Help! When does the pain end for the baby? I've been in tears...

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02/15/2010 14:42

Subject: Re:Help! When does the pain end for the baby? I've been in tears...

Anonymous

OP here.

I wished I had good news to share with the DCUM community. It's been a rollercoaster of emotions -- hope, frustration, exasperation, excitement, anger... all of which is completely controlled by a little 3-month-old. Perhaps we're naive, but my husband and I keep searching for that silver bullet that will solve our son's eating problems. For the poster who had suggested that it might be an ear infection, we were hoping it was that as well. We keep optimistic but it is so easy to see the glass as half empty (or sometimes all empty). Over the weekend, my emotions were hinged on the Haberman feeder, which came in the mail on Saturday afternoon. I read the advertisement "Its innovative design provides the answer to lengthy, distressful feedings and an alternative to nasogastric tube..." There was my silver bullet! On Saturday night, my baby took in a whopping 3.25 ounce from the Haberman although he was quite somnolent and vomited half of his intake. Regardless, my husband and I were doing our silly happy dance as this provided new hope. Then Sunday, all feedings were refused. DS would not even take in a quarter of an ounce. By 5pm, I threw the bottle across the room and broke down. My tears would not stop gushing out and I sobbed for a good 20 minutes. It was quite therapeutic. Sort of like the therapy session I had with shoveling snow over the week. My husband had asked me if I wanted to stay inside and feed the baby or go out to shovel snow. I opted for the latter. I was outside for 4 hours. Not only did I cleared our driveway; I cleared my neighbor's as well. For the first time in weeks, I felt that my energy and effort was actually making some kind of a difference.

Our second opinion GI from Children's had us doing a bunch of tests and consult with a neurologist. Even with advanced appointments and such, it took an entire month for all the evaluations to complete. Our family was incredibly hopeful that Children's Hospital would provide us with something...anything... to help us break this vicious cycle of tube dependency (i.e. children who are on feeding tube will eventually become dependent on them). This is evidenced by our son's eating trend. At the time of our hospital discharge, DS was taking 30% of his daily nutrients orally. As of last weekend, this has dropped to zero and DS became 100% dependent on the tube.

The research that we've done have opened our eyes to a whole different world; a world where babies spend a large part of their days strapped to a pump that slowly drips nutrients into their little bodies. Their faces have become a rashy mess from the tape which seems to mask their faces. They are under constant surveillance as their little fingers try to pull at the tubing irritants attached to their cheeks. I now sleep with one hand on my son's arm. His slightest movement would jolt me awake as I would peer over to see if he has yet again yanked out his tube. For our son, the whole tube insertion process is a nightmare. He would cry hysterically and inconsolably for over an hour. I don't know how it is that the medical professionals I had encountered could look me in the eyes and reassured me that the tube is painless. How would they know? Babies can't talk. We have experimented and put the tube down our noses/throat to see what it would feel like and I can personally say that it was a horrible experience. I was constantly nauseous and gagging/retching.

Before DS#2, I did not know of this whole different world of desperate parents who do not count their child's milk intake by ounces, but by the precious small amounts of CCs and milliliters. I have become one of those parents. Our first son has never been a great eater, but nowadays I marvel at the sight of his eating....How I wish my second son could have the same chance to enjoy life's pleasures instead of being strapped to the pump. It just does not seem fair.

What we have realized is that tube fed children dissociate hunger from the gratification of eating. They lay there not understanding why it is that their little tummies are suddenly full. With time, they will no longer know how to feed using their mouths. Parents of these kids report that their children eventually stop becoming hungry. I fear that I am beginning to see that with my 3-month-old as well. He can easily go half a day without showing any cues of hunger. What is more, tube children are even more prone to vomit spells and gastrointestinal pain. For a severely reflux child, my son rarely spat-up. Ever since the tube insertion, however, he has vomited much more often.

After 4 weeks of emails going back and forth with the last email from the pediatric GI writing "we'll discuss a treatment plan at our next appointment", I was hopeful. I did not care how I had to get there but I was determined to find my way through the wintry storm to go into DC. We were heartbroken when we discovered that the "plan" of treatment is the same old thing we have heard for this past month: "offer him the bottle first, then put whatever he doesn't take down the tube." What is more, our GI commented that our son has dropped off his 75% curve from month-1 to the 50%-ile, and that we have to put at least 35 ounces down the tube daily. I wanted to shake the doctor and scream, "I could care less if my son is in the 25%-ile as long as he seems healthy and is able to eat like normal again." What I have discovered is that these doctors are obsessed with the growth curve. Being that my husband is also a physician, we understand the need to keep on a curve but when a child is sick (or in our case, have a feeding tube) it is unrealistic to be obsessed about how he fell away from his 75%-ile curve. What is more, our family is genetically predisposition to being on the slim side; I am barely 110 lbs and with this terrible elimination diet that I am on, I doubt I'll be in the triple digits in another few weeks. So it shouldn't be surprising that our son will follow a similar weight trend. It is disappointing that even with the greatest medical facility in the DC area, the best solution we received for our son is "put more milk down his tube." The GI have mentioned that all results came back normal and that as far as he can guess, my baby's acid reflux pain should already be managed with the prevacid and zantac. I asked him what is the plan to help my child wean off the feeding tube. He curtly replied, "when he's able to eat on his own." I honestly don't think the GI doctor gets it. How can he eat on his own when no one helps him with it? The analogy that comes to my mind is if you broke your foot and are put in a wheelchair. You ask your Orthopaedist Surgeon, "when can I get out of my wheelchair?" And to that the Orthopod would reply "when you are able to walk." Well, if there is no plan of treatment to help a person walk, then eventually their muscles will atrophy and will be bound to the wheelchair forever. My husband and I are feeling very isolated as we feel that no medical professional really cares that our child is on the feeding tube. Last week, I brought him to the pediatrician to see if he might have an infection. I was taken aback when the ped said, "congratulations, your son gained some weight and looks great" then left the room.

What we realize is we need to arm ourselves with a good feeding therapist that has experience with suck-swallow-breath and oral aversion in infants. The therapist that we had worked with at Children's is less than impressive. We have left her multiple messages already with no reply. If any of DCUM parents out there have a recommended Speech Language Pathologist, I would be grateful if you can leave their contact information. I have also contact Infants and Toddlers. They were supposed to be here last Monday but due to the snow storm and President's Day, the appointment is postponed until next week.

So for now, I continue to look for my silver bullet....