Baby Girl Peters

We are so grateful for Tiny Hero: Real Hope for CDH and the community they have created

April 19th is CDH awareness day, so to bring more awareness to CDH and celebrate our tiny hero I’m making this post with some facts and photos.

We found out something was wrong at 18 weeks gestation during our anatomy scan. Aurora was officially diagnosed with CDH around 20 weeks. Sometimes CDH is found earlier, sometimes later, and occasionally it’s not discovered until birth.

No matter when the diagnosis comes finding the right care matters. The truth is that there are just not enough doctors in the world who are equipped and capable of handling these severely sick babies.

No matter how prepared you think you are going in to giving birth to these little miracles nothing can truly prepare you for having your newborn instantly taken from you in order to save their life. Nothing can prepare you for seeing your newborn be on life support immediately after birth, and in our case nothing could have prepared us for seeing Aurora on ECMO at only a few hours old.

CDH is not just a hernia. Many people hear the word hernia and think of an umbilical hernia or something that once repaired is no longer an issue, but CDH affects the lungs and heart and other vital organs which make it very life threatening. Once the diaphragmatic hernia is repaired children will still always have under developed lungs, they will need oxygen support, many times they struggle with different feeding problems and reflux, the fear of pulmonary hypertension, and countless other medical things.

CDH is life long specialists and little lungs. CDH is fighting to keep up with peers in developmental milestones.
CDH is oxygen support and feeding tubes. CDH is not “just” a hernia.
CDH is our tiny hero Aurora Pearl.

Last year on this day Aurora was in the hospital. We were living day by day and not knowing what the future would bring. This year we are home and Aurora isn’t just surviving CDH she is truly thriving. We still don’t know exactly what the future holds, but we do know that she is one strong little girl who continues to defy the odds and bring hope to newly diagnosed families.

Aurora’s story was shared by Honeysuckle Hope as part of their “share your rare” and how fitting as we celebrate our Tiny Hero: Real Hope for CDH for CDH awareness month

We are so grateful every day for our CDH team and especially Dr. Kays for saving Aurora’s life.
Too many people believe CDH is “just a hernia” and too many doctors don’t know how to save these babies. Aurora was only given a 30% chance of living. Before we met with Dr. Kays we didn’t have any hope of ever bringing our baby home from the hospital, but now she’s almost 8 months old and doing so amazing.
There is hope, but research is important and raising awareness is too. More babies deserve to survive CDH.

Aurora had the best 1st Halloween! 🎃

Here’s a little update about our latest visit to St. Petersburg.
https://www.caringbridge.org/visit/babygirlpeters/journal/view/id/6545104c33a8242376f3138b

107 days in (the hospital) and 107 days out (of the hospital)

Today Aurora Pearl also turned 7 months old!

https://www.caringbridge.org/visit/babygirlpeters/journal/view/id/65298513b08088272370cf08

Today makes 3 months being home with the most perfect addition to our family. She’s sassy, sweet, and oh so busy.
We love our sweet Aurora Pearl beyond measure and we are so grateful for how well she’s been doing since getting home!

FINAL CALL to order shirts supporting Miss Aurora Pearl. This sweet girl is doing big things and continues to make huge improvements. We are so very grateful for everyone’s support, and we love seeing everyone repping Aurora’s shirts. Proceeds help as we continue to navigate having a medically complex baby.

https://www.bonfire.com/peters-strong-cdh-awareness/

https://www.bonfire.com/aurora-strong-2/

Aurora is 6 months old!!! 🩷
Half of a year with the strongest little girl I know and look ma! No cannulas!

https://www.caringbridge.org/visit/babygirlpeters/journal/view/id/650475d2ccee88606d54931c

We’ve officially been home for 2 months! It feels like time is truly flying by now that we’re home.
Aurora girl is still the biggest diva, she has her daily routine, loves her puppy and big brother beyond measure and continues to bring so much joy to our lives.
Next week we go back for our clinic follow up with Dr. Kays and it’s going to be very bitter sweet being back at JHACH.

Aurora Pearl turned 5 months old yesterday!! We love this sweet girl and can’t believe how much she’s grown and continues to thrive since being home.
Aurora love:
- talking (very loudly) all the time
- giving out lots of smiles
- her big brother
- her toy firefly (we don’t leave home without it)

We’ve been home for 1 month (tomorrow)!!!

https://www.caringbridge.org/visit/babygirlpeters/journal/view/id/64d046b682357a2a6e61cae1

I know we’ve gone a little MIA from the page and our updates since getting home, but we will get an official update up tomorrow as we are approaching 1 whole month of being home!
In the meantime please enjoy this smiley little girl who is growing oh so fast!

Aurora is 4 months old!! 🩷
We celebrated 4 months with our little princess at home on Thursday as well as being home for a week and while it’s been crazy busy and quite the adjustment we are finding our new normal here at home. It’s the best feeling having all of us under one roof as a family of four.

We are home!!
We got home Friday evening and even tho it’s been an overwhelming adjustment we are so grateful to finally be home together as a family of 4!
Many people have asked what we still need as we settle into home, so I’m attaching our Amazon baby registry. There is absolutely no obligation, but some of the things on our wishlist were just not top priority until we got home and knew for certain Aurora was home too.

https://www.amazon.com/baby-reg/chelsea-peters-june-2023-oviedo/1KA27O40SMKOB

One week of being out of the hospital and with mom and dad 24/7 has Aurora hiding from us to get some alone time 😂

Happy 4th of July everyone!! ❤️🤍💙

If you’ve purchased one or both of Aurora’s shirts we would love to see you in them! Please share here or tag our page in your post!

We cannot thank you all enough for your continuous love, support, prayers, and donations 🩷

PS. Shirts are available to be ordered and the links are in our pinned posts at the top of the page.

We are so amazed by this little girls strength and of course so in love with her. Miss Aurora has been through more than anyone should ever have to, but she’s made the best of it and never stopped fighting to be here. 💪🏻

From day 1 to day 107 I can’t believe how far she’s come! 🩷

It’s been a long crazy day, but we are officially discharged!
We are finally spending the night with our baby girl outside of the hospital!!

It’s official! We got the news this morning that Aurora will be discharging tomorrow!! 🎉

We will stay in St. Petersburg at RMH for another week and officially head home after her discharge appointment on July 6th!

Aurora went in for surgery at about 10:45am and got out at about 12:30pm. They ended up being able to balloon the SVC and didn’t have to place a stent. This will be monitored yearly by Dr. Kays and the team during follow up visits.

There is finally a light at the end of this very long, dark tunnel we’ve been in for 3 months!
Please send Prayers for a safe and successful surgery tomorrow!

https://www.caringbridge.org/visit/babygirlpeters/journal/view/id/6498ece92a3bdf0ab6994d16

Hey everyone! I wanted to share this again now that Aurora is 3 months old and we are still in the hospital.
I know our updates are fewer and farther apart because there are less and less big updates as we get closer to being able to come home, but that also means medical bills and other things we need for a medically complex child at home are all going to be adding up and coming due.
While we continue to be so very grateful for all of the thoughts, prayers, and continued support we are also so very appreciative of any and all monetary donations.
Even if you do not have the means to spare we appreciate the shares and interactions as well.
XOXO,
The Peters Family

Aurora’s CDH Journey, organized by Kelsey Peters Hello everyone! The families of Dylan and Chelsea Peters wanted to set something up to make them… Kelsey Peters needs your support for Aurora’s CDH Journey

Aurora Pearl turned 3 months old yesterday!!
She is the happiest little girl who loves to smile and talk to everyone.
In 3 months she’s been through intubation, ECMO, 2 surgeries, cpap, low flow oxygen, and eating issues, but none of it stops her from being so happy and growing like a w**d.
You are so loved baby girl! 🩷

Aurora continues to be the happiest little girl through everything. Check out her latest update about what she’s been up to since her surgery 2 weeks ago.

https://www.caringbridge.org/visit/babygirlpeters/journal/view/id/648672aa953f355fe4b2a1df

Baby girl is feeling much better post surgery and is back to her smiley, talkative self.
She started feedings again yesterday afternoon and got her first gtube feed last night.
We are so proud of how strong and resilient she continues to be on this Tiny Hero: Real Hope for CDH Journey

Aurora is feeling about how you’d expect after surgery. She woke up and was in pain, so we got her some more meds. Goal is to keep her as comfortable as possible and hoping she continues to sleep. We will update if anything changes, but she is stable and doing well.

Thank you all for the love and Prayers. Aurora is out of surgery and back in her room. She hasn’t fully woken up yet, but Dr. Kays came and spoke with us. He said everything went well and we will keep her comfortable while she heals, but he did say that most kids tend to heal and feel better pretty quickly. 🤞🏻 She will probably start feeding on Monday and we will learn our new normal then. Until then we probably won’t get many snuggles while she rests, heals, and keeps up on meds to stay comfortable.