Eating New Foods

Noah has been experimenting with eating new foods this summer.  He continues to love anything that is creamy and completely devoid of texture {yes to yogurt, no to applesauce} as well as anything that easily crumbles in his mouth {graham crackers, fish crackers, animal crackers}.

In an attempt to expand his very small repertoire of food he chooses to eat, as well as introduce new flavors to his virgin taste buds, Bubs and I have been scouring the grocery store for things to eat.  Noah will typically choose a box based upon the cartoons on the front and then not like the contents inside {perhaps an introductory lesson on marketing will be in his future}.  We have discovered, however, a few new foods that he enjoys.

Behold, America's favorite cookie...the Oreo.  Bubs loves to twist the cookies apart and lick the creamy filling out.

And Bugles...America's stinkiest snack food.  Auntie Nessa taught him how to stick them on his fingers and pretend they are long nails.  Noah, however, pretends they are light sabers.

With every new food that Noah tries, I see a glimmer of hope, in the very, very distant future, that my Little Man might be one day be g-tube free.

Eating Progress

Most days, eating is a struggle for Noah {as well as for us}.  Let's be honest...Bubs just doesn't like it.  He finds little or no pleasure in how things taste and struggles with texture, volume, and an ever-present gag reflux.

During meal time, we encourage Noah to eat graham crackers {in fun shapes that he can tolerate} or yogurt {which he has easily mastered} before we give him his blended food through his g-tube.  Let me tell you...all meals involve bribes with the iPad or iPhone.   Seriously, where would we be without those?!?  Noah LOVES to play games and will typically do just about anything for some "technology time".  That's not to say, however, that there still isn't usually a struggle to eat.

On occasion, Noah happily eats his food...and dare I say enjoys it.  Other times, however, meals look like this...

I just keep repeating to myself, "One step at a time..."

Drinking

Noah has been working with his OT for the past several months to drink from a straw. Do you know how hard it is to teach someone to suck? Let me tell you, it's very hard!  Noah never really learned how to suck as a baby. 

Today, I filled Mr. Man's cup with juice and he promptly started to cry. He wanted the "rectangle cup". After quite a bit of time trying to figure out which cup Noah wanted, Kc suggested that he might want a juice box. I handed my stubborn, crying child the juice box and waited for the frustration to swell as he tried to drink the juice. I rolled my eyes and gave Kc a knowing glance.  I just knew this was going to end in disaster.   

Well...to my utter astonishment, Bubs put the straw in his mouth and took a big swallow. 

What?!? When did he learn how to do that???

Noah proceeded to drink TWO juice boxes today. 

This boy continues to surprise me on a daily basis.

Eating

Recently, Bubs has started eating...I mean really eating!

That's right, people, eating!

You know...the simple act of putting food into the mouth, chewing, and swallowing for nourishment.  That thing we do multiple times a day with ease and pleasure.  

Eating!

Well, now Bubs is doing it too!

If you know anything about Mr. Man, you know that he has been g-tube fed since he was six months old.  He has been working with an occupational therapist since that time in order to learn how to control his tongue, eliminate his gag reflux, and tolerate objects in his mouth.  While this road has been long and winding, I can happily report that Bubs is willingly putting {selected} food into his mouth.

It all started with frozen yogurt. 

Let me tell you, Mr. Man loves him some fro-yo.  It is smooth, creamy, and sweet! 

He has moved from frozen yogurt to yogurt to pudding.  He enjoys when I dye the vanilla pudding fun colors {green for St. Patrick's Day or purple for Silly Saturday}.

He even enjoys making his own pudding...banana is his favorite.

Bubs is also quite in love with Angry Birds and Star Wars!

Bubs' therapist is super impressed as are his parents.  The fact that Mr. Man is putting anything at all in his mouth is MONUMENTAL!  We are currently working on adding texture to his foods.  He tried apple sauce the other day and was NOT A FAN!  There were definite tears on both our parts.  One day at a time...one step at a time...this boy is going to be eating with the best of them!

We've Got a Biter

Stop the presses!

We've got a biter!

A biter and chewer!!

A biter and chewer and swallower!!!

Of Graham Crackers!

Can you believe it?

At Noah's last OT session, he learned to take {miniscule} bites of crackers and chew and swallow them.  In the past, Bubs would FREAK OUT whenever he had anything with texture in his mouth.  He would immediately wipe the offending food out with his fingers or use his shirt sleeve to scrape it off his tongue.  Yesterday, however, he willingly took bites of graham crackers and allowed the crumbs to stay in his mouth long enough for him to swallow them. 

Oh, my, goodness!!!

Kc took plenty of videos at the OT session and Bubs just loves to watch them.  Here he is watching the videos and doing his "homework" with Daddy.

Checking to make sure he's doing this "eating thing" correctly.

We are so proud of our Little Man and so thankful for his amazing Occupational Therapist.  We've still got a long way to go but are so encouraged by these little steps forward.

Big Boy Bed

Almost two years ago, we started using a feeding pump to give Mr. Man food while he slept.  We found that he tolerated feeds much better while he slept {little did we know at the time that dairy and soy were the enemies of Noah's tummy}.  Later, after we realized that we needed to blend his own food to eliminate the evil dairy and soy, we struggled to cram everything he needed {protein, carbs, vegetables, fruits, fats, calcium, vitamins, minerals, water, calories, etc} into a small enough volume for one day.  We have been tinkering with his feeding schedule to try and mimic a "typical" toddler so he gets a pretty big breakfast before school, a large lunch after school, an afternoon snack, and a large dinner before bed.  He is then put on the pump at night {from about 8:00 to midnight} and given the rest of his food.

About two weeks ago, Kc {who blends all of Noah's food every night} thought he could cram everything into the daily feeds and eliminate the overnight pump.  What?!?  How awesome would that be?!?  Well...we've been at it for two weeks now and it's been quite the success.  Mr. Man wakes up quite hungry now and is eager for his breakfast and all other feeds have been going quite well.

While Bubs was on the feeding pump at night, he had to be contained in his crib.  We could not risk him getting out of bed in the middle of the night {or even in the morning} and pulling out his g-tube because it was attached via tubing to the pump.  Mr. Man has pulled out his g-tube before {all inflated and everything} and let me tell you that it is quite painful.   Now that he is off the pump at night, however,  we could finally convert his crib into a toddler bed.

Oh...my...goodness!

Is he ready for this?  Are we ready for this?  

Well...here goes nothing.

On Saturday, Kc took the front off the crib and miraculously transformed it into an "easily escape-able" toddler bed.  All of Noah's fishy friends joined in the fun!

{Charlie 2, dolphin, beluga whale, Nemo, humpback whale, Squirt, stingray, great white shark, hammerhead shark, sea horse, Charlie}

Bubs was SOOOOO thrilled with his "Big Boy Bed"!  He kept running and jumping onto it, laughing the whole time.

Before bed time, we talked extensively about the rules...once we say prayers and he lays down, he is not able to get out of bed until Mama or Daddy-O come and get him.   Our little "rule follower" said he understood so we read books, said prayers, and kissed him good-night. 

I am pleased to report that Mr. Man has {so far} followed the rules and doesn't get out of bed.

He does, however, roll/fall out of bed at night.  Insert quite chuckle.  Thankfully there are pillows on the ground and the bed is quite low as it is so Bubs doesn't wake-up...he is a NICU Baby after all {he can sleep through ANYTHING}.  Hopefully his little body will learn to adjust and roll the other way during the night.

Our Little Man is growing up so fast...can you believe it???

Food, glorious food!

Did you hear them?  The angels.  They were singing today.  If you were in the 93720 area I'm sure you did.  The heavens actually opened up to allow the "blenderized diet" angels to come down and deliver a little gift.  A little gift from heaven. {perhaps a tad dramatic}

If you remember, back in September, we started Noah on a dairy/soy free diet.  So far, after 216 days, we have had tremendous success.  Bubs has significantly reduced his vomiting {only once in a great while...or if he accidentally gets soy...but that's another story for another time} and is growing and thriving on the diet we've created for him.

The problem with our old way of preparing Noah's food {putting loads of food into the crockpot and cooking the living daylights out of it and then blending and straining it} was that we were loosing so many good nutrients as well as tons of fiber by cooking and straining it.  I did quite a bit of research online and found several blogs and websites of families with g-tube fed kiddos.  They all hailed the benefits of an amazing blender called the Vitamix.  Kc and I decided that our Mother's Day and Father's Day gifts to each other would be in the form of a blender.  A Vitamix Blender to be exact.

Well...the heavens opened up...and it came...and I am in LOVE.  Pure and utter love.  L.O.V.E!

It is truly amazing!  While it is not the quietest thing around {sounds like you are mowing the lawn in the kitchen when you turn it on} it does the most awesome job of pulverizing food and making it thin enough to put through Bub's g-tube.   

Our first experiment was with chicken breast, rice, kidney beans, carrots, broccoli, cauliflower, kale, bananas, peaches, and rice milk.  All the fruits and veggis were raw when we put them in the blender.  Kc flipped on the switch and let the blender do it's thing for about three minutes.  When he poured the "liquid gold" through our finest strainer...it went through effortlessly.  Can you believe it?!?  We have had ZERO problems with the food flowing through Noah's g-tube or going through the pump. 

 

It is simply the MOST WONDERFUL piece of technology in our house.  If there was a fire, Kc and I would grab Noah, Sierra, Kitty, our important documents, and the Vitamix.  It is simply that great!

We decided that Bubs couldn't have all the fun, so for dinner, Kc did a bit of chopping

and threw it all in the blender.

  

Meanwhile, I did a bit of toasting in the oven

and we put it all together.  Pure harvest bliss!

Excuse Me Waiter...There's Food In My Bowl!

Several months ago, September to be exact, Noah started seeing an occupational therapists for his sensory and feeding issues.  We are lucky that the appointments are on Mondays and Kc is able to take Bubs.  Our therapist is so enthusiastic and methodical with Mr. Man.  She knows exactly how much to push him and does a great job teaching us how to gently push him as well.  

Two weeks ago, Noah's therapist put water in a bowl and "taught" Noah how to put a spoon in the water and then touch it to his tongue.  Noah gets a turn with his own spoon and then we get a turn with our spoon.  It's great that Bubs gets some control and can feel safe with his own spoon and then we can make sure he gets the practice he needs. 

Last week, the therapist added just a bit of pureed peas to the water.  Not only is Bubs getting a touch of liquid on his tongue, but that liquid has some taste to it.  So far, we've been able to practice a few times each day and our Little Stinkpot is doing better and better.

Noah's turn to put the spoons in his mouth.

Mama's turn to put the spoon in his mouth.

 

Nobody's turn to put the spoons in his mouth.

 

We've got a long way to go, but the fact that Bubs is putting wet, pea water spoons in his mouth is just HUGE!!!!

Twenty Months

Noah continues to do VERY well on his dairy/soy free diet. We have now blended and strained every vegetable we could find as well as seafood, pork, turkey, beef, and chicken into his food. We are working hard to figure out exactly how much to feed Mr. Man as well as how often. Because Noah doesn't understand hunger and is unable to tell us when he is full, we are relying on his growth and amount of wet/dirty diapers to help guide us.

Noah's current stats are:

Weight: 29 pounds
Height: 33 inches

The Great Food Experiment - Day Eleven

Things are going GREAT!!!!!!

It's been a whole week since Noah has vomited.

That's seven whole days...one hundred sixty-eight hours...ten thousand eighty minutes...since I've seen the wave of nausea wash over my Little Man's eyes and I've had to quickly grab for the nearest towel {of which we learned to have plenty around}.

We've never even had two days in a row without one puking episode from Stinkpot, so this is HUGE people! HUGE!!!

I think we can unofficially declare that Noah is allergic to/unable to digest dairy and soy. We'll just add that to the uniqueness of our Little Man!

The Great Food Experiment - Day Five

I am happy to report that Noah seems to be doing quite well on his new diet. In the past five days he has only vomited three times. That's UNBELIEVABLE!!!!! We've had single days where he has vomited more than that.

We continue to blend chicken and vegetables and are getting better at straining it so it is thin enough to flow through Noah's feeding pump.

We traveled out of town this past weekend and had a much harder time feeding Noah. In the past we would just bring a can of formula and scoop, add water, shake and feed. This weekend, we traveled with several large containers of blended food and ice packs in an adorable Picnic Thermal Tote {available through Thirty-One Gifts}.
We had to keep his food refrigerated and only pour what we needed at each feed.

We have been introducing Noah to different vegetables each time we make a "batch" of food and so far have not seen any allergic reactions.

I look forward to seeing how Noah does over the next week!

The Great Food Experiment - Day One

Ever since Noah was born, we have been battling his excessive vomiting due to GERD. A few months ago, we were so excited with the new medication Noah had started on. It gave us fantastic results early on, but slowly, ever so slowly, the frequency and volume of Noah's vomiting began to increase.

In the past, we have tried switching from Noah's dairy formula to a soy based formula with no significant results.

After a tremendous amount of fretting and stewing, loads of talking and discussing, tons of advice, and a huge amount of research, we came to the realization that we needed to try a dairy-free and soy free diet with Noah. A significant number {can't remember the exact percentage} of babies with diary allergies also have soy allergies.

And so...the Great Food Experiment begins.

Day One.

I put a roasting chicken in the slow cooker over night and woke up to a wonderful smell wafting through the house as well as chicken that was falling off the bone. Kc carefully removed all the meat, fat, and skin {Noah will need the calories} and discarded the bones.
I returned the precious meat to the cooking juices and began to blend the entire mixture in a food processor.
What an unusual sight and pungent aroma.
To add to the chicken, I steamed a blend of vegetables that we have already introduced to Noah and gave them a whirl in the food processor with some water.
As I was blending all the ingredients, Kc thought our kitchen looked like Kitchen Stadium and he imagined Masaharu Morimoto or Bobby Flay creating a fanciful dish with the puree.

I present to you Les Legumes et le Poulet.
I am happy to report that Noah has not vomited at all today and only felt nauseous during one feed. We are committed to trying dairy and soy free for two to three weeks {the amount of time it takes for dairy proteins leave your system} and hope it makes a difference for our little man.

We are experiencing some serious difficulties with this new "formula" and Noah's night time feeding pump. I am certain, however, that Kc will be able to "make it an offer it can't refuse". Stay tuned to see who "reigns supreme".

Medical Updates

The past two weeks have been VERY busy for the Jacksons. Noah has had five doctor's appointments {two of them out of town}, we have gone on two mini weekend vacations, and have had countless play dates and BBQs with family and friends. Here are some updates on what we learned at the doctors appointments.

Plastic Surgery:

Noah's hands continue to heal quite nicely. They were wrapped continuously for two weeks post surgery. After those initial two weeks, we unwrapped his hands nightly, gave him a bath, let the hands dry out, and then wrapped them back up. As of his appointment last week, Noah's right hand is doing excellent and doesn't have to be wrapped any more. His left hand has a bit more healing to do and needs to continue to be wrapped. Although, as you can see from pictures in previous posts, we've taken liberties in how long we let his hand "dry out".

Ophthalmology:

Last week, we headed down to Children's Hospital Los Angeles to see Noah's eye doctor. It was a LONG trip but Noah did well in the car. The Dr said Noah's left eye continues to look good and so we're going to continue his current eye drops. He also decided that Noah needs glasses. While Noah is a bit near sighted, the primary reason for the glasses is to protect his eye from possible injury. Because he's only got one, we need to do everything we can to keep it safe. We have ordered the glasses {very cute plastic children's ones} and they should be here in the next week or so.

Otolaryngology:

After Noah's last scope of his trachea, our ENT Dr referred us to a specialist at Children's Hospital Stanford. We drove up to Stanford yesterday, and once again, Noah did quite well in the car. We met our AMAZING Dr and were quite impressed with the clinic. The first thing they did was stick a long camera down Noah's nose straight into his trachea so they could get a good look around {while he was awake}. Needless to say, Noah DID NOT like this. The first thing the Dr saw was how large Noah tonsils were. "Those have got to go," he exclaimed. He was also able to see that Noah's vocal chords were "trying" to move while he was screaming and crying. "Very encouraging," he said. We discussed the MAJOR surgery to re-build Noah's trachea and possibly take out his trach. There is about a 70% success rate with severe cases like Noah. We head back up to Stanford on September 8 so the Dr can do his own scope and take out Noah's tonsils and adenoids. At that point, he will be able to make a plan whether or not to proceed with Noah's laryngotracheoplasty.

I am so blessed to be on summer vacation and not have to take days off work for all of these appointments. While I would much rather be a SAHM {stay at home mother}, I have to give thanks for the job I have, the flexibility it allows us, and the health benefits it gives Noah. We've got some major surgeries ahead of us, so I'm hoping to make the most of this summer and have as much fun as possible!

Happy Thanksgiving

According to Noah's G-Tube button, Mr. Turkey is done.* Have a very Happy Thanksgiving!


*No babies were harmed in the making of this post.

New Feeding Pump

During the night, Noah is put on a pump which slowly puts food through his G-tube directly into his stomach. We have actually been using the pump at night for several months because we found Noah tolerates food much better while sleeping. Before he has his fundoplication surgery, Noah would throw-up an ounce or two of food after every feeding during the day. At night, however, he would only throw-up once. In order to help him gain weight, we slowly fed him all night long. His old Kangaroo pump attached to an IV pole and was quite large and difficult to travel with...although we took it on every overnight trip we've been on.
On Friday, a nurse came to the condo and traded his Kangaroo pump for a new portable pump. We are SO thrilled with how small and compact it is. It is so portable, that Noah can strap it on and carry it himself - although we just put it next to his crib at night.It truly is the little things in life that make me smile!

NG Tube Out

On Friday, the day of Noah's big surgery, he was NPO. Seeing as how he would not need his NG tube anymore, we let him pull it out. Generally, we had to watch Noah's little fingers because they LOVED to grab his tube and pull. It was considered a good day if we didn't have to put his NG tube back in because he either pulled it out or he puked it out. On Friday morning, however, I pulled the tape off his cheek and let a very hungry Noah pull.

In order to watch the movie, you're going to have to rotate your computer counter clockwise...or just tilt your head. I used my digital camera to video Noah and cannot figure out how to rotate the movie. Sorry.

G-Tube Feeding

These past two days at Children's Hospital have been pretty routine. Our nurses have been wonderful and Noah's monitors have been very kind and are not beeping unnecessarily. Kc and I have learned how to feed Noah through his new G-Tube. It looks just like the "plug" on a beach ball – you know, the thing you would use to blow up the ball.
We use special tubes that lock into the G-Tube. So far, Noah has tolerated his feeds quite well. He started out with 30 ml (that's one ounce) every three hours and we have added 5 ml to each feed. We're hoping to get up to 100 ml (just over three ounces) per feeding. If Noah can tolerate that amount, Dr. Hodge says we can go home tomorrow. Yippee!!! Noah enjoys "helping" me hold the syringe. The most amazing part about this weekend has been the lack of vomit. Noah normally pukes after every feed. We wake up at least once every night to clean him and the mess he makes. He goes through a minimum of four changes of clothing every day. Because of the fundoplication procedure, Noah now smells like a baby rather than acid and curdled milk. It has truly been a glorious couple of days.

Success

Thank you for all of your thoughts and prayers. Noah's surgery went well today. He now has a Mic-Key G-tube in his little belly and the fundoplication procedure was a success. Dr. Hodge was encouraged by how "low" the colon was and said it was easy to attach to his anus. It was a glorious moment when I finally got to hold him after he came out of recovery. He is sleeping away right now...with the help of some pain medication. Hopefully tonight all three of us will sleep like babies.

Next Week!!!

Yesterday was a bit of a discouraging day and we didn't get home till very late. I actually had to give myself permission NOT to blog. I am sorry to all of you who logged on this morning and did not have anything to read.

These past two days, Noah has had several visitors. My good friend Debbie came Monday morning and today another friend, Lisa, came in the morning and Joanie came in the afternoon. My little man is being spoiled by so many people. He is loves cuddling and sleeping in the arms of lovely ladies.

Dr. Lin, a cornea specialist, came and saw Noah yesterday. He said that Noah's left eye is a "very difficult case". Unfortunately if the capillaries continue to encroach on his cornea, he will loose his sight. There is a brand new clinical trial that Noah may qualify for. It is for a drug that is currently given to diabetes patients but has not been tested on infants. We'll get more information on it later this week.

Noah had several ups and downs with his eating these past two days. He seems to eat fairly well for me but has difficulty at night when the nurses feed him. Yesterday, the doctor was still worried about how much Noah was spitting up and was talking about putting in a GT tube (a feeding tube that goes from the abdomen directly into the stomach). Today, however, I had a long "chat" with the doctor. I explained to him that Noah is eating VERY well with me and only spits up when he burps. I convinced the doctor to increase the amount of food Noah eats from 50 ml to 60 ml (that's 2 ounces). If Noah can gradually make it up to 70 ml in a feeding and keep the wet burps to a minimum, he can go home some time next week!!!! We are SO excited!!! We can't wait to finally bring our little man home.

We moved again

Today was a pretty good day for Noah. He had his Upper GI test in the morning and we should have the results of that tomorrow. I was able to feed him from a bottle at his 3:00 p.m. feeding. Nana was there to cheer him on and he drank 27 ml but managed to spit up twice. If he cannot learn to bottle feed, the doctors told me I will need to learn how to put in an NG tube (the tube that goes from his nose to his stomach). There is a reason that I became a teacher and not a nurse. I told Noah that I did not want to be putting any tubes down his nose and that suctioning out his trach is hard enough as it is. We had a big discussion about keeping his food down, and Noah promised me he would think about it.Late in the afternoon, Noah moved to another room. He was transferred from Room 1 to Family Care West. It is a larger room with more babies. We were told by the nurses that he is now "one step closer to going home".It is quite an ordeal to move NICU babies around. Noah has six wires/tubes connected from his little body to different monitors in the room. When he moves, all of those wires/tubes need to be disconnected from the old monitors and reconnected to new monitors in the new room. It's a good thing he's such a little guy in a big crib, notice the "mess" he has around him. We received a "care package" in the mail yesterday from our good friends Robyn and Ira. They included some treats for Kc and I as well as the cutest "Team Noah" shirts for the three of us. Noah will have to grow a bit to fit into his, but I was able to smuggle it into the NICU for a picture. Thanks so much you guys!