Our Journey

My name is Sandy Matthews, and I am not a blogger!  Please forgive me for any days that I may ramble or share trivial and possibly irrelevant details…bear with me. J  My intention is to share our story of life with severe feeding struggles.  It has not been an easy road, and I know we have a long journey still ahead of us.  There are so many family and friends who have already been a part of our journey and we thank you for your love, support, and prayers.  My hope is to keep you all apprised of Gavin’s progress.  (I am not the most reliable when it comes to email, so this should help!)  This blog will also act as an outlet to help me process and share the emotion that is involved in this journey.  More importantly, I want to ask all of you to please share our story and this blog with anyone who is also struggling with a feeding disorder.  It is a silent, often lonely fight that we face, and I want anyone else experiencing this to know they are not alone!

I want to share a little about our journey as a family to help tell our whole story.  My husband, Eric, and I were married in 2008 and currently live in Kingwood, TX, a suburb of Houston.  On May 15, 2011, on his due date, our sweet little Gavin was born.  He was (and still is) perfect!!  There were no issues associated with his birth, and we went home with a healthy beautiful two day old.  Of course, Eric and I were scared out of our minds we would break him, but I’m happy to say we did not!

Shortly after we got home, we became concerned that something just wasn’t right.  Gavin and I struggled with breastfeeding.  Babies are supposed to eat, sleep, and poop, so as a mother, when I was not able to feed my own child, it was a little heartbreaking.  As a rational person though, I knew that Gavin’s need for nutrition was more important than my need to form a connection with him through breastfeeding, so I quickly agreed to switch over to bottles.  Plus, that meant there were two of us for those late night feedings. J  Gavin quickly became a good eater with the bottle and seemed to be doing okay.  Then, the vomiting started.  I know all babies spit up, but this was a little extreme!  Gavin and I became regulars at our pediatrician’s office where I, the “new mom”, had this feeling that something wasn’t right.  On July 4^th, Gavin came down with a fever of 100.5, and we were sent to the ER to have him evaluated.  After running a number of painful tests, we were sent home with no answers.  Over the next month, Gavin continued to have unexplained fevers, vomiting, was very fussy, and became extremely constipated.  There seemed to be no explanation.  Then at 2 ½ months, Gavin suddenly stopped taking his milk.  We tried every formula out there, but a 2 month old does not decide to stop eating because he doesn’t like the taste or is acting out behaviorally…there was something really wrong.  For some reason, which we learned later, Gavin had plenty of wet diapers even with the lack of fluid intake.  He lost 20% of his body weight and we were given the title “failure to thrive.”  After some blood work, we got the terrifying call from the pediatrician’s office to take Gavin to Texas Children’s Hospital immediately.

There are so many memories about this experience that are engraved in my heart and I will never forget.  Sitting here now I don’t think I am nor will ever be ready to share everything that Gavin, Eric, and I went through that night and in the next two weeks.  I just focus on us all being together and happy and healthy today!  After hours of phone calls to on-call specialists, they were able to diagnose Gavin the first night we were there with an extremely rare kidney condition; Nephrogenic Diabetes Insipidus (NDI).  I am scared to think of what would have happened had we not been in such good hands.  We spent the next two weeks in the hospital confirming this diagnosis and stabilizing Gavin.  There are a lot more specifics involved in arriving at this diagnosis that I am leaving out, but would be happy to share with anyone who has any questions. Click here to learn more about Nephrogenic Diabetes Insipidus.

Hearing that there is something wrong with your child’s health is devastating.  I am happy to say that we have hopefully made it through the hardest part for Gavin with NDI.  Infancy is extremely challenging because he cannot tell us when he’s thirsty and he needs water.  Not to mention, Gavin continued to vomit up entire bottles, making it even more challenging to keep him hydrated.  We had several trips to the ER and week stays in the hospital during the first year and a half, but we survived!  Gavin has his sodium levels tested monthly, and knock on wood, they have remained in the acceptable range.

So, back to our initial hospital stay where Gavin was diagnosed with NDI and what has led us to where we are today with a feeding disorder…The challenging part was that Gavin had stopped taking his milk.  The best explanation that we got for why he stopped was that his body was tired of trying to regulate water levels on its own and gave up.  How were we suppose to one, nourish our now three month old, and two, hydrate our baby with these extreme water needs?  Not being able to breastfeed my child was one thing, but now that he would not take a bottle left us helpless.  Hydration can be solved easily with an IV, but Gavin can’t live in the hospital hooked up to an IV his whole life.  The fact was that he was withering away in front of us.  I remember screaming at a nurse to get away from my baby as she tried to insert an NG Tube (a feeding tube that goes through the nose, down the esophagus to the stomach).  I remember holding Gavin in my arms as the doctor sat down next to Eric and I to tell us that as a result of his condition, Gavin will not eat food possibly until he’s five years old and will not survive without a feeding tube.  All normal for us went out the window at that point.

Gavin went in for surgery during that initial hospital stay to have a G-button put into his stomach.  It is called a “button” because there is a round valve that protrudes out of the tummy that looks a little like a button and then a tube that is held inside the lining of the stomach with a little water balloon.  You open the valve and attach and extension tube to the button, and then either a syringe is used to gravity feed food into the stomach or the extension tube is connected to a pump that feeds Gavin.  Gavin was and still is gravity fed through this button during the day and then hooked up to a pump to be fed continuously throughout the night.  It was our miracle and our worst nightmare at the same time, but it has become our new normal and is all we know now.  Eric and I joke that we wouldn’t know what to do with a child that actually ate normally, the concept is so foreign to us now!!

While this button has saved Gavin’s life, it is not the answer.  Because of Gavin’s condition, his body needs an extreme amount of water to survive.  As a result, hunger is a secondary feeling to him that he does not understand.  When most children reach the milestone of eating solid foods around six months, Gavin’s body just wasn’t ready.  He just wouldn’t open his mouth…at all!  Eating is something so natural to most people, it is hard to understand how and why a person would not eat.  Most of us, myself included have the opposite problem of overindulgence!  We have done endless tests to confirm there is not a physical reason that Gavin does not eat, but kids with NDI just do not eat.  I have finally accepted that this struggle just comes with the condition.  To help Gavin eat, we were referred to an Occupational Therapist (OT).  I was a little skeptical at the time, as I did not realize how many factors contribute to one’s ability to eat.  We saw two different OT’s in the first two years; one through a state program, ECI, and one through Texas Children’s Hospital.  They both were so good to work with and helped Gavin with a lot of sensory issues he had.  Then, we went back for a second swallow function test and, by some miracle, the same doctor who had administered the test the year before was there again.  She was concern that we had seen no improvements in a little over a year, and she felt we needed a little more aggressive approach.  Better yet, she knew just the therapist who could help us!!!  We started seeing Tiffany Spinos, a speech therapist with a background in intensive feeding programs.  God has a plan for Gavin, and He brought us to Tiffany at just the right time.  Within three sessions, Gavin was willingly and purposefully opening his mouth to eat yogurt!!!  For the first time I saw light at the end of this long tunnel!  He can eat!!!!!! J

We have seen Tiffany once a week for about a year now, and Gavin has shown great success with the therapy technique she uses.  She is actually teaching him how to chew and move his tongue appropriately to minimize gagging and build Gavin’s confidence with food.  Click here to learn more about feeding therapy.  Gavin is finally at a point where I know he wants to eat!  He understands that he is supposed to eat.  This has been a long journey, and we are anxious to put this chapter of life behind us.  Our therapist, Tiffany, used to work with Dr. Clawson, a psychiatrist, who has opened an intensive feeding program at St. Mary’s Hospital in Evansville, IN.  This clinic has a day program that allows children to receive feeding therapy four times a day, five days a week, for six to eight weeks.  They have tremendous results with weaning kids off their buttons, increasing oral intake.  After a long fight with insurance, we as so ready to go!!!!  Our start date is Tuesday, February 11^th. 

Of course, we would love to come home with a perfectly “normal” 2 ½ year old (almost 3!!), eating a well-balanced meal (or at least typical toddler foods), but I am slowly accepting that is not going to happen.  I can promise you Eric and I will do everything we can to ensure that we come as close to that end goal as possible.  This is a long process though, and as much as we try not let our 2 year old run the show, when it comes to eating, we need to accept what his body is ready to handle.  With that said, our realistic goal for these next six weeks is to wean Gavin from his button.  That may mean that he is simply drinking his PediaSure in addition to eating some purees.  We are just happy to have our sweet little boy with us!  We are the luckiest parents in the world to have Gavin.

Thank you all for your love, support, and prayers throughout this journey!  Please share our experiences and this blog with any other families struggling with feeding disorders.  Thank you!