DownSyn Forum

momtomax · Posted: July 21 2010, 5:08 AM Post subject: Poor Feedings

My son Max is 7 weeks old and I want to scream when I think about his feedings. He had a hard time when he was first born learning how to take a bottle. Well he finally got the hang of it sort of. I pump my breastmilk and then add formula to it for extra calories. He was doing so good last week and the weeks before. He would usually take around 85 cc every 3 hrs sometimes more. I was using the blue nipple from the hospital. He would take anywhere from 15-45 minutes to eat. Well for the past 3 days, he has done horrible. It's almost like he has forgot how to suck again. He will play around with the nipple for a while and then he will get ahold of it and eat. He also gags alot now and he didn't before. I don't know what to think. I have read so much on poor feedings. Is he aspirating? Reflux? Just plain forgot how to suck again? Bad positioning? Is it just due to down syndrome? His complete av canal defect? I am so sick of worrying about his feedings!! He is gaining weight like he is supposed to, well I am not sure about the last 2-3 days though. I am so frustrated. His heart failure symptoms are getting worse. His breathing seems to be labored all of the time, he sweats more during feedings, he's more tired, his color is bad more, and his liver is now swollen too. His belly always looks so big to me. I could go on and on. We see his cardiologist today. Can anyone help me???? Please and Thanks!

Tigger · Posted: July 21 2010, 8:00 AM Post subject:

It is really hard for them to feed when they are in heart failure. Talitha had to be tube fed - she couldn't feed orally, she was just too tired and sick. I hope things went ok with the cardiologist. It sounds to me like it is time to think about surgery. It is horribly scary to hand your child over for heart surgery - most likely the hardest thing I have ever done - but the improvement afterwards is miraculous!

It is fairly normal for babies with DS to feed slowly - low muscle tone makes it harder and so does the heart defect. He could also have reflux and/or be aspirating but if he was feeding fine (if slowly) up until now then it sounds like something else is going on and he needs to be thoroughly checked over. I hope you find some answers soon - I know how hard it is to be pumping, trying to feed them, worrying all the time about their heart and heart surgery and dealing with the inevitable day to day issues of life. I felt like I never slept for Talitha's first few months. (((hugs)))

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Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

grantsmom1 · Posted: July 21 2010, 9:13 AM Post subject:

I hope Max's trip to the cardiologist can get you some answers. It doesn't sound like he has the stamina to eat right now. Hang in there!

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Robyn
Grant (6/06 DS), Logan (12/08 )

babystpierre · Posted: July 21 2010, 10:15 AM Post subject:

I just wanted to say that I am thinking of you!!! ~hugs~
I hope the trip to the cardiologist shed some light on what needs to go on to help with the feedings!
Thinking of you~ Lauri

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AliMama · Posted: July 21 2010, 10:11 PM Post subject:

I've been there, so I know how tough it can be. I pumped and supplemented too, and it seemed like all I did was feed or pump! Shocked

Sounds like he needs the cardiologist right now--

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Maresa,
Mom to Alisa (10-29-2008) DS, complete AV canal repair on 3-6-2009

nancy l · Posted: July 22 2010, 10:56 AM Post subject: poor feeding

My Zoe had that problem, 6lb14 at birth but only 8lb at 2 1/2 months. She had complete avsd and her surgery fixed it all. Now at almost a year she is a great eater and a bit of a chunky monkey. surgery is scary but without it our little ones have no energy to eat

good luck

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Zoe's Mommy

grantsmom1 · Posted: July 22 2010, 11:09 AM Post subject:

How did the cardiologist appt go?

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Robyn
Grant (6/06 DS), Logan (12/08 )

LinMac · Posted: July 22 2010, 11:53 AM Post subject:

Any news on Max?

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Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 8 - DS)

First day at school

Ericanaysha · Posted: July 22 2010, 4:41 PM Post subject:

Just seeing this. Hoping the heart doc could give some answers.

Prayers!

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~Erica~
Mama to Natalie (7), Caleb (3), and Ephraim (16 months- MDS)

momtomax · Posted: July 23 2010, 4:50 AM Post subject:

Thank you for all of your replies! Max's appointment went ok. We didn't get to get the echo done, thanks to scheduling, but we will get it next week. The doctor said this will let us know how much worse his heart is. I explained all Max's symptoms to him and he said this was normal for Max's condition. It said we were expecting this and his symptoms will get worse, that is why he needs surgery. He said our goal is to get him to 15lbs for surgery because the bigger the baby, the more successful the surgery is. As far as feedings, he didn't say much. He said his feedings will be more difficult due to his heart and down syndrome. Max did weigh 9 lbs and 8.5 oz though which is awesome. He is gaining the appropriate amount of weight each time we see a doctor. Hopefully this continues!! So he increased his meds and put him on sodium because his level was low. We see him again in 1 month. So now back to obsessing with each feeding!! I would do anything for him to just gulp each bottle down each time!! I know we will get there eventually....hopefully!