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Bentley's Story
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Bentley’s story begins well before he was born. Pre-term labor and placenta previa complicated our pregnancy from early in the second trimester. With the assistance of a cocktail of medications we were able to carry Bentley to 36 weeks. At 36 weeks, I delivered what seemed to be a perfectly healthy baby boy. He weighed 6 pounds and 3 ounces and was 19 inches long. His nuchal cord was the only real trouble and it was not really much trouble because they were on top of it during delivery. His APGAR scores were 8 and 9 and despite all the extra care nurses in our room, he was doing really well for being 4 weeks early. We were warned that 36 weekers "ride the fence” and this has often been the case for him, but not immediately after birth, he looked good! He was grunting a little bit while breathing but I was able to hold my precious baby. He was able to nurse and began to calm his breathing. I add in this bit of detail because all his doctors now are so surprised at how well he did after birth. He was able to go home with us at 2 days old.

We went for a follow-up visit for Bentley at his pediatrician at a few days old. He was doing well but had signs of reflux. We had to return after a week for a weight check. He was still struggling with the reflux and at times choking so he started on Zantac and we would keep an eye on the choking episodes. By the time he was 2 weeks old, the choking was too the point that we were scared to sit him down and leave the room or even sleep. One night he had choked in the middle of the night and thankfully we heard it. He would often require a back thrust to get through the choking episodes. Choking in the middle of the night was the scariest and we did not want to experience that again. His pediatrician was able to get him in for a modified barium swallow test that same day. She wanted to see if there was a reason he was choking so often during and between meals. The test showed that he was silently aspirating on thin liquid, nectar thick liquid was penetrating his vocal cords and he was safe to drink honey-thickened liquid from a cross cut nipple. He was diagnosed with infant dysphagia. These results were frightening. I was also very sad because this was the end to nursing and the beginning of pumping for me. Since Bentley was close to being a "full term” baby. It was agreed on by his doctors that he could attempt to use thickeners from a bottle mixed with expressed breast milk and avoid being exclusively tube fed. This would also be the first we learned of the many schools of thought on infants using commercial thickeners. There have been many cases recently with pre-term infants getting necrotizing enterocolitis (NEC) from the use of commercial thickeners, especially Simply Thick that was routinely used for infants with dysphagia.

Bentley was only able to eat 0.5-0.75 oz every three hours of the honey-thick breast milk. This was causing him to get dehydrated. By the next day, I spoke with his pediatrician about the feeding difficulties. We agreed to keep trying to get him to eat the thickened milk until the next morning. At that time he was fatigued and taking less and less milk and was sleeping more and more with little urine output. We took him to the pediatrician and she sent us over for a feeding evaluation at Children’s. The speech therapist was unable to get him to take in enough fluid and consulted with the pediatrician. The decision was made that he be admitted to the hospital to get fed through an NG tube. Bentley was admitted to the Newborn Intensive Care unit for dehydration and feeding difficulty.

We faced yet another thickener vs. feeding tube dilemma in the NICU because commercials thickeners were not used in the NICU. Bentley’s choking episodes were minimal while in the hospital and after a few days the occupational therapist and speech therapist helped Bentley to attempt eating thin expressed breast milk from a Dr. Brown’s bottle with a preemie nipple while hooked up to monitors. He seemed to handle it well. He then tried breastfeeding with the help of the lactation consultant and he seemed to do well with this as also. He was discharged home a few days later with the feeding plan of breastfeeding and using the Dr.Brown’s bottle with the preemie nipple when he was away from me.

This continued to be his feeding plan until he was 11 weeks old with minor complications of reflux and some choking. He was gaining weight wonderfully until he got bronchiolitis and RSV. He had a constant fever of 102.5 F and he was retracting under his rib cage. We went to Children’s emergency department after calling his pediatrician. We sat in the ER all night after being immediately taken to a room. At times Bentley was struggling and at times he appeared to be doing well. This has come to be a familiar phrase of a 36-weeker. They ride the fence…. and we were about to learn the full extent of this saying.

He was admitted to the 24-hour observation unit for kiddos that are in need of little medical intervention. He required increased suctioning, vapo treatments and oxygen to keep his oxygen saturation up and breathing under control and by 10 am we were told they were going to move him to a unit for additional pulmonary intervention. Throughout our first 12 hours in the hospital we kept hearing a similar story.

"This is a virus.”
"We cannot give you a medication to directly treat the virus.”
"We can only provide support in the way of suctioning, oxygen and such to get you through.”
"The worst days are days 3 to days 5.” (This was day 2 for Bentley).
"You will likely be here 5-7 days.”

Within 24 hours of admission, Bentley was in the Pediatric Intensive Care Unit due to the severity of his breathing difficulty. Within 36 hours of being admitted to the hospital he was placed on a ventilator. He continued to breathe over the vent settings and after an additional 24 hours the decision was made to paralyze him to allow the ventilator to breathe for him and allow his body to rest. His fever finally broke after 4 days of being febrile. He then was in need of a blood transfusion due to an extremely low hemoglobin level. There was no indication of bleeding in his body, but a transfusion was needed to bring his hemoglobin levels back up. His ventilator pressures were very high and the nurses were suctioning him multiple times an hour to keep his vent pressures controlled.

After 7.5 days on the ventilator and 4 days of being completely paralyzed, Bentley was extubated and breathing well on his own. He started demonstrating signs of withdrawal from the strong sedation medications that were used while he was on the ventilator. The second day after being extubated they tried to feed Bentley a bottle. This resulted in him choking and gagging. With Bentley’s complicated feeding history the speech therapist suggested that he continue to be ND tube fed until he was completely weaned from the sedation medications. This would begin a 3 week prolonged wean from medications. During these three weeks, we worked on oral motor skills. Bentley would not suck on a pacifier or a bottle. After 5-7 sucks on a gloved finger he was fatigued and his tongue would tremor. He did not demonstrate the ability to suck on a bottle or pacifier at the time of his next swallow study.

He soon showed interest in breastfeeding and through a non-nutritive suckle at the breast he was able to practice sucking. The speech therapist and lactation consulted worked together to guide feedings. Within a few weeks he was able to suck from a bottle. He was still getting the majority of his milk by NG tube but he was showing increased chest congestion after oral feeds by mouth or by bottle. When his swallow study was repeated at 3 months of age it yielded identical results to when he was two weeks old. He was silently aspirating on thin liquid even from the premie (slow flow) nipple, nectar thick penetrated his vocal cords and he was safe to eat honey-thickened liquid from a cross-cut nipple. His endurance remained low and he would require NG tube feeds to supplement what he was getting through the bottle. After about a month of eating honey thick breast milk he was able to consume 75% of his target volume consistently and was able to get his NG tube out after 12 weeks of tube feeds.

Our feeding trouble was not over. Bentley was approaching the 5-month age and was ready to begin eating baby cereal. The first attempts of baby cereal brought the expected tongue thrust and strange faces but so did subsequent attempts. It seemed as if the more we tried it, the harder it was. Bentley would arch his back and turn his head and was quickly learning to hate spoon-feeding. Soon Bentley was gagging and choking with any bites of baby cereal from a spoon. We had to take a step back and begin at a much slower pace. We used a maroon spoon and I would spoon feed Bentley some of the thickened breast milk from his bottle. I would also place some on his tray and allow him to play in it and put it on his hands. He also played with teething toys with texture and a textured spoon to encourage the different textures. Soon we were able to transition slowly to eating rice cereal. Each time a new flavor is introduced it has to be done at this very slow pace to avoid gagging and choking.

Now Bentley is 8 months old. He has successfully eaten a variety of baby food that includes apples, bananas, peaches, pears, sweet potatoes, squash, carrots, peas, green beans and many other typical first foods. We have found that Bentley continues to have trouble eating his bottle and maintaining his level of spoon-feeding anytime he deals with a cold or sickness. We still have to supplement during times of sickness with the NG tube because his chest congestion keeps him from being able to sustain adequate nutrition to avoid dehydration and we limit his spoon-feeding when he is struggling to keep it a pleasant experience. There was question as to whether Bentley possibly had a laryngeal cleft causing his aspiration issues. After scopes, this was ruled out. To our current knowledge, his feeding trouble appears to be a timing issue. With that, we are hopeful that he will eventually eat and drink as a normally developing child does. Until Bentley catches up, we will continue with feeding therapy and intervention as needed to keep Bentley safe while eating!