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Next Step~ eating & feeding

Posted Oct 02 2009 3:07pm
Ok, well feeding really came first. VERY FIRST right after birth...but in my blog, it's coming second in terms of importance~right after that shunt placement surgery!

Anyways, when Bray was born, or before rather, I was told that he would not eat on his own. When he took the bottle immediately after birth, I was then told that newborns have a natural rooting and sucking reflex that would disappear shortly...he wouldn't eat orally for long. When it didn't ever seem to disappear after many months, I was then told that he was probably having a very difficult time eating and we just weren't aware of what to look for. A feeding tube was discussed, and in my case dismissed, so he wasn't burning all of the calories he was consuming...while he was consuming them. Feeding tube? Sounded scary to me...which was the greatest reason that it was dismissed. However, all fears aside, Bray was growing strong and eating normally...most importantly, he didn't seem to bemalnourishedat all.

Truth be told,hydranchildren, just like all other children, are completely different in so many aspects. In some cases, they do have a very difficult time eating orally and do receive varying types of feeding tubes. Some serious complications can arise during oral feeds such as aspiration pneumonia (inhaling food or liquids into their lungs, irritating them) orgastroesophagulreflux (when the contents of the stomach come back up, causing pain and irritation) which we all face from time to time. Sometimes, however, I wonder if a feeding tube is offered to try and make it easier for the caregiver and the child, or as an easy fix for thedrtreating them...because I know thatBraydendidn't need one at any time it was discussed. I wish that I just knew if the topic was brought up as a necessity, that it would be just that.

I have partaken in that conversation 3 times inBrayden'slifetime of nearly a year now. The first time was at birth, and he continued to take the bottle while we were in the hospital so it was pointless, in my opinion, to be discussing it then. Basically, since they'd told me that he wasn't going to survive, they let it drop with the idea that him not eating was going to be the least of our problems. The second feeding tube conversation was when he was a month old after his shunt placement surgery. His surgery, as you know if you read my last post, went wonderfully and we could have been allowed to leave the next day. However, my little man was being much too stubborn to have it be that easy. Our overnight stay turned into a week, if my memory serves me right. No other complications, except that he did not want to eat. Thedr'swere at first convinced that the sucking reflex, that they had already warned me about, had left and he would no longer be able to take oral feeds. Luckily,Braydenhad the most wonderful angel of a nurse ever...and she drew up a strict feeding plan, tried every kind of nipple on the market, called in an occupational therapist to work on cheek support and chin strength, and helped us stick to it. He was placed with anNGtube, which is a nasal gastric tube that runs from his nostril into his stomach...and we fed him the amounts that he wasn't getting at his designated oral feeds through that. TheNGtubelasted a good 24-hours, before we didn't need it anymore. Once he got his regular cry back, his good sucking and appetite came back too. I'm still convinced that having a respirator stuck in your throat and being doped up on anesthesia and painmeds, makes for one very unhappy and not hungry little boy. Needless to say the surgery to have aGtube, which is agastrostomytube placed straight through his abdomen and into his stomach, was not talked about anymore. And the last feeding tube conversation had, was relatively recent and I was the one concerned this time.

Mr.Braydenhad all of the sudden decided that he just didn't want to eat anymore from the bottle. He had just started eating baby food and had broke his bottom two front teeth in. I chalked it up to the fact that baby food tasted way better than formula, and the discomfort of teething wasn't helping much either. But, then when he started to not eat that either and crying and fussing more all day and throughout the night, I was afraid that this was it and it was tube time! After doing a little more research, I thought that he actually probably had some reflux issues and we visited hisdrwho partially agreed, but did not order a visit to theENT(ear, nose & throatdr.) for a swallow study. Instead, she ordered him to start onZantacliquid and switched his formula toEnfamilLipilAR (AR=added rice). That worked pretty well, but he still was fussing a bit before taking the bottle. Once he got started he did great. Fortunately, we had just started Early Intervention therapies and had recently met his new occupational therapist, who just sohappensto deal with feeding issues. She recommended trying soft-spoutedsippycups and I immediately went out and bought 6 different kinds, different shapes and sizes, and one worked. The very first one I tried, aNubysoft-spouted 2-handled 10oz cup was the winner. Since switching to the cup, no more feeding issues or medicines to control possible reflux...and the fact that he was weighing in at 23lbs at 10months is testament to that success.  I was also reminded that I shouldn't have been so quick to give up and lose my determination, I know I wouldn't have immediately thought that one of my other kids needed a feeding tube if they didn't want to eat as babies. Remembering that every case is different and that my son will oftentimes be treated as a condition, rather than a baby...reiterates the fact that I'll just have to make sure I'm educated and determined to make the best decision within every instance. 

There, quite possibly, will come a day whenBraydendoes need a feeding tube after much testing is done to determine that there is, indeed, no other way. The promising notion is that they aren't always needed long-term. Even with aGtube, the hole through the stomach heals very quickly and can be removed once the child has grown strong enough to start eating solely orally again and many take oral feeds with their tube feeds. Either way, it's just as important to make sure that your children's nutritional and caloric needs are met to prevent malnutrition. I found an information guide on eating for special needs kids at theRays of Sunshinepage where I also read otherhydran-mommy's stories oforal and then alsotubefeedings that were so very optimistic and reassuring. TheNew Visionsite has more to read on ideas for feeding on every level, whether there are issues with oral that can be resolved or you are moving into the tube feeding world. I have theweb pagesaved because I have looked to it for information quite often while myBraydenis moving into more and more solid foods. There is also an online store there with many, many great ideas for aiding in feeds and various other things, such as therapy ideas and non-traditional aides. I also have learned to love the fact that that website uses the tube-feeding as last resort mentality, and gives such great promise to the fact that surgeries, etc., are not always the best treatment for feeding issues while reminding me that there could be underlying issues that affect eating that are more easily resolved.
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