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Atchison Family

Est. 2011

Atchison Family Update – Spring 2023 Edition

Hi friends! I realized today that I haven’t given y’all a very good Atchison family update recently. It’s mainly because we’ve been so good and so busy.

We celebrated Maddie’s first communion last week. I have no words. It’s been amazing watching her grow spiritually. We’re so incredibly proud of her. She leads her sisters with a confidence I wish I’d had at her age. It’s so cool to watch. Her new favorite thing to do is play pickle ball. I have no doubt she’ll master it, just like she mastered her pogo stick, rollerblading and riding her bike.

Eleanor is on the cusp of reading. She knows all of her sight words and can even spell them. She makes it all look effortless. It’s also very important to her to practice. She reminds us that she needs to do her homework. So precious. And as much as I’d love to tell you that I taught Eleanor how to ride her bike, but she basically taught herself. No more training wheels for this girl. Both Maddie and Eleanor will start soccer in March.

Miss. Ro is just growing and crushing milestones. We recently saw endocrine as a routine check up from her labs last year and her blood work looked good so they’ll just follow her yearly. Which is great news! We walked in and the doctor said, “Well Ro is just THRIVING!” And she is! We know there might be other medical things that pop up in the future, but to a certain extent that could happen with any kid. We have been very fortunate to set her up well for success and she is doing SO good! We’re still working on crawling, but she scoots all over the house, so she’s already mobile. Eleanor says she’s curious, I say she’s nosey. And either way it’s a great trait to have. 🙂

At her last cardiology visit in December we got some good news that her left AV valve stenosis is holding steady at moderate. There is a chance that as she grows she might never need another surgery. And we can go five months between appointments – the longest we’ve ever gone. We also might wean her off some of her meds starting then. At pulmonology we were told that her lung pressures look so good, it’s reasonable to think she might grow out of her pulmonary hypertension. But of all the great news we’ve received, the most exciting news here recently is that we aren’t using the g-button to feed her anymore! It’s incredible to type that and realize all the hours that have gone into getting here. She’s still drinking from a bottle, but she’s also eating solids and working on drinking from a straw and sippy cup. She has also gotten about 10 teeth in 8 weeks, which as been rough but has definitely helped with her being able to eat more solids. We’re so proud of all of her hard work.

 

 

 

Bad Pants Open

Happy fall friends! We’ve been busy chasing our three girls around. Ro has been busy with appointments and therapies, Eleanor and Maddie started 4K second grade respectively. Maddie and Eleanor have taken up golf and Maddie is also playing soccer, so our weeks are busy and the weekends are even busier. All this to say – sorry I haven’t updated in a while, but, well, we’re busy.

Yesterday is a day that I won’t soon forget. It’s hard to put in to words what it means to me to be able to give back to the organization that gave Ro a stellar chance at life. I’ve mentioned before that we were selected as this year’s patient family for the Bad Pants Open – a golf tournament that raises money for Texas Children’s Newborn Center. Ro’s picture and story were on every tee box; they asked me to speak – and I didn’t cry y’all (!!!); and Jared played golf with some good friends who have rallied behind us through the last year and a half. All to raise money for a cause that is near and dear to my heart.
So, because it’s been requested, here’s my speech:

“It’s the honor of a lifetime to be on this stage before you. Thank you to all of you here who make the level four NICU at Texas Children’s Hospital what it is. It’s because of that NICU and generous donors like all of you, that our Ro is here today.

This is Aurora. We call her Ro. She’ll be 14 months old in a few days.

Ro is the youngest of our three children. Our perfect little caboose. But it didn’t always look like she’d join us. When I was 13 weeks pregnant, we learned there was a high probability that she would have Down syndrome. At 16 weeks we were sent to Texas Children’s for genetic counseling and to meet with a Maternal Fetal Medicine doctor. Her prognosis was bleak, to put it mildly. They found several complications – the most significant being a congenital heart defect – an atrioventricular septal defect. She also had a build up of fluid on the trunk of her body – the beginnings of hydrops fetalis, which is often fatal. We were told she wouldn’t survive my pregnancy.

For several months I went in weekly to make sure her heart was still beating. And then like magic, the fluid disappeared. And then it returned. At one point our MFM walked in and told me, “this is the strangest pregnancy.” And we all looked at each other and laughed because it was true. 

By the end of it, we weren’t sure if we’d have a baby to bring home. Or if we might meet her and then say goodbye to her shortly thereafter.

We knew if we were lucky, she’d spend time in the NICU to keep an eye on her heart. An AVSD is not something that presents itself immediately. Especially for kids like Ro who have Down syndrome, it can take a little while to become a problem. My OB in Victoria advised me that Ro’s chances of survival were greater if she was born at TCH – instead of having to be transferred. It’s one of the best decisions we’ve ever made.

Ro was born at 38 weeks and 2 days. She was the biggest baby on the block at 7 pounds 15 ounces. She’s very on brand this one – instead of the controlled assent of an induction, she came quickly and in her own time. She was blue when they placed her on my chest, but I will never forget how calm my providers were. The NICU team was in the room and I cannot imagine a more compassionate, caring group of individuals to hand my baby over to.

The important part of Ro’s story for today’s discussion begins with her time in the NICU. We were there from August 23 to October 19. Jared and I were able to be there every day with her. We traded out every three days or so. And every single day was better because of two reasons – one: we had our Ro. And two: we were at the best place in the world for her. 

If you’ve ever had a child in the NICU, you know that it can be a very lonely place. Last year was my first and only experience and I can tell you right now that while it was lonely, and while I wanted to be home, it was made better every minute by the fine staff at TCH. They turned a place that should have felt cold and sterile into a warm and friendly environment. I can tell you our nurse’s name when we arrived – Val – and the one we had when we were discharged – Kelly. And I can tell you about the ones in between, and even the ones who made such a great impact and didn’t even ever have Ro as a patient.

I can also tell you about the great providers we had, Dr. Osbourne who began service the day Ro was born and Dr. Gowda – who are both experts in their field and took excellent care of Ro. And also our wonderful neonatal nurse practitioners. Each one of them made sure all of my relevant and not so relevant questions were answered. I’m convinced they are all guardian angels walking around on earth.

On the fifth day of Ro’s life, she developed a fever which resulted in her needing a spinal tap to ensure the infection hadn’t traveled to her spinal fluid. I’ve never seen a medical team respond so quickly – it was like watching a SWAT team assemble. At the time of her spinal tap I was with our big girls and Jared doesn’t do well with needles, so Val was right there with her the whole time. I was sick to my stomach with worry waiting for the panel results to come back. I’ll never forget Jared telling me, “If Dr. Osbourne isn’t worried, we shouldn’t be.” That’s how much faith we had in these wonderful doctors.

Many of the critical and important decisions we had to make were shaped by these TCH staff members. Because Ro’s heart was overcirculating her blood, she was worn out all the time. Meaning she was also too tired to eat. The time came where it looked like she would benefit from having a gastrostomy button. We were able to advocate better for her because of the knowledge we’d gained.

We were discharged a week after her g-button was placed. Daily rounds had become social hour, and by the time we left I knew these people had nestled their way into my heart. We were so happy to go home, but it was also really hard to leave our new family. Some of them even came over to Legacy Tower to visit us when she was recovering from heart surgery. Our time and experience at TCH gave Ro the best foundation and start at life. And for that we will forever be grateful. It is not lost on me that in two days we will celebrate one year of Ro coming home and I can imagine no better way to celebrate than with you all.

Thank you so much for supporting this wonderful cause. It’s because of donors like you that kids like Ro get a chance to live a full life.”

One Year with Ro

In two days, Ro will be one. It’s really hard to fathom all that has transpired in one year. Sure there’s the medical stuff. Y’all know that, though. What I haven’t explicitly told y’all about is how much we’ve all grown. It’s been rapid, leaving lots of metaphorical stretch marks. Some days, I don’t recognize the people we’ve all become because of sweet Ro. Some days, it seems like we’ve always been these people. We’re all better because of her. And I’ve heard it from y’all too – she’s changed us all, she’s made us better believers, she’s brought many of you (and me too) closer to your faith.

So on the eve eve of her birthday I thought I’d share you a letter I wrote to her on the day we found out our future was different than the one we had imagined. This is raw and as much as the writer in me wants to finagle words to make this better, it is untouched. I had no idea how true these words were.

“Dear baby,

You are so loved sweet girl. Your life will be celebrated. This wasn’t the way we had imagined learning more about you. And we’re working through our emotions the best we can. It seems you’re a surprise all around – our Christmas baby.

I wanted you to be like me – the final chapter to a beautiful story. I wanted a full life for you. I wanted grandbabies and big Christmases. But those are a mother’s hope and dreams. And I’ve learned that my children are excellent at exceeding what I have in mind for them. My hopes and dreams are limiting. And my sweet girl, you will do grand things, in your own way. They will be big and beautiful and glorious. And I can’t wait to see them. And meet you. I love you already.”

I also wanted to share something really cool. Each year the Texas Childrens Hospital hosts the Bad Pants Open – a golf tournament that raises money for the Level IV NICU where Ro spent the first two months of her life. Each year they select a patient family and tell their story as part of the tournament. This year they selected Ro. When I got the phone call in the spring I just about lost it. It is one of my greatest honors in life to be able to witness Ro’s story unfold. It’s so cool that others will hear about her too. Give it a read. I promise you it’s worth it.

https://waystogive.texaschildrens.org/events/bad-pants-open/patient-family-story.html

Good News — An Update on Our Ro Bug

Hi friends!

 
We just had a handful of appointments with Ro at Texas Childrens this week, so I figured it was time for an update on our girl.
 
First off, Ro is doing really well! We saw a bunch of our NICU friends while we were in Houston and they went crazy at how good she looks. She’s sitting up unassisted (which her pulmonologist went bananas over) and she’s recently learned how to blow raspberries, which is both adorable and messy when she does it at feeding times.
 
She had a swallow function study done. The purpose was to ensure she isn’t aspirating food into her lungs when she eats. And she’s not, which is great news! We got the go-ahead to continue giving Ro solids and hopefully move toward a g-tube wean. This process will be slow and gradual. This baby is very smart and definitely prefers to eat the easy way. I’ve been telling her about pizza and cake, with the hope of motivating her. 😁 That first birthday is right around the corner.
 
Her pulmonary pressures have improved again, which is also great news! Her pulmonologist said she will be OK to travel in the fall, and we can even fly! Currently she gets her PH medicine 4 times a day, but once she turns a year, we’ll go down to 3 times a day. Amazing news for this Mama. I won’t miss waking up at 3 AM.
 
This all bring us to her heart. Her echo was a week before her appointments this week, so I’ve been sitting on the report but no actual news until yesterday😳😬. As I suspected, things are stable, which is great news. And about the best we can hope for, short of a miracle (which I’m not discounting just yet either). Her right heart looks great (which is also another reason her pulmonary pressures have improved). Her left heart (the AV valve specifically) has mild-moderate regurgitation and mild stenosis. Apparently stenosis and pulmonary hypertension don’t play well together, but only time will tell what her course of treatment will look like. They won’t touch her again if they can avoid it. So we need her to grow and develop, just like she’s doing. We pulled her totally off lasix, which is both SO exciting and a little terrifying. She’s been on lasix since she was 2 weeks old, so it’s awesome thinking she is well enough that she doesn’t need it.
 
While I’ve never traveled with a celebrity, going anywhere with Ro is the closest thing I have to compare it to. Everyone loves her – the nurses in cardiology were fighting over who is her best friend. In pulmonology, they stopped into her appointment just to get a gilmse of how much she’s grown. We had a crowd outside the NICU when we stopped by to say hi. She radiates this light and y’all I swear sometimes it seems like she’s looking just past my shoulder at something that I can’t see. In those moments I imagine she’s talking to God. Maybe telling Him she’s still good down here. It’s hard to put into words, what it means to be her mom. She has touched so many people in her short life and I’m so glad we get to share her with y’all.
 
Thank you for your sweet text messages and prayers. It’s always amazing to receive words of encouragement while I’m in the waiting room. And the prayers are like a warm blanket that comforts me when I need them most. Stay tuned for updates on Ro shirts. Y’all are amazing. 💛💙

Ro 9 Month Update

Hey Ro fans!
 
It occurred to me today that I’m way overdue in getting y’all an update on how our girl is doing. Ro is almost 9 months (which is insane) and doing so well. Next week will make 4 months post op.
 
The good news – Ro is growing and developing. Her phenomenal pulmonologist continues to remind me that these are her only two jobs. She’s rolling all over the place – she likes to roll to her belly and do superman tabata intervals – and she’s starting to sit up by herself. Her big sisters are her favorite and she also LOVES the dogs. She pulls Moose and Buck’s long hair (which they totally deserve). We started her on solids a couple months back and her progress is slow, but steady. She is also doing good with nursing, but we still use the G-tube. Her pulmonologist has assured me this is all a typical progression and that weaning from the tube takes time. Overall our littlest Atchison is doing really well. I’m constantly amazed at how far she’s come.
 
Ro’s last echo was not great. It showed decreased function of her left AV valve. She’s got more leakage and some narrowing of the valve, both which could indicate she needs an additional surgery sooner than we expected. But her cardiologist also told me that she might be getting sick (our hearts work harder when our bodies are preparing to fight illness), and sure enough Ro got sick the next week. My first ever trip to the ER with a kid in the middle of the night. Just when I thought I was getting the hang of this parenting thing 😆. We’re hoping that her next echo (on May 31) shows her heart function back to a more “normal-Ro” level. I’ll continue to keep y’all updated.
 
Maddie and Eleanor will be out of school next week. I’m so excited to have them home with us. They are proving to be really excellent physical therapists and Ro is always happy to work on her tricks with them. I knew they would love Ro, but I had no clue they’d also be such wonderful advocates for their baby sister. I’m convinced that extra chromosome works magic, y’all.
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