Ronald McDonald House RBC Race for the Kids
I’m participating in the RBC Race for the Kids to raise funds to support the Ronald McDonald House and the services they provide for families, including my own. #RBCRacefortheKids
Its hard to believe all we have been through, but it is truly a miracle we are where we are now. Jayce has a story I have shared with some, but not to the whole public… but here it is: (buckle up! Haha)
Jayce was small for gestational age (also called intrauterine growth restriction) and I had to be induced at 38weeks. He had some minor stuggles initially with blood sugar regulation and developed significant jaundice requiring treatment at the hospital before we went home. He also was found to have a heart murmur and upon testing was found to have congenital heart defects including a VSD (ventricular septal defect) and a PDA (patent ductus arteriosis). We were told these would be monitored, but that he was stable and we were able to bring him home as normal. And with that the rollercoaster had begun… We had cardiology and pedatric visits scheduled for right after getting home and our journey began. We had more weeks with MD visits than without them for a long time (checking his growth and his cardiac status) over the course of his near 5 months now.. thankfully lessening in frequency more recently.
Back to the story.. We had a cardiology recheck when he was 5 weeks old and went to the appointment knowing he would have another echo scan and thinking that at worst they may determine he needed medication or at best that he was remaining stable and we would just stay the course and wait. To our utter shock we ended up being told that we could not go home, but that he would need to be admitted to the ER and transferred over to the cardiac ICU. They discovered in that echo that as his PDA was closing it affected his aorta. He developed a coarctation of the aorta which is were there is a resulting blockage, which for him was severe and causing decreased heart function. We had no idea this would be in the realm of possibility of what we were walking into! So forget going home, we were taken down to the ER at St Paul CHILDRENS and he was started on IV medicine while we waited to have an ambulance transfer to the Minneapolis location where they had the cardiac ICU and surgeons. He would need surgery. How heartbreaking!
At CHILDRENS he underwent a repair which involved removing the blocked segment of the aorta and reconnecting the ends. Afterwards the doctors showed us a photo of how blocked it was and we found out then that it had been 90% blocked. It was astonishing! We spent a week recovering and were able to then return home. He has been on blood pressure medication 3x per day since, and was also on a diuretic for a while too. He has since gotten off the diuretic and has shown improvement in his heart function, and at his last scan showed a return to normal function. Thanks be to God!
In this journey (as if that hadn’t been enough already) we also had an event where Jayce’s umbilical hernia became incarcerated which needed an ER trip.. of course, but it did reduce and so we didn’t need immediate surgery however the next week he did have to undergo surgery to repair the hernia at which point he was 14weeks old. Since the second surgery we have been blessed with a period of calmness and near normalcy.
Jayce has his next cardiology appointment on August 9th and we are praying for continued miracles to heal the remaining holes in his heart and to allow him to discontinue his blood pressure medication. (Update: Jayce's heart is doing great! His function remains normal and his blood pressure is slightly elevated but equal in the upper/lower body which is fantastic. The doctor said we can try to change his medication to a different one that would be only1-2x/day so we wouldn't have to do a 1am dose anymore (hooray) so are working on getting that change made as soon as we get the insurance approvals figured out. His VSD is improving and is pretty small now and so we hope by next time we go back they tell us it has fully closed. We don't have to go back for 6months which is the best news, it's a new record!)
Along this journey (which has been truly hard, but has also given us a battle tested spirit, able to handle anything) we have been blessed by prayer warriors joining alongside us and God’s total provision throughout. God has unbelievably paved the way in small (seemingly unseen) ways and been clearly present constantly, making all the shocking, challenging, heartbreaking, and exhausting moments we have journeyed through bearable and allowed us to see Him and provide a testimony of His glory. Jayce was knitted by God and He is definitely not done yet!
Looking at Jayce now you would never guess he has been through all this trauma. He is so strong and active in the world. I cannot wait to see what he will do! From ventilators to unstoppable, go Jayce go!
Please consider supporting me and Ronald McDonald House families from across the midwest and throughout the world. We are so excited to walk to support this organization and give back, as well as for it to be a symbol and celebration of how far we have come!
Thank you for your support!
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