Happy Heart Day!
Nine years ago today, just 8 weeks after we became parents our precious baby girl had open heart surgery. She was a very sick little girl. Mommy knew best despite the many, “oh she is fine” remarks. I kept at my gut feeling that something had to be wrong.
This part of her story is one that touches her daddy daily. The strength he saw in our tiny little gift that day and the days directly after moves him in life to do hard things repeatedly.
If you’ve never heard the story of this extremely hard time in our past let me fill you in. It is a story of a heart the size of a walnut that will make you burst with love and joy. That is her life mission after all; to spread joy and strength in enormous amounts!
The moment our precious baby was born, and quite honestly while she was growing in my belly. I knew something was not right with our sweet gem. All our appointments led us to believe everything was fine. However, my gut persisted to say “keep telling people something is off”. A few weeks before she was born I started to have issues with my blood pressure being extremely high and I was put onto bed rest. It was so strange I felt totally fine, but the monitors said my body was struggling. After back and forth and all the tests we could do, the doctors and us decided we would induce at exactly 37 weeks before things got dangerous. The day of induction I showed the numbers for pre-eclampsia. In previous posts here and here I talk about the details of her birth a bit more.
Fast forward to 3 weeks old. She was just not gaining weight and I felt like she nursed all the time. She was sleeping so much, and from all the literature I read newborns slept all day and fed all night. Well she slept more than she ate. Nursing made her sleepy. My gut continued to scream, “something isn’t right!” The doctors all assured me everything was fine. She was just small. Except wait, at her one week appointment when the doctor told us she had a faint heart murmur. That diagnosis hadn’t been revisited, why? Lots of babies can have heart murmurs when they are born, especially small ones. They usually just grow out of it. So we were told then. At this point I decided to take a new approach and make an appointment at the hospital with a lactation consultant. Perhaps there were nursing issues that needed to be sorted out, and that was all it was. We went to the appointment on Christmas Eve that day, and the lactation consultant there also used to be a NICU nurse in the Neonatal Intensive care unit at a Chicago Children’s Hospital. She took one look at Zephie nursing, and told us “This baby is very sick, and she needs help right now.” Aside from panic, I was so relieved that someone finally believed me! Sadly the journey was not instantly better though, the advocacy continued.
She was admitted through the ER with the diagnosis “Bacterial Infection” About as broad as it gets. I will come back at a later date to retell this part of the story as I am still traumatized to this day about it. In short, she did not have a bacterial infection, she had two holes in her heart. She was not only misdiagnosed, but also was given the wrong treatment to a baby with two holes in her heart. Treatments that could have very easily ended her life then.
Once we were on the right path, with the right doctors in place. We quickly moved towards a plan. We lived in Medford, OR at the time. We were referred to a cardiologist in Portland, OR immediately. In the middle of winter with a snow and ice storm along the I5 corridor we were in for an adventure. Her pediatrician at the time was able to get a cardiologist to come in on his day off on New Years Eve to see Zephie immediately! The only problem was the 5 hour commute in the storm. We were asked if we wanted to be life flighted, taken by ambulance or risk the one hour of no cell service and drive ourselves. Ultimately we took the risk feeling confident we had done the drive enough times. It was by far the scariest drive we have ever done! We made it though and when the cardiologist saw her he declared that yes she would need surgery, and soon. He thought with medication it could possibly wait a few months. However after a week of monitoring her very closely they determined it could not wait and she was declared failure to thrive at that point. Not a phrase you want to hear about your precious baby! Equally as scary was that she was struggling to live every second and was about to have a major surgery being put onto life support.
The next couple weeks before she had her surgery were so bittersweet. They placed a feeding tube in her and we were supplementing breastmilk with high calorie formula. Her pediatrician told me that he was pretty sure the only way she was chugging along as well as she was with the heart defects was from my superhuman breastmilk. He joked I could get double the price for it on the market. While I know this is a complete joke on his part, I can’t disagree our bodies know what our babies need! We spent every day enjoying all the little things our sweet baby could do, every breath, smile, poop and noise! This was an especially hard time for our extended family as well, because the cardiologist told us not to let anyone hold her until after she was healed from surgery. Any little cold or germ could be deadly to her with the state she was in. That was hard! Another part I recall from this time was how cold she always was. So we constantly had her wrapped up like a burrito in several blankets!
For those that are curious she had an ASD and VSD repair. The VSD was in a rare spot and required them to put a clamshell device into the center of her heart. A risky surgery, only 3 had ever been performed in the US prior to hers. Risk of scar tissue, or the heart rejecting the a foreign object was a huge scare.
The surgery itself is what you would think. It was so hard to see her go through it. She was incredibly swollen, and on pretty serious pain medicine. Afterwards she lost a ton of blood that had to be replaced, and prevented us from seeing her for a few hours. In the end, it was a huge success and we are incredibly grateful for the team of doctors at her hospital!
Today, 9 years later we celebrate the success of that surgery. We celebrate all the joys that sweet child gives to the world every single day! So much gratitude for her, and all the doctors that got us through that hurdle with a huge success. She recently had a check up and the cardiologist was beaming with pride at how amazing her heart looks and how well her heart has accepted the device inside her. It appears the heart grew around it as if it was always a part of her. Couldn’t have turned out any better!
Happy HEALTHY HEART Anniversary Miss Z!