Having Fun with Food

Very often when we try to feed her in the high chair, Joy transforms from a happy, joyful baby into a scared, high anxiety baby.  She will immediately suck on her thumb and turn her head away, not even looking at us. We talk and try to engage her but she will look away.

Through feeding therapy, we have learned to allow her to explore her food and limit her meals to 30 min max (as well as cut it short if things are going badly). We give her pureed foods and let her smell, lick, wipe, smash, etc.  On good days, she will drink 3-4 ounces of 60-80% diluted formula and a few spoons of solids. On bad days, she will outright refuse to open her mouth for anything. Lately, she will get mad when she no longer wants to eat. I guess we all have our limits! But we are thankful for these baby steps and encouraged to see her making some progress.

Children's Hospital Feeding Team

For the past month, we have been working with Donna Registad (occupational therapist) at Kennedy Krieger Institute and Laura McWade (feeding disorders coordinator) and Johanna Motz (speech/feeding therapist) at Children's Hospital in DC.  Donna, who has loads of experience working with feeding disorders, helps Joy with her oral-motor skills (spoon, sippy cup, textures and sensory issues), Laura monitors the medical aspects (e.g. reflux, hydration, calories) and Johanna gives us support and advice on feeding.  They are absolutely wonderful and I can't say enough about them.  They respond to my emails during the week, late at night, and on weekends, and overall, genuinely care about Joy.  Overall, I couldn't be any happier to have them by our side.

Yesterday, we also had the privilege of having Joy fully evaluated by Dr. Irene Chatoor and the rest of the feeding disorder team at Children's Hospital in DC. Dr. Chatoor is a world-renowned physician who specializes in feeding disorders. She has written many books and we were impressed by observations and advice. Dr. Chatoor and the team expressed optimism that Joy would continue to improve, unlike some of the doctors we had encountered in the past.  I think that's the first time that anyone in the health professional field has expressed hope for Joy.

When Joy was admitted to Georgetown in January, one of our doctors told us to consider getting the G-tube because it would take years before she would ever eat again.  Joy is resilient (and stubborn) but she has already shown us glimpses of hope.  We recently cut 20% of the volume she receives through the feeding tube along with feeding her every 5 hours instead of 4 hours.  We now notice that she is more interested in eating and drinking her formula.  Yay!  

Hilarious (and Stressful) Times with a Tube Fed Baby

Joy must be really bored these days because she keeps pulling out her tube!

 











And when she does, she thinks it is funny or cute.  Go figure.  Too bad it takes both of us to re-insert the tube because she's so strong now.  

Our Bundle of Joy

My wife and I often lay in bed and reminisce our 8 wonderful months with Joy. Oh gosh, those were some crazy times when we had to feed her every 2 hours. It sure felt like studying for finals all over again. I was barely awake when I fed formula through a syringe and my finger (Joy could not latch on). How did we ever survive?

Joy became a good eater and she would eat and eat and occasionally vomit or spit up. That's what everyone told us so we didn't push the panic button. She even plumped up like a turkey on Thanksgiving Day before our very eyes. One of my favorite pictures is of Joy pushing her firsts against her chubby cheeks. Fat baby = cute baby.

It was certainly a very tiring start to parenthood and just when we reached our "breaking point", something beautiful happened - she laughed! I have been known to tell a good joke but oddly she laughed for no apparent reason. And then she started to smile and before we knew it, our home was filled with smiles and spontaneous bursts of laughter. Her name is so fitting and we are truly blessed to have her in our lives.  Happy 8 months to our Bundle of Joy!  We are so blessed to have you in our lives!

Feeding Tube is a Blessing and Curse

We have a love-hate relationship with the feeding tube. We are thankful that it keeps our baby alive and helps provide nutrients so that she can develop physically and mentally. But at the same time, it holds her back from eating by mouth. Over time it becomes a crutch. Why would a child feel compelled to eat when the tube is in place? Why work for something when you know it will be given to you freely? The tube can also lead to more aversion to eating. It is inserted from the nose into the stomach. It is a traumatic experience having someone, against your will, shove a tube down your throat.  We are now trained experts on how to place an NG tube now.

Here is how we do it:

• We wrap Joy up in a blanket similar to swadling a baby
• With one person holding her head completely still, the other pushes the tube through her nose.  When the tube won't go any further, we wait until she swallows which opens up the passage way and we continue to push the tube until we reach the appropriate length.  
• The goal is to get the end of the tube into the stomach.  We verify the location of the tube by pushing some air through the tube and listening for a gush of air through a stethoscope.    

This is not a fun experience for Joy or us.  The tube is a foreign object and it irritates her body.  The body responds by making more mucus to protect the GI tract.  Joy consciously knows it is there and always tries to pull it out.  There are days when we wake up and it is already pulled out and there are days when she pulls it out multiple times.  Not fun at all.

When we have to re-insert the feeding tube, Joy gags, cries, and sometimes vomits.  This reinforces the oral/food aversion as Joy typically refuses the eat shortly after we re-insert the tube.  And thus the vicious cycle continues.

That is the dilemma that every parent faces for their children on NG feeding tubes. There is nothing normal about having your child fed through a tube, yet what choice do we have if it is the only way to keep them alive.

Happy Mother's Day!

Selena returned home after work to find her little baby expressing her love and thanks.  

Happy Mother's Day!

 

 

Turning Point - Sitting Up!

Joy has seemed to settled down quite a bit after being fed through the tube after a few months.  Seems as if her reflux is improving! With a few feeding schedule changes by the feeding team at Children's Hospital, we are able to give her more time to play and interact. And guess what?  She can now sit up!  I think this is major turning point and honestly, it felt like it happened overnight. Once she gained better head and trunk control, she can now sit upright during her tube feeds. This helps a lot with reflux because the food can stay down in the stomach.

I'm Sorry but You're Fired

Sometimes you have to make decisions that's best for your child, even if it means hurting someone's feelings.

We have been meeting weekly with the lead feeding therapist at Spectrum Pediatrics.  We discuss Joy's progress, obstacles, and make changes to her feeding regimen.  From the very beginning, the therapist expressed a LOT of concern, particularly because one of Joy's feeding therapists was actually making things worse.  I'm glad she did make a big fuss about it.  The feeding therapist from the county was pushing the spoon into her mouth without waiting for her to open, which by definition is force feeding. 

If someone is shoving food into Joy's mouth, what incentive is there for her to open up for food?  How does that give her control and allow her to fully enjoy the experience?  We all agreed that this was not best approach for Joy because we don't want her to end up having a stronger aversion to food.  So after over a month of therapy with this particular therapist, we decided to fire her.  We told her how much we appreciated her but that we needed to go in a different direction. 

Therapy Overload

In early March, after Joy was medically cleared to try eating again, we started taking her to lots of different health care professionals through Montgomery County Infants and Toddlers, Kennedy Krieger Institute and Children's Hospital in DC.  Along with her feeding issues, Joy was also developmentally behind because she had very little time to play or interact due to her medical problems, and suffered from physiological symptoms related to her reflux.

At one point, Joy had 9 appointments per week with doctors, occupational therapist, feeding/speech therapist, and of course, an amazing chiropractor (our friend Carrson Morris). We pressed hard for these therapies because our insurance would only cover the first 2 months.  To no surprise, Joy rarely complained and got to know her car seat very well!  She is such a trooper!  Props also go to my wife who drives her to Baltimore, DC, and Vienna throughout the week.

First Wedding

Taking a baby to a wedding can be a very precarious situation. And yes, we learned firsthand how it can be very difficult. Joy was so enamored by all the people that she, perhaps subconsciously, decided to skip her afternoon nap. Bad idea to say the least! But anyways, here are some pictures we took to remember her first wedding - Tong and Morie!