Thank you to my momma for all you help writting this <3:
Back in February of last year, my husband, Brady, and I were your typical newly expectant parents. We talked colors for the nursery and names for our unborn son or daughter. We sailed through our prenatal appointments with little thought to any dangers lurking for our unborn child. It was in the 12th week of our pregnancy that our world began to spin out of control.
The doctor’s word rang in our ears; “We’re concerned about your baby. It may have a chromosomal abnormality.” Within hours we were seated across from a genetic counselor who gently explained all the devastating possibilities; the majority of which never really registered with either of us because we were simply in shock . For a moment I think time literally stood still. Our minds immediately jumped to was this our fault, could our baby survive, would I even be able to make it full term, we felt so incredibly helpless, lost, and terrified.
She shared with us that based on this measurement; it’s likely our child will have either Down syndrome or Turners, and if not those then there was always the chance that there was a heart defect. We spent the next ten agonizing days waiting for the results of our CVS; a painful procedure that was risky to our unborn child but was necessary to provide more information. In the end we were rewarded with the results that all her needed chromosomes were intact! Her? We were having a girl! The tears started again but this time tears of joy. We laughed and cried and called our daughter by the name we had been keeping for her all these weeks; Ella May Beckstead. We enjoyed the news for a few hours before we were thrust into what’s next, as there was still an indicator that something could be terribly wrong, and there was that lingering comment about the possibility of a heart defect.
We were then told we’d need to wait another unbearable six weeks before our baby’s heart was even big enough for the ultrasound to reveal anything so we were left to wait with only our thoughts and fears, and the painfully slow calendar inching by. Finally, in the beginning of our 20th week, we were able to have our follow up ultrasound. Clearly, this visit wasn’t met with the same joyous anticipation that our previous ones were but we were resolved that no matter what the outcome that we were going to do everything in our power to give Ella a fighting chance. However, we were never fully prepared to hear the words that our precious baby had only half of a heart. Ella was diagnosed with a severe congenital heart defect known as “Hypoplastic Left Heart Syndrome” ( hlhs)
Thirty years ago that was a certain death sentence because there was no known medical procedures, short of an infant heart transplant, which many children didn’t survive even when they were lucky enough to get one. We were given hope when we were told about the three stage surgery known as the Norwood Procedure, which would give Ella a fighting chance to survive. You hear these kinds of words and you think you’re digesting them but there was so much we didn’t know. So, we found ourselves drawn to the internet to begin our education but that proved to be a dangerous place to start our journey. As anyone with any illness will tell you; there are beautiful, encouraging success stories that will renew your faith in the possibilities but there are also dark and heart wrenching stories that will paralyze you with fear. We worried would our baby even be a candidate for the 3 surgeries, if so would she be strong enough to make it through, would we ever hold her or bring her home? And if she did make it out of the hospital alive, would she be able to eat by herself, breath on her own or ever leave our house, without fear of her getting sick, would we ever get to celebrate her 1st birthday? Germs can be life threatening for these kids, and could immediately land them in the hospital with even a small cold. The future for Ella could not be promised and never will be. She will always have half a heart and while they can try and help her they can never FIX her. And even if she does make it through the 3 stage surgeries a transplant is always a possibility for her. Although we had our share of dark days, we chose to believe in Ella and her future, no matter how scary it was.
That future began on a beautiful Tuesday morning, September 13th, 2011 when she was delivered by C-section with a team of about dozen medical professionals standing by. Her grand entrance was stage worthy, ensuring her place in the family productions somewhere down the road, as her powerful cries filled the operating room and her color bloomed a beautiful rosy red! To look at her one would never guess what lied beneath her perfect chest. This is not an uncommon beginning for these HLHS’ers, as their challenges begin a few short days after their birth when their hearts are unable to maintain the blood flow to and from the lungs. – My first thought upon seeing her was she “well she looks perfect to me” and maybe I could just sneak her out the door and take her home and save her from what was to come. Maybe they would take one more look at her heart and realize they had made a huge mistake and that her heart in fact was whole. Unfortunately none of the above would prove to be the case.
Ella’s first open heart surgery was scheduled for a mere 48 hours after her birth so we spent the night before holding her, praying for her, and committing to memory the look of her unscarred chest. The medical team wheeled her away at 8:30am with promises that they would take good care of her, and they did just that. Hardest thing im sure I will ever have to do is hand my daughter over knowing this could be the last time I might see her alive. They took time to prepare us for how she would look post op so we would not be alarmed but honestly there is little that can prepare you to see your two day old daughter fully intubated, with her chest still open from the surgery, her tiny body swollen from the excess fluids, and connected to more monitors than we thought possible. But you know what? She was alive and that was the answer to our prayers. There were numerous hiccups along her road to recovery but none that were insurmountable and 50 days after her entrance into this world we got to bring her home!
The idea of home was the ultimate joy and fear rolled into one, as home meant 9 separate medications a day, a pulse/oxygen machine 3 times a day, physical therapy, limitless phone calls to the hospital and her cardiologist, and an endless supply of hand sanitizer but she was home! Each day had its own challenges but Ella had done all the hard work up till now and now it was our turn to keep her safe . A sanitary environment was critical to her recovery, because a simple cold could prove deadly to these fragile babies and because Ella had the nerve to be born at the start of flu season, it now meant we had our work cut out for us. She barely left the house; it was terrifying if we did take her in public as we were constantly in fear that she would catch something that could be life threatening to her weak heart. We had to severely limit all visitors, that is until she let us know it was time for surgery number two.
Ella is now a vibrant 7 1/2 month old baby weighing in at an impressive 17 pounds. She laughs. She touches/scratches our faces. She tries to roll over. She drinks from a bottle, which is not a small feat for these babies who have trouble learning to suck because of the intubation, but most importantly she has stolen our hearts. You may have heard of the quote by Ellen Cantarow which states “Making the decision to have a child-its momentous. It is to decide forever to have your heart go walking around outside your body.” Well, now we know what that means .
Ella will still need at least one more open heart surgery in the next 2-3 years. She will have constant cardio visits for the rest of her life and major restrictions as far as her how much physical activity she can endure, as well as a weak immune. And even all that does not promise that she may not need a transplant down the road. I worry every day for Ella. I pray every night that we will be blessed with one more day with her. I pray that when the day comeskignhgjm that she is old enough to realizes she has a questionable life expectancy we know how to handle it. The reality is we don’t know how long we will have with Ella but we will do everything we can to make every day we have together the better than the last. So needless to say we don’t really live what you call a typical “normal” life anymore, we never will, but we have a new kind of “normal” and its our “normal “
You clearly had it in your hearts to have joined us here tonight and I can only pray that you’ll continue to support the American Heart Association, as it not only supports research and provides education but its very existence gives hope to the many of us who have decided to let our hearts go walking around outside our bodies.
