The Rivera Family

Scroll down to see updates as the Rivera family progresses in their CDH Journey! (All updates are written and given by parents with consent)

We found out we were pregnant a mere 4 weeks into our pregnancy - we were over the moon! This was our second pregnancy, our first sadly ending in a miscarriage. 

At our NIPT testing, there was a potential abnormal finding that led our OBGYN in San Antonio to refer us to a specialist. At our specialist appointment (on week 16), they cleared us of any abnormalities but wanted to do a “just in case” follow up on week 20. On week 20, we got the shock of all shocks - they had found that baby Quinn had a right sided diaphragmatic hernia that looked pretty severe. We were told that right sided CDH cases are rare and not usually operated on and she would likely not make it past birth. However; our specialist mentioned he had a collegue in Houston who he went to school with that he could reach out to just in case. We were devastated - we already loved her so much and were not expecting anything other than a “cleared” status. We had never heard of CDH or even thought about specialists - we were so grateful that he’d call someone on our behalf but we wanted to get some answers as soon as possible. We drove home, cried for 20 minutes at home and then got to work.  

We did some research on Google on specialists dealing with CDH and found the wonderful team at Memorial Hermann in Houston. Within a matter of hours, our specialist had called them and sent our details, they had accepted our case and had scheduled us to come in on the next day. They informed us more of what CDH was and told us it wasn’t a death sentence - that we were going to go through this journey together. 

At our first scan with the Memorial Hermann team, they discovered Quinn had 46% lung capacity. We were asked to return the next week for our MRI and additional scans. The next week, they discovered her lung capacity was closer to 57%, which gave them a lot more comfort and us a lot more peace. We were not out of the woods by any means but it allowed the team of doctors to prepare better for what we’d be facing. We met the rest of the team we would be working with through birth and after - and were reassured we’re in the best place for Quinn’s care. Dr. Harting’s team also gave us Eden’s story and suggested we reach out to get information and ask for help since they work families like ours. 

On 12/28/23, less than 3 weeks from our initial diagnosis, we left our 3 cats behind and relocated to Houston with our dog. We’ll be staying here until Quinn is discharged from the NICU and we can all go home together. Although it’s been challenging for us and our family, we are so blessed that this was caught when it was, that we found the team at Memorial Hermann and that they were able to bring us some peace of mind so quickly.  With the help of the Eden Calhoun fund, we’ll be able to pay for numerous expenses including hospital bills, meals, a place for us to live and for our home in San Antonio for us to return to. A huge weight has been lifted off our shoulders in our journey and we hope to be back home as soon as possible.  We know our daughter is a fighter and we’re taking every step to give her all the tools she needs to make it through this quickly and successfully.

Update 1/31/24

This last month has been all about settling in and adjusting to our new home base! We were able to see baby Quinn in 3D with our doctor for the first time and also discovered that she has a head full of hair (which would explain the strong heartburn :)).  There had been some concerns of a possible heart condition that the medical team was able to clear up this month, they don't think there is anything in addition to the CDH.  Our baby shower is this weekend but mom can't be more than 30 minutes away from the hospital so dad will be in attendance and mom will make a Zoom appearance! Definitely not what we always pictured but this is what is best for Quinn in the long run.  We're so grateful for the Eden Calhoun Fund for helping us in our relocation and in easing the stress of the financial demands of this tough diagnosis.

Update 2/21/24

Baby Quinn’s due date has been moved up to March 4th, so we are just less than 2 weeks away from meeting her! We are so excited to meet her and see who she looks like, hold her tiny hands, and get this next phase of our journey started! 

This month, our friend Meghan drove from San Antonio to do our maternity shoot so we could capture the growing bump in our new city.  We’ve spent lots of time this month getting our dog, Cheddar, ready to be a big brother and showing him around the city - we’ve visited a ton of parks and gotten to know all the houses in our new neighborhood!

Update 3/2/24

We actually came in for our doctors appointment today and my blood pressure was high so Quinn was actually born a few hours ago. So far she is stable, we’ll wait and see!

Update 3/23/24

Quinn Isabelle joined us, early, on March 1st at 9:28 pm. She had a very calm and peaceful first 24 hours but needed to be put on ECMO almost exactly 24 hours later. The team had discussed the possibility of ECMO with us, but nothing prepares you for having to see your child in that sensitive of a situation. What we realized very quickly is that Quinn is the strongest and toughest person we’ve ever met. Her repair surgery was done 2 days later and doctors found that her defect was smaller than expected and her lung larger than expected. Just 3 days after that, on her mom’s birthday, Quinn was taken off ECMO. Just a day after that, she had her chest tube taken out and incision closed. Quinn is barely 21 days old and has already been taken off the ventilator and put on the smallest nasal cannulas, graduated to a crib, is on full feeds and expected to start trying bottle feeds tomorrow! She has not gained very much weight so doctors will be working to potentially fortify mom’s milk to help her grow. We are so lucky to know her and be her parents - she’s the most precious child, full of life and wonderful and we can’t wait to see what the next month brings. 

Update 3/11/24

Quinn did some incredible work in the last week, going from less than 25% in feeds to full feeds. Due to her incredible progress, Quinn came home on April 8, 2024! She’s now met her pawed siblings, seen the outside world, breathed fresh air, seen the sun and met her pediatrician! 

The team at Children’s Memorial Hermann is unmatched. The doctors are top notch and provided Quinn the most aggressive care possible to let her come home faster. We couldn’t have done this without them or the incredible team of nurses. Our nurses really took Quinn in as one of their own - it’s one of the most bittersweet moments of our lives to leave them behind. 

We are so proud of our tiny warrior, she’s truly our hero. We wouldn’t have been able to even relocate without our ECCF grant. We will always be grateful that, in our greatest time of need, there was a caring hand to help us get through it all.