Eli's mother shares about Mighty Eli and his journey since the NICU.
My husband and I have been married for 13.5 years - Eli is our oldest at 8 and his little sister Claire is 5. We have two dogs - Annie and Callie, and Eli is getting a service dog, Leo in summer 2022.
We found out we were pregnant in February of 2013 after having suffered a previous loss. Everything was going well until our anatomy scan at 19 weeks. At that appointment we found out that Eli had spina bifida and hydrocephalus. Not being a candidate for the intrauterine surgery that is available for spina bifida, we knew that Eli would have surgery once he was born to repair his back and place a VP shunt. It was then that we knew we would be spending time in the NICU.
Eli was in the NICU for 2 weeks. There were many hard parts of having Eli in the NICU - one that really stands out is having to leave him at the hospital once I was discharged home. Not being able to develop that bond with your baby right after birth is very hard.
Being first time parents, on top of having had a baby in the NICU, the transition home was a hard one. We were both worried about possible medical complications that could occur, and we didn’t have the experts there to help us know if what we were experiencing was typical baby behavior or if something was wrong.
In addition to Eli’s spina bifida and hydrocephalus, he has also struggled with some additional medical complications that has contributed to developmental delays and sensory processing disorder. Because of all of this, we knew early on that Eli would require a number of different therapies.
Physical therapy, occupational therapy and speech therapy have really helped Eli with where he is today. He still works very hard in all of these today too.
We were told about Bee Mighty from one of Eli’s OTs. She suggested applying for this grant to help off-load some extra expenses we had.
A typical day for Eli includes school and then depending on the day either therapy or home. During the weekends, we like to do things with friends and family!
Do not hesitate to reach out for help - this is never how anyone imagines what parenthood and the start of their babies lives will be like. It is very overwhelming. There are lots of resources and supports out there so that you don’t ever feel alone.