Talking About Breastfeeding

Yesterday a friend asked me how long I intend to breastfeed Cora, commenting that I must want my body back after all this time.

Because little Girlie is showing no signs of slowing down.  It's difficult to get her to sip out of a cup, since she'd rather throw it on the floor.  And why should she?  She much prefers getting the good stuff and her snuggles at the same time.  As for a bottle... don't even think about it.  She dropped bottles shortly after she started breastfeeding.  I can't say that I blame her, especially considering that we practically force-fed her what didn't go through her feeding tube, at least until after her heart surgery.

So breastfeeding it is.  And seems like it will be for a while yet.

And the truth is, I love nursing.  I don't feel that it's an invasion on my body at all.  I love getting to snuggle Cora into me, legs tucked up in my arms, cuddled in.  It's usually a combination of eating time and playing time; with my silly goose coming up for smiles, giggles and babbles, and periodic attempts to grab at my face or get her little fingers into my mouth. 

And since it was such an enormous accomplishment for her to learn to nurse and to do so efficiently, I am in no hurry to give it up quickly.  Factor in the great immune benefits it's seemed to offer her and her slow progress through solid food and I am even more pleased that she is such a good little nurser.

I read a blogging friend's post earlier this week about breastfeeding her daughter with Ds.  Meriah from With a Little Moxie shared her story of the process of learning to breastfeed Moxie, despite the medical professionals doubts and despite the perseverance it required.  Her post is a beautiful testament that often a mother does know best, even when the professionals disagree. 

It was wonderful for me to read another positive breastfeeding story about a baby with Ds, since I know that these stories abound.  Yet time and again, it seems that medical professionals are doubtful.  And then the seed of doubt is planted, and maybe a new mother just stops trying, thinking that it's probably not worth the effort.

When we were desperately trying to get Cora out of the NICU she had to show that she could eat enough to go home.  Breastfeeding wasn't happening all that easily, so a nurse that I liked told me that if I could get her to take x mL we could get her out of there.  And that if I gave it to her in a bottle it would go faster, would be easier to her, and we could just work on breastfeeding later when we were home.  Well, the volume that Cora had to take kept increasing and she just couldn't successfully keep up.  So we chose a trial run of an NG feeding tube, thinking that a little help might be just what she needed to get over the hump and do it on her own.  But she still couldn't keep up.  So then we tried fortifying her expressed breast milk with formula (even though at first I couldn't conceive of being willing to do such a thing), so that she would need less volume to get the same calories, but still she couldn't keep up.  Eventually we petitioned to take her home with an NG tube.  The hospital didn't like that idea very much.  We had to prove we could do it, go through training, rent equipment (that cost well over $1000 and that we never really used anyway), talk to case workers, and repeatedly convince the doctors on staff that we were competent.  But, 18 days after going to the hospital with our little blue girl, we took her home with the tube.  And a few days later she didn't need it anymore.  Sure, after a few weeks, as her heart failure progressed significantly, she needed it back badly, unable to drink even an ounce out of her bottle. 

During all this time, I attempted breastfeeding, a little every day.  For weeks her heart-failure induced reflux was so bad she couldn't even try without gagging.  But she'd cuddle against me and smell me. 

When she started nursing less than two weeks after her surgery, I was amazed.  And we've never looked back.  She didn't need a nipple shield, we didn't need a whole bunch of lactation consultants looking over our shoulder (although I am sure that their earlier recommendations helped me a lot).  We were off and running.

I am very proud to have been able to nurse her.  But mostly I am proud of her.  If you know me at all, you know that I think she's pretty amazing.

But the thing that I am not very happy about now, looking back, is all the advice I received.  The NICU nurses, the lactation consultants, the occupational and physical therapists, the NICU doctors, the speech therapist and who knows who else had all told me that it would be more work for Cora to breastfeed than to bottle feed, especially with her heart defect.  And because I wanted her to be able to successfully feed at all, I stopped trying so hard. 

But the crazy thing that I have learned since then is that the American Heart Association states that "the "work" of breast-feeding is actually less than the work of bottle-feeding. Sucking, swallowing and breathing are easier for a baby to coordinate, and the amount of oxygen available to your baby is greater while breast-feeding than when bottle-feeding. In general, when compared to bottle-fed babies, breast-fed babies with congenital heart defects have more consistent weight gain."   

What!?  Excuse me??  

Then why in the world were all those doctors and nurses telling me exactly the opposite?!  It's maddening, is what it is.

Truthfully, Cora may not have done that well with breastfeeding initially anyway.  She was in serious heart failure pretty early on, and did need a feeding tube and more calories than my breast milk alone provided.  But still... I should have been provided accurate and up to date information.  All parents should be.  Especially those women out there with a Down syndrome diagnosis.  The excellent benefits that breastfeeding a child with Down syndrome offers make it worth getting that information out there.  And getting more of the success stories out there can only help that along.

Silly Goosie sneaking a mid-feed smile at Daddy.

Cracking her mama up over here.  Or is it the other way around?

Sweet baby.

7 Months Old

We plopped Little Beanie on our baby scale yesterday. Yes, we have a medical office grade baby scale- invaluable when your little one has heart failure and you're counting every ounce gained...  Now that she's post-surgery and thriving like crazy we don't really need to weight her that often, but curiosity often gets the better of us.  This week I noticed her little cheeks getting fuller and her double chin starting to get softer.  The rolls on her arms and legs seemed extra squishy and lifting her seemed to take just a little extra oomph.  So I told Nick that I thought she had gained quite a bit and we should put her on the scale.

Lo and behold... 14 ounces gained in 2 weeks!  In 2 weeks!  Who is this crazy weight gaining baby?!  We were told that she would most likely gain weight more slowly than typical babies.  Plotting her growth on the Down syndrome chart she started at 25% and has been in the 50th for the past few months.  And now she's up to about the 70th, working her way up to almost 10% on the typical growth charts.  7 months old and 14.5 pounds.  That may still seem small, but I know of several little sweeties with Ds who are the same weight and are about a year older than Cora.  And here I thought she was going to be a small baby.

Now I wonder if her growth will slow down or if she's gonna keep putting on the pounds.  Am I over-feeding this little girl?  We feed frequently during the day since she goes about 10 hours at night without food, so now I've been trying to stretch out her feeds a little bit at a time.  But she just won't wait sometimes.  Must be a growth spurt, so I'm not gonna let her fuss and starve. 

I've had some concerns about whether she will overeat in general and whether she will experience decreased sensation and thus decreased ability to know when she's actually full.  Although this can happen with Ds it doesn't seem that different from a lot of us typical folks (me included) who just love to eat.  This doesn't seem to be the case now, but I'm not sure how to tell.  Since this is my first baby I don't have much to compare her to.

For now she is healthy and happy, if a bit clingy.  She's decided she likes squash, is allergic (we think) to peas, and really doesn't like carrots, although she gave them a fair shot.  The jury's out on bananas.  She's forgotten how to use her straw cup after a couple weeks of behaving like an expert.  She's gaining trunk strength every day in her efforts to learn to sit, and still isn't very motivated to roll over, unless it's to get out of tummy time or to get onto her side to nurse lying down.  She's starting to try and push herself around with her legs when on her tummy, but isn't quite sure about it. She loves to hear her own voice, especially early in the morning when we want just a few more minutes of sleep.  Her favorite toys are mason jar lid rings and a cold beer bottle. Aren't we great parents?  In our defense, we don't let her actually drink the beer...

She is 100% adorable cuteness, getting bigger all the time.  Growing up.  Yikes.  7 months of pure love.

Adventures in Feeding, Then and Now

Now that Miss Cora is 6 months old, I realize that her life is divided in half for me.  The first three months before open heart surgery, and the last three months since.

Like I've said before, it really is night and day.  While we were waiting for surgery, it really did feel that the waiting and the fear would go on forever.  It seemed impossible that it would be behind us.  And now it almost seems like an imaginary time.  The struggles she faced before surgery now seem so distant.

But even though it seems like ancient history already, it has definitely colored my feelings about our life today.  I think that I really appreciate our day-to-day more than I may have otherwise. 

Anyway...  I got to thinking about feeding Cora again today.  The first post I wrote in this blog was about feeding her.  Because for the first 12 weeks, feeding Cora was the focus of my life: the horribly stressful, difficult, all-consuming focus of our lives.

Many other parents of children with Down syndrome can attest to this, and probably others as well, but feeding a baby with Ds, especially one with a heart defect, is very different from feeding a typical baby.  Imagine a baby that seems to have no sense that she is hungry, that doesn't wake up to be fed, or show any hunger cues, that doesn't open her mouth to eat, and that almost never takes her "quota".  For a typical full-term baby you may never even know that there is a quota.  But when the NICU doctor gives you a feeding schedule with intake requirements just to take your baby home and sends you to specialists at the Feeding Clinic it's a different story.  Especially when you know that the baby has to gain weight to have a surgery that she will die without.  Trying to feed your baby becomes quite a stressful event.

I remember hearing advice about how to know when your baby has eaten enough, and thinking that there was no way to apply that to Cora.  That Cora would starve if we left it up to her.    And she very likely would have.  I never imagined that things would really change.

And then, when we were working on breastfeeding and actually started her on breastfeeding after surgery, I was overjoyed but was still so worried and stressed.  How to translate all we'd been doing to breastfeeding, especially when it was so hard to keep track of it all?

All the information I received advised me to feed per demand rather than feed on a schedule.  But how would that work with a baby that didn't seem to know she was hungry?

Amazingly, it has worked out.  True, at first she did breastfeed on a schedule, but eventually she started to let me know she was hungry at different times, often more frequently than I would have otherwise fed her.  Gradually I increased the number of hours I would let her sleep at night between feeds and still she continued to gain weight.  We kept up a bottle or two a day of fortified breast milk for a few weeks, and we were able to let that go as well.  I gradually reduced my pumping as my milk supply reduced and evened out.

And now, our girlie is fed on demand (although I usually know how long it's been since she's eaten and will offer her food after a period of time).  She has learned to let me know she is hungry and I've learned to trust that I can read her cues.  She eats a lot during the day and then goes about 10 hours at night before waking up to be fed.  She hasn't taken a bottle in at least a month.  I even stopped pumping over a week ago.  And still she gains weight.  Our little Superstar!

And the best part?  Feeding her is no longer a stressful event.  I no longer feel fear in my stomach when it's time to eat.  I don't spend evenings crying because I can barely do the most basic mother's job of feeding my infant.  Now feeding is a fun time to cuddle, snuggle, and love.  And eat.   She finds it comforting too, which is natural, but is such a change. It is one of my favorite recurring parts of the day and I am in no hurry to wean her any time soon.

This adventure is so much more fun.

Look at brand new Cora Bean learning how to eat!  Wow!

Breastfeeding and Pumping and Breastfeeding Again, Oh My!

I woke up this morning for Cora's frequent feeds and caught myself humming a catchy little tune by my talented and creative friend Moorea Malatt. Check out her awesome video, which is entertaining even when it's not your soundtrack for feeding your baby.



Life has been feeling pretty darn normal around here.  Well, it'd be a little more normal if we weren't still under pseudo-quarantine with Miss Cora.  They told us she should be kept mostly at home and to try to avoid exposing her to illness for 4-6 weeks.  We're a little past 3 weeks now.  At least it's still raining most days so I don't feel like we're quite so holed up.  But I am looking forward to the clear spring days when we can go out and socialize with all our local friends, including a number of new additions.  So excited for Cora to meet all her new friends.

Feeding her lately could almost be described as fun.  She is still breastfeeding like a little champion. We've been monitoring her weight, and she is continuing to gain overall.  She's still been getting a bottle with Nick and a bottle from me in the middle of the night, since she's too sleepy to nurse, and it's pretty much impossible to prod her along with the breast, whereas with a bottle you can work it into her mouth to see if she'll eat.   But she wants the bottle less and less overall and she seems to be deciding more or less that she doesn't need to eat much at night.  Great, you would think, right?  The idea of getting to sleep for more than 4 hours at a time is very seductive for sure.

But that is before we factor pumping into the equation.  Until this whole breastfeeding thing took off, I was proud to be an overproducer.  Which meant that I was pumping almost 3 times what Cora was eating each day.  This allowed us to lacto-engineer her milk, since we had enough to separate the rich fatty "cream" to add to her bottles.  And it allowed us to fill up our freezer and still have enough to donate.  Great, right?

But now I am still producing too much.  Which means that although Little Miss is eating about every 2 or so hours during the day, I still have to pump.  Not altogether desirable to me.  I've been researching tricks to reduce my milk supply so I am not forever attached to the breast pump, but so far it's very slow going, since I keep getting clogged ducts, which causes back-tracking.  And of course, since Cora doesn't always eat enough to get to the hind-milk, I often have to pump a little before she eats.  So far at night I can go 4 hours, maybe 5 if I'm lucky.  So it still seems a ways off to be done with the continual pumping.

Before she started breastfeeding I was spending 3 to 4 hours a day in activities involving pumping and processing milk.  That included pumping 6 times per day, washing bottles and pump parts, reserving milk for separation, separating the fatty "cream" and adding to her bottles, fortifying with formula, and freezing and labeling excess milk.

That did not include the 4 to 5 hours per day spent feeding her for up to 45 minutes per session.  And of course, there was the illustrious NG tube feedings after her bottle feeds, which required us to check placement with a stethoscope by pushing air through a syringe into the tube, while listening to her stomach for the "woosh" that would tell us the tube was correctly placed in her stomach and not her lungs.  Then the slow and steady pushing of milk, a few mL at a time, every few minutes until it was gone.

I feel so much lighter now that she's nursing.  And it's getting easier for her and more pleasant.  She still horses around sometimes, popping off and on inexplicably, and frequently falling asleep, waking to drink every minute or two, which can make for a long session.  But feeding is overwhelmingly easier.  Thank goodness!

Really nothing much to complain about.  She's still experiencing the nystagmus.  Her pediatrician referred us to an ophthalmologist, but we won't get in until early June.  In the meantime, we're getting ready to go visit Grammie and Grandpa for the weekend.  It'll be fun for Cora to show them her new skills (looking at her feet and trying to sit up more!)

Off for another "Booby Snack"!

Major Milestone!!

I am so happy to be able to say that after 3 months of bottles, Cora has started breastfeeding!  She started on Friday, and has just gathered steam ever since.  She is already pretty much refusing to take bottles from me (although she'll still take them from Nick), which is crazy since I've heard that it can happen, but didn't expect it to happen so soon.

Of course, it's a lot trickier to know how much she's getting, and being the fastidious chart-happy milliliter counting parents we've been it's almost disconcerting.  She hasn't gained in the past 2 days, but we're hoping that she'll continue on and actually start gaining weight.

I really didn't expect this to happen.  Okay, so I hoped, but I was trying not to weigh too much of my happiness on it.  So I am thrilled.

Otherwise not much else to say.  We went to the pediatrician today, which went really well.  She is healing beautifully and her incision scab is almost completely gone.  She has been less fussy at night, which is welcome.  She even napped really well today, which she hasn't been doing lately.

And of course, I have to post her cutest pictures from the last couple of days.  My sister Mira who is trekking through Thailand and Vietnam has asked for a new video, so I will work on that one soon.  It will probably be much easier to capture her smiles in motion.