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Life with a Pump

28 Mar

We are now using a feeding pump with Noel.  It has helped some (we are getting a little more formula into her without her throwing up), but it has not solved all our GI problems.  We have an appointment with our GI doctor next week to see what else he thinks is going on.  We believe there is a stomach emptying problem.  It might mean another medication.

Also a  few weeks ago Noel was switched to a different feeding formula.  It is called Peptamen, Junior 1.5.  It has 375 calories and part of it is already broken down for her.  She is getting about 16 oz of Peptamen a day.  She gained almost a pound last month. 

For now she is wearing the pump in a feeding pump backpack  for about an hour 3 times a day, but we are supposed to switch to night feedings when we can.  We are concerned about feeding her at night because she is a pretty active sleeper.  We think she will just get all tangled up in the tube.  We also don’t see how she will fall asleep attached to the pump because the only way she sleeps is on her stomach.  The pump beeps when something has blocked the flow.  She is getting more used to the alarm, but it kind of freaks her out a little bit.  We are worried that the alarm will go off at night and scare her and us half to death.  Lance and I really like to sleep, and I think there will be a huge learning curve to the feeding pump at night with Noel.  We are going to have to work towards it though so that we could feed her at night and then during the day she might start eating again. 

Her HIV is easy to manage, but these feeding issues are challenging!

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Peg Tube & Pedisure 1.5

22 Feb

First of all, I am going to start using my daughter’s middle name (Noel) instead of always saying “my daughter.”  She actually goes by her beautiful Ethiopian name, but I will use her middle name here.

I thought I would write a little about our experience with Noel’s peg tube and weight issues.  We got her peg tube in December to help with giving her HIV and seizure medications and to help with weight gain.  After the getting through the yucky stuff at the hospital and the initial sadness that we had to do this, a peg tube has been helpful. It completely took away our medications problems.  We get all her meds down 100% of the time.  Yay!

However, it has really not helped our weight issues as much as we had hoped for, or at least not yet.  Noel has actually lost weight again this month.  She has not been able to tolerate enough Pedisure to put on weight.  They wanted us to give her 4 (8oz) cans a day.  But she throws up if we give her over 14oz  in a whole day.  Our primary doctor want us to go back to the GI doctor for more testing to see if she has other GI problems like delayed emptying.  Another draw back to the peg tube is that she basically is not eating anything.  Feeding her through her tube keeps her full enough that she has no desire to eat at all. 

We had to go to increasing her calories since she has not been able to tolerate a larger volume of Pedisure.  This last week we have been mixing a package of Carnation Instant Breakfast and Benecalorie into her daily goal of 16 oz of Pedisure as suggested by our nutritionist.    Our doctor also recommended switching to Pedisure 1.5 (which we had to order) and it should be coming tomorrow.  Hopefully Noel will put some weight on with Pedisure 1.5, or the next thing they want to try is a feeding pump at night.  We can’t imagine trying to get Noel to sleep attached to a pump.    We hope they will ultimately be able to find something to explain her eating issues.  Maybe there is a physical reason she does not want to eat.

I am grateful for the peg tube, but have to admit I am sad about it.  I am sad that Noel has to have this “thing” poking out of her.  It seems so unnatural.  It seems so medical.  It seems so sad.  A peg tube in a little belly is sad, and yet it is necessary.

Adoption Nutrition

6 Oct
This is a great website dedicated to helping parents with nutrition/food issues.

 

Weight Issues Continue…

29 Sep

We are still in a quandary about what to do for our daughter who really won’t eat.  She is the happiest little girl in the whole world, but she will not eat enough to put any weight on her already little body.  She actually lost about 5 oz last month.  At almost 3 years of age she is 33 inches tall and only 21 and a half pounds.  She is so little, but she is so full of personality.  She is such a doll. 

In her 8 months home, she has made incredible gains in all areas but eating. 

Last week we met with an occupational therapist to see if her eating woes could be a sensory issue.  At the end of our meeting, the OT said that our daughter was hard to figure out.   However, she feels our daughter is a sensory seeker as far as her motor skills.   But she did not think sensory issues are the sole reason for her eating problems.  She said that our daughter did not follow the typical pattern for children with food sensory issues, and she said she certainly did not think she looked like the typical failure to thrive child.

I really don’t know what has led to all of her eating problems.  But I think her eating problems are part developmental delays (she chews only up and down and has a weak bite), part personality (she is so busy), part stomach issues (maybe her HIV meds are making her nauseous) and maybe part sensory issues.  Who really knows?

We are just unsure what our next steps should be to help our daughter.  We are open to a g-tube but no one thinks our daughter will keep it in with her active and somewhat quirky personality.  In a few weeks we will see our PID doctor again and run some more blood tests.  As of today our PID prescribed Megace, an appetite stimulating medication to try.  She and our local doctor want us to get into a pediatric GI doctor ASAP but their first appointment is in January.  I am trying to press for a sooner appointment.  I will keep you posted on her progress.

Benecalorie: Weight Gain Help

17 Jul

In my last post, I shared about our daughter’s struggle to eat food.  As you can imagine, we have had great difficulties putting weight on her.  We met with a nutritionist at the ARMS Clinic, and she shared a couple of different tricks to help increase a child’s calorie intake.  The one that has been most helpful to us is called Benecalorie.  It is a medical food that you can mix into your child’s drink or soft foods.  We mix it into our daughter’s Pedisure.  

Benecalorie is made by Nestle Nutrition.  Here is a description from their website,  “There are two reasons why BENECALORIE® is the ultimate solution for fighting fatigue; a formula that packs 7 grams of high-quality protein and 330 calories into a single 1.5-oz serving, and its ability to blend easily into liquids and most foods. Maximum nutrition, maximum flexibility, maximum variety, with a minimum serving size.”

We are big fans of Benecalorie.  It  has helped our daughter gain some weight.  She weighed 18 pounds in January and now weighs close to 22 pounds.  Part of our problem has been, as our daughter’s motor skills have improved, she has become more active thus burning more calories.  So some months she has not gained weight but has not lost any either.  There are just a few downsides to Benecalorie: it is kinda expensive and (I think) only sold online.

Our daughter has been using Benecalorie once a day for about 4 months.  We don’t plan on using Benecalorie forever, but it has been helpful while we work through her oral aversion problems.  I frankly don’t know what we would have done without it!