Re: Hard time Breastfeeding

[Guest guest]

I had to pump and give my son bottles for well over three months. At first, he had trouble nursing (until he got a little bigger and a little stronger at about 4 months). While I was struggling with breastfeeding, he came very close to a "failure to thrive" diagnosis because he was not gaining any weight. I finally gave up altogther and only pumped and gave him bottles, because it became apparent to me after the "nursing" feedings that he wasn't getting enough and was still hungry. We eventually put powdered formula in the breast milk bottle for added calories (per the dr.) and that seemed to do the trick. I had struggled with breast feeding for so long. While breastfeeding, I was weighing him before he ate and afterward to be sure he consumed enough milk (and he did), but he expended as many calories working at feeding (breastfeeding is harder than bottle feeding) than he took in. Throughout the months of pumping and bottle feeding, I would (except at night, as I was exhausted) put him on my breast after the bottle and just let him "play" and do whatever he wanted. He tried so hard to nurse and we certainly bonded. I figured if he ate anything, great. If not, it was ok, because he'd had his bottle/nourishment. He ate every three hours (and it took almost an hour to feed him). With that, and the 1/2 hour to pump and clean the pump (around the clock), I was exhausted and stressed. I was probably obsessed with trying to make nursing work, though, because I felt like this was the first of many hurdles we would face, and I wasn't going to lose the first battle. Eventually, he could go longer between feedings and this helped. When I think about it now, I don't know how we did it. Other than the feeding struggles and being oxygen-dependent, my son was otherwise very healthy (no heart issues). While this sounds so difficult, I'm not trying to discourage your friend. I am so glad I did it. nursed at the breast from abut 4 months old until he was almost two. The next hurdle was going directly to a cup, because he never drank from a bottle again after we licked the breastfeeding problems.

I can't begin to tell you how much I believe breastfeeding helped my son. I know I sound fanatical, but I can almost believe all that I've read and been told about breastfeeding keeping children healthier, raising their IQs, etc. is in third grade now, in regular education (with pull out), gets As in many subjects, is keeping up with his peers in others, speaks very clearly and has been pretty healthy his whole life. I know some of this may otherwise have been turned out to be true and I don't know how much you can attribute to breastfeeding, but at least his speech I believe is so much better for it. Breastfeeding is difficult, but it strengthened the muscles around his mouth, no doubt.

It was also a wonderful experience I enjoyed with all my children and I didn't want to be deprived of it with my son with DS. Keep trying. Don't give up. If nursing at the breast doesn't work, pump and give bottles so he can stay as healthy as possible.

________________________________________________________________________

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[Guest guest]

Congratulations to you friend!

My bestfriends sister had a little boy last Wednesday, also born blessed. He struggled a bit in the beginning with nursing and I posted a question on Trisomy21Online and got wonderful responses that might help your friend.

http://www.network54.com/Forum/244888/thread/1167334488/Breastfeeding+-+~++and+any+other+BTDT+Moms

I nursed my daughter with T21 until she was 3years10months old. She stuggled for the first 24 hours, but latched on at that point. I can understand how your friend is feeling, and I pray her little guy gets the hang of it quickly. I do know of some Mothers who had to pump for a few weeks, months until their child got the hang of it, and then went on to nurse for months & years. The one article in the above link talks about different holds that help our children with T21.

Much love and support to your friend,

Peace, Tara Marie

http://www.emmasage.blogspot.com

On 1/3/07, joakrem@... <joakrem@...> wrote:

I had to pump and give my son bottles for well over three months. At first, he had trouble nursing (until he got a little bigger and a little stronger at about 4 months). While I was struggling with breastfeeding, he came very close to a " failure to thrive " diagnosis because he was not gaining any weight. I finally gave up altogther and only pumped and gave him bottles, because it became apparent to me after the " nursing " feedings that he wasn't getting enough and was still hungry. We eventually put powdered formula in the breast milk bottle for added calories (per the dr.) and that seemed to do the trick. I had struggled with breast feeding for so long. While breastfeeding, I was weighing him before he ate and afterward to be sure he consumed enough milk (and he did), but he expended as many calories working at feeding (breastfeeding is harder than bottle feeding) than he took in. Throughout the months of pumping and bottle feeding, I would (except at night, as I was exhausted) put him on my breast after the bottle and just let him " play " and do whatever he wanted. He tried so hard to nurse and we certainly bonded. I figured if he ate anything, great. If not, it was ok, because he'd had his bottle/nourishment. He ate every three hours (and it took almost an hour to feed him). With that, and the 1/2 hour to pump and clean the pump (around the clock), I was exhausted and stressed. I was probably obsessed with trying to make nursing work, though, because I felt like this was the first of many hurdles we would face, and I wasn't going to lose the first battle. Eventually, he could go longer between feedings and this helped. When I think about it now, I don't know how we did it. Other than the feeding struggles and being oxygen-dependent, my son was otherwise very healthy (no heart issues). While this sounds so difficult, I'm not trying to discourage your friend. I am so glad I did it. nursed at the breast from abut 4 months old until he was almost two. The next hurdle was going directly to a cup, because he never drank from a bottle again after we licked the breastfeeding problems.

I can't begin to tell you how much I believe breastfeeding helped my son. I know I sound fanatical, but I can almost believe all that I've read and been told about breastfeeding keeping children healthier, raising their IQs, etc. is in third grade now, in regular education (with pull out), gets As in many subjects, is keeping up with his peers in others, speaks very clearly and has been pretty healthy his whole life. I know some of this may otherwise have been turned out to be true and I don't know how much you can attribute to breastfeeding, but at least his speech I believe is so much better for it. Breastfeeding is difficult, but it strengthened the muscles around his mouth, no doubt.

It was also a wonderful experience I enjoyed with all my children and I didn't want to be deprived of it with my son with DS. Keep trying. Don't give up. If nursing at the breast doesn't work, pump and give bottles so he can stay as healthy as possible.

________________________________________________________________________

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[Guest guest]

congrats to your friend! my baby boy pj was born just over a month ago

on thanksgiving day. he has down syndrome and av canal defect(both

prenantal diagnosis.) he spent 10 days in the nicu but only for feeding

issues. while he was in the nicu i pumped and worked with a lactation

and o.t. specialist. we tried, but to no avail. mind you i was

recovering from a c-sec, drugged, tired, stressed and felt almost no

connection to my baby as a result of the c-section and the fact that he

was in the nicu. he didn't quite feel like he was mine. with all

those factors, it is no wonder that it didn't work out. now almost at

almost five weeks old, pj latches on with the help of a nipple sheild

(my nipples are flat). he will only nusre for part of the day, but i

am happy to have even that! the rest of the time i pump. if your

friend's baby is in the nicu, they are probably using a bottle to feed

or in my case a bottle and a nasal tube to feed. the nipple shield was

great because it was very close to the nipple used to bottle feed. i

use the medela 16 mm for newborns. please encourage your friend not to

give up. it does take time and patience. hope that helps.

>

> I have a friend who just had a baby on Friday. He was born with downs

> and has a PDA. He has been at Children's hospital since he was born

> and is having problems latching on, his mom is pumping her milk for

> him, but she is wanting to know how she can help him to latch on and

> start nursing. Hopefully she will be able to bring him home by Friday

> and that might help. Does anyone have any suggestions for her?

>

> , mom to -15, Rebekah-13, -11, Gideon-9 and

> -6, ds/asvd repaired

>

[Guest guest]

,

Give her encouragement to keep trying, but also permission to stop trying. This was so emotional for me to "give up".

Faith was born 5 weeks premature by c-section, weighed 3 lb, had a PDA and VSD, and spent 5 weeks in NICU. I had successfully nursed 2 other children and was determined. I pumped, fortified the breast milk, and gave her bottles for 2 months. I also tried getting her to nurse, but she usually fell asleep. Feeding a baby or pumping all day got me very depressed. I finally had to give up so I could be the mother Faith needed.

She is 9 years old, had both heart defects repaired and now has a "normal" heart. She is healthy, loves 2nd grade, very social.

It will be ok, either way.

ette

-------------- Original message from "krayzel7" <sevenpatriots@...>: --------------

I have a friend who just had a baby on Friday. He was born with downsand has a PDA. He has been at Children's hospital since he was bornand is having problems latching on, his mom is pumping her milk forhim, but she is wanting to know how she can help him to latch on andstart nursing. Hopefully she will be able to bring him home by Fridayand that might help. Does anyone have any suggestions for her? , mom to -15, Rebekah-13, -11, Gideon-9 and-6, ds/asvd repaired

[Guest guest]

My was born with AV canal and TOF and had a real hard time learning to nurse too. She was ng tube fed in the NICU, and when we went home, she was bottle fed with increased calorie formula they wanted her to take in too large of amounts for her. She threw up a lot, which pretty much defeated the whole purpose.

She could not nurse and bottle feed at the same time. She had serious nipple confusion and this really continues now at 6 year old! She is pretty set in what she will drink from and has a hard time switching to different modes.

She was extremely tired and it took forever for her to finish a meal. The method I used to get to her nurse was simply to have nurse 24/7 for about a solid month. :-) No exagerations, didn't get much else done in that time, but by golly she NURSED! And was well established by 8 weeks old. She went on to nurse til she was three and if I could do it over again, I would have nursed even longer.

I *know* that nursing saved her NG' tubes, saved her from being sick often and kept her in good health for all those years. It was by far the most important thing I did for her as an infant.

What is keeping him the hospital? How is he being fed right now? Ng's tubes are irritating and hurt when you swallow, and if he has a bottle, he may just be confused. My guess is, if she brought him home and just kept him at the breast with as little formula as she can get away with, he would catch on faster. All kids are lazy and take the easy road and even more so if you have low tone and it's lots more work. ;-) One of the factors is low tone in the mouth and exercise and practice nursing is the key to success. I think the number one thing she can do is to nurse him as much as he will nurse.

Kathy R had posted a great resource page for nursing just a few days ago : Down Syndrome Treatment/message/3823

Somewhere on that page is the url for a group on breastfeeding special needs babies which I used way back then. They were great, loaded with ideas that really helped. The hospital should have a lacation specialist helping too.

We were at Hope Children's and the lacation gal there basically told me she would nurse once I got her home and since this was number 7 for me, they let me take her out even though she hadn't really demonstrated the ability to eat with out her NG tube. She was right.... she did much better at home with both the bottle and breast.

I hope she keeps at it even though right now it's down right exhausting- in the long run, it will most likely be a huge time saver!

Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

Down Syndrome Treatment/

Listen to oldest dd's music http://www.myspace.com/vennamusic

Hard time Breastfeeding

I have a friend who just had a baby on Friday. He was born with downsand has a PDA. He has been at Children's hospital since he was bornand is having problems latching on, his mom is pumping her milk forhim, but she is wanting to know how she can help him to latch on andstart nursing. Hopefully she will be able to bring him home by Fridayand that might help. Does anyone have any suggestions for her? , mom to -15, Rebekah-13, -11, Gideon-9 and-6, ds/asvd repaired__________________________________________________

[Guest guest]

Hi

With Zoie I ended up pumping for her for a month and each time I

pumped I would have her practice on my breast. In a month she got

it and I ended up breastfeeding her for 22 months. I recommend

giving it some time. But I did have a limit of a month. Pumping is

sooo tiring.

>

> ,

> Give her encouragement to keep trying, but also permission to stop

trying. This was so emotional for me to " give up " .

> Faith was born 5 weeks premature by c-section, weighed 3 lb, had a

PDA and VSD, and spent 5 weeks in NICU. I had successfully nursed 2

other children and was determined. I pumped, fortified the breast

milk, and gave her bottles for 2 months. I also tried getting her to

nurse, but she usually fell asleep. Feeding a baby or pumping all

day got me very depressed. I finally had to give up so I could be

the mother Faith needed.

> She is 9 years old, had both heart defects repaired and now has

a " normal " heart. She is healthy, loves 2nd grade, very social.

> It will be ok, either way.

> ette

>

> -------------- Original message from " krayzel7 "

<sevenpatriots@...>: --------------

>

> I have a friend who just had a baby on Friday. He was born with

downs

> and has a PDA. He has been at Children's hospital since he was born

> and is having problems latching on, his mom is pumping her milk for

> him, but she is wanting to know how she can help him to latch on

and

> start nursing. Hopefully she will be able to bring him home by

Friday

> and that might help. Does anyone have any suggestions for her?

>

> , mom to -15, Rebekah-13, -11, Gideon-9 and

> -6, ds/asvd repaired

>

[Guest guest]

Lots of good advice has been given and maybe her little guy has it

figure out by now. For us, it took Gabe a full 30 minutes to latch

on EVERY time he nursed for the first 6 days. The first time I just

told him, " Look mister, you're going to have to work a little harder

at everything you do for your entire life so you may as well start

now and get used to it. " He just kept rooting around while I tried

to relax and be patient. I thought once he latched on he'd be fine,

but it still took 30 minutes each time we nursed! I did learn that

I needed to start him on the same side every time and it would only

take 20 minutes to get going.

--northern WI mom of eleven

> she is wanting to know how she can help him to latch on and

> start nursing. Does anyone have any suggestions for her?

>

> , mom to -15, Rebekah-13, -11, Gideon-9 and

> -6, ds/asvd repaired

>