Q: What’s The Best Bottle For a Baby With Down Syndrome?
A: The one that works!
(read on)
Since Noah was born I have become quite the expert on baby bottles. In fact, I have no shame in admitting that I know way more than a man should know bottles. 🙂
Lost in a sea of baby bottles….
I know the difference between slow-flow and fast flow; I know that some bottles have BPA in them (although I’m not really sure what BPA is, other than that it’s bad for you!) I know that some baby bottle nipples are naturally shaped (meaning they are shaped like a woman’s breast) so that a baby can latch on to them more easily. U know there are traditional shaped nipples, vented shaped nipples, multi flow nipples, slotted multi flow nipples, and even adjustable nipples! There are orthodontic nipples, elongated nipples, bell shaped nipples, latex nipples, and silicone nipples (Wow, that’s a lot of nipples!)
Sure, I may know way more than any man should know about baby bottles, but it’s all good. There’s no shame in my baby bottle game. But you’re probably wondering why (or how) I’ve become such an expert on baby bottles. Let me explain.
Finding the right bottle for our a baby with Down syndrome
Looking at him, holding his own bottle!
Although some children born with Down syndrome aren’t able to breast feed, we were fortunate in that Noah could. However, when it was time for him to start using a bottle we had a hard time finding one that worked well for him. One of the characteristics of Down syndrome is hypotonia (low muscle tone) which can make it hard for children with Down syndrome to use a bottle (and breast feed.)
In addition to his low muscle tone, we also had some fear that he has aspirating while drinking from his bottle and had to have a barium swallow study preformed on him to rule it out (if you’ve never seen a swallow study before, you can watch a short video of Noah’s here.) It turns out he wasn’t aspirating at all, rather he was just drinking way to fast. In other words, we needed to slow this cowboy down!
So here we were on a mission to find the best bottle for our son with Down syndrome. I almost wore my fingers out searching google for the best bottles for children with Down syndrome. Then I thought we were going to have to take out a second mortgage on our new house just so we could buy (and try out) all of these different baby bottles.
Seriously, if you came over to our house you’d think we were baby bottle testers considering how many different bottles we have stocked piled in our cabinet. To be honest it was sort of frustrating trying to find a bottle that worked well with our son.
We would buy one and milk would spill all over him (and us) when he drank from it. We’d buy another and he’d almost pass out trying to drink from of it due to how hard he had to suck to get anything out of it. We’d get another and he’d made all sorts of scary gasping / choking sounds (hence the reason we did the sallow study.) All I wanted to do was find a bottle that worked well for my son, and allowed him to eat comfortably, but it seemed like such a challenge. I wondered if other parents had such a hard time finding a bottle that worked well.
After much trail and error we finally found a few great bottles that seemed to really due to the trick.
So which bottle worked best?
A full baby is a happy baby!
I personally think all the bottle reviews you’ll find out there are irrelevant. Every baby is unique and has different feeding needs. We were using using a speech / feeding therapist with Noah and would bring Noah’s bottle in with us to his speech therapy appointments so she could watch him drink from it and give us feedback on how that particular bottle was working for him.
If it wasn’t working out, we would try a different one the next time. We repeated this process until we found one that worked best. In addition, Noah’s speech therapist had us use a Z-Vibe to perform the Beckman Oral Motor exercises on him, which helped him to gain additional muscle tone in his mouth, therefore helping him drink from his bottle (and breastfeed) better.
I’ll mention the three bottles that worked best for our son (and a bonus 4th bottle), but treat this list (and all the bottle reviews online) with a grain of salt. They provide a good starting point, but you’ll want to work with your child’s speech therapist and/or pediatrician in order to find the best bottle for your child.
I’ve learned that bottles are pretty much like everything else, what works well for one child may not (and probably won’t) necessarily work well with your child. I think choosing the best bottle for a child with Down syndrome (or any child) boils down to trail and error. Yes, it will be costly. Yes, you may get frustrated when you spend money on a bottle only to have to shelf it because it didn’t work well with your child (even though the online reviews said it was “the best.”) Yes, you’ll go through a lot of bibs as milk spills all over the place. But in the end, it’s all worth it.
As you can see in today’s video, Noah really enjoys drinking from his bottle, and feeding time has become a much more positive time for us.
He's all filled up, and ready for bed.
With that being said, if you are looking for a good bottle for your son or daughter with Down syndrome, here are a few that we had successes with during our bottle hunt. Feel free try one (or none) of them out. Like I said, these are just what worked for us, and may / may not work well for your child.
1. Philips AVENT BPA Free Classic Polypropylene Bottles
The Philips AVENT BPA Free Classic Bottle
is the one Noah’s using in today’s video (and the one we have stuck with.) It’s a great bottle, and the only thing I don’t like about the AVENT bottle is that it’s short and fat (instead of tall and skinny like most other bottles) which makes it hard for him to hold by himself. However, you’ll notice in today’s video that he’s actually holding the bottle by himself for the first time! I’m so proud of this little boy. This is our go to bottle for Noah, and a winner for us (and him!) 🙂
2. Playtex Drop-ins Nurser Bottles
The Playtex Drop Ins Nurser Bottle
uses little “drop in” bottle liners that are supposed to help keep the air out of the bottle while your baby is drinking from them. My wife really liked them, but I personally didn’t. The bottles are fine, I’m just not a fan of the liners. I think they’re messy, and I found it sort of hard to push the liner up into the bottle as he was drinking. My hand was to big to fit inside the bottom of the bottle to push the liner up so I had to use a wooden spoon. To much work if you ask me. (Like I mentioned above, this is just my personal opinion. They are great bottles, I just didn’t like the liners.)
3. The First Years Breastflow Bottle
The First Years Breastflow Bottle
is another great bottle. They are designed to mimic a mothers breast, which they claim allows for the breast milk or formula to flow naturally like their mothers breast. Noah did really well with this bottle, although not quite as well as he did with the AVENT bottle I mentioned above.
Bouns Bottle: Medela Storage Bottles
I wanted to mention these Medela Storage Bottles
briefly. Although they are meant to store breast milk from the Medela Breast pump system, we found they worked really well for Noah once he was a little older (10-12 months) since he wasn’t really having a problem drinking from a bottle at that point and we weren’t as concerned with flow as we were when he was younger.
I liked these bottles because they are so small which enabled Noah (and his small hands) to hold on to them by himself. (The other bottles I mentioned are much bigger, and he had a hold time wrapping his small hand around them, and holding them by himself when they were full of liquid due to how heavy they became.) The only drawback is these bottles only hold 2 ounces so if you are doing a typical 8 ounce feeding you have to fill them up four times.
This is ok with me since Noah had such a great since of accomplishment holding and drinking from his bottle with no help from mom or dad.
How about you?
What bottles have you tried and liked (or disliked?) Did you have a hard time finding your child a bottle that worked well for them? Take a second to leave a comment and tell us about your baby bottle experience.
About Rick Smith
Great information. We have always used Dr.Brown’s bottles & she did ok with them since theres different nipple sizes but washing them is a pain. BTW when did Noah start holding his bottle? I’m having trouble with my baby girl. She’s 14 mos. & just doesn’t yet.
Noah is 11months here holding the bottle. The key for us was using a smaller bottle that Noah could actually get his hands around which were those storage bottles.
Merlin,
Like my wife said, the smaller bottles that I mentioned as a “bouns” bottle worked great for Noah. They are pretty much the “cheapy” bottles they give you at the hospital. They worked great for Noah since he was able to wrap his hand around it (they are much smaller.) Plus since it only holds 2 ounces of liquid it wasn’t as heavy as the other bottles; which also made it much easier for him to hold.
I agree with you on those Dr. Brown’s bottles; washing them was a pain!
Where are you guys from by the way?
That was a great post and how true. With our 2 year old daughter, who doesn’t have Down syndrome we used the Dr. Brown bottles, which we loved. We tried the Avent bottles with her, but had a problem with them leaking. However with our son who is now 9 months old and has Down syndrome we started with the Dr. Brown bottles. We now use Playtex Ventaire, which we have had great success with. The only reason for the change was that Jacob has heart surgery at 4months and afterwards when they went to reintroduce the bottle, they found indicators of aspiration and after a swallow study confirmed it, we have to add 3/4 teaspoon of cereal per ounce of formula. Jacob’s Speech Therapist in the hospital said this amount of thickener will clog the vent on the Dr. Brown bottles, so she recommended the Playtex Ventaire bottles which vent out the bottom. We have been using these bottles since the surgery and he has been doing great and is now starting to attempt holding on his own. We are so proud of our little man and the fighter that he is.
Thanks for sharing, I’m proud of your little man also! How did the heart surgery go, and how is he doing now?
Also I believe we tried the Playtex Ventaire bottles as well, and if I remember correctly they actually were pretty good. Like I mentioned every child has unique needs, and why there will never be a “one size fits all” bottle. 🙂
Are you on our facebook page? Feel free to post a picture of your little guy if you’d like. Everyone there enjoys seeing pictures.
I think you blog is awesome and has a lot of great information. I found your blog when I was about 13 weeks pregnant with Jacob and we got our genetic screening results showing a 1:7 chance of DS. Between these results and the results of the amnio at 17 weeks, I spent many hours online looking up all the medical information I could get my hands on about DS. What I found with the medical information is just that, medical information. The long list of medical condistion that a child with DS could have and all the statistics of a child with DS having each, so I soon turned my research to blogs of parents with children with DS. Then after our Level II ultrasound at 20 weeks, followed by the Fetal Echo confirming that Jacob had a complete AV Canal defect that would require Open Heart surgery, most likely within the first 6 months after he was born, I began researching the medical information and blogs of parents with children with DS and heart defects. I am the type of person that handles things by finding out all I can and it was never a question of whether we would have Jacob or not. I think I was lucky to know ahead of time because by the time we went to the hospital for Jacob’s arrival September 22nd, I was ready to be there just for him.
Jacob spent 10 days in the NICU coming home on Oct 3rd. On November 17th, we took our little man to the hospital where his heart surgery would be, as he was in respiratory distress and it was unknown if it was due to his heart or something else. We found out that although he has already received 2 months of the RSV shots, that our poor little man had RSV. He spent 11 weeks in the hospital between the RSV and his heart surgery, which was January 16th. On Feb 3rd, we got to leave the hospital and Jacob has been doing great. Jacob has recovered from the surgery so well, that there are days that I wonder if we really went through all that and the only confirmation is seen when I raise his shirt to see his battle wound. He has been back to the Cardiologist twice and he says that the repair looks great and there is no signs of any leaking. The only heart med he is still on is one dose of Lasix each day, which he will hopefully come off of by his next appointment. Jacob has already taught me two things, one is that he is stronger than I am and two that he is the hardest worker I know.
I am sorry that this is probably more than you were looking for in your questions, but it is blogs like yours that have given me the best information. I am on your Facebook page and will definitely share pictures as I too, love to see all the beautiful pictures shared there. You were correct in your original post every child is different and not just in the bottle that works best for them :).
What is your Facebook page name?
https://www.facebook.com/NoahsDadcom
Thank goodness I’m not the only parent with a cupboard full(and a bank account diminishing) of tried and tested bottles! My little man Mason, now 4 months, spent 8 weeks in the Neonatal unit and got so used to the slim neck teats that they supplied that I struggled to find one similar when I finally brought him home. I eventually found that the Pidgeon BPA free slow flow bottle was the perfect one for my boy as the nipple is a long slim one that allows him to suck it right back into the soft pallet. I think that because he was born prem and his mouth was so tiny these types of narrow teats worked best for him then and that’s what I’ve stuck with. The thing I have found hardest so far is changing the flow of the nipple. He was so used to having a slow flowing teat that when I gradually changed him to a medium flow he coughed and spluttered quite a bit. Masons speech therapist showed me ways of holding his cheeks together and his chin up to help build strength in his muscles and he’s now taking his bottles like a pro!
I’m not sure whether these bottles are available in US, I’m from Australia and I’m hoping they stay here until mason stops bottle feeding otherwise I’ll be doomed! 🙂
I have lended out our bottles so that others don’t have to buy all of the different types to try 🙂 Glad your man found his match and is doing so well 🙂
@Penny,
Thanks for your comment. We have met so many friends through our site and Facebook page from Australia. It’s been fun! What part of Australia are you from? Also are you on our Facebook page? If so have you noticed how many Aussie friends are on there. 🙂
I feel the same way. I thought I was alone in this.lol My son is 5 months and has larygomalacia and we have had a hard time finding one he doesnt get choked with. Plus he is very tounge tied so some bottles he cant get a suction on. We are going to the ENT next week to look into getting his tounge clipped. Now we finally found one and yesterday we started putting cereal in his milk and he cant suck it through the hole.lol
Our son Paul had trouble with his suck reflex right from the get-go which was very frustrating and scary! to us. Heck, everything was scary to us – first-time parents, twins, an unexpected diagnosis for one baby… We had tremendous luck with a Haberman nipple. It took some doing to track one down, but Paul had no trouble sucking from it and within 4-5 months he was using a regular bottle with regular nipples. Haberman nipples are long and slender and have to be “pumped” full of milk/formula first before the baby can start feeding. I believe they were originally developed for babies with cleft lips/palates. Essentially the nipple lies on the back of the tongue and it takes very little movement of the tongue to release the milk. (We used it with the Medela storage bottles at first). If your hospital has a feeding clinic they can help you locate one or talk to a good lactation consultant. Once we moved to regular bottles, we had good luck with the Platex Ventaire.
Thanks for your comment. We too were first time parents (but not with twins! You deserve an award!) 🙂
And I agree, the feeding clinics are soooo helpful, and really helped put our mind at ease when we were dealing with all the “surprises” with Noah. I’m so glad things are going well for you guys.
Where are you guys from?
Rick,
We are doing some bottle testing right now with House. He spits up everywhere and has since birth. I have lots of these bottles from the first go round with our typically-developing son. Trust me, this is not an issue just for children with Down Syndrome. Would love to get some ideas on when speech/feeding therapy should start. Trying to get a jump of things!! Sweet Noah is just the most precious. I couldn’t be more proud of you with your new degree in hand. Good luck and looking forward to more posts.
Feeding therapy can start ASAP, speech for language development depends on the requirements of the ST the one we plan on using wants Noah to start mimicking as well as other things before starting. It is never too soon to be assessed though 🙂
@Honey,
Thanks so much for your kind words, I really appreciate the encouragement.
By the way I checked out your blog, I think it’s super cool, and very transparent of you to keep a running blog like that. My wife is in to running, maybe you two could buddy up some time!
I look forward to following along with you on your running journey.
We used the breastflow and also MAM bottles for our lil guy in addition to nursing. Great info!
Thanks so much! How old is your little one now?
Hello from England! My daughter Cicely is now nearly 10 months old so we are thankfully through the stressful bottle choosing stage but I remember clearly those early months and endless trials! We tried Nuk – no good for Cicely – in the UK you can’t get slow flow Nuk teats for some reason. Then we tried Tommy Tippee which were just too big for Cissy’s tiny mouth and would make her almost choke. And then we started with Avent which I had avoided thinking something more specific with special shaped teats would be better for Cissy – however Avent was the winner by a long way and Cicely is very nearly able to hold her bottle too! Only the little stumpy bottles, but even so – she’s loving the (almost) independence!!! Good luck all mums and dads out there with bottle choosing! It’s a minefield!
Thanks for your comment Becky, and so cool your are from England! Maybe we can bring Noah (and his parents) for a visit to see you guys sometime! I’d really like to see England. 🙂
By the way, I’m glad you found a bottle that worked well for your daughter.
Lily-Jane is 11 months and uses Dr Brown bottles with one scoop of thickener.We used Avent bottles and for us they really were a waste of time .We had a very hungry girl, who then became a very sick girl ,with meningitis. The GP didn’t pick it up which is scary and put it down to the fact that she had a chest infection and in her own words” these “children are always sick and don’t drink properly and not to worry. Well we did worry and didn’t leave it there we took her to the ER. Thank God ,that the Doctor on call saw that all was not well. She spent 2 weeks in intensive care lost 8 of her fingertips and brain damage to the left side of her brain .And Praise God she made it and will be 1 year in June and is the most delightful child. Such a Gentle little girl. Love her so much. Finding the right bottle is very important,but finding the right GP is also important!!!!!!!!!!!!!!!!!!!!!!!!!!!
Liz, I am so sorry you and your family had to go through all of that. I’m thankful that you didn’t just take your GP answer at face value. Like you said, finding a good pediatrician is very important. My wife (who is a pediatrician) actually posted a great write up on this very topic recently. For anyone looking for a pediatrician, I suggest checking it out. (And please leave any that we may have missed in the comments —> http://noahsdad.com/qualities-pediatrician-child-down-syndrome/)
For Ryan it was not about the bottle, it was all about the nipple! After many many many experiments, we ended up using the nuk nipple… its a little flat in the middle, worked perfectly! But it was a process, Bc no 2 kids are going to have the same needs. Good luck all!
Bethany, so true. Each child is unique.
So glad you found a bottle / nipple that worked well.
We use the haberman bottle by Medela. Great bottle with adjustable flow. She wouldn’t have been able to come home from the hospital so soon without it!
Awesome, thanks for sharing! How old is your daughter now?
I used Avent Bottles for our daughter Nia because she would not latch on. Noah is sooooo handsome, how ls he?Nia is 29 months
Thanks for your comment, I’m glad you found a bottle that worked well. In this video Noah was 11 months old (But he is 17 months “in real life”) If you are on our Facebook page you’ll notice the pictures we post there are more current. We’re in the process of trying to catch up on our one minute videos. 🙂
Feel free to post a picture of Nia on our Facebook page, everyone there enjoys seeing photos! 🙂
I have a 14 month old with mosaic DS and we tried several bottles too. He was a wonderful nurser but he didn’t do well with a bottle . He didn’t have that suck swallow breath pattern. He wold just gulp , gulp ,gulp swallow then breath. His face would get all splotchy and his eyes would water. So we went to the Dr. Brown bottles per speech recommendation and the are awesome!
Glad that you found a bottle that works well!
Where are you guys from?
We started with the Medela storage bottles when James was tiny, because he ate so little. A friend brought us nipples from the hospital–some preemie ones that were red, I believe? and regular latex ones. We tried both. He never ate very well, and it was only when a nurse fed him after surgery (3.5 months) that she suspected aspiration. Off to the swallow study we went, and came home with goopy stuff that pretended to be milk! (stiff honey…yuck! but he likes it, because it helps him drink!) All during the hospital stay, he used the hospital nipples with a Y-cut in them (Gerber latex). I came home and cut up our fancy-schmancy Playtex VentAire nipples, but the mixing and measuring was difficult in the large bottles I had, so I eventually grabbed the plain-jane run-o-the-mill Gerber bottles with latex nipples (silicon were too flimsy), and that’s what we used ever since.
Now we’re onto straw cups, and the search continues! Finally found one–Playtex with trucks on it…don’t see any other identifier–that has a straw with a small diameter, so milk doesn’t come out everywhere.
Abbie, I like your idea of lending out/borrowing to save some money along the way! And cupboard space!
Man, oh man, I don’t want to go back to the “thicker” days. Don’t even get me started on what life was like the first few months trying to get Noah to eat. Ugggg… 🙂
Noah’s using the straw cups now also and we’ve been using the cheapy plastic straw cups with a lid from Target. They work well (except Noah sometimes spills the liquid when he is sucking on the straw…)
Sounds like y’all use the cups that Caleb (3 yrs) uses. I tried that with James, and he chewed the straw up, but he still got milk out of it, so it’s good to know we have it in a pinch. Caleb didn’t appreciate him messing up his straw. 🙂 *Sheesh…little brothers always messing with everything!* 🙂
My little boy is 10 months and we used the medela bottles at the start as he had tongue tie but since he had that snipped at 2 weeks he has breastfed all the way with no problems. His initial problems with breastfeeding were down to the tongue-tie and not the DS!
Glad things are going well. Noah breast fed well also, but at the problem is there wasn’t always a breast available for him, plus he needed to have some extra calories so we supplemented his breast feeding with formula.
Where are you guys from?
Hi, from we’re London. I’ve been following your blog as it has loads of interesting information although not all of it is relevant over here. What I was really trying to say was that when my son was born I thought the DS was stopping him from breastfeeding but actually it was the tongue-tie and as you say plenty of babies with DS breastfeed well. However, I know as parents we always make the best decisions for our babies and whether you breast or formula feed, that is the right choice for your baby.
We use the parents choice nurser bottles. They are basically the Walmart brand of playtex but with firmer nipples which makes latching on easier for my 5 month old Lila. We use the talk tools method of feeding her upright and from a downwards position with the bottle. That’s supposed to strengthen her jaw and reduce te amount of fluid that can get in her inner ear 🙂
@Latricia,
Thanks for your comment. I don’t think I’ve heard about the talk tools method of feeding. I know about their “tools,” but not their feeding methods. It sounds interesting. Are you guys working with a speech / feeding therapist? Do you find that their method of feeding is helpful?
Lila has done great with that method of feeding! Here’s a link to the article that explains it http://www.talktools.com/content/The+Oral-Motor+Myths+of+Down+syndrome.pdf
This is a perfect post for any parent who has a child with low oral tone! My son went through around 10 bottles before we bought Avents to try with him. Chris has a 16p11.2 duplication but we weren’t aware of it until he was around 2.5. Our pediatrician finally gave in to our request to see a specialist around 18 months but the insurance didn’t approve of the genetic testing until he was a bit over 2.
Thanks for the kind words abou the post. 🙂
I’m sorry you have had a hard time with your doctors. How are things going with your son now?
After my son had RSV when he was 8 weeks old. The hospital brought in an OT because he was still not drinking well from the bottle. The last requirement before releasing him. They considered sending him home and doing the NG feedings. The nipples they had at the hospital, even the preemie ones were not to his liking. So off to the local toys R us, where I purchased one of EVERY single nipple they had.
After trials of all of them, it ended up being the gerber slow flow nipples that worked. Rory was able to eat enough at one feeding, they allowed him release the next day. That was over 10 years ago. Now it’s all strawed cups here !!
Thanks for the good article. Will pass it along to some new moms.
Thanks for sharing Lisa! That’s “funny” that you purchased one of each….you sound like me! 🙂
What’s Rory up to these days? Do you guys have any other children?
So funny! My baby was in NICU for a week and did really well with the nipples they had there. When we brought her home, we couldn’t find anything that worked well. We had a nasty choking incident which freaked us out and were terrified to even feed her for weeks. We called the NICU and they gave us a pile of the nipples they used but since they are meant to be disposable they would wear out over time. It seemed like finding the perfect bottle was a huge worry for us for a long time. We eventually used and continue to use Medela nipples but it really was a lot of trial and error. For some reason sometimes they tend to be drippy and I swear I’d never use another until the next feeding and it would work fine. Our daughter is 14 months and has Down Syndrome. Our biggest bottle worry now is when to eleminate it. My friend who watches her on the days I work says all babies should be off bottles by 12 months but I just don’t think Abby has been ready. She only gets 2-3 bottles a day now. Poor thing doesn’t even have teeth yet. LOL. Anyway, so glad I wasn’t the only one in the universe with bottle quandries.
BTW we live in Oregon and Abby never breast fed well. It almost seemed like she was so famished she’d get frustrated and not be patient enough to grasp and suck. I tried for months… I was always of the mindset that no child of mine would get formula but oh was I wrong. Oh well, I guess there are plenty of intelligent people raised on formula.
Teresa, I was the same way! No way was a child of mine going to be formula-fed or get store-bought baby food! James changed my mind on both counts! Like you, I tried for months with all kinds of contraptions, to get James to nurse and get enough calories, but it just wasn’t going to happen. And baby food: I just couldn’t get it smooth enough for him in the beginning!
We used those same disposable NICU nipples before moving to the Gerber latex ones. As for transitioning, it took us a long time, too! It just didn’t seem like James was ready at 12 months. Our speech therapist (which we started therapy with at 12 months) really encouraged us to go to a straw cup, and we started with the honey bear. It was still several months before James could drink enough out of it to transition him to a straw to replace his bottles. Good luck!
Teresa,
Thanks for your comment, and I think all the comments show you aren’t alone in your quest to find the best bottle for your little one. 🙂
And..there are a million things you can read online about bottle feeding vs breast feeding, how long, etc, etc…Noah breast fed until around 6 months and than we did the formula, and I think he is turning out ok. 🙂 Oh, and my wife bottle fed, and she was the valedictorian of her high school, and is a doctor now…so I think he’ll be just fine. 😉
I could go on forever talking about all of our feeding issues with Noah. Maybe one day when we get caught up on our blog we’ll go back and blog from Noah’s birth – until we started this blog…there’s about a 4-5 month gap I think. By the time we started the blog we had pretty much gotten a handle on all of his feeding issues (for now at least)…but boy…those first few months were rough. 🙂 It gets better…trust me. 🙂
I’ve been following your blog since we found out our son has DS. He was 10 old by the time we got the diagnosis and have been through a string of appointments already. Thankfully no heart issues, but he is aspirating badly. I was a little heartbroken to no longer nurse him (it was my ‘legit’ cuddle time with him where the 2 other kiddos gave me space) We were using the Dr Brown (costs an arm and a leg!) but the honey thickener was too much and the poor boy was turning red trying to suck it out! We’re using Playtex Vent Aire now with a level 3 nipple so he doesn’t have to work so hard at sucking it out.
I have to mention how grateful I am for your blog. I wished I knew about it earlier when we were going through all the blood test and I was too sleep deprived to fully understand what was going on. It’s been nice to know there’s plenty of people out there that understand and have walked this path before. Thank you for sharing!
Sorry, still sleep deprived! He ws 10 DAYS old when we got the diagnosis!
Thank you very much for the kind words, it’s so cool to connect with you and learn about your family. How old is your son now? Where are you guys from?
We live in Phoenix AZ.. Elias is now 6 weeks old. It’s crazy how much we’ve learned in those 6 weeks though. Thankfully there is another gal in our congregation who has a 17 month old boy with DS. She’s been a life saver in ways she’ll never fully know.
Feeding was definitely our biggest issue due to Jake’s hypothyroidism. They didn’t discover the condition until 6 weeks after his birth so we spent many, many hours trying to keep him awake so that we could force him to eat. Once he started the thyroid medication and started waking up we were able to start testing bottles. We ended up using Dr. Brown nipples and bought a pack of cheap bottles that fit the nipples. I haven’t even thought about whether or not we need to match the nipples to the brand of bottles. Is it ok to mix and match?
I wanted to wish “Honey” luck on the half marathon. I will be in the same half marathon this December running with my 15 year old daughter. It will be her first half marathon. I ran the full in 2008 and 2010 at the White Rock Marathon for the Leukemia and Lymphoma Society. This year will just be mother/daughter time. If anyone is interested in forming a group to do the long runs on Saturdays……I’m in!
Very cool! We actually used to live on White Rock Lake. 🙂 Keep us posted on how things go.
Oh, and we know all to well what it’s like trying to feed a baby who doesn’t want to wake up in the middle of the night. You should have seen us the first month or so. It was like we were training a boxer. I’d be putting cold rags on Noah trying to wake him up, tickle his feet, etc….he really NEEDED to eat, but he didn’t want to wake. Oh man, I’m so glad those days are over. 🙂
Where are you guys from? Does Jake have Down syndrome? If so, are you guys a part of the Down Syndrome guild here in Dallas?
We also started with the Medela breast milk storage as bottles. Mostly because I pumped for 6 wks, but also because Leo’s eating amount took a while to increase. He had a swallow study at 4 wks and has a slow swallow + leaking into his sinus passages + aspirating, thanks to hypotonia from DS. We had a big challenge finding the right bottle for his feeding issues (esp with thickening!) but finally got the Dr Browns with level 2 nipple to work. But i still have to mix all thickened formula ahead of time in a blender. Washing them is such a pain, but the other bottles were taking him over an hour to eat 2 oz. so it’s worth it! He’s 3 months now, and the feeding seems to finally be smoother!
So glad you guys found a bottle that works well. I know all about those one hour feeding sessions, trust me. I believe at some point our pediatrician had us cap Noah off at 30 minutes since he was burning more calories than he was consuming from trying so hard to eat. I’ll tell you what, it’s a different ball game now. You should see this kid eat! He’s like a little (and very cute) goat. 🙂
Where are you guys from by the way?
We’re on the edge of Rockwall. Just went to our first new parents meeting a few weeks ago with the DS guild, so we’re hoping to get more connected. I met Rachel and her precious Trinity, and hope to bring Leo to a play gathering soon so we can meet and connect with more families in person! I know the one hour feedings are counter-productive, but the guilty mom in me kept thinking maybe something would kick in or change. I’m soooo glad we no longer have the feeding struggle at this point. I know you can relate! Our latest battle has been getting over the hump of 18 oz daily intake, he’s been stuck there for a while. Reflux doesn’t help!
We started out with the dr. browns, but only have the 4 oz bottles. I don’t really want to get a new size and it never occurred to me that my baby would grow big enough to need more than 4 oz in his bottle! Silly mommy. I really love the VentAir. Mostly its because I’m fascinated as to how it doesn’t leak. Ahh, modern technology! Because of the indent in the bottom, Otto gets his little fingers in there and tries to hold it. He can do so for a few seconds, but not for an entire feeding. But he’s young. He’s got all the time in the world!
We found the Dr. Brown wide mouth bottles to the most beneficial for our Tessa! She aspirated horribly until they recommended her the Playtex Drop-Ins or the Dr. Brown bottles and Enfamil AR 🙂 Great post! Super beneficial!!
Thanks so much. I’m glad you guys found a bottle that worked well for your little girl! 🙂
How old is Tessa now? How’s she doing?
My son, Max, is 19 months old. He was born with a complete AV canal defect, so even though he was able to latch, breastfeeding proved to be too much of a drain on his system. He was expending more energy than he was taking in calories. We tried a few bottles, including Avent and Dr. Brown’s, but the one we liked the best is Tommee Tippee. From 4-6 weeks of age, Max alternated between the bottle and the breast, and never had any trouble. They’ve really been great.
We also had trouble with feeding and our daughter lost loads of weight after hospital. We used a Haberman feeder and can’t recommend it highly enough. You can get them from amazon these days so much easier to find
I know I’m a little late to this post, but as a speech/feeding therapist, I cannot emphasize enough how important/helpful it can be to find a therapist who is willing to walk through this process with you step by step. It sounds like you and several others on this blog were able to make your way through the bottle finding process successfully, but I’m disappointed to read that it sounds like you had very little help from your feeding therapist. Finding an appropriate bottle is something that a feeding therapist SHOULD be able to walk through with you in much less time (though some babies can be tricky and feeding needs can change quickly). I’m actually really appalled and disheartened to read all of the struggles that people are having. The standard of care is that any baby who is demonstrating difficulty feeding would be able to access a competent feeding therapist who works with you at actual feedings, in your home, day by day until you have a plan that is safe and you feel comfortable with. I just want to encourage people that if you are having difficulty feeding (breast or bottle) with your baby, there IS help out there and there are good feeding therapists who would pretty much lasso the moon to help you. Most of these comments are telltale of substandard care, which pretty much makes me want to freak out.
We’re in the UK and use Nuk bottles with latex teats. Latex seems to be a real no no here but Kian really cannot cope with the silicone ones ( I think they are too hard). Luckily my husband is a pharmacist and orders a box full of the slow flow latex teats at a time for us!
I have been reading post on your sight all evening! And it is wonderful! My baby girl was born in December and is 8months old now. I was just so excited that I was reading all this great information you have a videos etc….and feel like we are doing so well with our sweet girl. We also do occupational therapy and it helps so much to know the exercises. And we have used the same avent bottles from day one. Our baby girl started rolling at 4m 1w, and then was sitting at 7m 10days! She is doing amazing and we are now working on crawling position and bearing more weight one her legs. She however seems to be huge, haha! She has outgrown her clothes and because of her height(which is crazy) we have had to move her into 12 month clothes. She is such a miracle baby!!!
Karen
Old post but might help someone that stumbled here as I did. We started out with breast feeding gift pack nipple from similac. It was rubber and had a slow flow and I believe the thickness of the rubber helped with that slow flow. We couldn’t find the nipple anywhere for sale so we would but the ready go bottles of similac just for the nipple. (The nipple struggle is real..lol) we breastfed until we realized she was not getting the milk out very well. We got tired of the $8 per nipple so we went on our search. She liked the rubber nipple but I could never find a slow flow. So we moved to the avent smaller bottle. We liked it well but when it was time for the larger bottle we couldn’t find replacement slow flow nipples. So the search began. We ended up with the MAM take apart easy clean bc it was the only 8oz bottle we could find with a slow flow. She chokes on a higher flow and chokes sometimes as it is. I have figured out that when she does a little cough she continues sucking and it isn’t that bad. When she chokes and the bottle is taken from her it turns bad into worse and then there are heaves without oxygen and it’s scary. /: to anyone that reads this good luck on the bottle search <3
How old is Noah in this video?
What nipples did you use with the 2oz Medela bottles?