“We knew we had a little fighter on our hands and truly a GIFT FROM GOD!”
Ian Gary Stone, 2/1/2016 to 2/1/2016, Trisomy 13, Anchorage, Alaska
We found out we were pregnant with our 2nd baby in May 2015 (Yay!). In July we found out he was a boy (Yay!) so we named him Ian (Gift from God) Gary (after Grampa). At that time we also found out he had what was called Trisomy 13. This was found through a routine blood draw screening then diagnosed for certain, through further testings (CVS). Trisomy 13 is not good we were told. Statistics are not in favor of a good outcome no matter which way you try to look at it. The doctors said we would likely miscarry before week 20, but we didn’t. They also said it is highly possible he will pass away in utero, he defied that prognosis too. If we made it to labor, the doctors said he may not make it through the birthing process, if he did they said he may not survive long. Can you sense a theme here?
HOWEVER…and that is an absolutely God sized however:) From the moment we found out we were pregnant with Ian we were thankful and happy. He was an answer to prayer and we knew he was exactly what his name means, a Gift from God. He was and is our son, our gift, for as long as God would let us keep him and there is no other way we would ever look at him. We had several ultra sounds that showed us first and foremost;) his beautiful face and second, that his brain and heart had some significant defects which were common with Trisomy 13. In his diagnosis ultra sound (11 weeks) they told us he had a build up of fluid on his neck and a misshapen head (paraphrase me) by our 2nd (18 week) ultra sound those had ‘resolved’ and they found he had brain defects (agenesis or missing the vermis), heart defects (transposed great vessels, atrial septal defect and only 3 chambers) and kidney issues. At our third (22 weeks) they said along with the previous findings, he appeared to have bowel issues. At our fourth (26 weeks) they said the kidney and bowel issues had ‘resolved’ and his growth was normal. We are looked at those resolved findings as answers to prayer. We were referred to a pediatric cardiologist who helped us come to the decision that if Ian survived birth we wanted to be in a hospital that would have more interventions than were available in Alaska so we made plans to deliver our son at the Mother Baby Center of Abbott Northwestern Hospital in Minneapolis, Minnesota where there was access by way of Minnesota Children’s Hospital to a Level V NICU if Ian were to need it. Well, I carried our littler fighter for 40 glorious weeks and 6 days! He wanted everyone to know he was doing this his way…rather God’s way! His arrival and beautiful life was miraculous. We went to the hospital around 10 pm on Sunday, January 31, 2016 with contractions every 4 minutes. We were admitted into a labor and delivery room around 2 am, after a brisk 2 hour walk about in the hospital to try to get Ian moving a bit more into position which worked. By 3 am Mommy was more than ready for an epidural:) We got a couple minutes of sleep. Auntie arrived and took over air traffic control – updating the Grammas, Grampas and Uncles as well as guiding them all into the hospital location. Meanwhile Ian’s little heart strummed along at a solid steady 120 -160 beats per minute the entire labor 20 + hours, miraculous! Ian was born alive into this old world at 8:55 am Monday, February 1, 2016, miraculous! He is 1 in 10,000 estimated live births of babes who are diagnosed with Trisomy 13, miraculous! He weighed in at 6 lbs 13 oz, 19 inches long, much heavier and bigger than we were told or had ever expected, miraculous! He was trying to breath on his own but seemed to need a little help from the neonatologists, who where there waiting in our room for such a time as that (we can not say enough about the phenomenal medical staff from Abbot Mother Baby Center and Minnesota Children’s Hospital we were blessed beyond comprehension to have such awesome care for Ian and us). They stepped in and gave him some help breathing but thought their efforts were not working. They were about to hand him back to us to hold him for the brief minutes it appeared we only had. Then he started breathing on his own, miraculous! His little body started wriggling and turning a beautiful bright pink, miraculous! We knew we had a little fighter on our hands and truly a GIFT FROM GOD! The next 12 hours consisted of showering him with as much love as we could pack into time and space, unsure of how long God intended to share His Gift with us. Ian met his Big Brother Elias, both Grammas and Grampas, Aunties and Uncles, Great Grampa, Great Aunties, Cousin, and the most kind, compassionate, incredible medical staff you could ever wish for, miraculous! The thought came to me that if you took any one of our lives and broke it down into percentages spent with our family members over our lifetime then put it on a pie graph and compared it to Ian’s I bet they would look nearly identical, miraculous! He wrapped his little fingers around ours. He got kisses from his Big Brother and everyone! We changed diapers. We fed him with a little eye dropper. He calmed and quieted at the sound of Daddy and Mommy’s voices. He rested his strong, little body against our skin and we breathed each other in. We were a family, miraculous! The Lord helped him fight Trisomy 13 for 12 amazing hours for us and for him, miraculous! After the absolute most precious perfect day, more than we could ever have hoped for, at 8:54 pm February 1, 2016 Ian Gary passed away peacefully from our arms back into the arms of Jesus who had so generously gifted him to us, miraculous! Heart wrenching joyfulness is how we could try to describe that moment. You see, we were truly Given a Gift, Ian wasn’t “taken away” …. He was Given to us… sure, it was no where near as long as or how we wanted but that was never the point…the point was that God Gave him to us as a Gift for the 12 hours we had him. We would do everything all over again 10,000 times to have those 12 hours with our Gift. All we can say is Thank You, Thank You, Thank You Lord for our unbelievably precious son Ian Gary Stone. We will see him again, so very soon.
We have shared more of our journey on our caring bridge site: