Monday, March 24, 2014

Preemie & IUGR Feeding Issues & Tips

Emily was born three months early, weighing one pound eight ounces. She is almost 14 months old (11 months adjusted) and weighs 17 pounds 3 ounces. Emily is a low-volume eater -- and has a difficult time getting enough liquid to stay hydrated -- let along enough calories to grow.

Sometimes Emily refuses to eat. Other times, Emily refuses to eat after a certain volume has already been consumed. And yet, there are days in which she stores food in her mouth, just to spit it out like one of the statues in a Roman Fountain.
 

We are constantly working to increase Emily's calorie count. We want to help her grow and do everything we can to avoid a feeding tube.

Can you relate?

Trouble Eating in the Womb
 
I can't help but wonder if any of Emily's nutrition issues are a result of the feeding issues she encountered in the womb. When I was pregnant, Emily was diagnosed with Intrauterine Growth Restriction, commonly referred to as IUGR.  IUGR occurs when there is reduced fetal physical growth during gestation.

During my multiple visits to the perinatologist, I was told that Emily was not growing very well. Her growth was so stymied that we didn't know if she would survive.

We're not sure what may have caused the IUGR, but I ended up with reverse end-diastolic flow. Emily was feeding the placenta instead of the placenta feeding Emily. So, Emily's food supply wasn't available when she needed it.

Hospital bed rest helped achieve intermittent diastolic flow for a few weeks, but at 28 weeks gestation, reversal of flow occurred once again -- requiring an immediate C-section. Emily was born weighing one pound, eight ounces - so her tummy was teeny tiny.

Tube Feeding in the NICU
 
Like many micro-preemies, Emily was fed by orogastric and nasogastric tubes for the bulk of her 67-day stay in the Neonatal Intensive Care Unit (NICU). 
 
She never learned what it feels like to be hungry. If it was 6:30 a.m., her feeding tube was turned on for 30 minutes. 
 
Emily also never learned what it feels like to be full. At 7:00 a.m., the feeding machine was turned off.  The machine wouldn't be turned on again until her next scheduled meal.  
 
Emily didn't graduate to a bottle until the last 10 days of her NICU stay.  She was sent home on Neosure, which is mixed in a special way to total 26 calories per ounce.
Transitioning from Neosure to Pediasure
 
Since Emily is almost 12 months old (adjusted), we are currently attempting to transition her from high-calorie Neosure to Pediasure, which offers a whopping 30 calories per ounce.

We started the transition by mixing-in 30 cubic centimeters (ccs) -- or one ounce -- of Pediasure into her bottles. Unfortunately, Emily has not been able to tolerate this amount of Pediasure. I'm not sure if Pediasure is too hard on her stomach, or if something else may be at play. 

We plan to try again and make the transition to Pediasure even more gradual. This time, we will mix-in 10 ccs of Pediasure to each of Emily's bottles. If she can tolerate this new concoction for a week, then we will then increase the Pediasure component of the formula by 10 ccs on a weekly basis until Neosure is no longer needed. 

Eating Solids
 
Giving Emily new foods to try isn't much fun. We never know what she will tolerate, so it's always good to have her in a long-sleeved bib with plenty of towels and wet wipes nearby.  
 
Emily's chew and swallow function is disorganized and her gag reflux is easily triggered. She is also very finicky when it comes to textures. I've tried to purée food for her, but I can't seem to get the texture just right -- so we buy Stage Three store-bought products, which she will tolerate. 
 
We have also learned that she loves high-calorie yogurt, sweet potatoes, bread, and cheese.  Sometimes we add virgin olive oil or butter to her foods to increase her calorie count for the day. 
 
Tips that Work for Us
 
Getting Emily to eat is a constant struggle and can be extremely frustrating as parent.  Below are a few tips that sometimes help encourage her to eat:
  • Reflux medications:  For several months, Emily screamed and arched her back during feedings. We videotaped these episodes and shared them with the pediatrician. As a result, Emily was eventually diagnosed with reflux and prescribed medication to help. We also saw a pediatric gastroenterologist who prescribed a more aggressive reflux drug than the pediatrician prescribed.  It appears that Emily has outgrown the reflux, but she continues to fight bottle feedings. 
  • Distractions:  We have found that Emily eats better when she is distracted. Playing with a toy, watching a Mylar balloon float in the air, or seeing someone make silly faces tends helps make eating more manageable. 
  • Frequent Meals:  We currently feed Emily every 2.5 hours during the day. It's a pain in the rear to feed her so frequently, but the thought behind this is to feed her less volume more often.  She typically eats anywhere from 60 ccs (two oz) to 120 ccs (four oz) per feeding.  
  • The "Right" Bottle and Nipples: When Emily came home from the NICU, we tried many different bottles and nipples.  We found that the Dr. Brown bottles and nipples are great for reflux. The bottles feature a blue tubing system that helps reduce air bubbles. The tubing system is helpful when it comes to reflux and colic; however, it does make for a chore when it comes to cleaning. Luckily, the Dr. Brown bottles come with a pipe-cleaner-like wand to help with tube cleaning.
Your Thoughts

Do you think feeding issues are behavioral in nature?  In other words, are nutrition issues out of the womb related to nutrition received in utero and in the NICU?  Please post a comment with your views.
 

Disclosure:  Material provided on Preemie Blessings is for informational purposes only.  Please contact your healthcare provider with questions about your baby's health and well-being.






10 comments:

  1. Out of curiosity, has Emily been evaluated by PT/OT and Speech pathologist? Some SLPs specialize in feeding therapy. How is her muscle tone? My niece has low muscle tone and textures and it took a long time to get her to eat semi normally. She is nearly 8 now but it just took a lot of trial and error. I think they had to thicken her bottles to help get her to take formula or pediasure and keep it down.

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  2. Hi, Mary Anne Whiteley, Yes. Emily receives OT weekly and sporadically receives PT. We have also received an SLP evaluation, gone to a pediatric GI, and a dietician.

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  3. Mary Anne Whiteley, Emily does have low muscle tone and it is something we are constantly working on. Thanks for the information about your niece and for your comments! We are definitely going through a lot of trial and error! I

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  4. I wish I could offer a suggestion, but I am so glad Emily is here and doing well (despite weight/food issues). I will be praying for the answers!

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  5. My daughter had severe GURD when she was born and nearly constant colic; I was so worried she wasn't consuming enough because she would vomit after every feeding. She is now a solid 6 year old. It sounds like you are doing everything humanly possible to ensure your daughter is healthy and happy, which is all you can do! I wish you luck in your journey!

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  6. Jodi - Thank you for your kind note. We greatly appreciate your prayers! Many, many thanks!

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  7. Hi, Holly S. - Thank you so much for your note and for sharing your personal story. I'm so glad that you're six-year-old is doing well now, despite having severe GURD at birth. What a wonderful blessing. Many thanks for your kind thoughts and support!

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  8. This sounds very frustrating as a mom when your child has problems eating. Hope one day it gets better

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  9. Tara Pittman - Thank you for your kind words. It is frustrating, but we're continuing to plug along. Thanks again for your note.

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  10. This just literally brought tears to my eyes as my son 11 months (9 months adjusted) born 2 lbs 10 oz at 32 weeks IUGR now 15 lbs 5 oz lives these exact feeding/weight gain issues. Thank you for your story!!! How's Emily now? Did she ever get a tube from GI doctor? Our appt is on Monday and I'm nervous!

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