“H&H’s Story”
One of the greatest peculiarities of life is that it never really goes as one might plan. Sure, it’s fun to imagine where different paths could lead, but the simple fact remains that very rarely do we get to choose the path that life takes us. This is one of the many ways that God blesses His children, because so few of us would ever willingly choose the obstacles He puts in our way, despite what joy they might bring in the end. For my sister and her husband, the past year has been a long, confusing, often terrifying, beautiful journey. A year ago, none of us knew how much we would be changed by the small, miraculous lives of Henry and Harper Mazurkiewicz.
For most families, the announcement of a pregnancy is a joyous occasion, and for ours it was no less spectacular. After three years of marriage and a long struggle with infertility, my sister B.J. and her husband Mark gathered us together one night and told our family that they were going to have not just one baby, but TWINS! We were flooded with gratitude to God that He would bless us with such wonderful news. At the time, we all believed that BJ and Mark’s struggle had been to conceive and that they were past their trials, but little did we know, God was just beginning His work. B.J. knew that carrying twins meant having a high-risk pregnancy, but having read every published book on the subject of pregnancy and babies, she felt rather prepared to handle the challenge. The first trimester was filled with typical morning sickness, which often translates to all-day sickness, but everything seemed normal and right on target.
At twenty-six weeks, B.J. and Mark were faced with their first of many terrifying hurdles. During a routine visit with her doctor, he realized something was amiss. He noted that Harper seemed to be growing at a much slower rate than Henry, and, to err on the side of caution, he sent her to a specialist in Jackson, TN to measure the babies’ growth on a much higher-quality ultrasound machine. It was there that she and Mark began to grasp that their lives were never going to be the same and their struggles were just beginning. The doctor not only diagnosed Harper with a condition called IUGR (intrauterine growth restriction), a diagnosis which meant that she was not receiving proper amounts of oxygen, blood, or nutrients through her umbilical cord, but he also diagnosed Henry with a condition called CCAM (congenital cystic adenomatoid malformation), or in more common terms, a large mass growing on and covering up his right chest cavity. The babies would have to be closely monitored from that point on, because at any moment either or both could go into fetal distress and die if not delivered immediately.
Devastated. No, that’s not even the right word for how we felt. Words fail in such a situation as this. We barely had time to comprehend the gravity of the situation before B.J. was admitted to The University of Tennessee Medical Center (The Med) as a full-time patient until her imminent delivery. At The Med, B.J. and Mark were greeted by some of the world’s greatest and most renowned neonatologists. Some of whom were ready to take the babies upon her check-in date at twenty-seven weeks. Their logic was that most babies could handle the risks of being premature, but Henry and Harper’s individual problems were far more life-threatening than being born early. They had very little chance of survival with so many odds stacked against them. A few of their doctors, Dr. Jacques Samson included, decided that they would try to hold off on delivery until week thirty-two, though it seemed incredibly unlikely that B.J. would ever go that long without one or both babies going into distress. All you can do in such a situation is pray. And pray we did. We prayed as a family. We prayed as individuals. We prayed as if life depended on it, because, well, it did. We pleaded with God for just one more week. And with every week that passed, the babies grew a little bit more and had a slightly greater chance of survival.
Around this time, B.J. and Mark decided to turn their cutesy blog,www.bjandmark.blogspot.com, about married life into a place to inform friends and family about the ever-changing status of Henry and Harper. From week-to-week, B.J. and Mark shared their knowledge of each baby’s condition, their fears, and the prayers that they so desperately needed. I cannot imagine how one survives life’s curveballs and tragedies if he or she has no faith in God. We could feel God’s spirit moving around us and working through us during this entire time. In addition to friends and family, complete strangers began reading the blog and joined us in praying for Henry and Harper to make it “one more week.” The outpouring of love and support during this time is something that I know neither B.J., Mark, nor anyone else in our family will ever be able to fully understand or repay, but we are so verily grateful for it.
As the weeks passed in the four white walls of B.J.’s hospital room from week twenty-seven, to twenty-eight, to twenty-nine, to thirty, to thirty-one, and then, finally, to thirty-two, it was apparent to us all that God works within His own time-frame, certainly not that of any doctor or hospital. It had been a long, often alarming, five weeks at The Med, but we knew it was the best place for Henry and Harper. Their heartbeats were monitored every hour of every day, and an ultrasound was also performed daily. The doctors and nurses provided exceptional care, but this certainly wasn’t an easy time for B.J.; aside from just being away from home for so long, she also had health issues of her own to battle. Part of Henry’s condition involved a “mirroring effect” of symptoms from the baby to the mother. This means that as Henry’s amniotic sac filled with fluid, B.J. began to display similar symptoms herself. She often had a difficult time breathing because fluid was building up around her lungs. Her blood platelets fell so low that her capillaries began to burst and leave bruising around her face and chest.
When we finally made it to week thirty-two, it was truly the right time to take the babies. On the morning they were set to deliver, the doctors prepared us for any and all possibilities, both good and bad, that could come from that day. We had to ready our hearts for the worst-case scenario. They told us that it was likely that Henry would never take his first breath, because the tumor was taking up so much of his right chest cavity and totally displacing his heart and left lung. If he didn’t die upon being born, it was almost certain he wouldn’t last very long. They told B.J. and Mark to expect a quiet delivery, because surely neither of them would have the lung capacity to cry. It was almost too much to take in at once, but somehow we all managed to muddle through the longest day of our lives.
Before delivery took place, Dr. Jacques Samson and his surgical team gathered around B.J. and Mark to pray to God for a safe debut for Henry and Harper. We all felt immense comfort knowing that B.J.’s surgeon put his faith in God as much as we did. At 11:35 A.M., May 11, 2011, God gave us Henry Mitchell Mazurkiewicz, 3 lbs, 14 oz, and 18 inches long, and two minutes later, He gave us Harper Frances Mazurkiewicz, 2 lbs, 4 oz, and 15.8 inches long. As they pulled Henry out, for a brief, miraculous moment, he let out the most beautiful little cry that his minimal lung capacity would allow, just before he was immediately intubated and placed on an oscillator that breathed for him. Harper, our little rock star, came out screaming, and has been quite the sassypants ever since.
The hours that followed their birth are a total blur. We all moved in seemingly slow motion, and to this day none of it feels entirely real. That afternoon, one of the neonatologists stopped by B.J.’s room as she recovered from her cesarean section to debrief us all on Henry and Harper’s current status. He then filled our hearts and our ears with things that no one should have to hear. He told us that Henry’s “good” lung was just too underdeveloped to open up and function. He told us to prepare our goodbyes, because Henry would not make it through the night. After he left, we stared hollowly at one another as if trapped in a nightmare. Dr. Samson offered us his words of wisdom, that “only God is in control, and He doesn’t work within statistics. We need to keep praying and keep hoping.” We wept. And as broken people, we did the only thing we could do: Pray. Pray. Pray. Weep. Pray. Pray. Pray. This cycle continued until morning finally came and Henry was still with us.
The following days were filled with small triumphs, only to be undone by large set-backs. Dr. Samson warned us that Henry and Harper would be on a sort of roller-coaster of recovery. We could not place too much faith in any progress yet, because they both could backslide at any moment. Henry’s CCAM was much larger than we had anticipated and the “good” lung was much less developed than we had hoped. Just as Henry had his problems, Harper had hers as well. Though she was breathing on her own, she had quite a bit of difficulty with digestion. Her stomach became distended, and doctors feared that if the problems didn’t start to mend themselves, her intestinal tissue could begin to die, which would likely kill her.
We prayed. Henry needed to be transferred to Le Bonheur Children’s Hospital, a Trauma-Three Neonatal Intensive Care Unit, in order to have his surgery scheduled to remove his tumor. The problem was, however, that he was still on the oscillator, which kept him immobile as long as it was breathing for him. After ten long days, the doctors finally made the decision to try Henry’s lung strength out on a ventilator, which would only assist him in breathing. We prayed. It worked! Torn over splitting their time between sick babies at separate hospitals, Mark and B.J. began to pray that God would give them some way to keep Henry and Harper together. A few days after Henry was transferred, Harper’s abdominal distention worsened. As a precautionary measure, her neonatologist, Dr. Joi Samson (Dr. Jacques’ wife) transferred Harper to Le Bonheur as well. Once the surgical team checked Harper out, everything seemed to be doing well, and they determined that she would not need surgery after all.
Days became weeks. Henry’s surgery was scheduled, and once more the scenarios began to fly from the doctors’ mouths. They assured B.J. and Mark that many children “lived full, active lives with just one lung!” Their words were meant to bring comfort, but all B.J. could think was how Henry would never get to play baseball with his friends, play tag on the playground, or be a little boy and play outside in the summertime. I realize how petty and unimportant all of those minor things sound, and they are, I suppose; however, you never plan on having to watch your children fight for their lives with every breath, so it’s only natural to mourn the ideas and dreams you had for them before they were born and before they were sick. The day finally came for Henry to have the mass removed. We gathered around his frail little five-pound body, laboring for each intake of oxygen, and we prayed. We begged for his little life to be spared, and we prayed for God’s will to be done.
An hour after Henry went back for surgery, we saw the doctors wheel him back into his room. Terror gripped our hearts, as we felt that something must have gone awry. But then something wonderful happened instead. B.J. and Mark walked out to the waiting room where we were all on edge, and they smiled. Tears streamed down their faces, but they were smiling. Something good had happened in surgery, something unexpected, and something only God could do. After the doctors removed the CCAM and the bottom lobe of the right lung, they discovered two previously undetected lobes of the right lung flattened out underneath the tumor. Within an hour of removing the tumor, the lobes inflated and the formerly displaced heart and left lung shifted back into place. God wrapped His lovely hands around us and showed His mercy. It’s impossible to explain why He gave us a miracle that day, and we certainly know that things could have gone very differently. But our little Henry made it through the surgery, and without question we gave God all the glory.
The weeks following Henry’s surgery were not easy. He was in quite a bit of pain, and to keep from damaging his very fragile lung tissue, he needed to be weaned from the ventilator. Slowly, but surely, his little lungs grew. After three weeks on the ventilator, he was finally taken off of it! The tube was removed from his throat and he was placed on oxygen through a nasal canula instead. In the meantime, Harper continued to grow stronger and bigger. By the time she reached four pounds, she was ready to go home. On June 25, 2011, Harper ventured forth from Memphis and made her way home to sleep in her own bed for the first time. Her arrival at home, however, didn’t necessarily signify a return to normalcy. It broke B.J. and Mark’s hearts to leave Henry behind at the hospital, and when they were in Memphis with him, they couldn’t stand to leave Harper. B.J. and Mark, along with my mother, figured out a system so that someone was always with Henry in Memphis and someone was always at home with Harper. This system continued until just last week, August 4, 2011, when sweet, little Henry finally joined his sister at home. His journey home was a bit bumpier than Harper’s, but he made it there nonetheless.
Though my Henry and Harper are home at last, they have a tough road ahead of them. Their doctors have prepared us well for what the next year will look like for Henry and Harper. Because of their incredibly compromised immune systems, they cannot be exposed to anything potentially harmful. Unlike most first-time mothers who get to show off their babies, B.J. is under strict orders to keep her children isolated for at least their first year of life. Any virus, or even a common cold could send Henry back to Le Bonheur. They are both still very weak, delicate babies, but they continue to get better everyday.
This wasn’t what B.J. and Mark planned for themselves when they envisioned having children, but as B.J. said it herself, “even though this situation...was not MY plan, I am so blessed to be [Henry and Harper’s] mom, and I know that [God’s] plans are so much greater than my own...Life is hard, but God is good.” Despite everything they’ve endured and everything they’ve yet to endure, Henry and Harper’s story is one of hope. In the short time we’ve known these sweet, special children, we have learned to love each other a little more tenderly, lean on each other a little more trustingly, and above all else, curl up in the merciful hands of our Lord and God and know that we are safe in His promises. After all, God is good all the time.
