Wednesday, February 16, 2011

Feedings, etc...

I have been procrastinating with this post for good reason: it is going to be long. I didn't know how to do it and it be resourceful to parents with questions. The best idea I have is to go monthly and cover some of the basic topics in there.

I nursed my first two children and figured I would with the third. Then I found out, prenatally, that Calvin has Ds and I was warned by many he might have difficulty nursing. I recall a NICU doctor who was about 65 and male, telling me how it would be likely he would have trouble. I told him I have nursed for 27 months and with some difficulty, so I was not coming in to this without experience. I felt myself getting defensive and wanted to ask him: "...and how many months or children have you nursed?" But, I know he saw more than I did, so I just sucked it up and decided that even if Calvin struggled at first and didn't start until he was 4 months old, I could live with that. Little did I know, that is exactly what would happen. Photobucket
thanks for borrowing us the shirt Aunt Katie

As I mentioned, I nursed my others. Evan nursed very well but not for the first week. He had jaundice (as did Nolie) which makes babies very sleepy. I recall being told that maybe nursing just wouldn't work for us (by a nurse when Evan was 3 days old). Little did she know, I was not the type to just give up and walk away; accepting defeat. So, I asked for help and was grateful to get it. I would wake up to an alarm every 2 hours, try to wake Evan, latch him (very painful for about 3 weeks), keep him latched, wake him, and over and over for about 5-10 minutes all while he cried when woke (a cycle of sleepy baby, wake by undressing and tickling feet, crying, latching, falling asleep, waking, crying, latching, falling asleep, etc.). It was tough! I would pump afterwards and syringe feed him what I pumped. Then I would wash the parts and crawl back into bed for roughly one hour of sleep before the alarm would go off again. I cried a lot. I realized why many mothers do not nurse. It was hell those first couple of weeks.
Now I know (from time in the NICU) that bilirubin levels usually peak by day 5. Also, fluids help a lot and there is a breast-milk theory (it has been a theory for a very long time - without any proof) out there so some doctors encourage use of a little formula to get over the 'hump'. I did that for about a day with Nolan. I would nurse him, syringe feed him what I pumped (like with Ev) and then give an ounce of formula. It is evident in the very early days postpartum, that nursing is not easy for everyone, and wasn't for me with any of the kids.
Nolan nursed all the time, day and night, for months. He was not big in to solids and I weaned him at 14 months. It was during these late months with both boys that I realized how special nursing was. I encourage anyone willing to try (or just open to the suggestion) to nurse. From personal experience I can tell you the bond is different. I feel as though my child is a part of me when I am nursing. Please do not feel as though my message is that formula is bad and you should feel guilty if that is what your child ate/eats. It's just that nursing is a experience that is more than just nutrition (though it is the ideal nutrition, and scientifically proven to be so). It is a way of being with your child that extends to things beyond food. It is also easier in many, but not all, aspects.

These are all reasons why I am so grateful to God that Calvin nurses. I'll tell you how we got there - though it was definitely not in my control.
I took choline prenatally and do to this day.

Month ONE:

Calvin was born 3 weeks and 1 day early. He was placed in my arms for roughly 1 minute before being whisked away to the NICU (very sad for me still). Calvin was diagnosed prenatally with Down syndrome and a Complete AV Canal defect. His cardiologist expected Calvin to do well after birth but did suggest going to St Paul to deliver him as I would be closer to him for his NICU stay. He was born at 11pm and I did not see him until 1am. I did not try nursing him until about 6am. That went against my every fiber.

I did pump right away and barely got a drop. Those drops are hard to come by and do not at all indicate how successful nursing will be (supply wise). I spent a lot of time at the pump and I plan to give pumping tips in the end.

After Cal was born Joe went to the NICU and came back telling me they placed an NG tube to give him formula as his blood sugar levels were a bit low. Again, I am still frustrated by much of his NICU stay. But, I won't get into that here as I already did back when he was born and nothing can change that. However, if you are pregnant and reading this, I would advise you to do a lot of research and advocate for your nursing relationship if that is what you want. I had to demand to hold Calvin in the first couple of days. One nurse in particular gave me a hard time about taking him out of the warm issolette. And, unfortunately, I sensed too much prejudice against Calvin and his abilities, as he is not considered normal (one nurses' view, but one that dampened the first couple of days, which are crucial for not only nursing, but just the mother/child bond formation).

Making up for that nurse was an excellent staff of lactation consultants, speech therapists, and the occasional encouraging nurse (God staffed some sweet women on most of our days). The consultants were always positive and encouraged me to keep trying and also helped make my *pumping a success.

Calvin did not eat well in the NICU. He did have a swallow study and was diagnosed with aspirating, or breathing in his food. I did try nursing every day, a few times, and it rarely went well. He was sleepy as most babies with Ds are. And with his heart condition and aspiration, well, we didn't have a good hand for betting on a nursing baby. We left the NICU thickening bottles of formula with rice cereal. I was angry and felt sick mixing up such bottles. However, he aspirated breast-milk thickened with Simply Thick, so that was not considered safe at the time. We left the NICU on August 9th, when he was 2 weeks, 3 days old.

Calvin preferred the following bottle, by MAM:

There are 4 nipple sizes and I did not discover the fourth until we came home after OHS and he was no longer aspirating. The fourth size is I believe X, for thickened foods! Seriously, that would have saved us some work making the holes bigger.

The first 4 months were hell when it came to feedings. I was always working to improve the system and was never satisfied because I just wanted to nurse him. I'll get to more of this...

Calvin ate, with a lot of coaxing, about 12 ounces of the formula/rice cereal mixture. He became constipated and I hated it and decided I was done and he was going back on breast milk.

Month TWO:
At Calvin's one month cardiology appointment I told Dr. Sutton that I wanted Cal on breast milk. He encouraged me to go for it. The pediatrition we had just seen was not helpful, so I found a nutriotionist to help me. Karen R. Hurd. Her site is listed on the right. She started us out on 1/4 tsp of psyllium husk powder but this was very vague so I had to experiment. The psyllium also clogged the third largest nipple hole. Also, we knew Cal needed more calories. The rice cereal was adding some with the formula but since we changed that, we needed to find another source. So, I added Light Olive Oil. Here is what we did for month 2:
about 2 ounces breast milk with 1/2 tsp psyllium and 1/2 tsp oil.

In month 2 I started adding a probiotic. That should have been done right away! On the 9th of
September I started using Guar Gum to thicken the bottles. The psyllium was making Calvin
poop as often as he ate. So, I started using about 1/8 tsp of psyllium and 1/4 tsp Guar, with the oils still.

Month THREE:
It was in the third month that I eliminated psyllium and stuck with Guar Gum. Guar Gum and
Xanthum Gum are similar and Xanthum is used in Simply Thick. Why didn't I just use Simply
Thick? And, what about when I mentioned he aspirated Simply Thick in the NICU?

Well, Simply Thick has added ingredients as preservatives AND it is expensive. So why would I
use that? Sure, you have to give things like Guar and Xanthum and Psyllium time to thicken so
it just takes some thinking ahead. I usually mixed up a bottle, pumped, then fed Cal.

What about aspirating Simply Thick in the NICU? Well, I was gambling to be honest. I felt that Calvin was gaining
strength and coordination and therefore could handle it. I watched for signs of aspirating and
said my prayers.

Calvin started eating more so we eliminated the oils. We also decreased the Guar to about 1/8
tsp per bottle.

Finally, we started using NuTriVene-D and Nordic Naturals with Vit D. More on this here.

It was also in the third month that Calvin started latching on fairly well. I would pump then try.
It is very important to keep trying and not be afraid. You can back track through my posts
and read more if you need, or contact me in the comments section. I can answer questions.

Calvin had his heart surgery on November 15th, just a week before turning 4 months old. He
did a follow-up swallow study before we left the hospital and he was/is no longer aspirating. It is my belief
that because he struggled to breathe, it was too much work to coordinate breathing with swallowing.

Month FOUR:
I put away the bottles the day after Calvin turned 4 months old. He was a messy eater and it was
still a lot of work to get to where we are at today. However, I was committed to nursing. I treat
it like I did with the bottles. I feed him as often as he wants/needs but no less than 5 times a day.
I push for 6.

TODAY, almost 7 months old:
NuTriVene-D is messy, all day long with burp-ups

Calvin eats fairly well. I still have a cloth under him as he eats, but it is not nearly as wet and I
believe he will get to the point where he no longer needs it. He likes to nurse.

We recently went to one bottle a day to get NuTriVene-D, Nordic Naturals, choline, and a probiotic in him
directly. I was taking those but I've had the break I needed from the extras. We have Longvida
Curcumin in the cupboard but it clogs the nipple, so that will have to wait for solids. Also, you'll notice
Calvin does not get the third NuTriVene-D product. It is the enzymes, but nursing babies do not
take that.

As I mention, the lactation consultants helped me make pumping a success. I honestly went in the first few days feeling like I knew what I was doing (I had nursed 2 others and did my fair share of pumping). However, I took their advice and watch a video on exclusively pumping and learned the following:

often: pump every 3 hours: I did midnight, 3am, 6am, 9am, noon, 3pm, 6pm, 9pm for the first month. I cut out the midnight session in the second month because my supply is good. Calvin did not eat that often because he was too sleepy. So, I gave myself that break and got up once between 9pm and 6am.

handsfree: bras are expensive, you can use a sports bra or a belly band from the hospital and cut holes for the shields (free and washable and last a long time).

hand express: pump through first let-down, then stop and hand express (takes practice but is easy), then rest a couple of minutes and pump through another let-down ( or a total of about 20 minutes when doing both sides at once). Make sure to hand express when finished (this is all in the video I watched).

Prolactin levels: can be affected by your over all health (exercise/diet). Some say exercise negatively impacts production levels but I did not find that to be the case with my 2 ounces per hour (pumping every 3 hours for the first month and then cutting out a session in the middle of the night after that). The key to production is prolactin levels and those are dependent on how well your doing with nursing or pumping.

I recently read this blog post and it has a ton more information on pumping and nursing. Again, ask if you have questions! I am always happy to help. There are always plenty of options when it comes to feedings and pumping and milk production. If you struggle in any of those areas, get help.



  1. I am so glad you posted about nursing and Down syndrome. I nursed my first, and she never took bottles. I was determined to with my second as well. I understand that special bond you are talking about. My second girl has Down syndrome, and it was tough in the beginning. I kept hearing the same thing "kids with Down syndrome do not nurse well." If I would have listened enough, we would not have been successful. I followed my heart and determination and also read that nursing a child with Down syndrome is one thing you can do to help tremendously with their development, especially speech. We were successful and by three months, she was a pro. She never took bottles either, and I nursed her exactly like I did her sister. Moms with Down syndrome need to hear this...thanks for taking time to put it out there.

  2. Oops, I meant to say at the end Moms with kids with Down syndrome. I should proofread a little more carefully. Sorry.

  3. Great post for new and expecting moms!!!

    I saw the picture of "Your Cliff". Isn't he a sweetheart?! A Facebook friend of mine is adopting him. I've already donated to his adoption fund and hope to donate more when our tax refund arrives.

  4. Thanks Becky! I have been wanting to post a resource and I'm hoping for as much feedback as I can get so it is useful.

    Wow Cathy! That is awesome. He looks so sweet and reminds me of Calvin. I am very happy to hear that. I donated to his RR site back in December!

  5. I posted a comment on Lisa's FB with a link to your blog. Their adoption site is

    And I meant to mention before...if you switch to a blogger template (I know they aren't as cute) and download the latest version, you can make your photos fairly large without having to use photobucket. I believe my post on Valentine's Day has the photos set to blogger's XLarge. Just a thought...might save you some time.

  6. Love this post!! I am so glad it has worked out so well for you guys. I too heard lots of "kids with DS can't breastfeed" or "low-tone kids need bottles" from doctors/nurses/etc. However, Charlotte has been a champion nurser from day 1 (better than my two typical kids in fact!!).

    Spread the with DS and an AVSD can and do breastfeed!

  7. I loved this post and especially the pictures. Calvin is ADORABLE! Thanks for the link btw :)

  8. great resource for new mommies!!!