AnnieW
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AnnieW, March 8,  2020  9:19pm EST

ASD, VSD and feeding

My daughter is 7 weeks old (3 weeks old, adjusted age). We knew since the 22 week ultrasound that she had duodenal atresia that would need to be repaired surgically soon after her birth, and we knew that she appeared to have a couple of VSDs that were predicted to be asymptomatic at birth. 
 

It turned out that she had a moderate ASD and VSD. Since repair of her duodenum, her digestive system is working perfectly, but feeding by mouth has been a struggle. They placed an ng tube before we left the hospital, and we've been home for 3 weeks trying to help her learn to bottle feed. She takes Lasix and ranitidine and tolerates feeds really well, but she is either not hungry or not awake/energetic enough to take much from a bottle. 
 

Can anyone share about how you worked with docs, nutritionists, and occupational therapists when you had an infant learning to feed orally? How could you tell that your baby's heart was causing feeding issues, vs other causes? What were the turning points that allowed you to wean your infant from tube feeding?

6 Replies
  • AHAASAKatie
    AHAASAKatie, March 9,  2020  9:35am EST

    Good morning, I am so sorry that you are having to manage this! I can share the information we have on feeding tips for you. Please let me know if this is helpful and know that we are here to support and to listen. Best Katie

  • AnnaMc
    AnnaMc, March 9,  2020  10:49pm EST

    Hello Annie!

    I am a fellow heart mama and I just wanted to reach out after reading your post! While my daughter's feeding journey has been a bit different from yours, I wanted to let you know that you are not alone in this! Feeding can be one of the absolute biggest challenges for babies with congenital heart defects.  
    It sounds like you have some concern about if your daughter's heart condition could be the cause of her feeding difficulties. If I were you I would get in touch with her cardiologist to get their opinion. What you are describing reminds me of how my daughter fed before her surgery. (I'm certainly not a physician and don't know your daughter's case, so please don't think of any of this as medical advice)

    Feeding therapy with an occupational therapist was a wonderful thing for my daughter! It seems as though a lot of babies that have required intubation in infancy end up with some kind of oral aversion that can make oral feeding a challenge.

    Please feel free to reach out to me personally if you'd like!

    I also wanted to let you know about a couple resources that may be helpful to you...

    If you use FaceBook at all there are some great groups that you might find helpful. "Heart Mamas" is one of them.

    Also, there are two Congenital Heart Defect organizations you can check out:

    Mended Little Hearts

    PCHA (Pediatric Congenital Heart Association)

     

    I wish you the absolutely best!

    Anna

  • chrissymc
    chrissymc, March 9,  2020  11:48pm EST

    Hi Annie: As a mama, feeding tubes are tough, because that is not how you imagined nurturing your baby. But it does get better. My son had an ng tube his first year of life, When he was medically stable, he received a feeding tube had that until he was 2 1/2. He began eating with his mouth when he was well and in a safe place medically. We worried about oral aversion but there is nothing this kid will not try.

    What was helpful was to always offer the bottle first and treating the tube feed like a bottle feed routine-not just plugging in and sleeping through it. Maintaining a feeding journal is also helpful for you and treatment providers: what time did the feed start/end, how much taken by mouth, total volume, etc... We were also under the care of an occupational therapist, speech therapist and dietician through the Missouri First Steps program.  Invest in a baby scale and keep a record of weight.

    What is ultimately important is that your child is healing and growing. Stay in communication with your cardiologist and make certain they know your concerns.

    Big hugs to you,

    Chrissy

  • AnnieW
    AnnieW, March 16,  2020  3:23pm EST

    Thank you so much to everyone for the solidarity and resources. I love the specificity of tips-- please continue to share. 
     

    I think we are already doing the right things and seeing the right people, so what also helped is hearing, "My child got through this and eats by mouth now." My friends send me blogs about feeding tube horror stories, and while that is far from my experience, it's hard not to worry that maybe I'm missing something or not fighting hard enough. 
     

    Very grateful to you, Katie, Anna, and Chrissy. 

  • Molly10577
    Molly10577, March 28,  2020  5:18am EST
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    Hi Annie,

         I hope you things are going better. I'm so sorry you are experiencing this. My daughter, Brinly just turned 11. She was most diagnosed with her ASD until she was 2. At that time she weighed less than she had at 9 months. We did work with nutrionalist and OT, OT and speech. If I can be of any help to you, please let me know. 
    Molly

  • Briannagrace
    Briannagrace, July 28,  2020  1:57pm EST
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    Hello! 

    Just thought I'd encourage you as well. My daughter (now three years old) was born with a CHD called Truncus Arteriosus and had surgery at 5 days old. I would say feeding was one of the most challenging parts in her recovery and development for the first year. We worked with a PT, a feeding therapist, nutritionist, and a gastroenterologist. Our girl had the physical capability to eat ******, she didn't have food aversions or swallow issues, so the fact that she didn't eat was so confusing. All of the specialists brought different things to the table, but I have to say our gastroenterologist was the most helpful. She figured out that our daughter's body wasn't sending (or recognizing) proper hunger signals. So she just wouldn't eat. She started us on an appetite stimulant that actually got her eating by mouth! She had an NG tube until she was 9.5 months, and then began eating everything by mouth one week into using an appetite stimulant. Your story may not at all be like ours, but it's encouraging to know that there are different options and routes to try when attempting to get a child to feed ******. Good luck to you, and please reach out if you have any questions!

     

    Brianna

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