Baby steps to a thriving life

By: Tina Ireland

To understand our family’s love and appreciation for blended foods, you first have to understand our love for our children and the struggle we went through in Ripley’s earliest moments. On April 18th, 2016 our family welcomed a 4lb 12oz little bundle, Ripley Annette, into the world. As with any parents, my husband and I were over-the-moon excited to raise our new baby girl together and watch her effortlessly grow into a beautiful and intelligent young lady. Unfortunately, life had other plans in store for us…

Ripley was never a decent feeder. I know, really weird to categorize people on their ability to orally consume food, but special-needs motherhood does strange things to your brain.

From birth, her suck reflex was weak and her swallow was no better. She started off her first few days of life with an NG tube which is not uncommon for preemies with a traumatic entry into the world. An NG tube, short for Nasogastric Tube, is a small and flexible plastic tube that is inserted through the nose, past the throat, and into the stomach. Typically for babies, this is only temporary to ensure they are getting the calories and/or medication(s) needed. However, even as she progressed into learning to feed from a bottle, our instincts as parents told us that something just wasn’t right with how Ripley was adjusting to bottle feeding. Every bottle I attempted to feed her left me looking like the winner of a wet t-shirt contest because no matter the position- nipple, bottle, or technique- formula would just pour out of the sides of her mouth, and the little bit she was successfully eating was quickly coming back up in an exorcist-style vomit.

Both concerning and impressive coming from a 4-pound little babe.

Our life-changing trauma, that catapulted us into the world of being a special needs family, came at Ripley’s 13th day of life. I awoke to find my tiny girl was no longer breathing and had no pulse. The details surrounding why this event happened is a whole book on its own and in an effort to keep the focus on real food blends we will skip that part. The responding paramedics, officers, and my efforts miraculously paid off and she was able to be resuscitated. For a while Ripley was in a coma, she slipped into on her own, but she had what looked like full brain function. The odds of this were astronomically low for the type of trauma she experienced so everyone was shocked over the news, but as the days went by we learned that she had sustained a type of brain injury called HIE, or Hypoxic-Ischemic Encephalopathy. To break it down, her brain was deprived of oxygen for a long enough period of time that it began to destroy some of her brain tissue. As Ripley emerged from her coma, it became apparent that the damage to her brain caused her to completely lose her swallow reflex, what little she had was now totally gone. Obviously, this impeded her ability to orally consume any nutrients and made it impossible to get her off of the hospital ventilator.

The decision was made to place both a Trach and GTube so Ripley could transition back to her new life at home. For those reading who don’t know, a Trach, short for Tracheostomy Tube, is a tube that is placed directly into an individual's airway allowing them or a trained caregiver the ability to keep the airway free of obstruction and allow the patient to breathe on their own. A GTube, short for Gastrostomy Tube, is a permanent version of an NG, except that it’s surgically inserted directly into the stomach. At the time the idea of a trach was terrifying, but the GTube was actually a bit of a relief. We no longer had to worry if Ripley was getting enough nutrition; Now we could ensure it.

We started back at square one with formula, except through the GTube this time, and she did amazing! After turning a year old she was upgraded to a toddler formula and removed from the infant one.

**Spoiler Alert: It was not an “upgrade” at all**

I never really thought anything of the switch and Ripley did okay for about 6 months, maybe longer, but then things started to change. She stopped gaining weight and over time became thin. To give some perspective, Ripley was never really a chunky toddler, always sitting around the 20th percentile for weight. But now, her color was pale and sickly looking, you could see her ribs slightly starting to show, and her spunky attitude began to fade. She seemed tired and uninterested in everything, like a weird sort of toddler depression.

Then started the GI (Gastrointestinal) complications. It was subtle at first; maybe once a week Ripley would have a rough day trying to pass a bowel movement. We’d chalk it up to an odd occurrence, never really looking into it. Then it was twice a week, quickly progressing into a daily problem that became incredibly painful for her.

I never really thought anything of the switch and Ripley did okay for about 6 months, maybe longer, but then things started to change. She stopped gaining weight and over time became thin. To give some perspective, Ripley was never really a chunky toddler, always sitting around the 20th percentile for weight. But now, her color was pale and sickly looking, you could see her ribs slightly starting to show, and her spunky attitude began to fade. She seemed tired and uninterested in everything, like a weird sort of toddler depression.

Then started the GI (Gastrointestinal) complications. It was subtle at first; maybe once a week Ripley would have a rough day trying to pass a bowel movement. We’d chalk it up to an odd occurrence, never really looking into it. Then it was twice a week, quickly progressing into a daily problem that became incredibly painful for her.

Every day we were giving large amounts of Murilax (doctor’s orders) along with glycerine suppositories and Tylenol to combat her painful bloating from being so severely constipated. Even with all these medications, we were in the ER regularly because Ripley would get so constipated that her stool would become impacted and she was physically unable to pass it at all. It was a miserable period for our little girl, we were stumped as to why this was happening and had exhausted all available possibilities to give her some relief.

Doctors suggested we discontinue her daily iron supplements because maybe it was too much with the added iron in her formula. Maybe add more water to her formula when mixing, it could be a dehydration issue. Maybe add more free water flushes throughout the day, because adding extra water directly into her formula could be washing down the nutrients causing further weight loss.

MAYBE

MAYBE

MAYBE

The world's most frustrating words for any parent desperately trying to relieve their child’s pain.

The solution to our problem actually came from a Facebook group, believe it or not. In a support group for children with disabilities similar to Ripley’s, I started to dig through posts pertaining to young children having issues with chronic and severe constipation. With so many different medical needs for the children in the group, there were tons of different answers, some having no similarity to Ripley’s situation, but I noticed a very common theme emerging: D I E T

**DISCLAIMER** Please do not take medical advice from strangers on the internet without first running it by the appropriate specialists who treat your child or loved one. What works for one family could have devastating consequences for another.

So many other families had experienced the same or similar complications, and all it took was simply switching their child’s diet to REAL FOOD to correct the problem. It’s basically taking an entire meal, just like the one you’d make for yourself, blending it into one completely smooth puree, much like stage one baby foods (but better), and feeding via GTube. To be completely honest, I felt a little embarrassed because the thought of Ripley ingesting real food never really crossed my mind. Call it being a first-time mother or that she had a trach and an inability to swallow either way, it felt like an epiphany.

I was so scarred by the trauma I had experienced with her and how absolutely fragile she was in the first few months of her life that I had only ever taken things one day at a time. Tomorrow wasn’t promised, as we painfully learned, and I refused to take an hour for granted. So the more I thought about it, the more the idea of Ripley being on formula for the rest of her life (or tube experience) sounded insane. Toddler formula was only ever designed to supplement a child’s nutrition, it was never made to be a completely sustaining diet. So with not many options left to explore and our newfound knowledge, we jumped headfirst into the blended foods lifestyle.

We've been on this journey for about a year now and the difference it has made in our child's life is unreal. Within the first week of switching to a blended foods diet, Ripley cognitively seemed to “take off” in ways we had never seen before. Within two weeks she had tons of energy, that spunk was back and better than before! Both a blessing and a curse; for a child that doesn't speak, she sure can give you a lot of attitude. In a month, her color was so much better and her skin had a beautiful healthy glow. The happiness of watching her thrive with the diet change was just overwhelming.

Having such a large family with little ones so close in age, we choose not to blend our own meals. Not that it's impossible, too complicated, or too expensive, we just don't have the time in our already constantly crazy life to fit it in. It is an eventual goal, but for now, we use pre-blended meals with blended snacks of our own and Ripley is moving mountains.

I see so many families afraid to take the leap because of issues with insurance or thinking the whole process is just too complicated and all they'll end up doing is causing their loved one harm. My hope is that information on blended diets will become more common and readily available for families, and more widely accepted by insurance companies. We are very fortunate to have Tricare which 100% covers the expense of Ripley's pre-blended meals, but so many others aren't as fortunate.

A year ago Ripley's weight was in the less than 1st percentile, she was lethargic, and in pain. Today, she is back in the 20th percentile, full of adventure and sass, and lives pain-free.

I couldn’t be more grateful for the families, doctors, and home nursing staff who have helped us make this transition for Ripley and skyrocket her quality of life.

If you are a caregiver of someone experiencing similar issues, chat with their doctor about switching to a blended diet. If like my family you don’t have the time to prepare and blend your own foods, research different companies that offer pre-blended meals. Based on nutritional value and your loved one’s needs, you and their doctor can choose the one you both believe will work best.

One thing I will say about My Kitchen Blends, I was very excited to see they had more than just the usual Chicken or Vegetarian meal options. Living in Maryland with such a great variety of delicious seafood, I often wish I could share it with Ripley, so seeing that they offered a Salmon option was very exciting for us.

This has been a roller coaster ride of experiences and learning. There’s been tons of trial and error, but it’s been worth it to see Ripley progressing in life, even if it is in her own special way.

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