No More Tears

Everly recently underwent her second surgery on her tear ducts. The first one was done at the end of February, right before our big move, and involved inserting a balloon catheter into her ducts, blowing it up to open the ducts and then removal of the catheter. We noticed a slight improvement in the amount of goop she was accumulating, but it still wasn’t fixed.  Her tear ducts were temporarily open, but they soon closed back up and we were back to square one.we were referred out for surgery again once we got settled in our new home and this time they decided to do the balloon catheter and leave a stint in to hold the tear ducts open. David was in California training, so Kaylee Dee got to have a sleepover with Great Grandma Dee and Granddaddy Don, and just Finley came along for the surgery with me. image

All packed, and ready for her first sleepover.

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Sweet snuggles way to early in the morning before surgery.

After checking in to the surgical center, we were shown to a room and waited back there to be called for surgery. Everly quite enjoyed all the attention she was given as nurses and doctors kept coming in the room to get her prepped. image

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Last minute “chat” with Finley. Kisses and hugs were shared.

After a fairly short surgery, we had a long wait in recovery due to excessive nose bleeds, and some bad reactions to the anesthesia. Finley was carted around by a very helpful nurse while I calmed Everly down and nurses worked to get the bleeding to stop. After about 2 hours we were sent home. Kaylee Dee was very excited to see us again, and wanted to help with everything when we got home. So far it’s hard to tell if the surgery made a difference. Her eyes still seem watery, but right now I also have to put drops in 4 times a day. Luckily, there was no bruising under her eyes, and she was back to her spunky self by the evening. image

Celebrating a Day in our Life with DS

In preparation for World Down Syndrome day I’m participating in the Down Syndrome Diagnosis Network(DSDN) campaign to raise awareness and give a little glimpse into the lives of people and families with Down Syndrome.

   In many ways our lives are typical. Everly loves playing with her big sister, Kaylee Dee.  Most mornings I find these two snuggled up in Everly’s crib giggling and playing hide and seek.  They are each others biggest fans, and I am always amazed at how much they have each grown this past year.  I see my rambunctious 3 year old encouraging her little sister, and eagerly learning ways she can help Everly become independent.  I see Everly gain strength and communication skills as she tries desperately to keep up with her big sister.  Everly plays with her babies and learns new signs and words each day. The joy in her face is nothing short of illuminating when she interacts with us.  I love watching her hug her babies and sign “night, night” to them, only to drop them minutes later to scoot across the floor to grab a couple legos to bang together. Her curiosity inspires me.

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But, there are some areas where our daily lives veer off the “typical” path; they bring people into our lives that we would never have the chance to know if it weren’t for DS. They bring moments of joy and celebration that are often overlooked in families.

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   Because of Down Syndrome, we have 4 wonderful women in our lives that we otherwise wouldn’t know. We spend time each day working on physical, speech or occupational therapies. Calley, Amanda, Rebecca, and Elizabeth worked hard to bring out the best in Everly at each of her therapy appointments. They are the building blocks in our celebrations as Everly reaches milestones, even now that we’ve moved.  They not only helped Everly, they encouraged her spirit and independence with each new skill.

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We may have moved, but their work built the foundation on which Everly will thrive. So, celebrate we will. I’m sure to some our lives look busy, hectic, or even frustrating. Because of Down Syndrome my day to day life is filled with more connections, love and celebrations, both large and small, than it ever was before.

The day a bunch of internet strangers said my daughter was beautiful

Recently I uploaded a picture of Everly to a group on Facebook looking for opinions on the fit of a Beaufort Bonnet I bought for her.  What I expected was comments about how the hat fit; if the brim was too large, or if I needed a different size. What I received filled me with joy.  They called her things like perfect, beautiful, precious, doll baby, and adorable. Words that I’ve thought applied to Everly since the day I gave birth, but not ones that I expected the world at large to attribute to her.

You see, this group of moms has a love of smocked clothing and boutique, heirloom dresses in common. Not Down Syndrome.  I’ve shared her photo countless times on my Down Syndrome support groups; this is the first time I shared it in a different type of “mom group”.

They didn’t see her Down Syndrome. They saw Everly; my sweet girl, with the big infectious grin, and sheer delight with life.

So, thank you, internet moms, for seeing the beauty where many may not.  For seeing just a little girl, in a large brimmed bonnet, and not her diagnosis. Thank you, for calling her beautiful.

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A letter to myself on diagnosis day

Looking back on our diagnosis day is quite surreal at this point. The feeling of having my perfect world shattered is one that is hard to describe, and painful to remember.

I remember being scared that we couldn’t handle raising a child with special needs. If I could write myself a letter, I’d say;

Not only will you handle it, you will find your voice, and your passion in it.

 

I worried that she wouldn’t be the little sister I had imagined for our older daughter, Kaylee Dee.

They will have a stronger bond than you ever imagined. They will be the perfect combination of silly and sweet. They will encourage each other and make each other more compassionate.

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I worried about my marriage.

It will be hard, but you will get through it and come out stronger in the end. You will see your husband become her biggest advocate.

 

I worried that she wouldn’t look like us, and that people would stare.

Let them stare. But not because she looks different. Because she has an infectious smile, and lights up a room.

 

In those days following our diagnosis I worried and wondered about our future. About our ability to parent this sweet girl; about whether or not we even wanted to parent this little girl that was growing inside me. If I could have said one final thing to myself in those days it would be:

Keep your heart open, and your dreams big. There is nothing that Everly won’t be able to do without your help.

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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.

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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. 

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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.

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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.

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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.

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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!!

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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.

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I’m not sure about this.

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Proper eating posture.

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

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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.

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   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.

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  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.  

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