Comments on: Feeding an infant

By: Carrie

Carrie — Thu, 21 Apr 2011 00:57:43 +0000

Our DS boy was in the intensive care for a week, so I started out pumping. When we finally could nurse he seemed to latch on and suck well. As this was my 11th child we were sent merrily home. He slept through the night early on as all my children had, and I thought nothing of it until we weighed him at five weeks- he had lost over a pound! We frantically sought help and a nurse from the NICU who had a daughter with DS called me and gave me this great tip:

As your baby nurses place your forefinger between the breast and the cleft of his/her chin and apply gentle downward pressure- LO AND BEHOLD! his whole sucking action changed! This more efficient latch (plus the SNS for a few weeks) helped put the weight back on.

That said, weight gain continues to yo-yo but is trending generally upward (he is 15 months now).

Hope this helps someone!

By: Susanna

Susanna — Fri, 10 Dec 2010 02:44:51 +0000

Hi Helen!

Not so long ago, I was right where you are! Our daughter had a complete AV canal, and major feeding issues from the start. I pumped from Day One, and am still pumping full time, at 5 1/2 months old.

I started out feeding her with a syringe, then switched to bottles. I had wrong info, though, and if I knew then what I know now, I would have stuck with the syringe, and tried using a nipple shield and supplemental nursing system.

She would take 1 1/2 hours to get 3 ounces by bottle.

She was hospitalized at 3 weeks for IV Lasix and received an NG tube then. We just used the tube to give her what she didn’t drink before she wore out.

She had her heart repaired at 5 weeks, as she did not respond to the Lasix and was failing fast.

She went home from her surgery with the NG tube, and we used it to give her the remainder of her feeding. She gradually took more per feeding, and a month later, she was close enough that her ped. okayed us taking it out.

Then another two months, and she was fast enough with the bottle (5 minutes per ounce) to try nursing. She was 4 1/2 months old. That was a battle and a half! And she went back to the long-drawn-out feedings! But worth it, because she has now been nursing for a month, and I am SO happy, knowing how good it is for her!

I use a nipple shield and the supplemental nursing system, and she still takes a very long time to eat–usually an hour to get 5 ounces, sometimes even longer. I’m not getting much else done in life-hahaha! But I know I’ll look back and think this went by too fast, so I’m just trying to enjoy it while it lasts.

Please check out our blog, and you can email me right from the blog if you like. I will be happy to encourage you all I can!

Blessings to you,
Susanna

By: Deanna

Deanna — Thu, 09 Dec 2010 05:46:32 +0000

Hi Helen,
in addition to what others have said about breast feeding, I highly recommend a hospital-grade breast pump if you don’t already have one. You can usually get one from the hospital or rent one on a month-by-month basis from a lactation consultant. They are quite a bit better for increasing supply than the ones sold in stores. Oatmeal and meals high in carbs and protein also worked well for me. We really struggled with breast feeding at first, it took about 3 months before things got easier.

all the best,
Deanna

By: Ali Haefke

Ali Haefke — Thu, 09 Dec 2010 04:38:42 +0000

Hello. I can’t address the issues of feeding that you’re having… but I’m thankful some other moms are. What I wanted to share was a suggestion that when you have time you go to the U.S. National Library of Medicine http://www.pubmed.com and check out the medical studies involving cardiac issues and CO Q10. We give our son who has DS CO Q10 daily as he has a mild heart issue. The studies will show you how important it is for heart function. I know it doesn’t fix every heart situation… but it’s excellent for so many cardiac issues.

God bless you and your family. He will help you through all of this and I truly believe things will get easier. Ali XO

By: Donna

Donna — Wed, 08 Dec 2010 23:06:05 +0000

Hello and congratulations on the birth of your dear son! My son is 3 now, and his name is John. I live in Australia. We found out he had DS at birth and he required bowel surgery for blockages and other bowel issues when he was 5 days old. We finally got him home after about 6 weeks.

John had a very, very small ASD and it didn’t require surgery, so I can’t really advise on cardiac stuff but I will let you know about our feeding.
Please be assured our kids with DS tire really easily, and it has a lot to do with their low tone. Of course, a baby with heart issues will tire easily as well, and your little man has the combination of both.

We had to wait some time after his surgery before he could try and breast feed, and I almost drowned him! A nipple shield helped him immensely. Having said that, he tired so easily and it wasn’t very successful. After about 5 weeks we transferred back to our regional hospital with the hope of weaning John off the nasogastric tube and getting him on to full time breastfeeding.
I felt a lot of pressure to get that happening in a week, but it was not going to happen in a hurry. He wasn’t ready and not getting enough milk to survive on. I made the decision to take him home with a nasogastric tube in so we could work on both (it didn’t worry me because I was once a RN). I had been pumping all that time and had a great supply to work with.

After a couple of weeks at home John wasn’t putting on weight and I really think he was just using up all the energy he had trying to breast feed, even with topping up via NG tube. So I started using Pidgeon bottles with him and my EBM. What a difference that made. He could finish a bottle almost! He had his NG tube out about a week later after that. What a relief!

I continued to express, and use bottles for about 5 months while I tried to get John breastfeeding. We succeeded and breastfed until he was 20 months.
It was very hard at times though and I just about gave up a couple of times.
I supplemented with formula as my supply dwindled at times too. If you want to try and stimulate your milk production just see if he will suckle (maybe even after you express) for a while. It really does wonders for the hormones.

I can’t remember the name of them, but you can purchase long teats which make feeding a lot easier. I wasn’t sure what you meant by “and started coming back from the nose and he really wanted to eat.” Does milk come out his nose when he feeds?

I really encourage you to try and stimulate your milk production because breast feeding is great for your son’s jaw development, and his immune system. Having said that, you main objective of course is just to get him to drink, and get some weight on. Expressing etc is a big commitment too, and really you need to find the balance that is going to keep you sane!

As long as he can do it all physically, the drinking will take time but he will get there. Again, I don’t know how much his heart issues are affecting his energy levels, and that may be playing a very large part. Does the hospital have a lactation consultant that you can talk to? Some know what they are talking about and can give good advice.

I wish you all the best and you will be in my prayers,

Donna

By: Jayme

Jayme — Wed, 08 Dec 2010 21:37:41 +0000

Hi Helen!
Congratulations on the birth of your baby! I just wanted to encourage you to keep breastfeeding. My little guy with DS wasn’t able to tolerate even the most hypoallergenic formulas, so hang in there with the breastfeeding–it’s worth it in so many ways!
Yes, stress can make your milk supply go down some. Have you heard of using the herbs fenugreek and blessed thistle to help your milk supply? You can find them at some different websites, I recommend http://www.herbalcom.com or http://www.vitacost.com or swansonvitamins.com Dr. Jack Newman recommends 3 of each, 3 times a day, so 9 total of each daily.
I have used these herbs with my last two babies. It makes a difference. Also avoiding foods that decrease milk supply is good. Sage, peppermint (even peppermint candies), cabbage, and lentils.
I found tons of good breastfeeding info at http://www.kellymom.com Go to the section on breastfeeding, and you will find all the info you could ever want!
If you have any more questions, just ask. I am happy to help where I can. osborntandj@gmail.com

Blessings,
Jayme

By: Qadoshyah

Qadoshyah — Wed, 08 Dec 2010 20:45:27 +0000

Hi Helen,

My little brother was in the NICU for 2 wks after he was born. And it took my mom a lot of work and persistence for him to breastfeed. But, he eventually did breastfeed and breastfed for 2 years. Here’s her experience: http://www.gotdownsyndrome.net/nursing.html. Feel free to email me and I’d be glad to help more – qf@gotdownsyndrome.net

Qadoshyah

By: Andi

Andi — Wed, 08 Dec 2010 18:04:15 +0000

Hi Helen!
My baby (now 9 months) had some similar problems. You can email me and I can give you my phone number. I know how stressed you must feel but I do have some advice for you. andi222@hotmail.com
Andi

By: Helen

Helen — Wed, 08 Dec 2010 14:03:35 +0000

Hi I just had DS baby. It’s been a month now. He is still in the hosp. because of some problems. ASD, VSD, PDA at the same time. Right now, we are working on him for bottle feeding. I breast pumped for almost a month but i am having low supply already maybe bec. of stress.
He sucks for 4 to 5 times and started coming back from the nose and he really wanted to eat. When he gets tired he will just fall asleep and ending up putting the rest into NG tube. I am concern how come that is happening. I am hoping he will be able to suck the whole milk from the bottle without any problem like that. Any advise ???thank you..

By: Liora

Liora — Wed, 23 Jun 2010 10:45:43 +0000

Medela makes a Special Needs infant bottle. I bought one but never even used it, because our baby nursed pretty normally. A slightly low suck at first because she was getting oxygen and feeling kind of ill I guess, in the hospital. But perseverance and a day or two, and she came through just fine. She had only one bottle that whole time in the hospital (day 1 of life…stupid me consented) but then I started asserting myself. No more formula. I’ll nurse her. No I won’t pump it out so you see “how much”, I’m not that great a pumper. But I knew her suck was good enough to get colostrum, and stimulate milk coming in and it was, for us, working fine.

In other cases even if the baby is not strong but the mother wants to nurse, it can really be beneficial to pump pump pump and feed baby by adjustable special needs bottle for a couple of weeks or until the baby gets strong enough to nurse normally. The bottle is adjustable and you just go from easy to hard, then to nipple. You’ll be glad you did!! Liora in Beijing