Too much

Whitney didn't have a good day today.  She threw up her first two meals.  And fell asleep on the table while being tube feed.  She seems to keep it down when she's asleep.  We tried to take her to church today but she was just too tired.  She took a long nap.  During her 4th meal, she fell asleep at the table again.  But when she woke up she cried till she threw up.  She was pretty much grumpy all day long. 

In fact she's been pretty irritable all week. Throwing up 2-3 times a day. Taking 3 hour naps. Not much energy to even play outside long. She just wants to lay around and play the mario on the DS. Poor baby. She needs 900-1000 calories a day and with all the vomit she only gets about 600cals. Not good. All we can do it hold out and try our best till Whitney gets the GJ-tube on april 17th. And pray that this will work. Slowly feeding her intestines 24/7 will help her not vomit and gain weight.

Lactose Intolerant!! Needs New formula!!



Last Friday I received a phone call from Whitney's GI Dr. U.  She said that all of Whitney's labs came back normal expected that she tested positive for Lactose Intolerance.

Crazy huh?  I suspected that all along, the Goat's Milk is the culprit!  They don't know when it started but I'm sure she's been lactose intolerant for a least a year now.  :(  NO more Goat Milk or any milk for Whitney!  They say that since this intolerance started at such a young age that she might be Lactose intolerant forever.  Or maybe she will grow out of it. 

We don't really think that Whitney nibbling on some cheese or cheese flavored snacks will upset her stomach.  But for now, and for a while we will steer clear of those things!  A while ago, Whitney loved yogurt and would eat quite a bit of it.  It always made her sick and vomit afterwards. 

Why didn't they test for this before or even bring it up?  Who knows!?  Why didn't they suspect it or test for it earlier?  Who Knows!?  I'm just so glad we got a good GI doc on our team finally! 

Since I received that news,  I threw out Whitney's Blenderized Diet with Goat's Milk and switched to Rice milk for a few days.  A few days of a clean baby and floor!  AKA No vomit!  I just gave her poor belly a rest and gave her some fortified Rice milk with seeds and oils to increase the calories.  I also gave her lots of jarred baby food purees.  The problem with that diet is that it's not enough.  It was okay when she was under one, but she needs a lot more to grow.  Whitney needs a better source of protein, carbs, and fats. 

Whitney fits in a size 6M pants! 

So rice milk isn't really milk and it can't replace milk for a toddler unless they can eat a lot of meats, fish, and eggs.  I'm sure I could even blend those things up to a liquid (kinda gross and smelly though).  But the nutritionist and GI dr.  want to try a new formula called Compleat Pediatric.  It has some real foods in it.  From a medical stand point they just need to make sure Whitney (who is extremely underweight) is getting all the nutrients she needs.   And I completely agree with them at this point.  Although I'm sure I could do it with a blenderized diet,  I don't want to risk it.

I was so looking forward to making my own Rice Milk (which is pretty easy and fun), and my own Oat milk, and Quinoa Milk.  But it's just basically watered down grains. How or why is it even considered milk?  Plus I just bought a bunch of frozen veggies and fruits to puree.  But this formula is just a bridge.  It needs to get Whitney gaining weight!

So far she has been tube feed with it five times.  First at dinner time last night.  Then around 11pm.  She threw that up and we were pretty sad about that.  So I actually stayed up and feed her it again around 12:45am so that she would be so hungry.  Then she got it for breakfast this morning.  She had a bath.  Tube feed three hours later and went to bed.  With no vomit!  I have to give her 5 ounces 6 times a day for her to get about 900 calories a day.  It is thin enough to go through the pump and bag,  but I'm so use to doing bolus feeds via syringe.  I have to sit with her at the table anyway so it's just easier to not mess with a pump that always errors and such.  Doing this formula is a little to easy on my part though!  I still wish I could blend up her foods! 

I'm so relieved that this might work well for her.  We are still considering doing a GJ tube but not any time soon.  The dr.'s were even talking about doing TPN for Whitney, which is total nutrition via IV!  Scary!  But we really need her to grow and development normally, mentally and physically.  I'm willing to do anything for her at this point.  But so far this formula seems to be working well, but I won't jinx it,  it's only been half a day!! 

Now I'm just dying to post a couple of candid pictures from our Three Tubie Girl BFF's Photo shoot last weekend.  It just a sneak peak of how cute they are!  The professional pictures are so much better so I will wait to post those and the whole adventure when I get them!  We all had so much fun! 

Whitney loved playing in the dirt and flowers!  They are all such princesses!



 Whitney was very entertained tearing the flowers apart,  Raya was chewing on the balloon, and Lily was very fascinated by her! 

oh dear

well Whitney is not doing much  better since the endoscopy.  We even had to stop the erythromicin on Sunday because she was throwing up so much.  By Tues she was back to once a day.  Yesterday she had her synagis shot.  Probably the last one of the season and forever.  Which I'm pretty much okay with since I hate traumatizing and torturing her.  I think next season she will be strong enough to handle a sickness. I hope.  Today though she did throw up three times.  Twice at dinner while she was eating some Ramen.  She was doing so well, too, then she gets a long piece and starts gaging and vomits.  She still wanted the soup and yet again gags and vomits more.  She still had a whole belly full of liquids. She took a few more bites of the noodles then pushed it away.   Then I finish feeding her her meal and she took a little bath in the sink.  She went to bed pretty quickly though.   We have an appt with the GI on tues.  The dr. knows that I've been calling and asking about Whitney getting the GJ tube so we will discuss it then.  I'm desperate for her to gain some weight.  She's only gained 2oz in 6 weeks!  That's pretty much called losing weight.  It makes me sad to see how skinny she is.  At least now we now why she has such slow motility and keeps vomiting all the time. 

Also Whitney had OT this week and she did great.  It was a brand new therapist since our previous one went on maternity leave.  I was so surprised how well Whit did!  I don't know why she disliked her old OT so much though.  I hope to keep with this OT for a while now!!

  

Upper GI Endoscopy/ EDG

FYI this story is full of tears and vomit so if you don’t want to read it, I’ll summarize first. We got to Phoenix Children’s Hospital in the morning for Whitney’s upper GI Endoscopy/ EDG (esophagogastroduodenoscopy). Whitney recovered like a champ. They took blood work, biopsies, and did Botox injections around her pylorus (is the region of the stomach that connects to the duodenum, the beginning of the small intestines). Whitney’s stomach is in a very odd “J” shape which could be why she cannot digest all of her food causing chronic vomiting. If the Botox and meds don’t help then we need to consider other options. If you want more details then please read on!

This morning we were going to feed Whitney a couple ounces of food around 3am because that was the last time she would be able to have food in her stomach. I didn’t sleep to well at all because I was so anxious so when my alarm went off, I got right out of bed to go feed Whitney. But she was already awake, coughing. She looked like she was going to puke so I got her out of her crib and got a towel ready. She did of course, which I thought was odd because she usually does great at night. Eventually Thomas woke up and got us cleaned up and new clothes. Whitney threw up again, poor thing. So Thomas gave her a blessing of healing and comfort. Then we let her sleep in our bed without feeding her.

In the morning, Thomas gave Whitney her water and meds while she was still sleeping. Then he went off to work. Whitney and I got up around 8am, at which time I gave her her last two ounces of water that she could have before the procedure. I got already to go and finished packing. I didn’t bring anything much different than I usually do for appointments besides more extra clothes and more food (which I didn’t end up needing much of either). Plus I brought a blanket and pacifier for her and a book for me. After I was mostly ready, I held Whitney on my lap while we watched Elmo World on Sesame Street. I love snuggling her!

didn't want to play in the play room with the other kids

They say for us to check in at 9am, which is two hours before the scheduled appointment. So after much experience, we (my mom and I) left the house just after 9am and we got to admitting at 9:40am. I signed in and they put the ID band on Whitney’s leg and she started crying. Then we walked all the way across the new main hospital to the older part of the building for the procedure. She got weighed and measured. Then we waited in a small room with a hospital crib and TV. We changed Whitney in to her hospital gown and pants; this was the first time the pants didn’t fall down! We turned on Tangled while were waiting but didn’t watch much of it because we had several nurses and doctors come talk to us about the procedure. After a long while, Whitney stopped crying and I put her down to walk around. She didn’t even cry when some of the Doctor’s came in to talk as long as they didn’t come near her. They all said that they would take good care of her.

Eventually, they walked us back to the procedure room. My mom was holding Whitney. The nurse took her back and Whitney started screaming. It was so sad. I didn’t want to go back with her till she fell asleep because that makes it even worse for me. Whitney would be scared no matter what. Then we went out the waiting room. There was quite a few other out there waiting. I started praying for a while then got out my Sudoku book. They took her back around 10:50am. Around 11:45am the Pediatric Surgeon Dr. G. came out and talked to us. She said everything went really well. She changed out the Mic-key button to a Mini button. Those ones are harder to put in. It looks great but I’m still not use to it! Dr. G. said that Whitney’s stomach is definitely a big “J” shape vs. a lima bean shape. It just grew that way. It could definitely be contributing to Whitney chronic vomiting because the food just cannot exit as it should. She has seen this before but didn’t think it caused many problems for other kids. She doesn’t think it’s caused by Whitney’s CDH issues. But will ask around about it. There is not a surgery to fix the shape of the stomach. She doesn’t know it the Botox injection will work or not because of the shape of Whitney’s stomach. Talked about a lot of different options to help Whitney stop vomiting and gain better weight. Nutrition is very important and this young age for brain development. Dr. G. doesn’t really like any of the options but they are a Nissen fundoplication, GJ tube, or a J tube. The Fundo (where they wrap part of the stomach around the top of it to prevent reflux/vomit) messes with all of Whitney’s scar tissue and CDH repair surgery. The GJ tube (it’s still one tube but as an extra port with a long tube going into the duodenum and small intestines) will have to be placed surgically for her because of her odd stomach shape, vs. just doing it in radiology. And there are many different complications to that. And the J tube (a separate tube attached to the small intestines) is also a surgery just like the G-tube but parts of the intestines could get wrapped around it. It’s not natural to feed the small intestines so it has to be a very special formula and goes in a very slow continuous rate. These are options to be discussed later; we’re not in any hurry to jump right in to these surgeries. Dr. G. told that Whitney is not any more at risk for these complications that any other child because she is survivor and a miracle. I am really scared to do any of the other options but I am willing to do what it takes to help Whitney thrive.

Then the GI Dr. U. comes out to talk to us. She said that she took a few biopsies to test for a few basic things. She also took some blood samples to test for other things. Whitney’s esophagus looks normal and so does her stomach. She couldn’t even get to scope into see her small intestines because of the shape of her stomach and pylorus and duodenum. She did the Botox injections even though she’s not sure it will work but it’s worth a shot. She said to stick with the Erythromycin to add in digestion. I told her earlier that it had made her vomiting worse which is why she thinks that Whitney’s odd stomach shape is a big contributor to vomiting. So hopefully with a paralyzed pylorus and the stomach being contracted more (Erythro) and it being tighten at the top sphincter from the Bethanechol medicine that soon Whitney will stop throwing up and gain weight. If it does help then we are looking at doing this procedure every two to four months. If it doesn’t work then we need to consider our other options. Dr. U thinks that Whitney’s stomach is like this because of her CDH issues and abnormalities and scar tissues.

Ready to go home!

So, so far our understanding is that it’s an anatomical issue. Even though Whitney has vomited her entire life thus far, her stomach has grown to be a big “J” shape making the food settle at the bottom and it can’t exit. So when it’s time to feed her again she still has a lot of food in her stomach and will just vomit. She doesn’t even seem to be in much pain before she throws up. It’s just weird and I hope we can find a better solution to help Whitney. This also further confirms to me to she is not able to be tube weaned any time soon.

Insomnia

So after we talked to the Doctors we were finally able to go back to Whitney. She had already woken up and was hugging a nurse. I then held her and she was crying a lot but I rocked her sleep again while the nurse was telling us discharge info. They said it is hard to wake up from anesthesia and disorientating. After about 15mins in my arms, my left are went numb, so we feed her a small amount of food. Then I gave her to mom to hold. Whitney was still in her hospital clothes and we did not want to wake her up to change her! So after about 30mins or so we decided to leave. We wrapped her up in her blanket and told the nurse we were going to leave now. The escorted us part of the way out. Whitney woke up but didn’t move at all. So yes, we did leave with their hospital clothes! Ha-ha! Sneaky! Don’t tell! JK! We are planning on bringing them back for Whitney’s next procedure!

My Beauty trying to smile

On the way home my mom feed Whitney two more ounces of food and one ounce of water. Whitney was pretty whiney the whole way home and couldn’t fall asleep. Right when we get home...vomit, everywhere, on everything. Nasty green vomit. Ha-ha! We spent the rest of the day trying to relax. Whitney threw up a couple more times. Tried to take a late nap. Then she stayed up till about 11:45pm! Crazy! She got about 16oz of food today and threw up at least half of it. She kept down her 12am feed but woke up around 4:30am and slept with me till 830am! Very strange sleeping schedule for her so hopefully tonight will be much better.

threw up on our bed so we set up blankets and pillows in the living room

All in all, even though it was scary and traumatizing for Whitney, she did well and came through just fine! We are very grateful for amazing doctors and specialist and nurses and for the technology to help our precious daughter.

Whitney roamed around all night till she finally settled down right by her daddy! so sweet!

Toddler feeding Recommendations

I go through these phases. 

I read about "normal" toddler feeding recommendations of amounts and foods and think cool I'll try this or that and maybe Whitney will like it. 

After a couple of days I think what is the point!  It's a waste of food, time, and money.  In one minute it will all end up on the floor, or she cries and cries till I take it away and give a toy instead. 

Later, I read more about what "normal eating kids" like to eat and how they eat and when they eat and I will get all depressed.  "What's the point" I remember that she will not touch it.

Then, after another few days, I think that I would like to try some of that stuff and get all excited and go out buy a bunch of things for her to try.

Maybe she'll like it or seem interested in the new foods at first, and get my hopes up again.  She might take a bit of yogurt or apple sauce or play in the noodles.

In a couple days though she'll cry and cry again about the food. 

Then the cycle starts all over again.  But sometimes it changes, it can go fast or slow, and is very unpredictable.

I don't know if she doesn't like it because she's not hungry, she's afraid of it, or just doesn't want it. 

I've tried for about 4 or 5 months now (ever since she's been on the blenderized diet) to figure out a good feeding schedule.  Sometimes I think that if she doesn't throw up, then she is still hungry and not satisfied.  Or is she does throw up then I feel really bad about giving her too much food.  Sometimes I can't tell if she threw up because it was too much food or because she was bouncing or jumping around too much. 

She obviously has very slow motility and doesn't help at all at trying to gain weight, because she can't handle much volume. She still vomits 1-3 times a day and it doesn't even phase her anymore.  She'll just be sitting or standing there not crying. Just waiting for me to come clean it up. 

SO my paper here says (for eaters) offer 2-3 snacks and 3 meals ever day at 2 1/2 to 3 hour intervals.

I feed Whitney every 3 to 3 1/2 hours 5 times a day. 

Eat 150 to 200 calories at each meal and snack! 

I feed Whitney four to five oz of her 30 - 40 calories per oz meal.

The paper also says stuff like offer all the different food groups at different times.  Offer at least three different tastes and three differetn textures.  Offer sweet tastes at the end of the meal.  Do not force feed toddlers.  Avoid distractions during meals like tv and toys.  Make feeding fun!  Build things, change things, use food coloring and cookie cutters, be creative.  BTW there are so many cool blogs out there with great ideas about being creative. 

We play with the teddy grahms and she'll nibble of a leg or ear.  We play with the gold fish crackers and she might taste it.  So honestly, I'm the eating all this junk!

Well making it fun is obviously my goal but when I spent so much time and effort and money and it ends up on the floor, then I get back into my "phases"!

From MY personal view point, feeding "normal" kids is so dang easy!  And I have no empathy for "picky eaters" or kids who don't like tomatoes.  Or kids who only eat junk food, at least they are eating enough to gain weight and not die!! 

I do like to hear about the kinds of things "eaters" eat and when and how often so that I can get an idea of a "normal" kids eating habits and routine. 

Also I've pretty much "given up" on the whole praying for Whitney to eat.  I've been doing that for way over a year and nothings changed.  So again, pointless. She'll eat when she's ready, not because I want her too. 

Again I'm very grateful for the feeding tube.

Whitney's recent blends:

Fruity Blend:

2c. Goats Milk 300 cal

1c. Rolled Oats 300 cal

1/2c. strawberries 25 cal

1/2c. mixed berries 30 cal

1/3c. crasins 130 cal

1/4 sesame seeds 200 cal

Veggie Blend:

2c. Goats Milk 300 cal

1/2c. Brown Rice 320 cal

1/2 Avocado 150 cal

1/2c. peas 60 cal

1/2c. spinach 15 cal

Both blends make about 3 1/2 cups (more or less)  and she needs to get all of within two days. 

Whitney's tube feeding schedule:

(food is her blenderized diet alternated between the fruit and veggies)

730am 1oz food 2oz Water & meds

800am 3 oz food 1 oz Water

THERAPY

1100am 1oz food 2 oz Water

1130 am 4 oz food 1 oz Water

NAP

230 pm 1oz food 2 oz Water & meds

300pm 4 oz food 1oz Water

ERRANDS/CHORES/PLAY TIME

600pm 1 oz food 2 oz Water

630pm 4 oz fodd 1oz Water

BED TIME ROUTINE

1000pm 1 oz food 2 oz Water & meds

1030pm 4oz food 1oz water

If I wake up late, the times change.  If she vomits, the times change.  If we have appointments, the times change.  If we're lucky, we keep a really strict schedule. 

Glad I could write my "thinkings" down. :)

Water Beads & Ramen Soup!?

Also today, besides the three vomits... We played in water beads and ate some ramen soup.  I really think that the water beads helped prepare her for the soup! 

At first Whitney was extremely nervous about what was in her sink.  She wouldn't even put her feet in it!  It was kinda funny how she had her feet at the very tip of inside the sink.  Eventually I got her feet in it,  just pretending to bounce on the beads.  Then I moved up to putting them on her legs.  And the her arms and hands.  Whitney then decided it was safe to grab them!  I put her whole body in the sink so she could reach them better but she was very nervous again.  Then we started scooping them up and pouring them out!  It was fun! 

After the water bead play, I made some Ramen Soup, even though I was a little late getting her meal started.  I thought that maybe after all that sensory play, she'd be more comfortable playing in the soup.  It worked!  First time in a while she actually took the spoon on her own and feed her self some bites!  She was very focused and quiet.  Maybe she was also a little hungry since she threw up her last two meals!?  I was so proud of her!  And she didn't even ask for bubbles (her reward)! Any ways, most of it ended up on her chair and according to her throw up two hours later, she only swallowed about 10 pieces.  So enjoy the videos of her eating because I'm sure it won't happen anytime soon again!  

Three times today!

The first time was about an hour after her 4oz of fruity breakfast.  She was on her Great Grandmas bed jumping around.  I leave for a minute then hear her coughing.  Come back in and she sitting a pile of barf.  So I wash her and the sheets. 

The second time is pictured below.   I had to feed her during her nap which woke her up.  She stayed in her crib for a while, I was hoping she'd fall back a sleep so I could shower but no!  I got her out.  Then I decided to make a random "lunchables Pizza" I had. I just made in on the floor and she was sitting by me and before I could take a bite...BAM.  Vomit everywere! 

 

She couldn't/didn't want to even move afterwards!  Just sat there saying Uh-Oh!

 

And the Third time today was about 2 hours after her meal. I left her naked for most of the time until she wanted to go outside.  It was cool and windy.  In Whitney's rush she even fell down and cried till I put her in the sink to play with water.  I asked her if she still wanted to play outside and she gladly got outa the sink to go get dressed.  (It's surprising that that did not make her vomit BTW).  So we spend a while playing outside together.  We come in to get some water.  Whitney climbs up the stairs because the gate broke.  While drinking from her straw cup she basically aspirated, choked, coughed, burped, and threw up.  On the stairs, then the tile.  All over her outfit. 

Any ways, all three had different "triggers" and I'm surprised it happened from those triggers.  Yesterday she didn't vomit at all!  Sometimes I just don't get this girl!  :)  She is on a new med call Eryped (Erythromicin)  to see if that will help her dysmotility.  They eventually want me to feed her more but I want her to stop throwing up first! 

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