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The Paxiao Family

Baby Rilan

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

After struggling with infertility for two years and doing various interventions, by the Grace of God, Jordan and I conceived naturally. Nine weeks after the exciting news of becoming pregnant, we found out we are welcoming our first boy to the family. We are so in love with our sweet boy and can’t wait to bring him home.

On 8/25/23, we had our 20 week anatomy scan and got news that no parent is ever prepared for. After our scan the doctor came in and shared that our precious boy has a life-threatening developmental birth defect called Congenital Diaphragmatic Hernia. What this means is his diaphragm did not form correctly, leaving a hole and allowing his abdominal organs to travel into his chest cavity and shift his heart to the right side. The main concern with this condition is lung and respiratory development. Due to the lungs being crowded by other organs, they have limited space to grow and properly develop. The organs can also suppress his heart. 

Since receiving this devastating diagnosis, we were referred to UC Davis Fetal Treatment Center where we had several tests including an echocardiogram, MRI, ultrasound, and consults with Maternal Fetal Medicine. Our son's diagnosis was confirmed through these tests as a Left Congenital Diaphragmatic Hernia. His stomach and bowel intestines are in his chest cavity and has pushed his heart to the right side of his chest. With these organs in his chest, his lungs are unable to properly develop and are expected to reach only 33% of volume growth at the time of birth. His expected lung volume, organs in his chest, and heart dextrocardia, our boy's case is considered severe. We interviewed our team and learned that UC Davis does not specialize in this condition and estimated treating 5-10 babies per year. Baby boy would have several specialty doctors that change shifts weekly. These numbers and information did not sit well with us so we reached out to the CDH community we have connected with and researched specialty CDH doctors and hospitals to inquire for a second opinion. 

We were connected with John Hopkins All Children's Hospital in St. Petersburg Florida. JHACH is one of the only hospitals in the U.S. that has a specialty CDH unit and dedicated team just for CDH babies. We scheduled a consultation and they gave us so much hope. JHACH has an entire unit that will be present when the baby is born and he will remain in their care until discharge. We feel so much better knowing he will be in the care of one team and not multiple. They treat at least 60 babies a year from all over the U.S. with an overall survival rate of 95%. We prayed for God to lead us in the hands of the best care and we are confident John Hopkins is just that. There are many moving parts trying to figure out how we can make this work for our family and remain faithful that God is leading our way.

The original plan was that I would be moving across the country alone on December 1st at 34 weeks for close monitoring with a scheduled induction on December 28th. After our consult with Dr. Kays at JHACH and my history of having both girls at 37 weeks, Dr. Kays moved my induction date to 12/16 at 36 weeks. Jordan had planned on staying home for an additional couple weeks to continue working, however, God had different plans. He was laid off work on 11/9. Although this was tough as we are dealing with a significant income loss and risk our health coverage, we feel this was a blessing in disguise. Jordan and Elaina will now be coming with me on December 1st. Although finances will be tough, we are all relieved by this knowing we will take on these big changes together.

We will stay in Florida for as long as the baby is in the NICU and until he is healthy and ready to come home. Unfortunately, that time is undetermined so we really have no idea how long we will need to be there. With so many unknowns of our finances and how we could possibly make this move possible to ensure our son receives the best possible care, I began researching organizations that offer help to families in our position. Thats when I found the Eden Calhoun Charitable Fund. I applied and heard back right before our big move! We were accepted and a huge weight was lifted from out shoulders. With the help and support from ECCF, Tiny Hero, Fore Hadley, Children's Sunshine Foundation, family and friends, we are headed to Florida on December 1st. Unfortunately, our daughter Bailee will not be coming with us and will be staying back with her dad to continue in school and sports. With the help of ECCF we were able to plan for her to come visit during Christmas break for a week. Our sister in-law will be bringing her to Florida to celebrate Christmas and New Years with us. Although the holiday season will be a lot different this year, being together is the best gift.

12/1- Today is the day we begin our big adventure to give our son the best chance at life. We woke up at 2am this morning with as much of our material belongings that we can fit in our luggage for an undetermined length of stay. My mother in law picked us up and we headed to the Sacramento International Airport to catch our flight at 5am. We switched planes in Denver and landed in Tampa at 4pm. We picked up our rental car and as we were trying to load all of our luggage into a Chevrolet Malibu, the manager asked us if we needed a bigger vehicle. We replied, yes, however, the sedan was all we could afford. the manager blessed us and gave us a minivan for no additional charge. We arrived to where we will be staying at Children's Sunshine Foundation around 5pm.

12/3- We have been in St. Petersburg for 3 days now. We have spent a lot of time getting settled into our apartment. Yesterday we spent the day exploring St. Petersburg. We went to the beach, built sand castles, and played in the ocean. We are still adjusting to the 3 hour time different and weather difference and so far so good. We feel relieved to be here knowing that our son can come at anytime and he will be in the best hands. This week we have several appointments at JHACH. We are ready to meet the team in person and get prepared to welcome our little ray of sunshine into the world in 2 short weeks. We want to thank ECCF from the bottom of our heart for providing financial stability to our family while we are facing one of the toughest battles of our life. People like you, make the tough times easier and we are so thankful!

Update 12/31/23

December has been a busy month. Baby boy tried to make an early debut at 34 weeks. We went in for our weekly MFM appointment and learned that I was contracting and 3cm dilated. For the following few days, I was monitored closely. Baby boy decided to turn around and is in the frank breech position so conversations were had about the possibility of having a scheduled c-section. I was nervous about this as I have had two vaginal deliveries. Dad and I dove into research to get him flipped. We did every exercise we could find on the internet with no success. We ultimately decided to schedule an ECV to try and flip him before induction. The ECV was scheduled on 12/27/23 in the OR incase of any complications and they would deliver via c-section. 

My MIL flew out to be with us two weeks early when we had the scare of preterm labor. We celebrated Christmas together, missing our oldest who was unable to be here with us. 12/27/23 we went into the hospital at 5am. Doctors tried the version twice and unfortunately, the baby's heart rate plummeted so they moved forward with a c-section. 

Rilan Robert Paxiao was born 12/27/23 at 9:07am weighing 5 lbs. 11 oz. and 17.8 in. long. He was immediately handed over to Dr. Kays and his team. Before heading up to the CDH NICU, his team rolled him over to us so we could meet him. He is the most precious little miracle boy!

12/29/23 our oldest daughter and my sister in law arrived to visit for a week. I can’t tell you how excited I was to see my biggest girl after a whole month of not seeing her. We are soaking up the time we get together as a family while navigating our NICU stay.

Rilan has been doing the best he can until surgery. He is a true fighter and does not like to be messed with. Originally, surgery was scheduled for 1/2/23, however, Dr. Kays changed that date to 12/31/23. This change was due to Rilan’s stability and other procedures scheduled for next week. This morning, we arrived at the hospital at 7am to prepare for our boy to get his CDH repair surgery. We have many emotions but remain faithful that our boy will be in the best hands and the Lord will carry him through this. Rilan did well during surgery and is now recovering. 

As we head in 2024, we look forward to a year filled with healing. We continue to take each day as it comes and remain thankful for the support we are receiving. We have yet to receive our disability or unemployment so we are extra thankful for this grant this month! Thank you ECCF for your continued support.

Update 1/31/24

Rilan continues to amaze us all! This boy is a true fighter and we are so proud of him. 

Rilan recovered well from his surgery on 12/31 and has flown through his milestones. He was extubated on 1/5 and got his first cuddles from mom and dad on 1/6. On 1/7, Rilan began breastfeeding. He did so well latching and hasn’t stopped since. His medication and CPAP was weaned everyday to where he is now, on .1 oxygen. He does great without it but we have a long flight home so he will stay on oxygen until we get home and follow up with his pediatrician. Rilan has gained weight since he began feeds except for two days. Due to minimal weight loss, he began fortified bottles throughout the day in addition to breast feeding. We nurse every 3 hours and sometimes in between. We offer 20 ml fortified bottles after every feed. He has very minimal reflux that is managed with oral medication. He also takes a multivitamin supplement everyday. 

Rilan got to meet his sister, Elaina and it was just as magical as mom and dad expected. Elaina is already such a good big sister! 

We were discharged on 1/22, just 26 days after our miracle boy was born. We are getting into a routine at our home away from home and are scheduled for our clinic appointment on 2/1. After that appointment we plan to head home to California. 

Mom has built up quite the stash of breast milk with over 9000 ml’s at the hospitals milk depot. Unfortunately, there are no resources to help ship the milk home so we are scrambling trying to figure out how we can ensure our boy has a stash that mom worked so hard for.

We are looking forward to the days, weeks, and months to come in 2024. This journey has been quite the ride. We are grateful for all the support we have received as it helped ease so many burdens and allowed us to be present and focused on our family and sons healing. 

The Paxiao Family
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