Tracy is our parent mentor who specializes in helping parents of preemies coping with feeding difficulties. If you need someone to talk to about your preemie’s feeding challenges, you can connect with her here.
“What screws us up most in life is the picture in our heads of how it is supposed to be.” – Anonymous
One of the biggest issues we, as a family, have learned about since having my 24 week, 14 oz preemie Chloe, has been feeding difficulties.I am so grateful for the preemie I have. She is an amazing, happy four year old. I am so thankful that her scars, while they can be seen, are only physical, and the emotional scars of memory are all mine. Not to say the NICU hasn’t contributed to the girl she is today, a feisty, determined, ball of energy. I like to say she’s “quirky” in the most loving way- I mean one of her favorite things is zombies. I looked high and low and finally found a “Plants vs. Zombies” kid friendly stuffed zombie to give her for Christmas, and let me say, that was tricky but a success. She likes to start dance parties at school, gets into character for an unusual amount of time, being Spiderman, or David from the “NO David!” books for a couple of days and insisting we call her by her super hero or book character name. I am bragging as a mother, but I think she spreads joy just about wherever she goes (I mean what’s one or two tantrums once in a while?)
While being this really fun, boisterous four year old, we still struggle every day with getting her the proper nutrition she needs to grow and develop. It has been a daily struggle since she was around six months old. I think she was labeled “failure to thrive” until she was three years old.
Chloe was a great eater in the NICU. We had NICU friends who were kept in the hospital day after day because their little one struggled with eating and gaining weight. The nurses all warned and prepared me of this before we got started feeding Chloe. To my, and almost everyone’s surprise, she ate like a champ. Took the bottle right away. While I struggled and struggled with my milk production I even had hoped that I would be able to nurse her at some point once at home and we worked on it. We left the NICU after being there 100 days.
A month and a half later, at home, after we got our groove back as parents, Chloe’s oxygen stats dropped to 30%. It was my husband’s birthday, he had just flown back to our home in Florida to start work again (oh yeah, we had Chloe while I was visiting my parents in St. Louis, we were away from our home in Florida for a year) and Chloe had to be readmitted to the hospital and put back on a ventilator. It took 3 times to get the ventilation tube correct. They sent a chaplain to come talk to me, I ran in the room and saw the practically lifeless body of my daughter on the table. It felt like we were at square one. I never left her side. Unlike the NICU, where I would go home at night, I could live at the PICU. It was a whole new ballgame. I would get a doctors report every day in the NICU, I was lucky if one of the doctors acknowledged my existence in the PICU. I struggled. I struggled as a parent, as a person, I wondered if this was my new reality, living in and out of hospitals.
After that, it became harder and harder to feed Chloe. We did swallow studies and began reflux meds, none of which were required before. She started to cry and scream when we fed her. The eating battle had begun. We bought special pillows to keep her elevated at night. The weight gain momentum she had before slowed, slowed and almost came to a stop. We were recommended to see a GI doctor. We had her working with an occupational therapist. She would only eat when she was sleeping. Then she would only eat when she was zoned out by a television or iPad. Then she would only eat if her dad and I were standing on our heads ( just kidding, but really, we would of tried it if it was recommended). This started our beginning of the world of oral aversion, feeding difficulties and sensory processing disorder. And from this experience, I have spent a great deal of time, energy, focus and attention in the past four years.
“Even miracles take a little time.”- The Fairy Godmother
Our four year old gets her nutrition from a bottle. She doesn’t eat solid food. She will nibble on popcorn and lick icing at times. It is always a toss up if she will sit at a restaurant with us while we eat. Halloween? Yeah she loves dressing up, but will give all her candy to her cousins, could care less about it. Smashing that cake on her one year birthday? Couldn’t get her to touch it. At the current moment, she is on a high calorie formula one can only buy online. 1.5 calories per milliliter. Then we add a scoop of powdered formula, a probiotic and flaxseed oil. I, myself, did not even think when I contemplated having children that children can and do actually live off formula. I mean, there are people who don’t or can’t eat? Amazing!
This mixture she is on now is just one of many concoctions we have gone through with Chloe throughout her life. I don’t know how many meds, formula, medical tests, oils we have gone through. We have had many great doctors that have come up with some wonderful ideas or led us this way or that, but honestly, many just know little about how to fix this.
As of February 6 of 2015, we finished our third intensive feeding program with Chloe. These programs have taken us away to another state for months at a time. Living in three different states since having Chloe and going through these programs, I can honestly say, we have had numerous therapists, tried this therapy and that, and this idea and that idea. This last program was a program we went through twice and it has been the one that has helped us the most. The one that made the most sense on how to improve Chloe’s relationship with food, make it positive, fun, and less stressful for everyone. Now we have the right tools, the right direction for our child and family, and hopefully we can continue with progress.
“Hardships often prepare ordinary people for an extraordinary destiny.” C.S. Lewis
“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran
I was surprised at how emotional it can be when your child refuses to eat. It kinda goes against the order of things. I mean, I love to eat- I enjoy stuffing my face, why doesn’t my child? Parents are supposed to be able to provide their child with substance, and when you aren’t able to do that in the “typical” way it can be confusing and frustrating. It is especially confusing and frustrating to those around you. Everyone has an opinion on “picky eaters” and getting your child to eat. Let’s face it, nowadays there can be A LOT of judgement on what your kid eats. “Do you bottle or breast feed? Do you let your kids eat fast food? Do you let your kids eat meat? GMO? Potato chips?! Ugh are you serious?! You must not really love you child!” It is kinda an awkward thing for your child to have, and for those not to think you must be doing something wrong as a parent. Oh man the looks I have received when I have pulled out a bottle to give my four year old. I get so self conscious at times.
If only I had a dollar for every time another parent said, “Oh yeah, my child is a picky eater too, pizza and hamburgers that’s it!” Well, I tell you what: the first time I saw my child bite, chew and swallow a french fry I cried. I mean I am choking up thinking about that moment as I write this.
Even from those we love the most, our family, it has been a difficult thing for them to understand. “She doesn’t even like ice cream?” I have been angry, defensive, annoyed and hurt at times by what this situation has caused at times. Someone said to us, well eating is survival, if she gets hungry enough, she will eat. The thing is, it is not true. There is a percentage of children with feeding difficulties that will let themselves inadvertently starve to death. I don’t blame others for not understanding- it has been hard for us as parents to understand and we have learned so much. The more I learn the more I understand, and the better I get at explaining it to those around us.
Eating isn’t as simple as bringing the food to your mouth, chewing and swallowing. There are 32 steps in learning to eat. It is a learned skill, it isn’t something we are just born knowing how to do. A whole lotta stuff goes into eating: gross and fine motor skills, body awareness, body support, strength, etc. Then add on top of that any other issues one might be facing from prematurity and it isn’t a surprise that many preemies may have some road blocks on the way to learning to eat. In our house we try to make food as fun as possible while working toward making it less stressful for everyone. We have learned to have enormous patience and just keep moving forward as best as we can. Just like the NICU, it can be a two step forward, one step back process.
What an amazing, tough, wonderful, emotional, loving, hard, rewarding journey it has been!