Thursday, January 1, 2009

Milk

I took Ruby to her ST this past Tuesday and the ST said she wanted me to put thickener in Ruby's milk so she can start using a regular flow nipple instead of a slow flow.I know she's just trying to do what she thinks is best for Ruby but when I got home I cried because the therapist put that disgusting looking gel in my baby's milk(the milk I work so hard to pump for her everyday).I also think I cried because I thought Ruby was doing so wonderfully , she takes 6 to 8 oz. at each feeding,putting on weight,growing longer,stronger and she can roll from her tummy to her back now! The ST also made the mistake of telling me Ruby is her first infant with Ds,that they usually come to her when they are older.The ST is also very,very young.

My husband brought me flowers when he came home that evening because he was sorry I was upset.He's a sweety!

11 comments:

SunflowerMom said...

Oh big hugs, mama! I hate to tell you not to trust the advice of your team, but this is one case where I, personally, would absolutely get a second opinion!

There is no reason to thicken her milk if she is tolerating it well! As long as she isn't aspirating it, you should give it to her the way you have been! A slow flow nipple will strengthen her oral muscles more than a regular flow one because she has to work harder to pull the milk out, just like a breastfeeding infant. She is just 5 mo old, right? I think the medium flow nipple packs say for ages 4-6 mo & that's for typical babies. No reason to rush Ruby when she is growing well and eating at a good pace.

My son w/Ds was fed expressed BM exclusively unti he was 4 mo old, then he started latching and feeding well at the breast. I used slow flow nipples on him (while he was at daycare) until he was around 7 or 8 months, then I switched to fast flow because the nipples needed to be replaced & that's all that was handy.

It does not sound like your ST has adequate experience in infant feeding and perhaps doesn't realize that breastmilk is best in it's natural form. Once you start altering it with thickeners or fortifiers, it changes how the baby reacts to it. I have seen too many cases where a baby starts on thickened milk and then can't adjust back to fluids in the natural state. I would seriously consider the reasons why she is suggesting this before acting on it. The only medical reason I know for thickening milk is aspiration and a ST is not the person who diagnoisis that, a medical dr and swallow study would have to confirm that.

I am so proud of you for pumping your precious food for Ruby! I know it is a challenge, especially for a mother with other young kids and so many demands on her. I truly believe it is worth every drop. I am sure you have tried to do this, but please keep trying to latch her own from time to time- no stress if it doesn't work immediately. I have read of babies switching back to the breast as old as 8 months! One thing that helped us is trying to latch when we were in a relaxed setting- like taking a bath together. When the pressure to get the baby latched on is removed (because you know baby can take milk via bottle of EBM) it makes it easier for both of you to relax.

Your husband sounds so sweet! It's wonderful that he cares about how important this is to you.

Ruby's Mom said...

Thanks!SunflowerMom,
I think I will see if I can find a new ST.I take Ruby for private therapy because I was told our county doesn't have good services.Maybe I should go ahead and try the county!I'm going to check with other parents on my local Ds group and see if they can help me find a better therapist.
Ruby has always had an excellent latch on but it would just take her forever to eat and I was worried about her getting enough milk and putting on weight. I'm going to try nursing again since she's bigger.Thanks again!

Lianna said...

I think if Ruby is doing so well without the thickener, then I wouldn't use it. If you speech therapist is trying to build Ruby's mouth muscles for sound making, there are other alternatives, I think.

I always balk a little when I hear that a professional has no experience with a person having Down syndrome. How hypotonia affects our children can be a wide range -- and usually it is therapists with experience that are more apt to problem-solving.

Because Gabriel had a lot of spit-up we did see a feeding specialist (I'm in Canada and it was part of our support services) and my husband and I did try the thickener with my breastmilk. (This was after Gabe's heart surgery.) It just didn't work for us. We were not comfortable with it and so we didn't use it. Gabe still had spit up but we just dealt with it.

As far as building mouth muscles, using a straw came easily to Gabe. Luckily, he used a straw before his first birthday. We believe that plus still having a bottle at bedtime has helped to strenghten his mouth and tongue.

I would suggest introducing a straw to Ruby as well as blowing bubbles with and without a straw. When she makes sounds, encourage her as much as you can. Blowing raspberries, cooing sounds, laughing, etc. Just like any typical baby, it helps to reinforce the idea of communication.

At this time in Ruby's life, I would even start using sign language. She may not make the signs til much later, but she will come to understand quite early.

Lovin Mama said...

Hugs from me too! I second everything Deborah said. You are an experienced mama and you need to trust your instincts and your baby. If she is doing well, I wouldn't change anything. I worried in the very beginning about how much Goldie was eating. I just kept reminding myself to trust her. She wasn't "broken", she would let me know if she needed more. This worked for me, but Goldie never had trouble putting weight on.

I have gone against the norm as far as OT and feeding go. I refused to give Goldie rice cereal or jarred baby foods. I made her food so it had lots of texture and flavor. We didn't give her any solids until she was 8 months old. She is sensitive to foods I eat, so I thought it was best to wait.

I know the therapist thought I was a bit kooky. However, ours are through the state's early intervention program and they have to be tolerant of different parenting styles so they go along with what I want. LOL. No, really,our OT is very open minded. You may find the county provided therapists to have more experience with babies w/ DS.
And another thing, I am not afraid to get rid of a therapist that isn't a good fit for us. Goldie had a developmentalist that was just too rigid for us. After 6 weeks we dropped her. I didn't feel like her heart was in it. kwim? Hang in there, you'll find your way and what works best for your family.

Kari said...

I am echoing what your other comments say. If she doesn't have reflux and isn't aspirating I don't see why on earth she would need a thickener. Tristan used slow flow bottles up until he was 4 when he had his T&A. Tristan had difficulty swallowing before the T&A and would aspirate with the faster flow bottles and a cup was out for the same reason. One thing I learned over the past few years is always get a 2nd sometimes even a 3rd opinion. Use your Mommy instincts! Maybe you cried because it didn't feel right :)

Kari said...

BTW Tristan knew how to use a cup and straw by 12 months but couldn't because of his reflux and aspirating. That's the only reason he still had a bottle. It kept him from needing a feed tub. Just thought I'd make that clear. I didn't want to worry you that Ruby wouldn't learn to use a straw or cup before 4 LOL

JaybirdNWA said...

It makes me feel bad that you were told this. Just imagine how many other Moms are given bad information by inexperienced Therapist. John is the same age as Ruby and he has been on a slow flow nipple all of his life and probably will continue to be until he gets off the bottle. I don't understand why she wants to change something that is working well - that doesn't make sense but then again, we Therapist are often notorious for following book protocols and trying to make everyone fit into the same mold. My advice to you is to go with your instincts. Your an experienced Mom and probably can tell what works and what doesn't.

JaybirdNWA said...

To echo what SunflowerMom has stated, the only reason for thickening liquids is if the child is having swallowing trouble which every ST that I have worked is the first line of defense for that. But to put a child on thickened liquids just so they can use a medium or faster flowing nipple doesn't sound appropriate to me.

COOLWHIP said...

I'm just going to say at the expense of any popularity, You are the best judge of what your child/ children need. Our kids are not best treated by text book answers. If this person has never treated someone with DS before, you need to see someone that has had diferent variables. Talk to your pediatritian. The 2 of you will come up with something that will work for you. Which is really what matters.
Eva never had a swallow test because she grew and ate all by her self. I was even able to EBF.

Lovin Mama said...

I wonder if some parents want their babies to use the faster flow nipples so they will eat quicker, which means less of their time spent feeding the baby. Maybe that was the point of view of the ST.

Jeanette said...

Thanks for stopping by my site. I read through yours and I have to echo what has already been said here. I don't think there is any reason to add a thickener. Sydney is 17 months old and still taking a bottle. (But eats solid foods too) She uses regular flow nipples now, but was on slow flow for a long time. She was also on expressed milk for about 3 months before I could get her to nurse. She was trained in the NICU to take the bottle, so I had to work her into nursing. I am glad that I did and she still nurses in the morning and evening. I will also add that she is saying two words, Kitty and Uh-oh... so I am not worried about muscle tone. HUGS! Keep following those instincts!