diagram her GI helped me to write out. I have all the copies of her medical records and notes from both of her bowel resections that I want to scan into the computer. Consider that a note to self. Details that can be extracted from the drawing are:
She has 2-4cm of jejunum(no duodenum, ileum or ileocecal valve) to her transverse colon(she has 6cm) to her Sigmoid colon(10-12cm) top to bottom 18-22cm. Not much, but shes still growing my hope is that we can grow her big enough to get "enough" gut that she might be able to look forward to a bowel lengthening surgery, and maybe some good bowel rehab and adaptation...then ofcourse there is always the option of a transplant(but Id like to avoid that for as long as possible...)

Wednesday March 19, 2008

AM--poop!

breakfast: 1/2 banana(55cals) 2ounces formula(40cals)

lunch: 2ounces steamed greenbeens/2ounces formula(40cals)

snack: 1/4cup blueberries(25cals) 1/2 banana(55cals)

grocery list

After a bit more research I rethought my fiber options....

broccoli 50cal per serving(1medium stalk) 5grams fiber
kiwi 108cal per serving(177g) 5g fiberthey had none
banana's 110cal per serving(1 med ban) 4g fiber
sweet potaoes 103cal per serving(1 med) 4g fiber
asparagus 33cal per serving(5stalks) 3grams fiber
red potatoes 120 cal per serving(1 med) 3g fiberthey had none
plain yogurt contains bifidobacterium
quinoa
Blueberries

Lets try this again...

Ok so I read this morning that probiotics that contain bifidobacterium can cause problems in short gut kids with no ICV(ileocecal valve). This can lead to and or exacerbate SBBO and could lead to problems like we've had in the past few days. We spent another long exhausting day in the hospital yesterday getting various tests done(many invasive)to figure out why Marissa wasn't pooping. We had to rule out bowel obstruction, which we did. Then we did a colon cleanse and we were able to go home. So reading this this morning found me reading labels on the evarious things I'm giving her. What do you know? Not only do our probiotics contain bifidobacterium but so does our other probiotic, kefir. So for now I am going to stop both of those and start a new probiotic Culturelle. I am also going to go to the HFS and read the labels on the organic plain yogurts--I'm not sure if they too contain bifidobacterium, but assuming they don't I will replace the kefir with that. I also need to add some fiber to her diet. I'm going to pick up some organic green beans to steam and puree. Maybe some fruits...but her nutritionist suggested I avoid fruits and stick with veggies, so maybe Ill do some brussel sprouts and greens as well. Ill see what they have when I get there that's fresh and looks good.

NEC

stork&mondrian asked:
What is necrotising enterocolitis?

Necrotising enterocolitis (NEC) is a serious illness in which tissues in the intestine (gut) become inflamed and start to die. This can lead to a perforation (hole) developing which allows the contents of the intestine to leak into the abdomen (tummy). This can cause a very dangerous infection.

Born at 30weeks EGA Marissa devoloped NEC immediatly after birth.
As a result of this she had two bowel resections. After the second one more than 95% of her small intestine/large intestine, bowel and colon had been removed.

Saturday March 15,2008

1 banana [108cal]
2 ounces Kefir [40cal]
1/2 sweet potato [47cal]

3strikes

Ok so since Ive began this food journey weve had very little vomiting, actually a total of 3times she has vomited after a bolus feed. Each and every one of those times its been after I fed her an avocado. The first time I thought it was because I was in a hurry and went alittle fast. The second time I went to flush her button and gave her way too much water too fast. This third time everything was perfect and she still vomited. So as much as I hate to do it, I think I need to let the avocado go for now. I was really hoping this wouldnt be the case. That leaves us with potatoes, banana's, and yougurt/kefir. Im hearing good things about Quinoa but then I heard short guts should avoid carbs, but then arent potatoes carbs? whaaaaaaaaaaaaa.... off to read

Friday March 14 2008

1banana [108cal]
2ounces Kefir w/probiotics [40cal]
1/2avocado [117cal]
12banana [108cal]
total calories 373

Thursday March 13, 2008

1/2avocado 2cap DE .6iron [117cal]
2ounces Kefir 2cao DE 1cap probiotics [40]
1/2sweet potato 2cap DE [47cals]
1banana 2cap DE [108cals]
2ounce Kefir 2cap DE [40]
1/2avocado 2cap DE .6iron [117cal]
total calories- 469


DE-Digestive Enzymes go ahead an assume these will be in everything I feed her.

probiotices--Primal Defense Ultra 1-2times daily in Kefir.

Welcome!

I'm starting this blog as a means of recording our food journey. Marissa has sbs due to NEC. She has between 2-4cm of small intestine, no IC valve. She also lost 95% of her large intestine/bowel and colon. As a result she is on 20hr TPN daily. We are working to fight off TPN induced liver failure. At one point her liver function was so poor she remained in the hospital awaiting a liver transplant. Thankfully her liver function is now within normal limits. Her GI attributes this to enteral feeding which he tells me stimulates her liver and pancreas to function. Previously the benefit of the formula enteral feeds out weighed the side effects. Thankfully I am now aware that we have more options than the high calorie formula alone. This is food. Good old foods like avocados, potatoes, bananas and plain yogurts and kefir. Her side effects have improved drastically. With the addition of these foods and a few supplements we are hoping to maintain this liver function and hopefully adapt her bowel to absorb *something* with these added calories we pray that eventually the number of hours she spends on TPN each day will be reduced. I have this fantasy of hooking her up before bed and unhooking her when she wakes in the morning...It might still be many moons off from reality..but I believe in dreaming big! My plan is to keep a daily food journal here and talk about all other things short gut as the need arises.