Happy CHD Awareness Week!
Last year I started what will be a yearly tradition for Mylah's blog. I started sharing other Heart Warrior's stories during CHD Awareness Week. This is our way of spreading awareness and stories and learning about other families who live with the same things we do. This year I have the participation of the sweet Heart Families of these Heart Warriors. I am so excited to share all their stories!
Here is the very first story about Heart Warrior Eva, shared by her Mom , Jennifer:
Five years ago, I sat holding my youngest child in a desperate holding pattern. My husband and I were counting the hours and minutes until her life saving operation and trying to keep the mood light by watching Sunday night college football. Boise State and Nevada were trading scores in a game that seemed unbelievable…four overtimes, and a final score of 69-67, Boise State on top.
In retrospect this anomaly of a game was quite a blessing. While neither one of us had any interest in either team playing, we still found conversation in the tit-for-tat scoring of the two teams, and in the game play that seemed endless. It diverted our attention from the gravity of the situation, as our daughter, Eva, lay listless in my arms. She was fully knocked out after days of propranolol and morphine injections intended to keep her from having her repeated and severe tet spells.
In between scoring drives I would gently shake her, or roll her from side-to-side, hoping to arouse her one last time before midnight, the dreaded time of “no return” for a last meal. I had been trying for hours in my hopeless attempt to wake her from her coma like state, but was not having any success. My anxiety increased, as the minutes ticked by and the hour hand crept closer to the 12. In my mind the only thing I could provide for Eva, the only way that I could mother her, was to feed her, and even that had been taken away.
The rest of the cardiac intensive care unit was quiet that evening, except for the occasional beeping of the alarms, or complaints of an unhappy baby….and I took peace in that too, yet my tears continued to flow. They worked into a steady stream, until finally the clock’s hands pointed to the 12, and I knew that my time to help Eva was over. I reluctantly placed her in her crib, adjusting her so that the wires and oxygen tubing would not tangle up. I gave her a few more kisses, and smoothed the short baby fine hairs on her head. Hipo followed behind me, and then took my hand, and we headed to our assigned parent room. It would be an early morning for us.
I don’t remember much from that night. I imagine it was a fitful sleep, but I do remember the alarm sounding, and it was time to go, time to sign away our daughter to the doctors who would mend her broken heart. I wondered if in time, my heart would mend too.
While I had muttered silent prayers that Eva would awaken from her deep slumber the night before, I prayed in the morning that she had remained blissfully asleep, unconscious to what was about to happen, and the probable gnawing feeling in her stomach since she hadn’t eaten in many, many hours. Luckily, my prayers had been answered. We arrived in Eva’s bay to find a sleeping baby. I asked the nurse if she had managed through the six hours we were gone without a tet spell, and I was assured that she had. I was hopeful that this was a positive sign for the day to come.
We immediately began signing the plethora of papers that would permit the hospital and doctors to repair our gravely ill child, and then we talked with anesthesia. A female, Eastern European fellow came to talk to us, and informed us that the doctor would come to pick Eva up for her surgery in a few minutes, and to not be “alarmed” as he would just carry her away. I found this discovery oddly comforting, and sure enough, when the anesthesiologist came in he gently scooped her still listless body from my arms, and carried her to the OR. While my heart was breaking into a million pieces, and the tears flooded my face, I felt a still serenity, and calmness that wasn’t expected as the kind doctor carefully carried my miniature child in his strong arms. I felt a loving kindness there, and in my heart I knew things would be alright.
We found ourselves in the surgical waiting room, surrounded by other worried parents and families. I found myself people watching, having empathy for the families with worried expressions and wringing hands. I found myself hoping and praying for positive outcomes for them as well. I passed the time by e-mailing friends and family, people that I had come to rely on for support. Nearly two hours into our wait, the first report came. They had finally gotten Eva on bypass. Once on the operating table, she had apparently experienced tet spell after tet spell, making it nearly impossible for the doctors to place the many lines in her veins that would be needed to sustain life. Each tet spell caused her vessels to clamp down, diverting the much needed oxygen to those important organs like her brain, and lungs. I found myself shaken by this news, but held on as I still felt a calming presence somehow telling me everything would be alright. After all, they had managed to get her on bypass – and from here, her surgeon could work his wonders.
Several more hours passed, and we were finally greeted by her surgeon, who calmly and quietly escorted us to a quieter room, where other people watchers would not be able to overhear the details of our own family’s ordeal. First he said that she was off of bypass, they were closing her up, she would need to remain on the ventilator, but that over all things had gone well. He explained that he did not repair the hole between her atriums, and couldn’t find one of the smallest holes between her ventricles during surgery, although he had successfully patched the very large hole. He also explained that her pulmonary valve was not salvageable, and that he had to remove it, and widen her right ventricle outflow tract by placing another patch, in order to facilitate the flow of blood to her lungs, but overall he was happy. She had done well. We would get to see her in a few hours.
The unimaginable relief I felt was mixed with a certain anxiety, a yearning to hold my baby, to touch her and see her chest rising with every tiny breath. The time between our visit with the surgeon and our reunion with Eva seemed the longest, a moment for sure, but still a moment that drug on for an eternity. When we finally laid eyes on her, she was laying prone, a large bandage covered her newly repaired heart, and drainage tubes were removing errant blood. Her chest was in deed moving up and down, in rhythm with the loud whirling of the ventilator parked next to her bed. Two columns of IV medicines sat at her opposite side, providing drugs and nutrition, and several other lines fed into her body to record data, provide emergency pace-making, and supply quick boluses of medicine. There she lay, beautiful in perfection. I doubt many could see it, beyond those lines and tubes, beeping machines and wires, but what I saw that day gave me hope. My daughter’s broken heart had been repaired.
While her recovery was not seamless, it was quick. A collapsed lung, and fluid around her heart set her back only slightly. She was home before the week was up. I watched in amazement as the weeks and months passed, and my sick little baby developed into the rambunctious toddler she is today.
Today is a celebration! I celebrate five years of Eva’s repaired heart. While I know Eva’s repair was not the end of the road for her and her heart adventures, it closed the chapter on a stressful beginning to life. She will need further intervention, but by God’s grace, and those talented, loving, wonderful doctors, she is with us today, two years later.
Eva Post Op:
Eva and her Daddy
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