Posted (Tina) in All Posts on August-4-2009

We’re home tonight with Ella.

We have good news and more good news. The good news is that they figured out what was wrong. The even better news: it does not require surgery. In a nutshell, her gastric emptying and overall motility in her bowels is too slow.

As soon as the 3.5 hour test started, I looked on the screen and noted that her stomach was not emptying like I’ve seen it do before during prior upper GI tests. Even after 20 minutes, only a small trickle of the contrast liquid had left her tummy. After 2.5 hours of the test, one third of the contrast liquid was still in her stomach.

So the other day when I fed her a larger amount of food, her tummy accepted it without a problem. But as soon as I did that same larger volume a couple of other times (and since her tummy was not emptying properly), it became painful for her.

When the radiologist started discussing the slow gastric emptying, a light bulb went on for me. The medicine that we discontinued in mid-May was Reglan. That medicine is given specifically for this issue. She had been on Reglan since her early NICU days. It’s been weight-adjusted over time. It is one of those medicines that there is not a specific time frame for how long kids should use it. And the only way to truly know if it should be discontinued is to try. Well, we tried and it didn’t seem like she had any problems.

The past 6 weeks have been interesting with feeds. When she would see the syringe and food coming, she would whine a bit like she wasn’t looking forward to it. Since she had no other symptoms or side effects, we assumed that it was her just being a 2 year old. Now we think that maybe she was experiencing some discomfort, but not enough for her to make a big deal out of it. However when I tried to condense her food the other day to four times per day versus five times per day, she let us know that she was in a lot of pain.

We knew that something wasn’t right. And we see this as a blessing in disguise. She has probably been experiencing some discomfort with feedings for awhile now. And we were going to look to condense her feeding times at some point – it was just a matter of time. Now that we discovered that Reglan was still helping her significantly, we can likely accomplish moving towards our goal of feeding 3 times per day over the next several weeks. Plus, Ella won’t be experiencing any discomfort.

We’re just so thankful that it was not anything major that required surgical intervention. Praise God!

We’re all happy to be sleeping in our beds tonight. Ella went to bed early – she was very tired from the lack of sleep over the past 36 hours. We’ve already given her the first dose of Reglan and her first bolus feed at home and hope that things will just get better from here.

Julie on August 4th, 2009 at 9:34 pm #


kristin on August 4th, 2009 at 10:26 pm #

Glad you are all back home and with some good answers!! Sweet dreams West family.

loren lizotte on August 5th, 2009 at 4:36 am #

Good to hear you have found the answer

Eve Johnson on August 5th, 2009 at 5:51 am #

Sounds like one step back, three steps forward!

Joan and Steve Odell on August 5th, 2009 at 5:57 am #

What a blessing!!! Prayers continue – Steve and Joan

Vicki/CO on August 5th, 2009 at 7:04 am #

Yahoo! Praise God…He is soooo good! Thank You, Lord, for giving the doctors and Josh and Tina wisdom in finding the problem and solving the mystery. Thank You that they got to come home to their own beds and surgery is not the option! What an awesome God we serve. God bless you, little family.

Jennifer Harris on August 5th, 2009 at 8:01 am #

Wonderful news! Thank the Lord for HE is GOOD…

Joel Snyder on August 5th, 2009 at 8:01 am #

Ella, I am so happy that this little bump in the road is solved. I must admit that it had me a little concerned since you have made such good and steady progress lately. I hope you and Mom and Dad have a great week and get caught up on your rest. Catch you later. Love,Grandpa!!!!!!!!!

Marge (A Friend in Indiana) on August 5th, 2009 at 8:01 am #

Yes, Praise God for this good news and His awesome goodness to us all. Continuing the prayers for Ella’s continued progress and asking His blessings for all of you.

Williamsburg on August 5th, 2009 at 8:07 am #

It’s amazing the comfort that a bit of helpful information can provide – so glad you were able to find this out without any more significant side effects – although it sounds like it hasn’t been too fun for Ella! Still, happy you’re home – hope you had a good sleep and that you’re able to move forward in the right way from here. XOXOXO

Fran on August 5th, 2009 at 11:10 am #

Happy Day! So glad the problem was identified and you were able to go home and catch up on needed rest. Prayers and hugs.

Kara on August 5th, 2009 at 3:58 pm #

Gotta love the easy fix.

Julie Kirk on August 6th, 2009 at 11:29 pm #

breaks my heart to think she has any pain at all ever…she is so blessed to have you. love to you 3.

Nicole on August 7th, 2009 at 7:31 am #

So glad to hear!! 🙂

Dawn on August 8th, 2009 at 7:46 am #

I am so happy to hear the good news!!! Hopefully this issue will be a thing of the past and she can move forward with her feedings without any discomfort. Thank God the two of you hsve been following her treatments so closely to figure out the problem as fast as possible. Take care, Dawn

Erin D'Elia on August 31st, 2009 at 7:11 pm #

I stumbled across your story while looking up complications with motility in CDH babies. I have a 13 month old son, who like Ella, is an amazing survivor. He was also on Reglan, and we decided to take him off of it about 4 months ago and have been having issues since. I would actually like to talk to you if you wouldn’t mind. You can email me if you would like. God bless. Your daughter is beautiful!

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