JOURNEY WITH JONAH

The lastest….

It has been over a week since Jonah was discharged.  We are feeling a bit overwhelmed, as our expectations were for his feedings to start to normalize after his heart was fixed. He is still throwing up once or twice a day and is not taking much volume at all either. His weight gain has not taken off as expected; Jonah is basically the same weight he was prior to surgery.  Actually, he’s pretty much the same weight he has been for the last two months. To put it in perspective, our 3 month old son still wears newborn sized clothes and diapers. We decided to get him checked out to see what was going on.  To start we saw Jonah’s pediatric Cardiologist yesterday (Thurs 7/28).  They did an echo and his heart is sealed up and working great!  Great news indeed, but now we need to find out why he still isn’t eating.

Next step was an appointment with a doctor of gastroenterology, which was today.  The plan laid out by this doctor and a dietician is to add formula to the breast milk which will add additional calories to each feeding.  Recently we have tried using powdered formula to do this but he didn’t seem to be digesting it or he threw it back up immediately.  This time we’re going to try the concentrated liquid version.  In addition to this, we are also going to have an appointment with a speech therapist to see if maybe he is having feeding issues due to the low muscle tone, which most children with Down syndrome have.

Please keep Jonah in your prayers, he is at a crucial point, if this doesn’t work he’ll have some testing done (x-rays, swallow studies, etc) to see why he isn’t gaining weight.  The last resort would be to surgically insert a feeding tube into his belly; hopefully it doesn’t come to that.

Bless you all! ~ D

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2 comments on “The lastest….

  1. Kristi from NC
    August 4, 2011

    Hey guys! I do not know if you remember us or not, but we are the Gouch family! We have 5 now. Our second son, Jonathan, has Down syndrome. He is now 11 years old. He had open heart surgery at 4 months of age in January 2000. If you ever want to talk, please feel free to contact us! Congratulations on Jonah and this awesome journey you are now on in the world of Down syndrome :).

  2. Beverly and Bert McIntosh
    August 31, 2011

    Hi- I only met you once but I know your Mom and Joan K. I am so proud of you to not have that test done or to have an abortion. You renewed my commitment to pray against abortion- for mother’s to change their minds, for doctors and nurses to repent and stop doing abortions.I had a fellow classmate at college that her son had a feeding tube until he was older – it is sad but he did well on it and gained weight and one did not know he was on a feeding tube if she did not tell you. I hope something else works, though. Know you are in my prayers.God bless your entire family!

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This entry was posted on July 29, 2011 by in Family, Heart Surgery, Jonah and tagged , , , , , , , , , .

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