DOWN SYNDROME AWARENESS MONTH // g-tube feeding

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Sometimes babies who are born with Down syndrome have difficulty eating, for a variety of reasons. Lindie has a few things that cause her to have trouble eating: her heart defect (ASD), GI issues (duodenal atresia at birth) and hypotonia. She had a g-tube placed on April 4th and we've used it everyday since then. At first it was scary and overwhelming to even think about her having a g-tube. Now we're so thankful for it! Because of it Lindie is a happy and healthy (chunky) baby girl. It's (hopefully) not a forever thing, but we'll probably have it for a while. At least until she has enough energy to eat fully on her own.

Today on my Instastory I shared what it looks like to feed Lindie- everything from pumping to bottle feeding to g-tubing. If you missed it there, you can watch it here too!

DOWN SYNDROME AWARENESS MONTH // heart defects

Forty to sixty percent of babies born who have Down syndrome are born with at least one heart defect. Lindie had two at birth. (How both of these were missed in my anatomy still amazes me). Lindie was born with a small Patent ductus arteriosis (PDA) and a large Atrial septal defect (ASD). Although both were discovered very early (she had an echocardiogram at three days old), both were not super alarming to her doctors.

We followed up both of the heart defects on June 13th (our 8th anniversary) and found out that Lindie's PDA had closed and her ASD went from large to medium in size. We will return in December for another follow up. Our prayer is that it will close on its own by December 13.

Heart defects can cause a variety of other problems. One of the biggest issues we *think* is caused in part by her heart defect is her struggles with feeding. Since the day Lindie was born she struggled to eat. At first it was mostly due to duodenal atresia, an obstruction of the duodenum that about 5-7% of babies with Down syndrome have. (How this was missed on my anatomy scan still amazes me). But even after her surgery to correct this, she still struggles to eat seven months later.

Thankfully we have a g-tube. The g-tube allows us to feed her breastmilk at home even when she is too tired to eat on her own. Part of me wishes Lindie was a candidate for heart surgery so we could just get her heart repaired in hopes that her eating would improve, but part of me is thankful for the time to *hopefully* allow her body to heal her heart defect on its own.

Either way, we'll know more in December. One thing I have learned is that although heart defects can be scary and they are very important to monitor or fix, they are very common among our kiddos and because of that surgeries to repair them are somewhat routine. This gives me a lot of confidence if Lindie does have to eventually have heart surgery.

Tomorrow I am planning to share more about Lindie's eating process on my Instastory: pumping, bottle feeding and g-tubing, our schedule, how we know how much to give her, what a g-tube even looks like- all of that good stuff! You can follow me throughout the day sharing videos over on IG or you can follow here once I post my Instastory here. 

DOWN SYNDROME AWARENESS MONTH // books


One of the greatest resources in processing through Lindie's diagnosis and educating ourselves has been in reading books.

I love to read. I love a good story. So naturally, stories and informational books have been so helpful. Below is a list of books I have read so far, although there are so many more I would like to read.

I will say that shortly after Lindie was released from the NICU I went to our local library and tried to find books relating to Down syndrome and the only books I could find were specifically targeted to certain therapy practices and they were geared more toward older children. I was pretty disappointed in that, because I am a big fan of my library.

That being said, here are some book recommendations:
  • Babies with Down syndrome: A New Parent's Guide by Susan J. Skallerup: If you're looking for an informative book, this is definitely the one for you. Packed with information this book is helpful if you're ready to dive in. If you're still not quite there yet it could be a bit overwhelming, especially in the medical chapter. (I just skipped that until I was ready). Be sure to get the latest copy of this because so much research is new in the field of Down syndrome, so older copies are out of date.
  • The Parent's Guide to Down Syndrome by Jen Jacob and Mardra Sikora: I read this book on my way to the DSDN Rockin' Moms Conference in September partially because I wanted to learn more but also partially because I was fanning over Jen (founder/spokesperson for DSDN) and Mardra (who I met at the conference). I learned more in reading it at it wasn't quite as overwhelming as the first book above because it didn't have quite as much medical information.
  • Bloom by Kelle Hampton: This was the first story I read after Lindie was born. I finished it while she was still in the NICU. It was such a raw and relateable book for me. I felt encouraged by Kelle's words and it's full of lots of great pictures. 
  • A Good and Perfect Gift by Amy Julia Becker: This was the second story-themed book I read also while Lindie was still in the NICU. It was relateable, like Kelle's, and written from more of a biblical and journaling perspective. Such a good read!
  • The Lucky Few by Heather Avis: So good! This is the story of The Lucky Few Crew, a husband and wife duo who adopted three children, two who have Down syndrome and their journey along the way.
  • An Uncomplicated Life by Paul Daugherty: This is my current read. Life is crazy busy right now so reading takes a back-burner on my priority list, but it's really good. I also love that it is written from a father's perspective because all of the other books I have read are written by a female.
What are your favorite books? What other recommendations do you have? I know there are other great ones out there. I would love to put them on my Christmas list. Please share!

DOWN SYNDROME AWARENESS MONTH // buddy walk

This weekend was seriously amazing. 

We participated in our first ever Buddy Walk with the Down Syndrome Association of Tulsa. I remember when I first heard about the Buddy Walk. It was back when little Lindie was still in the NICU at Saint Francis Children's. Those were dark days. It was shared with me as encouragement, so I held onto it as a symbol of hope- a happier season of sorts. Looking back, I think this is why I put so much effort into making the Buddy Walk weekend an over-the-top exciting time with our family. And, thankfully, they all followed suite and made it an all out party. 

Eliza and I decorated with green (fern), yellow and blue (Down syndrome awareness colors). We ordered the cutest donuts from Livi Lee's and had a crap ton of Starbucks coffee. Our family piled into our home all morning and caravanned to ORU's campus where we met other friends and family. We all matched in our Fern & Friends shirts and were probably the "annoyingly large and overly excited to be there" group. (I've always been one to dive head-first into something I'm passionate about, so dive we did). We proudly made our lap around ORU's campus and cheered while Lindie and the other kiddos got their Buddy Walk medals. 

It was Lindie's day and we wanted to celebrate her well. Even if she's only 7 months old and spent most of the time napping. We had a blast!

Thank you for everyone who participated with us yesterday and for those of you who purchased a shirt in support of #teamfernandfriends!

  Until next year!
xoxo

DOWN SYNDROME AWARENESS MONTH // little light house

On Saturday we attended our first ever mini-laps at The Little Light House. LLH is a school in Tulsa for children ages 0-6 with disabilities. It is a tuition-free for students that provides early intervention geared therapy and education. Parents fundraise each year to help provide the money necessary to keep it tuition-free. Lindie has been on the wait list since she was 3 days old. We are hopeful that she will get in when she is around 2 years old. 

We are excited for the years to come when we get to watch Lindie participate at mini-laps! Because it was the same weekend at the Buddy Walk, we invited our parents to join us in checking it out. We, of course, all wore our Littlest Warrior apparel!

Little Light House is always accepting donations, so if you feel inclined go check out their website and donate!

DOWN SYNDROME AWARENESS MONTH // specialists

First of all-- I hesitate sharing this post. I don't want to paint a negative picture of Down syndrome. However, there were two reasons why I have decided to go ahead and share it. 

One, it's real. Ever since the beginning of my blog my goal has been to be real, with joy. This is our real, joyful life. 

Second, I want to honor Lindie. For every milestone Eliza has reached and will reach, Lindie's body has to work even harder to reach the same milestones. A lot of it has to do with low muscle tone (hypotonia, a characteristic of people with Down syndrome). Some of it has to do with various health conditions, like her heart defect I'll mention below. Lindie kicks butt! I am so proud of her. She inspires me all the time. So, I want to honor her in sharing how resilient she is with all the stuff she goes through.

That being said, here goes:
Sometimes babies with Down syndrome are born perfectly healthy with no major health conditions (praise God)! Some babies with Down syndrome are born with health conditions that cause them to have a lot more doctors and therapists than a "typical" baby. Lindie is definitely one of those babes!

Today I want to share about all of Lindie's specialists, why we see them and how often we see them. One thing we have been told is that as Lindie gets older she will see her specialists less and less. (Can I get an amen to that)!?

Lindie has a
  • Pediatrician: When Lindie first came home from the NICU, we used to see our pediatrician more often than a "typical" babe. Now we just see her for our regular well-checks and the occasional office, usually relating to her g-tube. (Praise God Lindie hasn't been sick yet, so we haven't had to see her for anything sickness related)! I will also add that when we found out Lindie had Down syndrome we switched doctors. We liked our previous doctor, but we switched to someone who was closer to the house and who seemed to have more experience working with kiddos with Ds.
  • Cardiologist: Lindie was born with two heart defects. A small Patent ductus arteriosis (PDA) which has since resolved on it's own and a large Atrial septal defect (ASD) which has gone from large (8.5 mm) to medium (5 mm). We see her every 6 months to monitor the ASD.
  • Ear, Nose and Throat Specialist: Oftentimes babies with Down syndrome have smaller ear and nose canals. Lindie has had fluid build-up in her ears for a while now and failed her 6 month hearing test.  (She passed her newborn screening when leaving the NICU and she responds to sound, so we know she can hear). We may be getting tubes in November, so we hang out with our ENT every so often. We go back in November to follow-up with that.
  • Developmental Specialist: We don't see our Developmental Specialist often but she looks to see what Lindie is doing and not doing and rates her compared to "typical" babies at her age. We went in June and we go back in March.
  • GI Surgeon: Her surgeon is the one who did both of her surgeries in the NICU. Like our pediatrician, we saw him pretty often early on because of her G-tube. There were so many complications we had with it, like granular tissue and infected stitches, that they saw us a lot in the beginning. Now we just go back every 6 months to check on her G-tube. We go back at the end of this month for a follow-up.
  • Ophthalmologist: We see an eye doctor because Lindie has Nystagmus. Nothing too concerning, but we will go back every 6 months for check-ups.
  • Physical Therapist: We have our PT through the state with a program called SoonerStart. She comes to our house every other week and works with Lindie on her physical milestones. Right now we're working on things like tummy time, sitting supported and weight-bearing on her feet.
  • Speech Pathologist (2): Our SP is also through SoonerStart. She also comes to our house every other week and works on things related to feeding and communication. Right now she's targeting communication. We also are starting (TODAY) oral therapy (feeding therapy) at the Children's hospital. She will focus on Lindie's eating issues. We will meet weekly with her through March and re-evaluate from there.
  • Dietitian: Lindie doesn't eat like a typical baby. If it were up to her she would only eat about 6 ounces of breastmilk a day, when her body needs around 31 ounces a day. We meet with a dietitian every few months to track Lindie's progress and see how she's doing calorie-wise, that way I know if I am giving her the correct amount of milk in a day and so forth. So far, so good.
  • Orthotics Specialist (I'm not even really sure if that's what you call it but that's what I call her): This is our helmet lady. We see her every two weeks. She measures Lindie's head and makes adjustments on the helmet and tells us how much longer we may have the blessed thing. She's great!
  • Vision Specialist: Just this week we met with a vision specialist with SoonerStart. She just double checked Lindie's eyes and already thinks her Nystagmus is going away. We'll see her again in 6 months.
I think that's it!

Right now we are guaranteed at least 2 appointments a week between SoonerStart therapy and Oral Therapy. Some weeks we have had up to 6 appointments. (Those are the weeks I am needing a mommy break- AKA: beer me!- by Wednesday night).

I can't wait until this list is waaaaaaaay shorter. Until then, pray for us! (Seriously)!

EDITED TO ADD: Praise Jesus for MEDICAID! Right now Medicaid is saving us HUNDREDS (if not more) each month in co-pays. We didn't have Medicaid for the girls until Lindie, but now we are so thankful for it and would be in so much debt without it!

DOWN SYNDROME AWARENESS MONTH // baby nation


A few weeks ago Chris and I had the pleasure of being interviewed by Ivan and Samantha with Baby Nation., so today you need to head over there to listen to Lindie's story via podcast. Baby nation is a podcast series that shares the stories of parents caring for a child with a medical diagnosis. Right now they have stories of eight different amazing, brave and beautiful children (including little Lindie Fern). Go check them out!
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