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Discussion Starter · #1 ·
I need your help. I also need to say I am in the very fortunate position to be CLW my four year old and what a blessing that is. I had always heard of moms who are where I am now and were so grateful to have chosen CLW for their family.<br><br>
I gave birth to my eighth child on Monday evening, it was a glorious birth and I am so thankful for that and the support of my husband and birthing team.<br><br>
Baby had many problems right away and is now on NICU on a vent. He most likely has down's syndrome and possibly some other long term issues that we will have to address. We were not able to breastfeed but had some skin to skin times and I was able to moisten his lips with colustrum and get a few drops onto his tongue. I am sending breastmilk to the NICU and pumping but getting very little right now. Until he is off the vent they will not be giving it to him. Hopefully in a few days.<br><br>
We may never be able to get him on the breast and that is breaking my heart. I don't even know where to start with all of that. Never realized before how easy breastfeeding had been for me and all the little bumps we had before seem so miniscule by comparison.<br><br>
So big sister is a champion nurser, she does not have the frequency I need so I am pumping too. It is such a comfort to nurse her right now and I really think she is helping my milk supply to come in and get established right now, especially in the early morning hours and bedtime.<br><br>
The postpartum nurse was extremely shocked to come in and find her in bed with me <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/lol.gif" style="border:0px solid;" title="lol"> OMG you're nursing her and how old is she! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/lol.gif" style="border:0px solid;" title="lol"> Here she is with feet that reach all the way down to mine and the end of the bed!<br><br>
Then she gave me a breastpump and proceeded to tell me in a hundred different ways how to damage my nipples. When I didn't agree she became very offended and asked where I got my info from and I told her LLL and personal nursing experience. I am certain she has destroyed many new moms attempts at breastfeeding. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br><br>
So if anyone can help in any way and tell me the best way to get my supply up and pump for this baby. I am a terrible pumper, hate the things and don't let down well. Any ideas how to work with baby when he gets home? We are going to have to accept bottles just to get him discharged in a few weeks and may even have to bring him home on a stomach feeding tube. He does not root or suck at all.<br><br>
Anyone know anything about breastfeeding and down's syndrome?<br><br>
Please tell me again how wonderful it is that I have continued to nurse my dd and through the pregnancy. My hormones and the stress are making me feel <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/gloomy.gif" style="border:0px solid;" title="Gloomy">: . I am questioning everything I ever knew or thought was right in life.
 

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Hugs to you- your baby is so lucky to have you as his mama! And how wonderful that your DD is nursing- it is much easier to keep your supply with nursing and pumping, as opposed to just nursing.<br><br>
Can you rent a pump? I have a Lactina, and it works tons better than any other pump I've ever used. Since your baby is not able to nurse, you may be able to get insurance to cover it. I get more pumping when someone is nursing on one side and I'm pumping the other.<br><br>
FWIU, babies with DS can have low muscle tone and have a hard time stimulating a letdown. Nursing simultaneously can help that, since your DD can stimulate letdown.<br><br>
I hope that helps.
 

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It's wonderful that you've allowed your child to nurse to meet her needs. Maybe she is will be a perfect big sister since she has already unknowningly been a big help to him? That's a special bond, I think.<br><br>
Lots of babies with Trisomy 21 do breastfeed. He may not have had a suck or rooting reflex because of his breathing or heart problems. Or it may be something that lasts.<br>
If he will not latch, there are special bottle nipples, like the Haberman feeder, to get food into him. Even a feeding tube is not as bad as it seems on first glance.<br>
Pumping advice - warmth and massage beforehand help stimulate in a physiological way. So, a warm cloth for 5 minutes and then a massage of the whole breast, then pump for a while, then do more massage, will help get a little more milk out. Usually, a pump setting just under that that causes pain (so, as high as is comfortable) gets out the most milk, but experiement.<br>
Can you get something that smells like him, or reminds you of him to help let down?<br>
Can you get a donation of some milk from a friend? It may help you relax to know there is breastmilk for your baby even if you can't pump well.
 

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You are probably not able to hold him yet, right? Can you pump while sitting next to him in the NICU? Are you able to pump while your 4 yo nurses on the other side? Just some thoughts.<br><br>
Your kids are very lucky to have you!<br><br>
My nephew has DS, and while he didn't have any other issues, he was able to nurse after 2.5 months of struggles. My SIL went on to nurse him until he was just over 2!
 

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congratulations on the birth of #8, can't wait for you to get to bring him home. so sweet you have your dd nursing. so good for her and you. keep doing your research and tap into all the information on this forum. i peeked around the parenting special needs and there are other mom's here that are breastfeeding a child with down's.
 

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Discussion Starter · #6 ·
He does have low muscle tone, so far his heart is fine. The breathing problems are making him very weak. My husband drove 140 miles to rent a Lactina for me to have right away. He is doing the same today to deliver frozen breastmilk for when they are ready. Dd is interested in nursing but not in doing it while I pump. That is OK since right now they are not able to give him the milk and I just need to bring it in and build supply for when he is ready. I can't hold him now because he is on a vent and sedated. Today I am resting and trying to recover so when he is ready for me I can go in.<br><br>
I was able to hold him right away after birth and then again a few minutes later when they got him stimulated and breathing better. We were skin to skin and he nuzzled my breast and I squirted colustrum on his lips and tongue. I was able to do that a few more times before he had to be transferred to the NICU. At first no one realized how sick he was so he didn't go right away. The closest is seventy miles away and a transfer team came to get him. He really is doing much better there.<br><br>
It is possible he may latch once he is over the breathing problems. He also has an old intercranium bleed that happened in utero that they are trying to figure out. It is clotting and no swelling on the brain.<br><br>
He is a big nine pounder and 21 inches, a giant in the NICU.
 

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Congratulations on your new baby. I think it is wonderful that you have nursed your daughter all this time. I do not have any advice but I wanted you to know that my friend's son has DS. He did not nurse at first and had a lot of issues (ie heart, etc). Despite this, he did nurse eventually. I am sharing this so that you know it really is possible. I wish you and your family the best. Keep us posted how you all are doing.
 

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Hello! Congratulations on your new arrival! I'm sorry to hear that his health has him in the NICU right now, I hope he improves quickly. What's his first name, if you don't mind sharing?<br><br>
I am a tandem nursing momma to a 4 1/2 yr old and an almost 3 year old. My younger son has Down syndrome. He was not diagnoised until he was 3 wks old and did not require NICU care after birth, so we started nursing immediately. He had a fabulous latch from the beginning but tired easily while nursing and slept longer between feedings than most newborns.<br><br>
I have an essay about his birth and our nursing relationship that I can email or pm you. It was published in a wonderful book, <span style="text-decoration:underline;">Gifts: MOthers Reflect on How their Child with Down Syndrome Enriches their Lives</span>, that I highly recommend you get a copy of asap. <a href="http://giftsds.segullah.org/" target="_blank">Gifts Info</a><br><br>
I pumped for Sean and bottle fed at first, but tried every day to get him to latch on and nurse without difficulty. Finally he was strong enough to fully feed at the breast when he was 4 months old. I continued to pump for his needs at daycare until he was 22 months old, and let him nurse on demand at home. Then I quit working and have let him follow his own CLWing path. I am so blessed to have my nursing relationship with him. It really helped bring us together and get to know each other as we ventured into the world of SN parenting.<br><br>
Do not give up on your dreams of nursing your new son! It can be done, even with the delayed start! Use an SNS if you have to, or a Haberman feeder. Both are things the NICU nurses or hospital LC should be able to help you with. My son was able to feed well from a Playtex latex natural latch slow flow nipple, on the bottles with the drop in bags. At the 07 NDSC convention, a speech pathologist I listened to highly recommends this type of bottle for our babies.<br><br>
I'm sure you have a million questions and a lot to learn, but take it easy and try to remember that first things first- love your baby and baby your baby- just concentrate on feeding him, caring for him and getting him home. That's what he needs the most right now.<br><br>
A wonderful online resource for Ds is : <a href="http://www.downsyn.com/phpbb2/index.php" target="_blank">DownSyn boards</a><br><br>
Let me know if you'd like to read my essay. Also, feel free to look at my link below & the other slideshows I have made about my son. Much love to you!
 

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<img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2"><br><br>
Congrats on your new baby and I'm sorry he's so sick.<br><br>
You know that nursing through this pregnancy had NOTHING whatsoever to do with his health issues.<br><br>
Just keep on pumping- eventually you'll learn how to let down for the pump. Hopefully he'll be able to latch on once he's stronger and healthier, but if not you'll adapt to pumping.
 

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Big hugs to you-the NICU sucks. My little one had very poor muscle tone as a baby and they swore up and down to me that he wouldn't be able to nurse, but he did. He needed a nipple shield at first because he couldn't form a strong enough suck, but we got past that with time.<br><br>
A friend of mine has a baby with ds and she did eventually get him to nurse exclusively. He was pretty sick at first (he had heart complications) and it took her a lot of time, but she did do it.<br><br>
I think it's great that your DD is still nursing, that will certainly help your supply on times that the pump isn't doing it for you.<br><br>
All the things you are doing for him right now (skin to skin, putting colostrum on his lips, holding him right to your breast) is making a great starting foundation for nursing. Be patient, ignore the naysayers (there seem to be lots of them in the hospital), and count the time until you can bring your sweetie home with you where he belongs.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> Mary
 

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Discussion Starter · #11 ·
Nathaniel (means Gift From God) is doing better today and might be able to come off the vent. They will start feeding him my milk today and will avoid artificial nipples.<br><br>
Thank you very much for the support and to the mom who posted about her son I am going to look at everything you posted and plan to pm you my address too.<br><br>
I love the wonderful mamas here.
 

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not sure if someone mentioned this - kids crawling off to trouble so no time to read - but there is actually a book on breastfeeding your child with down syndrome!! congratulations!!!!
 

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Discussion Starter · #13 ·
He is off the vent and breathing on his own. Was able to pump at bedside and talk to IBCLC. His mouth looks good. Hopefully soon we will be able to work on nursing.
 

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I'm so glad he's improving!!! my dd was born with a chromosome disorder, she has a lot in common with most children with Down syndrome (was in the nicu 5 days). I hope in your case you won't have to pump for too long, hopefully once his health is up and he has more energy, the desire to suck will kick in.<br><br>
and luckily, you have another nursling! that should make things easier! the Lactina is excellent. I pumped exclusively for 21 months. the yahoo group EP'ers was a Godsend. I pumped eight times per day, 20 minutes per session for the first 2.5 months, then gradually went down from there. Because your dd is nursing, it should be easier for you, because if you miss a session it's no biggie as long as she's around (especially when he's so little, you don't have to worry about making mass amounts). it's good to get the boobs working full force soon after the baby is born, the hormones are where they need to be to increase your supply. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> Good luck!
 

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just re-read my post - i meant congrats on the baby - not the fact that there is a book - glad to hear he is doing better - my dd has hypotonia and i am pretty sure if i was not tandeming and nursing them at the same time when she was a newborn we would have run into some serious problems since she was not strong enough to get let down.......good luck with everything! God Bless! and do NOT question the fact that you nursed and are still nursing your dd - it will be VERY benificial for your new baby - simultaneous nursing will make it so much easier for the baby!
 
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