Breastfeeding, Milk Sharing, and Down Syndrome

Our breastfeeding journey started out different than I imagined at the start of my pregnancy. Having nursed Kaylee Dee for 21 beautiful months I felt SURE that I would nourish her younger sibling just as effortlessly for just as long, if not longer. Enter: Down Syndrome diagnosis coupled with duodenal atresia, and I knew Everly and I would take a different path. I would do whatever it took to make sure she was given that precious liquid gold, so the day she was born I kept bugging the nurses to make sure they didn’t forget to bring a hospital grade pump to my recovery room. In between visiting Everly in the NICU, I pumped. Every 2 hours, while waiting on her to come out of surgery, while David and Kaylee Dee visited, in between going upstairs to gently hold her hand and caress her little face in her incubator, I pumped. I felt helpless and like every aspect of being a mommy had been taken away from me. l may not have gotten to nurse my babe upon birth, or cradle her little body, or sleep with her next to me in a little sleeper I had carefully chosen. I didn’t get to give her sponge baths or gently clip her nails, but I could prepare for the day she was able to eat. So I pumped around the clock, setting my alarm, and buzzing the nurses in the middle of the night every 3 hours to bring Everly’s carefully pumped and labeled breastmilk up to the freezer in the NICU.

 pumping hospital   

One very excited new big sister, helping mommy pump in the hospital. 

 

I continued this when I was discharged and moved into the Ronald McDonald House of NWF, using the hospital grade pump in their Nursing Nook, and using one of the three pumping rooms they had in the NICU. I was getting an impressive 40-60 ounces of breastmilk per day, just building up a stash for when Everly was finally able to take her first tiny bottle of colostrum when she was 15 days old. She was in the NICU for 32 days while I continued exclusively pumping, because while the NICU doctors are VERY pro breast milk they are NOT pro breastfeeding. Down Syndrome also adds a challenge to breastfeeding; Everly was born with low muscle tone, so low in fact that her speech therapist labeled it as a zero(as in none) in her cheeks, which of course meant that she struggled to even have the stamina, or a proper latch. 

IMG_5540

Everly’s first tiny bottle at 15 days old in the NICU. 

 

We came home to speech therapy where we were given a Bionix special feeding bottle to help teach Everly how to eat correctly, and which muscles to tone up in order to have a good latch. After being home for about 2 weeks I got mastitis which tanked my supply. It got down to only being able to get 6 ounces a day. I was so thankful for the large stash I had in the freezer to hold us over while I got my supply back up using different supplements. All told, I’ve used Reglan(made me exhausted), Fenugreek, Mother Love Tincture, Mother’s Milk Tea, Blessed Thistle, Mother Love Capsules, Domperidone, and lactation cookies, which worked wonders for a short period of time.

supplements

A shot of just some of the supplements I’ve used.

 

I was able to get my supply back to either the full amount she needed a day, or just 5 ounces shy of her intake. Around 5 months old I ran out of my stash which was holding us over and found out about Human Milk for Human Babies, an online community for milk sharing. Everly has been the recipient of donor milk from several generous women. As she grew stronger she was able to nurse occasionally, but never as her only source of nutrition, since she still lacked the muscles to nurse efficiently.

photo 1

Down Syndrome did not stop this sweetie from eventually getting the hang of it.

I kept up my pumping routine until just 3 days short of her turning 8 months old. A feat that I’m both proud, and disappointed in. I worked hard, pumping at work, in the middle of the night, and all throughout the day, while trying to come up with different ways to entertain 2 little ones when I couldn’t get up and hold them.

pumping-work

Pumping in my office at work. I got to provide Everly with nourishment AND get out of taking my kiddos to recess!! Woohoo!!

I didn’t make the choice, and neither did Everly, to stop breast-feeding, which is why I’m disappointed. Today I pumped 4 times in the morning each time without producing a drop of milk. My body finally gave in and the supplements quit working. We still have donor milk, and will hopefully continue to receive breastmilk until Everly is at least 1, if not for longer.

 I can’t speak enough about the wonder that is donor milk. We’ve been the recipients of milk from a sweet first time mother, who had her own early breastfeeding struggles(lip tie), but pushed through and is still going strong, a mother who lost her dear, sweet baby shortly after birth and continued pumping for months as therapy, a woman from a nearby town with some extra ounces to spare, and from a mother, Adina Pop, whom I met on HM4HB who I now consider a friend, who provides milk for 2 babies in addition to her own. She is a rockstar, and I am so glad I found her. I’ve been given support and advice on a Facebook site called Hot Moms Breastfeed; a title well deserved by the women on that page, because they are beautiful, both inside and out. All of these women have reminded me in the most raw, natural part of mothering, that it takes a village, and I will be forever grateful that they became part of my village, for however long or short they were there.  

Kickin’ off Summer Vacation with a Splash!

School’s out for summer! The song lyrics this teacher has been looking forward to! I now get to spend a lovely summer home with my two sweeties. I get to take Everly to her therapy appointments, and Kaylee Dee to the library for reading time. We got our summer officially started this morning with an audiology appointment for Everly.  She wasn’t a fan of having things put in her ears and was generally fussy unless they were taken out.  She is hearing high frequencies just fine, but still isn’t able to hear low frequencies. This could be due to her small ear canals, which may or may not grow and fix themselves.  They are proposing an ABR, and we have to wait to find out if TriCare is going to cover it.Image

Happy that nothing is in her ears at the moment! <3

 

After her appointment I decided to start summer off right with a trip to one of Kaylee Dee’s favorite places: the SPLASH PAD!!

ImageImageImageImage

Supervisor of splash pad fun.

 

In addition to our fun in the sun, Everly tried her first food! After almost 7 months of breastmilk our little munchkin has now added in sweet potatoes! She will still be drinking 5 bottles of breastmilk during the day and nursing at night.

Image

I’m not sure about this.

Image

Proper eating posture.

Image

Give me more, so I can spit it out at you again!

Image

Tasty! Finished off a serving! Way to go Everly!!!

 

All in all a pretty good start to summer vacation! No sunburns, no tears, and lots of fun!

Fixin’ Everly’s Noggin’

   Everly got her medical band on April 11, and started phasing in to wearing it 23 hours a day the next day.  She is now on day 4 of wearing it 24 hours a day and she is doing great with it! During her hour of “free time” we clean the helmet with alcohol, give her a bath, have some helmet free tummy time, and get in some(ok, a lot) of kisses on the part of her cheeks that are covered by the helmet.

   She didn’t have to wear it through the night for the first several days, so day one I painted the helmet, and day two I sealed the paint with Mod Podge.  True to my southern roots, I added her name and a bow. No southern girl should be without a bow.

ImageImage

   Everly developed a flat spot on the right back side of her head while she was in the NICU recovering from her duodenal atresia surgery.  This caused her to have a very difficult time looking left, and could result in torticollis(not being able to turn her head left) and difficulty with crawling and walking since it moved one side of her forehead forward and could potentially cause balance issues.  

   Unfortunately, TriCare doesn’t cover these helmets, and they can run into the thousands.  I started a Go Fund Me for Everly’s helmet not thinking we would raise our goal, but every little bit donated would be a great help to us.  We were absolutely blown away with the outpouring of support.  We met and exceeded our fundraising goal in just 6 short days thanks to family, friends, and some strangers.

Image 

ImageImage

  After wearing it for the first week, I can already tell a difference, and I can’t wait to see how she does after wearing it for the full time.  Thank you to my “village” for helping us in our time a need.  

Image 

5 Months of Sweetness

   Everly is now 5 months old, and I am thrilled by the progress she has made, and by how much she has grown.  After getting discharged from the NICU we started speech and physical therapies through TriCare to help with her low muscle tone(a typical trait of Down syndrome) and her poor stamina and latch while feeding.  Because of her wonderful speech therapist, Amanda, Everly was introduced to her bottle the right way, and I was taught proper techniques and tricks to help her.  We haven’t had to use her g-tube since February 5, and we are looking forward to it coming out at the beginning of May.  

Image

   Her physical therapist, Rebecca, has worked hard with Everly and myself to encourage and train Everly’s muscles and she is hitting milestones ON TIME. On time.  I can hardly believe it.  She can roll from her tummy to her back, she found her midline, she grasps toys and brings them to her mouth, and she can hold her head and body up when supported.  The medical band has thrown some of this for a loop as she’s now having to compensate for the extra weight on her head.  

Image

 

Everly, hard at work with Ms. Rebecca. <3

 

Image

 

Everly babbles and plays with us and lights up each morning and afternoon when I pick her up.  She giggles when tickled, and loves to watch her big sister play.  Typical 5 month old stuff from our sweet girl.  Daddy is being tasked with finding the jumperoo so we can see how she does with it!

Image

Happy Easter from my little sweeties!

T-shirts, T-shirts everywhere!

   Our Buddy Walk for Down syndrome Team Everly t-shirts came in on Monday, and we were very busy getting them sorted and ready to ship out! I’ve been overwhelmed  by the support that our friends and family have shown for our sweet Everly!’We sold 59(!) shirts and raised $368 for the National Down Syndrome Society.  

Fifty-nine. 59.

    I had to keep looking at that number, and was again over come with emotion when the shirts came in. Fifty-nine shirts to sort, label, and ship out. Fifty-nine shirts being sent to 59 people who love and support my little girl, and people with Down syndrome. WOW.  Excitement, tears of joy, and a little bit of panic when I realized that I(me, the unorganized person) had to sort them(correctly!) and get them sent out, or hand delivered to all 59 of Everly’s Team!  

Image

 

That’s one proud big sister right there, wearing her Team shirt.

Image

 

Everly getting in some tummy time amongst the sea of shirts.

 

 

Image

 

Cuteness. Pure cuteness.

 Image

 

Packing the BOX heading to Jacksonville, NC. A whole box full of love.

 

Image

 

 

Image

 

Mailing packages at the post office.

 

 

Image

Sweet girl snuggles at the end of the day.  Everly says, “Thanks for being my number one supporter Kaylee Dee.”

 

I can’t wait for the Buddy Walks in October.  My family has been blessed with more love and support than I could ever imagine. 

Throwback Thursday: Diagnosis to Now

For this #tbt I decided to do things a little different.  Not just a picture on Facebook or Twitter, but a look back at our diagnosis through pictures.  Now, I know what you might be thinking, “Pictures?”  Don’t worry, I wasn’t in the midst of THE most tumultous day of my life posing for pictures or snapping selfies. But I was texting.And boy am I glad that I did text. Not just for support that day, but because had I just simply phoned people(I did) or just talked to people in person(did that, too), I wouldn’t have a tangible way to look back and really, truely remember those first hard conversations. 

Image

I’ve taken just a small glimpse of those texts between myself, one of my very best friends, Sam, and my friend and mentor, Susie, and pic collaged them, as well as from a dear new friend that I was introduced to that day, Kris Barrett.  They got my bombshell of a text and responded with all the right things to say to me.  

 

Image

Image

And the best part? Looking back over these texts today when I got to the end of the conversation we had on that fateful day in July, the group message goes back to talking about getting our classrooms ready for the upcoming school year.  They got me through it, helped me accept it, and then we got on with our lives.  

Image

No, that day certainly wasn’t the last time we talked about Everly’s Down Syndrome diagnosis, but we didn’t dwell on it, and it didn’t become a defining characteristic of her or me and the pregnancy; and for that, I can never thank them enough.  

Image

 

With two of these beautiful ladies today. Don’t hate on our school shirts. ;)

Image

The coolest people our students will ever know.

Image

A close up of who the fuss was all about. 21 weeks and happy as a clam.

Leaving Behind A Little Hope

I recently had to return to Sacred Heart in Pensacola for follow up appointments with Everly’s endocrinologist so I took the opportunity to stop by the perinatal center where I was seen during the pregnancy to show off my sweet little peach.  I asked at the desk to see our geneticist, Sam Stover, and she came up immediately.  I haven’t blogged about her before, but I am so thankful that she was there from our first appointment for the amnio through the end of my pregnancy.  A graduate of N.C. State, and native of Eastern NC, she was a little slice of home, and a whole lot of heart.  She eagerly took Everly in her own arms and cooed over her cuteness.  We also got Dr. Beiswenger to show her off to him as well.  It was great to see two people who were such an important part of my prenatal care without any of the fears that I had each previous time I had been to the office- scared of what would be found on the ultrasound, and what it would mean for my little girl.  Now we were there as a celebration; to talk, not just about Down Syndrome, but about other typical baby stuff too- how is she sleeping, feeding, how is big sister adapting? etc. Oh, and that picture I promised to send? It was hanging in Sam’s office- where people constantly stopped in to look at my happy little girl.  It’s since been moved out to the main board in the hallway. I like to think it  will offer hope, love, and bring a smile to everyone’s face that sees it.  Image

Spreading warm fuzzies at the perinatal office.