Friday, February 24, 2012

Breastfeeding Polls

Next week begins a two-part series on breastfeeding a baby with Down syndrome. To get ready there are a couple polls on nursing over in the left column. Please take a moment to share your experience in the polls.

Because breastfeeding can be complicated there are several ways to answer the question: did you breastfeed? For the purpose of this poll, the question is did your baby end up nursing from your breast? Even if you used nipple shields or an SNS feeder, please still select one of the options indicating that you were able to breastfeed.

We would love to hear your thoughts on your breastfeeding experience, so please leave them in the comments section.

35 comments:

  1. My lil guy was 10 weeks early and I pumped BM for him for 17 weeks before I got him on the breast. Once there we have had no issue's. He is 1 today actually and I plan to BF as long as he want to be there. :) I also nursed my daughter 15 months up till her brother was born.

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  2. The first thing the Dr's told me was that my baby had Down Syndrome, the 2nd thing they told me was to not plan on her nursing because she won't be able to bring my milk in because she was too small and their tongues don't work properly! That devastated me more than the Downs. Right as they were saying that, Katy was smacking her lips together making a loud sound, I said "well it sure looks like she wants to nurse!" It was very difficult, we had to do a feeding tube and I pumped and we tried the tube that connects to your breast, she was doing well I thought, but she wasn't gaining weight. We ended up at Primary and they were weighing her after each feeding and I discovered the scales were off. It was a very emotional, tiring time, I was exhausted, I cried a lot and finally gave in to sone bottles only at night and once she got to 5lbs she started to pick up and we won the war, she nursed til she was 3 years old.

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  3. I hope I didn't throw off the results on the "how long did you breastfeed" poll question--my little guy is almost 11 months old and we're still going strong! I hope to make it to at least 18 months.

    Colin was born at 37 weeks, and was passed right  through the window from the birthing room to the NICU (I wasn't even allowed to hold him, because a cardiologist had diagnosed (with 95% surety) a coarctation of the aorta at about 7 months gestation. Long story short, the coarct was ruled out, but he remained in the NICU for "feeding issues" (he was weak and very sleepy), very elevated white blood cell count that required IV antibiotics, and a difficult time maintaining his oxygen sats above 85%. I was only "allowed" to do practice nursing sessions with him, and then only on their schedule, and the nurses would finish off with a pump feed (through his NG tube). After a little over a week of this I started to get irritated and upset--I had successfully nursed 5 kids before him, including a child with autism, which had been challenging but ultimately rewarding (he actually only nursed for 10 months, which was about 3 months beyond what he was enthusastic about. Haha), and I knew that, given enough of an opportunity, we could figure out the whole breastfeeding thing. I felt like the NG tube feeds were a crutch--they were faster and easier for the nurses than a bottle feed when I couldn't be there. I just felt in my gut that he'd get the hang of it if eating by mouth was his only option. Once I could tell that his condition was stable and that the only things keeping him there were the feeding and oxygen issues, I begged and pleaded and got our family doctor to petition the NICU doctors to let us take him home so we could work on feeding around the clock instead of just for the time I could be in the NICU with him. We eventually convinced the right doctor, and he came home, where he was still sleepy and weak (he was at just barely 5 lbs.)--& the docs at the hospital required us to have a home health care nurse come chart his growth twice a week. We were also instructed on how to place an NG tube, just in case he didn't get enough nourishment from the bottle- and breastfeeding. I was thrilled when he consistently gained weight and never needed the tube again! I did end up doing a lot of pumping and bottle feeding because he just wouldn't stay awake long enough to nurse enough. But when he hit 7 lbs, he was able to take more and more of his feeds at the breast (my dr had told me it'd probably be that way, so I persevered), and we eventually completely phased out the bottles. He'd always had a great latch--just not the stamina he needed. Now, at almost 11 months, he shows no signs of slowing down. It's an awesome feeling knowing that all that hard work early on is totally paying off!

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  4. I am SO SORRY my comment was so long!!! I even tried really hard to give the condensed version, and deleted a bunch of stuff. Sorry! :/

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    1. NP. The info is much appreciated :-)

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  5. I pumped the one month Abby was in the NICU, she was fed breastmilk along with formula. Once she came home, we tried the supplemental tube, it didn't work. She had an NG tube for about 2 months that I would give her breastmilk and formula in. I put her to the breast every time I fed her through the NG tube. After about 4 months she finally got the hang of it and I was able to breastfeed her exclusively until she was about 26 months. It was very trying, very exhausting, and very worthwhile.

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  6. My Grant needed a TEF/EA repair the night he was born, so he got no feedings for the first 10 days (all IV feeds). His inability to eat by mouth for the first 10 days of life led to him not having a good suck/swallow rhythm and his newly repaired esphogus didn't make everything flow downwards the way it was supposed to as well. He had an NG tube to get the breastmilk that I was pumping and we tried with the bottle after he healed (still in the hospital), but he still couldn't get the coordination down. For that reason and b/c of fears that he couldn't protect his airway b/c of the esophogus issues, he had a Nissen done and a G-tube placed. He was in the hospital for 59 days with all that and when we took him home, the plan was to continue the G-tube feeds and practice with the bottle. He never quite could figure out the bottle feeds well enough to rely on it alone for nutrition (much less breastfeeding) but as solid food was introduced and thickened liquids, he got better and better. Now at age 5 eats and drinks most everything well with only a few minor issues. I pumped for an entire year to give him through his G-tube and at a year slowly progressed to Compleat (kind of like Pediasure) and more solid foods. I had hoped to nurse, but with everything that happened in those first few days and weeks, I was just glad that pumping went so well for me that I could at least get him breastmilk for that first year!

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  7. I was told that V would not be able to nurse b/c she had Ds. She had Duodenal Atresia repair, which is a surgical procedure, so I had to wait to feed her for about two weeks. Once I was given the opportunity t nurse her she latched right on. She never took a bottle and went straight from the breast to a sippy cup. She nursed for sixteen month and it would have been longer but I ended up having surgery and was down for two weeks. The adjustment for her was easier than it was for me! :)

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  8. We breastfeed once or twice each day, but the rest of Ben's feedings are pumped breastmilk. He's almost 7 months old now, and I wonder - if I really pushed it - if we could breastfeed exclusively.

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  9. John Michael came home after 8 days in the NICU. It took him a while to be able to finish all the breastmilk in a bottle that they wanted him to consume without falling asleep. Nursing in the hospital didn't go well, so I pumped and delivered. Once he was home, I was determined to breastfeed, just as I had my 3 children before him, so I would pump one side and try to nurse on the other. Within 2 weeks, he was solely nursing and continued until he was 11 1/2 months old and started biting very hard (OUCH!) with his sharp little teeth. I'm so glad I persevered. Had I not had the previous experience, though, I don't know that I would've stuck it out in the beginning when he would constantly fall asleep and his latch wasn't very strong. We used a lactation consultant to help with the latch and he was good to go after that... I think it was very good for his jaw, oral tone, and now speech. He never had a tongue thrust, and I can't be sure that nursing helped that, but I think it might have...

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  10. My daughter had duodenal atresia, so could not take any food orally for a couple weeks. I pumped and she bottle fed, but didn't really catch onto breastfeeding. I wanted her HOME, so I bottle fed her and then tried the nipple shield. We kept doing that occasionally and at three months she would have been able to nurse exclusively, but I was back at work and could only pump so often! She nursed with increasing formula supplementation until 10.5 months. She could have kept going, I had to stop for me and my sanity :) (After nursing her and training for a marathon, I decided something had to give!)

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  11. My little man arrived 6 weeks early, didn't even start taking the bottle for every feeding until about 2 days before he was discharged from the NICU (he was in for 28 days) and didn't start breastfeeding until he was 2.5 months old. Now I can't him to take a bottle and he's 4 months, but I'm not going to complain because pumping and then bottle feeding was a PAIN! :)

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  12. I had planned to BF exclusively and top up with formula...something that should be so natural was very difficult for me. I tried to BF for 5 days and Connor lost too much weight and became dehydrated...we then found out he had DS and that coupled with a visit in the hospital made for a VERY stressful time. I actually did not produce milk and after buying the BEST pump, eating fenu greek seeds, and talking Domperidon i still did not produce milk. So plan B it became and since being on Similac exclusively from about 2 weeks old I am proud to say he is happy healthy and gaining weight at about 1/2 pd a week. I cried and cried when i couldnt BF him, it took me a very long time to get over it. My sister was the one who reminded me that it was ok and that as long as he was eating and gaining weight its all that mattered. I have learned to reshape my expectations..but we are extremely blessed :)

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  13. I tried to nurse at first but his latch was really weak,so I used a bottle and pumped around the clock.i offered him the breast first everytime and he would nurse after finding the right hold and being patient so that he could latch.i found laying him across my lap,one hand behind his neck supporting his head and my breast in my other hand helped alot.within 3 weeks his latch was great and we gave up the bottle and the pumping around the clock.hes nursing like a champ at 1 month old! Just took some team work but I knew he could do it.good luck to all the babies & mommies that want to breastfeed!

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  14. Ella was post diagnosised for everything. We were in the NICU for 13 days, mostly for feeding issues. I pumped and fed her BM. Once she got the hang of the bottle she really didn't want anything to do with the breast. I think she had to work too hard. I am ashamed to say I didn't try and try to work with her, but felt b/c I was giving her BM that was the most important part. Also when we were trying she would eat a tiny bit and then stop. I would then have to pump the rest out otherwise I got blocked, but needed to feed her still. I was alone at the time and it was very complicated and frustrating. Today she prefers the bottle and will eat the most, and being in the 3rd% for weight that is what is most important to me. She still gets the BM which is better for her and everyone can enjoy in the feeding process since I can't be there during the day.

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  15. This is an important topic. Thank you for offering a place to discuss it :). I nursed all of our other children and planned on breastfeeding Bridget exclusively, too, for as long as I could. It didn't have any bearing on my decision to breastfeed her, but we did not know that Bridget had Ds until she was born. She was 6 weeks early and had surgery right away to correct a small omphalocele. Bridget was interested in trying to nurse when she had recovered from her surgery and was allowed to try, but she tired very easily and we discovered that she was aspirating slightly. We had to thicken her milk, so I pumped and bottle fed her for 5 months (until she could safely breastfeed). During that 5 months, I let her try to nurse every so often after pumping, to see if she was still willing to breastfeed (she was). I ended up nursing her exclusively for over a year. I wrote about our experience here: http://bridgets-light.blogspot.com/2009/10/look-back-learning-to-eat_16.html

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  16. My daughter, Emma Sage, latched on right after her birth [she was actually born unexpectedly at home] and nursed till we got to the hospital. She struggled latching on for the next 18 hours, so I pumped and syringe fed her. Once she latched on after her initial 'deep sleep' she nursed like a champion and was exlusively breastfeed until 8 months or so and continued to nurse and eat table food until 3 years 10 months old [when she weaned herself].

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  17. The plan was to BF exclusively, but things did not go as planned. Milo was born at 37 weeks and was taken away immediately to have surgery on a small omphalocele and to be "evaluated" for suspicions of Ds. After surgery Milo had a OG tube and was feed by IV exclusively for the first six days of his NICU stay. I started pumping immediately but was having a really hard time getting my milk to let down; most likely due to stress. I pumped, made sure Milo got the colostrum by taking q-tips and swabbing his mouth, and continued to pump for the anticipated removal of the OG tube and opportunity to BF. During those first six days I was surrounded by mixed messages. Although I was encouraged and met with lactation specialists,I was overwhelmed with phrases like, ability to thrive, inability to nurse, must finish mls in less than 30 minutes... Once the OG tube was out, we tried again and again with him having very little interest and then he would get tired and have the remaining amount of mandatory mls feed thru his NG tube. I ended up pumping and bottle feeding because I became overwhelmed with knowing how much he was getting and him getting it by mouth. I wanted to take my baby home. I was a first time mama, and had no experience. Once home after a 15 day stay in the NICU, I tried to BF but he only wanted to bottle feed - again, I think experience would have made a difference. I had to go to BM and formula due my milk production becoming less and less. I am sad to say that Milo ended up on formula exclusively by three months. Not being able to BF was very hard for me, but Milo man is now 14 months and is healthy.

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    1. The concept of "must finish ___ml in ___ min"--which is so often said in the hospital--is so frustrating and stressful! It is done so that babies don't expend more energy eating than the calories they take in with a feeding, but it can be really deflating. So many first time moms have a hard time with not being able to measure the amount of milk their baby is taking with each feeding....that is a common issue...as is the concern that the baby is going to starve. But the opposite is often true, even if the baby is not nursing for long periods of time because breastmilk is so nutritionally complete. But it is stressful. Most moms (of babies in general, not just those with Ds) will say that :). But Milo is beautiful and healthy...and you did the very best for him by believing that he was important enough to fight for...and in being concerned about what he was eating (and how he was getting his food). New moms are bombarded with ideas on what is best for their babies. The most important thing is to do what you can and to pay attention to what your little one will tolerate best. As with any baby, breastmilk is the perfect starting food whenever possible. We all do the very best we can!

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    2. Thanks, Lisa. The mandatory feeding amounts and times were really stressful, and every time any milk was given thru the NG tube, it added another day to his NICU stay.I thought, if I can only get him home we'll get the hang of this.It just didn't happen that way. Thank you for your words of support.

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  18. We really struggled to BF with two major heart defects, poor latch, very sleepy, weak, two major surgeries and the cardiologist wanting to pump her full of calories. But we did it.
    It took a month of really hard work and her nursing almost continuously during the day, sleeping in between and no 3am feeding. ( She slept right through.) But once her mouth was strong and she 'got it' she took off and never looked back. I think it was one of the most important things I did for her health and as soon as I weaned at 3 years old, I wished I had NOT!! Course this meant if she was in the hospital, so was I. I also ate a high fat diet and not sure if helped or not, but she gained weight very nicely on BM alone! It also helps to start them on the breast you stopped on to get that hit of fatty hind milk first.

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  19. I had planned to excusively breastfeed like I had my two babies before; when Ben was born we did not know he had DS; but I experienced some very real struggles with breastfeeding him. From the start, Ben could not keep up with how fast my milk dropped and he would throw back his head and unlatch his mouth. I spoke with a lactation specialist in the hospital and again two weeks later when I brought Ben into the ER for dehydration-- both times, the big question they had for me was was I sure that I had milk? You've got to be kidding! I was drenched and stinking in breast milk! After the dehydration scare, I chose to go with bottle-feeding so that we knew had much he was consuming -- we still didn't know at this time that Ben had DS; I might have pushed to pump more if I had realized that the problem was low muscle tone.

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  20. My daughter, Faith, was born 5 weeks early and stayed in the NICU 5 weeks. I tried nursing her often, but since she wasn't at home and had bottles, it was difficult. She also was born with a PDA and a VSD so the docs didn't want her exhausted trying to nurse. I pumped and she did have just breast milk for 2 months.
    All the best to you with your efforts!
    Paulette

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  21. I count leaving the NICU with an exclusively breastfed baby with Down Syndrome as one of my greatest achievements. Isaac was diagnosed at birth and not breastfeeding was not an option I could handle, feeding him healed the hurt of that confusing time, he is still feeding at 17 months and no signs of wanting to stop, he has never had formula (not for want of trying when he was six months and I had to have a hip relacement) he is developing well and still nurses a couple of times a day and more than I would like at night (yawn!!) but after all the struggle to leave the hospital nursing I wouldn't dream of complaining about the night feeds (oh well, maybe a little !) !)

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  22. My daughter was born with the AV-canal heart defect so her heart was in a constant state of exercise which in turn caused her to be weak. They told me she would probably be too weak to nurse, but I tried anyway. She had some issues at first with having jaundice on top of her heart defect and was very sick and too weak to breastfeed. So I pumped and we fed her my milk thru a ng tube for about a month or so. I usually let her nurse once a day on the breast to remind her how to do it. One day we were changing her ng tube and she was able to nurse really well with it out. I asked the doctor if I could try to nurse her for a few days and see what happened. He agreed and we never looked back. They wanted her to gain weight to 12 lbs. so they could repair her heart, but she refused all bottles. We got her up to 8 lbs. 5 ozs before they fixed her heart at 4 1/2 months. After the surgery, she became a pro nurser. I breastfed her until she was 3 (partly because she was so stubborn about taking liquid from a cup). Once she learned how to do a straw, I transitioned her to cups with straws.

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  23. I pumped exclusively for 2 months and then one weekend she started nursing and refused all bottles. She's now one and Im weaning her only because I have to leave for six days soon or we would continue.

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  24. I found b/f a little bit slow to start. Felix was a little bit tired, so I would attempt to b/f then he was tube fed (with expressed milk first, then formula) until he was 3 days old then exclusively b/f. They wanted to use a bottle instead of the tube, but I asked them not to as I didn't want him getting used to the bottle. The only 'problem' I have found is he tends to 'chew' a bit as he sucks. It can be a little bit uncomfortable. He is now 17 months old, and still feeds twice a day. I will be weaning him over the next couple of months as he's started to bite... Ouch!

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  25. My little Miriam nursed exclusively from the beginning. It was a little harder for her to latch on than my boys, but once she got the hang of it, she was a pro. We nursed until she was almost 2-1/2.

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  26. Hope I didn't throw off the poll... we adopted so I answered "wasn't an option", but his birthmother did breastfeed him while he was in the hospital at birth for 10 days...

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  27. I could not get the voting polls to work for me so, here is my story. Annie had heart issues and was too weak to nurse effectively. We started Debra Beckman oral motor exercises shortly after her heart repair and were able to get her back to the breast at 7 months old. The pumping was excruciating for all of those months (every 2 to 4 hours, day and night) but so worth it when she finally latched on. We breastfed for three years after that. :) Without an incredible lactation consultant I never would have endured to see that happy day when Annie finally figured it out!

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  28. I had always planned on exclusively BF. We strongly suspected Ds (confirmed heart defect), but that wasn't for sure until Claire was born. She spent 12 days in the NICU (temp issues, jaundice, PDA repair). I tried to nurse her, but just didn't get a lot of help. She was my first and I just didn't know what I was doing, and wasn't sure how to help her latch better, stay awake, etc. She was a sleepy baby, but always had a great suck, and I think she would have nursed wonderfully. The drs always talked about all the weight she needed to gain before her OHS and that honestly freaked me out. With the bottle I knew what she was eating, I knew she was gaining weight. I ended up pumping for her for over a year. She was exclusively on BM for 18 months. I'm proud I was able to provide that for her, but I still wish I would have tried harder with the nursing.

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  29. I just found this post and I'm really glad that I did. I've been looking for BF support for babies with DS. Harrison was diagnosed at birth and we spent 12 days in the NICU while he learned breathe-suck-swallow at the bottle. We tried to BF but he would just scream and flail and, like others, he had his MLs to get and time frames. When we got home, between the shock of his diagnosis and mastitis, I just couldn't handle him screaming at my breast. We have used a Lactation Consultant. And those devices (nipple shields, SNS), but my take on those is that they only work if you have 4 extra hands and a baby who stays still and doesn't have grabby little hands.

    Harrison is nearly 4 months, I've been pumping the whole time, and I have a ton of milk (I have had to cut back on pumping b/c I was freezing 25oz/day more than he ate). He has been doing better and better with it and I'm trying to transition to full breastfeeds with no bottles before or after (hard b/c he has meds he has to get). I think I need to see the LC again to help with the transition. I rented a scale for pre/post feeding weights. And then we got derailed again by a 4 night hospital visit for bronchiolitis. And I go back to work next week.

    I'm trying to stay the course and I'm not ready to give up yet. Some of these posts are truly inspiring... I'm just not sure if I can do it. From reading everyone's comments it seems like the more experienced moms do better (Harrison is my first).

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  30. Mschneid, I applaud you for giving it your all. Did you read the follow-up post here - Part I of the breastfeeding series? That's my story. Part II, which will be posted in the next few days is going to include tips and advice that I found helpful when Finn and I were struggling to establish breastfeeding. I would love to support you. Please feel free to email me at luckyme3n3ATgmailDOTcom.

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  31. Hi Lisa,
    I have my phd so i'm used to working hard at something that may/may not pan out :) It's amazing how sheer stubbornness can be a driver. Although the luck of good milk supply has also helped. Yes, I read your post. I will email you. Thx. -Monica

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  32. I knew my baby had heart defects and down syndrome before she was born. I breastfed my 2 year old throughout this pregnancy purposely to keep up my milk supply for when the baby was born as i knew the possibility of major difficulty. It was a struggle to latch and she seemed to not be able to handle flow without coughing and choking. We worked on this for weeks but eventually we got the hang of it. She breast fed for 2 1/2 years! Came in soo handy to breastfeed and hold her 24 hours after major heart surgery... tubes and all!

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Please share your experience and opinions, or ask a question. I won't even mind if you correct me on something.

ds.mama will delete any comments that are simply product advertising.