Heart Hero of the Month

December 2023

Story by, ❤️Mom Melissa 

Ellis Anne Isham

Born March 5, 2021

Ellis’s journey was rocky from the start.  At our first ultrasound at just 9 weeks, her doctors discovered fluid around her body which led to additional testing.  They suspected issues with her heart from the start so we were referred to a maternal-fetal specialist and genetic counselor who gave us a very grim outlook, just a 1% chance that she would make it to birth.  We had many ultrasounds throughout the pregnancy and several fetal echoes and miraculously each scan looked better and better.  The fluid disappeared and her heart looked stronger than expected.  Our doctors set a birth plan, I would be induced at 38 weeks, and she would have a follow-up echocardiogram to clear her once she was born. 

Fast forward to the day she was born, everything went perfectly.  She was perfect.  The room was FILLED with doctors and nurses (honestly expecting the worst I think) but her standard post-birth tests were clear and she was able to stay with us vs. going to the NICU which was a very big surprise.  Matt and I were beyond thrilled because we had prepared ourselves for every other scenario. 

Her echo was supposed to be before discharge from the Women’s Hospital but there was a mix-up and it was scheduled for 10 days post-birth at Children’s Hospital.  We had a blissful 7 days at home once we were both discharged.  She had jaundice, which we were able to treat at home thanks to Children’s Home Health.  Even the daily blood draws were a walk in the park compared to what we had anticipated. 

The day of her echocardiogram arrived and we were sure that her scan would be clear and we would be on our way home for a nap within the hour.  Oh, how wrong we were.  We had a wonderful tech performing the tests who was beyond kind.  We should have realized something was wrong when he kept leaving the room to look for “something”.  Finally, we were transferred to an exam room and told the doctor would be in shortly.  We sat there for about 30 minutes with a nurse coming in and out repeatedly to try and get a blood pressure on Ellis.  This was when it finally sunk in that the news wasn’t going to be good. 

Dr. Jantzen arrived and told us that Ellis had not one but two heart defects.  She had a coarctation of the aorta and also a bicuspid valve and would need surgery immediately.  Everything from that point on is a little fuzzy from the shock.  He calmly walked us through some back hallways and up to the CICU where it seemed like 20+ people were waiting for us.  They quickly took Ellis out of my arms and started hooking her up to more machines than I could count.  The rest of the day is a blur of conversations with different doctors and many painful attempts to get her IVs placed.

The following day was surgery day.  I can’t tell you what time it was at or even how long it took but it felt like a lifetime before her surgeon came in and gave us the news that it was over.  The surgery was a success! 

The following days were long while she recovered but we are so thankful for the staff that took such amazing care of us.  We had a few hiccups along the way.  One major one was a blood clot that formed around her femoral artery and delayed her discharge by a few more days.  We were officially discharged 7 days after her surgery with twice-daily blood thinner injections that we were to administer for the next 90 days. 

Her journey since surgery hasn’t been easy but she’s here and she’s perfect. 

She has many specialists and takes daily growth hormone injections.  Now, almost 3 years later, she is a “spicy” (what we like to call her) toddler who brings so much joy to our family.  Her cardiac journey will follow her through her life, and she may need additional surgeries one day but for now, we are so happy to say she is healthy and happy!