She's not ready yet...

Whitney looks so beautiful.  Sometimes it makes me forget that she is a "medically complex child."  Plus, from just looking at her, you can't really tell that she has so many medical issues.  It's hard to be THAT parent.  Pretending she great around others, but spending many hours a week at Dr. appointments and therapy.  But don't worry, we are strong and will do anything to help our daughter!

Today we had the swallow clinic do a "study" on Whitney to see if she would qualify for PCH's intensive feeding program.  The feeding program is 1 hour of therapy a day for four weeks, with the ST, OT, RD, and GI. Sounds good to me!  So, About 6 medical practitioners came into the office to watch Whitney and listen to her feeding background.  She ate a couple bites of yogurt for them.  Whitney even got brave and walked around.  She didn't throw up which was amazing, though I only feed her 2 oz of breakfast so that she would be hungry and eat for them.  After a while, they left to have a private disscusion.

I wasn't expecting Whitney to qualify because she just started eating yogurt and ramen.  But I also didn't expect them to turn us down because of her medical issues.  They said we have to figure out and resolve her reflux, slow motility, behaviour, and her anatomy. I guess I'm wrong in thinking that Whitney would be just fine is only she could eat (and gain weight) by herself.  Ya know? If she would just eat when and what she wants like a normal toddler, then maybe she wouldn't have reflux or slow motility or vomit and would just grow!  But I seriously need to realize that that is not the case.  Soon she will be on four different medications.  She won't be fine if she eats on her own, she's needs medical intervention. 

I wonder why the GI Doc. would even suggest the swallow study clinic when she should of already known that Whitney was not medically sound.  Although, it was a good experience and the Therapist there said we were doing a great job at home and to continue with the other therapist.  Plus I'm glad that she, our new GI doc, is more out going and aggressive at the getting the help Whitney needs. 

The GI doc. said that she was gaining weight, 19 lbs 5 oz, (below the 3rd percentile), 32 in, (50%) and head is in the 75 percentile,  but that's not enough.  She getting enough calories but maybe she's not digesting them properly.  Or maybe she's getting too much of something.  They want stool samples to test Whitney's fat and also blood to test enzymes and such.  They will do the blood when she's out for the endoscopey. She also wants me to start Whitney on the Erythromyicin before the endoscopey.  At a really low dose it's suppose to help with the gi tract motility.  The pharmacy has to order is special so hopefully I'll get it by Friday.   Hopefully this med will let Whitney tolerate more food at a time.

  I know Whitney's not ready for intensive feeding therapy, as much as I want her to eat and be weaned of the tube, she's just not ready.  In fact, they broke my heart by saying "We'll re-evaluate her in 6 months."  ...wow

Whitney is so cute!  I make her leave her pacifier in her crib, she does really good and puting it down after a nap or bedtime but always gets upset.  So sometimes she sees it in her crib and then does the sign for bed or "ni night"  so I put her in her crib.  I gave her my DS and she's very entertained by Mario!  Extra quiet time for me I guess! 

Today we also went on a walk to the park with Gramma and Aunt Brianna.  It feels so nice outside!  Whitney loves watching the cars and dogs on our walk.  She loves the swing!  My mom was so nervous the whole time though! I don't know why haha!  But Whitney won't fall out and I don't think I push her that high!?  Whitney also scared Gramma by not holding onto the swing! Haha! she brave like that! Whitney also loves the slide and sand.  What kid doesn't love the park anyway!? 

Feeding Tube Awareness Week Day SIX

     Awareness Week Topic of the Day: What do you want clinicians to know about the day-to-day life with a feeding tube?

First time parents rely a lot on their doctor’s advice.  They don’t know that they have to be an advocate for their struggling child. But once the parent realizes they do need to advocate for their child, they are considered to be “difficult.” We are not; we only want what’s best.  I want them to realize that when a child gets a feeding tube for the first time, the parents or care givers have done a lot of research but still don’t know everything!  It takes a lot of time to get use to the tube (whether NG or G), and to learn how to use it.  I was really unhappy that, when my daughter got her NG tube, they made me reinsert it the next day!  I still am.  It’s torturous to babies to have it inserted, and there was nothing wrong with the tube, they just wanted to make sure I could do it.  It’s not like I didn’t want to learn to do it, I just really didn’t want to put my daughter through that again, so soon!  So I would prefer that when a baby gets an NG Tube, they stay at the hospital only long enough to make sure it’s working and to get on a good feeding schedule.  Then maybe a week later, go to the GI Dr. and have them help you learn how to put it back in.  I want Clinicians to know that parents haven’t done this before, so just because it’s easy for you, doesn’t mean it’s easy for us.  I probably called the GI nurse once or twice a day concerning Whitney’s tube and feeding schedule. I want them to realize that the NG tube is only for a short period of time...not 9months.  NG causes aversions to get worse!  So for the G-tube, I read up on it more and found a great resource, feeding tube awareness website, to help me with all my questions and concerns about it. We finally got on. I still called the doctors a lot though, after we got home from the hospital.  But the GI doctor really didn’t understand why she wasn’t gaining weight and wanted Whitney to have either a Nissen fundoplication or a GJ tube!  All she really needed was more calories! Those two options basically force them to keep the formula down, even when they can’t handle it.  And he would only give us two options for formula and Whitney didn’t tolerate either!  I called them every day saying she was throwing up the formula and she even lost weight on it.  I’ve cried so many times because I didn’t know how to help my daughter gain weight.  That’s why I couldn’t wait to do a Blenderized Diet.  Although the GI doc didn’t really care for us to do that.  But doing it is so much better for Whitney and she is gaining really good weight.  Clinicians should know that it’s difficult giving medications to our babies several times a day, every day.  It makes me sad that my baby depends on these meds to not be in pain.  And some Dr.’s or therapist just ramble on about all that they know, and never really listen to the parent’s needs. Any ways, that’s it pretty much it on what I want clinicians to know about the day to day life with a feeding tube. It’s not easy, but worth it.

Feeding Tube Awareness Week Day FIVE

      To answer this week's FTA question:   The need for greater awareness in the medical community- Explain a situation where a clinician didn't understand tube feeding and what was the impact.

Thankfully, I really don't have an incident to explain!  But obviously there are a ton of them that other mama's shared if you click the link!  All of Whitney's DR.'s and Therapist support her feeding tube and understand it.  The pediatrician is good with it too and is happy with Whitney’s growth. Cardiologist wants Whit to gain weight for her heart strength.  Pulmonologist want’s it so Whitney can grow for her lungs to get bigger.  Of course the GI Dr. wants it and understands and so does the dietician.  The Pharmacist is also aware of them and gives me extra syringes for meds!   The Pediatric surgeon, though, is the only Dr. who really wants Whitney to eat, they are all happy she is growing though!  Surgeon just doesn't want to do more surgeries on her!  I'm glad though that she supports it and knows that Whit needs it!  It hasn't come out yet, but if it were, I'd take her to PCH (with a new button, because they are all different sizes), and make sure an experienced Dr. or surgeon replaced it, since I don't know how to!  I might try at first to at least keep the hole open, but still go to the hospital to make sure I did it right!  So I don’t have any crazy experiences where Dr. or nurses don’t know anything about feeding tubes!

Feeding Tube Awareness Week Day FOUR

      To answer todays Feeding tube awareness week's question about ours and family and friends attitudes towards feeding tubes: 

First off, I would really like to know what you all think about feeding tubes and Whitney having one!!? I’m curios to know your opinions and feelings about tube feedings!! 

I think that most, if not all, of my family and friends have a postive attitude towards tube feedings and why Whitney needs one.  We are very blessed to have such understanding people in our lives.  Most of our friends and family are shy and embarressed to ask us about her feeding tube.  They just don't want to offend us I think.  It's understandable, but they shouldn't be!  And I'm sorry if I make them feel that way, because I really can talk about her feeding tube,  it's her birth story that I can't talk about with out crying.  Also, when we brought Whitney to church for the first time, she was about 9 months old,  people though the NG tube was oxygen!  I nicely explain that she was off of the oxygen and this was her feeding tube. 

Before Whitney was born, I knew she would rely on a feeding tube in the NICU and possibly come home with one, so I did a lot of research.  There's really not much out there!  I was really glad that Whitney didn't have to come home with a feeding tube. They said she was taking a good amount of formula through the bottle and taught us very well on how and when to feed her.  I was so glad!  Whitney's homecoming was the happiest day of my life!  I know its sad that her birthday was not the happiest...she was born dying.  Of course it was a very good thing that she was born, which makes it a very happy day, but in reality, it was a very sad day.  She was able to come without the feeding tube but she was still oxygen dependant.

I thought "I'd prefer the oxygen rather than a feeding tube!"  One of my fellow CDH mama's Baby came home with one and I didn't really understand it myself!! I was also jealous though that this mother was able to breastfeed her CDH survior baby.  You know I tried for about a month to pump for Whitney and tried to keep it so that I could feed my baby.  But I could hardly get any milk (TMI?) and I was so depressed and it was so hard to find time to pump when all I wanted was to be with Whitney.  Eventually I had to stop, unfortunately it was before Whitney was able to eat. 

Working with Dr. and Therapist, we tried everything we could to avoid Whitney getting a feeding.  But obviously, she truly needed one to survive. She was screaming at a every bottle feed.  We tried everything; music, rhythm, dark, light, quiet, warm bottle, room temp bottle, swaddled, all diffent positions, and more. She was even on prevacid.

  I thought she'd only need the NG tube for a little while to help get her strength back and weight up.  But, it was ultimitely causing more aversions!  Sure it saved her life, but it made her not want to eat.  So after 9 months on that, I myself pushed for a g-tube!  Of course at first I thought it was gross and scary.  I talked to a ton of other mama's whose child had one and that was a huge help for me to understand it better! 

My CDH mama's baby got weaned off her tubie and is now a great eater.  Of course I'm a bit jealous of kids who can eat, but my attitude towards Whitney's feeding tube is that it's a life saver!  And I'm very glad that I can blend up a whole healthy meal for her to have and not just formula!

Although she is very underweight, she's growing, and very smart.  She's at the 3% for weight, 50% for height, and the height to length ratio she is 2%.  Any ways, tell me what you think and I'm happy to answer any questions!

 First day home

Back in the ER because she wouldn't stop screaming and wouldn't eat.

Lots of vomit, not spit up, but vomit even with out the feeding tube

Always sucking her fingers to tell us she was hungry, but she could never eat.

Feeding Tube Awareness Week Day THREE

     To answer the Feeding tube awareness week question of the day: Understanding life with a feeding tube/daily routine.

Whitney has had a feeding tube for about 14 months now (since DEC 2010). It's been a daily challenge from the beginning. NG tube was the hardest because I had to insert it myself and it just required more daily steps with formula and such, plus bottle feedings, medications, and night drips = no sleep! Whitney was also on oxygen at the time and needed a monitor on her foot to monitor her saturation levels.  Bringing to Dr. appointments 3 or more times a week, was a chore and a two person job!  I always had to make sure I had more than enough of everything, including; extra clothes, diapers, wipes, blankets, bibs, formula, meds in cooler, syringes, bottles, water, cup to warm up the bottles in, the feeding pump, charger, extra feeding pump bags, pump’s backpack, NG tubes, lube, tape, scissors, stethoscope, oxygen tank, extra tank, and nasal cannulas, of course a bunch of toys, and notebook of Whitney’s medical history, notebook for taking notes, my yearly planner, and all of my stuff!  Anyways, a couple months after Whit got her G-tube, (AUG 2011) I was able to start a Blenderized Diet (NOV. 2011). It took a couple months to figure that out too, but now the day to day needs are pretty routine for me. So depending on the week, Whitney has 2 or 3 therapy appointments, and 1 or 2 Dr. appointments. Daily Routine includes:

730am Wake up and Daddy giving Whitney water & meds.

800am Tube feed 4oz.

1100am give water through tube because she doesn’t drink enough

1130am tube feed 5oz.

1200pm-2pm Whitney takes a much needed nap.  She’s really loves her naps!

230pm water & meds.

300pm tube feed 4oz.

600pm water.

630pm tube feed 5oz.

7pm Bedtime routine and sleep

 930pm water & meds.

1000pm tube feed 4oz. while asleep

That is simply her tube feeding schedule. During her meals, she is in her high chair, playing with food or toys, while I have syringes of food and push it slowly into her stomach. Every meal takes about 20-30mins to complete. In between that I am cleaning all of her supplies, Making her food every other day (takes me about 40-50mins), every other normal house hold chore, and If I have free time I will try to shower! Whit also vomits about once a day too, so lots of cleaning that up and laundry and baths. Plus I like to make her real food to play with, taste, and smell. I also try to play with my girl as much as possible! We love to bike ride to the park if there’s time, or we just play in the backyard.  I'm really not cleaning all the live long day! So that's pretty much it. It's definitely not a normal toddlers schedule but we make it work, somehow.

Feeding Tube Awareness Week Day TWO

     To answer today’s Feeding Tube Awareness question: Why do you/does your child have the feeding tube they have now? Today, we highlight the medical conditions that can require tube feeding. 

There are so many different reasons why children or adults rely on Feeding Tubes.  Whitney K. was born Congenital Diaphragmatic Hernia. (Not all CDH babies require feeding tubes) There are so many different types of this birth defect. Whitney was missing 75% of her right side diaphragm. The cause/reason is unknown. So her liver and intestines developed in her chest causing her lungs to be severely under-developed and pushing her heart to the left. When she was born she was given a 20% chance to survive. She was intubated immediately (breathing machine). She was put on the ECMO (heart and lung bypass) machine at one day old. After 6 days she was able to have the CDH repair surgery. She continued to require a breathing tube for a whole month. Then it was time to try the bottle. She could only manage 5-10 ml's at a time and was always spitting that up. Basically, Whitney was unable to learn out to eat, because the first weeks of life, eating is an instinct, but after that, it’s a learned behavior.  After a month of working on bottle feeds in the NICU, she was able to go home at 56 days old! She came home on oxygen. When she was home she would scream every time we tried to feed her. No matter how comfortable she was, when that bottle came out, she screamed. And vomited. About three months of Failure to Thrive, she needed the NG tube.  Whitney learned that eating was painful, too many bad experiences. She had severe oral aversions (due to the NICU), dysphasia, GERD, and aspirated. I could only feed her when she was asleep and even then she didn't have the stamina to drink a full bottle. The nutritionist told us we couldn't leave the hospital until she was gaining weight on the NG tube. I would feed her a bottle 3 times a day and she could only drink about 2-4oz at a time.  Even with the formula being 30cal/oz, it wasn’t enough.  Plus she vomited so much with the tube.  Nine months with the NG tube and still trying to get her to eat by mouth, she needed the G-tube, a more permanent tube. She still vomits with the g-tube. Now working with 3 different therapists, Whitney is gaining some skills with eating solids. Like drinking water from a spoon. (She never did take a bottle!) Until Miss Whit is able to eat all her calories sufficiently by mouth, then she will be tube free! But we do not know when that will be! Could be months, could be years!! But for now, she is thriving and surviving because of her feeding tube. It's a love hate relationship with the feeding tube, but I'm truly grateful for it.

CDH Awareness

Newborn Whitney, Day of Life One, on ECMO Machine

In hospital getting the NG tube 5 months old

In hospital getting the G-tube



Feeding Tube awareness week: Day ONE

1)       To answer today’s FTA weeks’ question: Why awareness is important to my family? What would be difference for me/my child if tube feeding was better understood? Feeding tube awareness is important to my family because we want to feel accepted and more comfortable with friends and family. Neither my child nor her parents are failures because of a feeding tube. In Whitney’s case, she didn’t learn how to eat, and when she was able to, it was painful because of unmanaged reflux.  It's important to realize that the feeding tube is a last resort life saver, and without it, Whitney would not thrive. Even though she has a strict schedule, we can still have a fun life! We can go to the park, bike ride, hike, and even go out to eat.  Although, I’m very concerned about germs and Whitney getting sick, so I simply take extra precautions.  Awareness of the three different therapists working with us to improve her skills, including, eating, sensory, and fine motor.  We can't just "feed her ice cream" and all of a sudden she will love eating. In fact, Whitney can barely tolerate being next to food!  She might try a bite at first, but the become very anxious around food.  Whitney doesn't have the skills to eat most foods or drink thin liquids. That is what I and the therapist are helping her with.  I’m grateful for feeding tube awareness week so that I can have the opportunity to share with my friends and family about Whitney and her feeding tube.  Thank you all for participating in feeding tube awareness week with us! There are so many reasons a person could need a feeding tube and we need to support them!

You can tell I was trying to at least pretend to smile through my tears.

This is the first time Whitney "went" some where!  We were mini golfing at Castles N Coasters!  We didn't take her out during the winter because of too many germs and she threw up a lot and because of her feeding tube.  But when we did it was out doors and she was covered up!

We took her to the park and still do!

We took her on a beach vacation and even to a restaurant!  I do like taking Whitney out to eat.  She's needs that type of exposure and a good variety of foods to smell and look at and to see how much fun people have while eating!  I took her out with a friend the other day to a restaurant.  I had to tube feed while I was there and got a few stares but no comments!  My friend said it looked like I was "druggin" her!  Whitney is not entertained or preoccupied by food at all!  I brought a couple of toys for her but after 45 mins she was done and wanted out of there!  But it was still fun!



We took her on a vacation to Utah and Idaho in 2011!  Although she threw up in the car a few times and on her cousins toys, we still had lots of fun!



I never really got any comments on Whitney's NG feeding tube from strangers.  We to the store sometimes, got her bangs cut sometimes, and we even went to the Musical Intrument Museum and the Splash pad with the NG tube!  I plan on doing the same fun things this year with Whitney even though she has a g-tube.  

FT, OT, & ST

Feeding Therapy is going pretty well!  Whitney has been drinking water from a spoon for a really long time now.  So this week, the Therapist pulled out some applesauce.  Whitney was not interested in it and she got anxious.  We do love our therapist and she does a great job with Miss Whit.  I like recording every other session so that I can see for myself how she really has improved! Now that I think of it, Whitney use to gag and vomit with the littlest peice in her mouth!  And now she can bite and chew tiny peices of Veggie Stix with out gaging!!

Whitney has been to her Occupational Therapy about 4 or 5 times now! It's once a week and it's in the same building at her feeding therapy.  The OT is really nice.  BUT Whitney cries and cries the entire time.  It's not a scary place, no one is wearing scrubs or a white coat, and nothing hurts her!  I really don't understand it but for some reason she cries the whole time!  They are just playing with toys and Whitney will just cry and eventually vomit!  Anyway, hopefully one day she will enjoy it.  Whitney is very sensitive to new situations and new people.  That's one reason why she really needs OT. 

Speech Therapy comes every other week.  For this program, a child has to be 50% delayed in the category to qualify.  I really don't think Whitney is but they still want to work with her on her speech.  She works on Whitney's sign language and tries to get her to repeat sounds or rhythms. She doesn't repeat very many sounds, just "Bah" and "Dah" and sometimes "Mah".  Whitney definitely babbles a lot more than I've seen other kids do her age.  She also knows over 25 signs!  Like More, All Done, Up, Down, Please, Help, Eat, Sleep, Dog, Duck, Mouse, Butterfly, Hat, Phone, Shoes, Bye Bye, Hi, Bubbles, Bath, Ball, Book, Car, Cat, Home, Baby, Water, and Music. She will only do the sign when she means it or wants it.  She also knows all her body parts and the actions to a ton of songs!  I'd definitely say her brain is growing and that she is not really malnourished!

Whitney's recent Blenderized Diet:

2c. Goat Milk 300 cals
1c. Rolled Oats 300 Cals
1 banana 100 cals
1 apple 95 cals
1/4 c. Sesame Seeds 145 cals.

makes 3 1/2 cups total

2c. Goat Milk 300 cals
1/2c. Quinoa 300 cals
1/4c. Peas 25 cals
1/4c. Spinach 25 cals
1 Avocado 300 cals
1/4c. Walnuts 160 cals

Makes 3 1/2 cups total


these make about 40 calories per an oz! 

Ice Cube Tray of snacks

I saw this picture on pinterest where they put a large variety of healthy foods in an ice cube tray. I clicked on the link and it was for a birthday party, and they got the idea from someone else who also got it from some one else, whom I'm sure got it from someone else.  Anyway, basically this is not my personal idea and I don't have any links to find it elsewhere for you.  The picture looked so pretty with all the different colors of foods that I would want to eat from it!  Then I thought maybe Whitney would too!  I was running low on her snacks so I went to walmart and bought about $45 of baby snacks that I think she would be able to handle if she wanted too.  They were mostly baby snacks as pictured but I also got some rice crisps, goldfish, nilla wafers, Gram crackers, rice crispies, kix, life, Cheerios, some baby cookies, and cheetos.  I still want to get veggie straws and snap pea crisps which I didn't see at that store.  I also made a huge list of foods that I could put in the tray for the future.  Ex: cheese cubes, cucumber, corn, blueberries, strawberries, edamane, pretzels, peas, meatballs, oatmeal, quinoa, avocado, banana, carrots, sweet potato, apples, applesauce, chicken, turkey, yogurt, rice,beans, broccoli, peanut butter, olives, pineapple, and oranges.  But who knows if this idea will even work?! I know this all this money/food will either end up on the floor for the dog or I'll eat it.  Whitney might take a lick or a tiny nibble and you know what, that's what counts.  She needs to experience different flavors and textures in a happy, relaxed atmoshpere where food is fun!  I just have to keep reminding myself of that because sometimes it's get frustrating when she doesn't eat, but I do back off because she is obviously frustrated too.  So like I said, we try to make it fun!  Now hopefully these snacks will last a long time in the tray because it has the all important lid!   

 The first time I brought out the tray was around 3pm, after Whitney has had her nap and is ready to eat.  But she was in a throwing mood!  Although happy, she threw her toys on the ground. I say "no".  She looks at me like "whatever".  :)  Then I offer her a few veggie stix, which she does like to nibble on, but she immediately threw them to the dog.  So I thought, I don't want the ice cube tray all over the floor, so I didn't show it to her. 

For dinner, around 7pm, she was still in a throwing mood!  Now sometimes, Whitney does really well with eating her snacks.  But I carefully offered her the tray and she nicely picked one!  Nibbled it! And gave it to the dog.  Then she picked another one and just gave it to the dog, so I put it away.  Then she threw her other "meal" on the floor which was a paper plate of pita bread with hummus (she did lick that) and a bunch of veggie stix.  It does help the throwing food to the dog a little bit if we put the dog in her room, but she will still put food on the floor! I don't know how to stop her from doing it.  First I try to prevent it, of course.  Then I just tell her no and take the food away.  So if she takes a bit first then gives it to the dog, I don't take the food away.  But if she's just throwing it all on the floor then I do take it away. 

I do positive reinforcement when she takes a bit or lets me put the spoon in her mouth.  She loves bubbles and such.